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Teenagers: Living With Undiagnosed Endometriosis

For 29 years, I have lived with endometriosis. Nineteen years ago this month, I was diagnosed with endometriosis via an outpatient surgery called laparoscopy. (By the way, this type of outpatient surgery is the definitive method for diagnosing endometriosis).


In the first ten years that I lived with endometriosis, I knew something must be wrong but I didn’t have a name for it. It wasn’t until March 1992, at the age of 23, that I was properly diagnosed with endometriosis.

Looking back, I am truly amazed at what I experienced in those first 10 years. That picture of the woman on the floor above triggered memories for me of how much time I spent lying on the floor in years past. Lying on the floor of the bathroom was a common thing for me because nausea and vomiting were a major problem for me in the early years.

I have written about endometriosis in regard to teenagers HERE and HERE. As you can see from the outpouring of comments on these posts, women who have lived through teen years with endometriosis symptoms are passionate about supporting girls who are currently going through similar experiences. They are eager to help these girls because they remember all too well what it felt like to live with endometriosis as a preteen or as a teenager.

I’ve also written previously about some of my own personal (least favorite) memories of being a teenager living with endometriosis.

Also, I was interviewed during Endometriosis Awareness Month in 2009 by Amy Jussel of Shaping Youth for the purpose of helping preteens/teens and their parents know what to look for, when to suspect endometriosis, and what to do about it:


I am passionate about the topic of endometriosis awareness. I am particularly interested in the well-being of preteens and teenagers who are living with undiagnosed endometriosis because I remember what it felt like as if it were yesterday.

Blacking out from the pain caused by endometriosis, vomiting with periods, excruciating abdominal pain that affected my quality of life in profound ways, severe hemorrhaging, frightening blood clots, intestinal pain, bladder pain, and so much more were my “normal” for many years.


When I was in high school, there were many times that I forced myself to go to school but was then physically unable to make it through the day. I was a straight A student and I WANTED to be in class. Nevertheless, any time I would reluctantly drag myself to the nurse’s office because my body refused to cooperate with my strong desire to be in class, the nurse always treated me as if I were some slacker who simply wanted an excuse to skip class. Nothing could have been further from the truth.


Once the nurse gave up on me being able to go back to class and she let me call for a ride, I would wait out by the front door of my high school. There were two stairways… one on either side of the short hallway that led out to the front vestibule area. There was a heater vent there. My high school didn’t look as dingy as that picture above. However, that heater vent reminded me of how I would sit on the floor, curled up and bent over in front of the vent as I waited for my ride.

It seems like the worst of these times in high school happened during senior year because many of the times I waited for a ride, my friend Nancy was there, by my side… keeping me company, cheering me up, and waiting for our ride. (There was some sort of rule senior year that you could schedule your study hall for last period and be able to leave before regular dismissal time. Somehow we managed to leave early without getting in trouble thanks to that awesome rule). I honestly don’t know what I would have done in my teenage years without Nancy’s support. She was always there for me and I will be eternally grateful for her support during one of the most challenging times in my life.

Eleven years after we graduated from high school, it was Nancy who stood by me as my maid of honor.

Nancy_Jeanne_Wedding
My Wedding Day, 1998


In any event, I really don’t want to get too dark and dreary talking about how difficult is was to be a teenager living with undiagnosed endometriosis. Quite the contrary. I decided to write this post in the hope that, like the other posts I have written about teens living with suspected endometriosis, teens and/or their parents who are searching the Internet for information might find this post and hear this message:

IT GETS BETTER.


Without providing an elaborate list of the many steps I have taken between my teens years and now to cope with endometriosis and manage my symptoms, I’ll just say (in a short, simplified list) that after having multiple surgeries; trying various medications; investigating alternative medicine; finding that certain things (i.e. acupuncture!!!) have helped me greatly; and finding doctors who are knowledgeable, highly skilled, trustworthy, compassionate, and ethical… my endometriosis is much better-controlled now than it was years ago.


There is no cure for endometriosis. However, there is hope. There are a great number of treatment options (some of which are generally not mentioned by Traditional Western medical doctors) available. It takes time and persistence to learn about everything that is available (and there is a minefield I will generically label “scammers” to watch out for) but it IS possible to get pain relief or reduction and more.

One caution: To elaborate on what I mentioned above, there are many scammers who prey on endometriosis patients. There are doctors who call themselves “endometriosis specialists” but who I would not want treating me! It is absolutely imperative to find the doctor who is right for you. This process can be challenging and confusing. Just bear in mind that some doctors are very hyped up as being “experts” but that doesn’t necessarily mean anything. There are doctors who are great at self-promotion but that doesn’t necessarily mean that they can deliver on their promises.


Living with endometriosis is challenging. Getting diagnosed in the first place is typically challenging too. When you’re dealing with an illness where 10 years from onset of symptoms to diagnosis is the average, there is obviously much room for improvement in getting people diagnosed earlier.

No matter how challenging endometriosis can be (to get diagnosed in the first place or to live with it once diagnosed), things can get better. There are options available for managing symptoms. They may be difficult to find. What works for one patient may not work for another. Researching and making sure that options are safe and effective (as opposed to marketing scams and such) is very important. Mutual support between fellow patients is crucial and incredibly helpful.

My point is not to have a fairy tale ending here. There is no cure for endometriosis. In that sense, there is no fairy tale ending. However, things can get better. It is important to have hope. I am 42 years old. I have lived with endometriosis since I was 13 years old. That’s a large proportion of my life! I remember what it felt like (in my teens and most of my 20s) to lose hope, to be very scared, to be afraid I would never get pain relief, etc. I don’t feel that way anymore.

I have a sense of peace now that I didn’t have in my younger years.


Are things always peaceful? No way! Just ask any of my friends or loved ones. I can vent with the best of them. However, when I compare my outlook now with where I was at in my teens and 20s, it’s like night and day.

Despite the fact that I have been diagnosed with a large number of chronic conditions since my endometriosis was diagnosed in 1992 (many of which are co-existing conditions to endometriosis), I don’t feel the sense of desperation and hopelessness that I used to feel. Years of mutual support, support groups, meeting people online who “get it”, learning from other patients about things I never would have learned about from my doctors, doing my own research/reading, advocating for myself, and working with other patients to try to increase awareness of this serious illness have left me feeling empowered.

Please sign the endometriosis awareness petition. The comments left on it in the optional comment field by some of the signers bring me to tears. The more people work together, the better off endometriosis patients will be. By the way, thank you to everyone who has been sharing the petition link on Facebook and Twitter and those who have Facebook ‘liked’ the petition page. The number of people signing the petition has really picked up recently. Let’s keep it up!

An estimated 89 MILLION women & girls worldwide (conservative estimate) have endometriosis!

“This makes endometriosis more common than AIDS & more common than cancer”



Here’s a shorter link for sharing it on Facebook & Twitter:


GoPetition



This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Teenagers: Living With Undiagnosed Endometriosis

55 comments

1 JennNo Gravatar { 03.07.11 at 3:56 pm }

Such an incredibly important topic! What a great post for Endometriosis Awareness Month.

I get sick to my stomach when I think of all the young girls out there who feel alone and isolated. It is unacceptable that diagnosis takes an average of ten years! It is outrageous that girls detail their symptoms to their doctors, only to be told nothing is wrong with them, or their pain is “normal.” This has got to change!

I pray girls suffering with endometriosis symptoms, and their parents, find this post and learn they are not alone and there is hope.

Thank you Jeanne!!

2 JennNo Gravatar { 03.07.11 at 3:58 pm }

p.s. I love your wedding picture! I am so happy you had Nancy to support you through those tough times.

3 DianeNo Gravatar { 03.07.11 at 7:46 pm }

I was sick from my very first cycle (at age 12), but wasn’t diagnosed until I was 21. I’ll never forget the pain, and the odd feeling that came with being put on birth control pills at age 12 (that did nothing to make me feel better). I’ll also never forget the endo-related humiliation I felt as a teenager, especially the time I very visibly bled through my clothes while on a lunchtime date, which I didn’t know about until a teacher told me after lunch – and I had to take a final exam right then, so I couldn’t go home and change! (I didn’t do well on the exam.)

Today, 20 years later, I am infertile and still in pain most days. My husband read this post with me… as I identified with many of the feelings Jeanne mentioned, he held me with a sense of sympathetic horror, saying he wished I’d never had to go through all this, back then or now. I can’t change the fact that I have, but I hope we can increase real awareness so that future generations of teenagers don’t have to go through that pain, humiliation, and sense of alone-ness.

4 CassieNo Gravatar { 03.08.11 at 7:14 pm }

Very touching post Jeanne. This could also apply to anyone suffering from any chronic and undiagnosed illness. It made me feel better and I’m 28. :)

5 JeanneNo Gravatar { 03.08.11 at 11:12 pm }

Jenn:

Thank you. I agree that it’s important to cover this during Endometriosis Awareness Month since there is typically such a time delay from onset of symptoms to definitive diagnosis.

I too am really troubled to know that so many young girls are out there not understanding what’s happening to them (and feeling alone). It really is unacceptable that diagnosis takes so long! I totally agree that it is absurd for doctors to dismiss endometriosis symptoms as “normal” for people of any age. It really does need to change.

If sharing our experiences online helps any teens (or parents of teens) who are experiencing what appear to be endometriosis symptoms to find answers and relief, that will be great. There are many women and girls who do “get it” and there is hope!

Yes, thank goodness for Nancy!!

Diane:

I can only imagine how strange it must have been to be prescribed birth control pills at the age of 12. I’m sorry that they didn’t provide you with any relief. The first type of birth control pill that I was prescribed for my endometriosis symptoms (at age 23) made my symptoms worse. I went through many brands of birth control pills in my 20s.

Yes, I will never forget the times of humiliation (such as you described) either. It was truly traumatizing. I’m so sorry you went through that too! Thank you for sharing your experience here. I know (from firsthand experience) it isn’t necessarily the most pleasant thing to talk about but I think it is imperative to be real about the effects endometriosis can have. By being candid regarding our past experiences, we may have the opportunity to help someone reading this who thought it was “just them”. I know I sure would have appreciated knowing as a teen that there were others like me out there! I appreciate you being so candid; it really could help someone out there.

I am really sorry that you are dealing with both infertility and pain. I’m glad your husband is such a great support to you. I hope we can increase real awareness of endometriosis too. Like you said, I don’t want to see future generations of teenagers going through such difficult experiences!

Cassie:

Thank you. I agree that much of this post can apply in a more general sense. Whether a person’s undiagnosed condition is or isn’t endometriosis (which only a laparoscopy can tell definitively)… the sense of isolation, the horrible feeling of being misunderstood/not believed, and the need to beware of scammers (who prey on the chronically ill) are all pervasive issues that can apply in other situations as well.

I think about you often and hope that you are going to get some relief of your own symptoms of unexplained origin very soon!

~~~

Jeanne

6 Jannie FunsterNo Gravatar { 03.09.11 at 6:43 pm }

Jeanne, you were a BEAUTIFUL BRIDE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks so much for sharing that photo!!!!!

:)

:)

:)

Until I had scopes [Editor's note: Jannie is referring to the surgical procedure - a laparoscopy - that's used to diagnose and remove endometriosis] and such at about age 36, I never knew how pervasive my endo was. I had thought my severe cramps as a teen and well into my 20s were normal. I wish I’d a known.

So AWESOME you are getting this word out to help those who will read this.

xoxoxo

7 JeanneNo Gravatar { 03.10.11 at 8:03 pm }

Jannie,

Thank you! ;)

Wow! I didn’t realize you were 36 when your endometriosis was diagnosed. I’m sorry you were among the many people who grow up thinking severe cramps are normal… and that you know what that pain is like.

Hopefully getting the word out will help future generations of girls to know that these symptoms are not normal!

Jeanne
xoxo

8 Jannie FunsterNo Gravatar { 03.30.11 at 5:47 pm }

Hi again, Jeanne, yes I was 36, long time to wait.

Just went back and re-read this post, prompted by your Endometriosis Month recap. Tho I didn’t go through the pain you write about here and missing school, I do remember being doubled up in bed a lot at home.

THANK YOU again, for this post.

And for all you do to raise endo awareness. I know all your work is and will continue to pay off by helping others!!

xoxo

9 JeanneNo Gravatar { 03.31.11 at 1:25 am }

Jannie,

I’m really sorry you were doubled up in bed a lot when you were younger. :(

Thank YOU. ;)

Jeanne
xoxo

10 TaylorNo Gravatar { 05.06.11 at 12:01 pm }

Hello. . .
I am scheduled for my first laparoscopy in a week. Ive been doing research to find out what could be wrong and most of what i find say either endometriois or congestive pelvic disorder. And eventually all the things i looked up led me to you. . .

Ive never had surgery before and ive always been relativly healthy. With the exception of a cough here and there. So im a little scared about what could happen. One of my biggest fears is not ever being able to have kids. im only 18 but it is something i want sometime in my life. . .

I was hoping in could get some insight from you about what to expect with the surgery and everything. More signs for me show congestive pelvic disorder than endometriosis, just cuz the symptoms are more on target with what im dealing with.

Anyway. If you could email me, that would be great. The whole surgery thing freaks me out.

Thanks
Taylor

11 JeanneNo Gravatar { 05.08.11 at 1:47 am }

Welcome Taylor!

I should probably begin with my disclaimer.

First, good luck with your laparoscopy in a week. A laparoscopy is the only definitive way to know for sure if you do or don’t have endometriosis. I’m assuming the other condition you mentioned that they are looking for is pelvic congestion syndrome? I actually have that too. After my 2003 surgery, my surgeon told me I had “suspected pelvic congestion syndrome (PCS)”. He told me he was unable to confirm it because he did not have anything set up with radiology headed into that surgery (nor was the operating room set up for long enough to add a procedure). He was basing the suspected diagnosis on what he saw… combined with the symptoms I’d had. In my 2004 surgery, he was prepared to have the venography done to rule PCS in or out. It ruled it in. So, it is possible to have both endo & PCS.

If you are looking for general information regarding what to expect with a laparoscopy, please take a look at a post I wrote awhile back that talks about it:

“Jeanne’s Endo Blog”: What Can I Expect From Having A Laparoscopy???

I understand your apprehension about surgery and I remember my first surgery like it was yesterday. It is normal to be nervous and have fear of the unknown.

As far as fears about not being able to have children, estimates for infertility amongst those diagnosed with endometriosis are approximately 30-40%. That means that 60-70% do not experience infertility. While it is normal to have concerns about whether this could be an issue for you in the future, all you can do at this time is make informed decisions to the best of your ability, advocate for yourself, network with fellow patients, search out the best doctor(s) you can find, and form a good working relationship with your medical team.

I have found alternative medicine very helpful. For example, I am a big proponent of acupuncture. I have been getting it for 10 years and wish I’d started it sooner! I just went today, as a matter of fact. Homeopathy has helped me too. If I had known in my teens what I know now!

Hopefully the post I listed will give you some insights but please don’t hesitate to post questions here. It’s very difficult to sort out endometriosis from PCS without your surgeon and a radiologist looking around (while you’re under general anesthesia). It’s crucial to have a highly skilled surgeon who is well experienced with recognizing/removing endometriosis. (Again, the PCS was confirmed in my case with radiography called venography).

Please take a look around my blog. There is an archives section and well as a list of categories and a search bar for keywords. You may find that there are multiple posts that discuss the subjects you asked about. If you have more questions, please leave another blog comment.

I do not mean to be evasive. Discussing questions on the blog can help more people see (and benefit from) the conversation. Also, I have been really ill lately and my response time is quite delayed – compared to the usual. However, if you wish to discuss something privately, please leave a comment and let me know. I’ll do my best to email you as soon as I am able.

I look forward to hearing from you one way or another. Worst case scenario, if I don’t hear from you again before your surgery, best of luck to you! Please take MORE time to rest and recover than the doctor(s) advise. It tends to take longer for most people than what the average surgeon suggests.

Take care! ;)

Jeanne

12 GeorgiaNo Gravatar { 05.10.11 at 2:41 pm }

Hi All,
A message to all young endo sufferers (and those who suspect they have it).
I knew something wasn’t right. I started my periods at 12 and by 13 or 14 years of age i spent every 1st day or night of my period on the bathroom floor in tears and in agony. I just could hardly leave the bathroom due to severe vomiting and diarrhoea. I had a GP who just didn’t give up experimenting every possible medication, but never once mentioned endometriosis. I gave up on him first and at 16 put myself on the pill, discovered ibuprofen and just got on with self medicating, knocking myself out and dealing with it alone. Ten years later I met someone who’d just been diagnosed with endometriosis. It was the first time i’d ever heard of it. She urged me to go back to a GP. I did this many times to many different GP’s over the years, stating I thought I had endo. They all said I would have more symptoms (mid month pain and bleeding) if it was endometriosis and that it was all probably prostaglandin pain. Rather than insisting to be refered, I simply believed them.
By my early 30′s my symptoms had gradually eased, I was relieved. But a few years later after settling into a relationship and unsuccessfully trying for a child I again began to suspect. This time a GP referred me. By 37 I’d had my laparoscopy, been diagnosed with ‘moderate to severe’ endometriosis and have 2 large endometrioma’s removed from my ovaries but my bowel and bladder were still attached to my uterus with adhesions.
That is now 3 years ago. I have had one failed pregnancy and I am getting a bit past it now, but i’m still trying for a baby. But how angry am I?
I don’t want to scare younger women, and I hope things have changed for the better a little now and GP’s more aware. But don’t bank on it. Do your research, be bolshy, get what you deserve, get the laparoscopy done as soon as you can (it’s not so bad!-and there should soon be blood tests to diagnose anyhow) and most of all..do not be fobbed off.
Georgia

13 JeanneNo Gravatar { 05.11.11 at 10:25 am }

Welcome Georgia!

Thank you for sharing your story. I truly believe that when patients share their stories, it can help other patients get a better idea of what to possibly expect and how to advocate for themselves. I am sorry for everything you’ve been through. Like you, by the time I was very ill with my first period (at age 13 for me)… I knew something was wrong. I just didn’t have a name for it for another 10 years.

Sadly, many gynecologists are not even properly trained about endometriosis. It seems general practitioners/primary care physicians, as a whole, tend to be even less likely to be informed about it. I’m glad you met another woman who has endometriosis and that this assisted you in pursuing a proper diagnosis. Fellow patients can be hugely supportive!

Endometriosis symptoms can vary widely from one patient to another. It is unfortunate that your symptoms were dismissed. It is also very common for this to happen. Obviously, this is unacceptable and the medical profession has much room for improvement in this area!

I’m sorry it took so long for you to find a doctor who would do a laparoscopy. I’m very sorry about your pregnancy loss. There is a large community of women online who have experienced pregnancy loss. If you click on the link “Infertility, Miscarriage, Pregnancy Loss, and Adoption Resources” in the upper left side of my blog (under navigation) and/or look through some of the blogs on my blogroll, you may be able to get connected with other women who has suffered pregnancy loss. Sometimes it helps to talk with someone else who has been through a similar experience.

It is very understandable that you are angry. Who wouldn’t be given the circumstances? Another option to consider is that there are therapists who are specially trained to counsel those who have suffered pregnancy loss and/or who struggle with infertility. (I know this because these issues are within the areas of specialty that my therapist has). It might be helpful to talk with someone about it.

I don’t want to scare younger women either but I think sharing true stories is a valid thing to do. Estimates are that 30 – 40% of endometriosis patients are affected by infertility. That means that 60 – 70% of endometriosis patients are not affected by it. That latter statistic is small comfort to those who do struggle with infertility, of course. However, I think it’s important to put the numbers in perspective because, as you said, it can be scary for young people to hear about everything that can go wrong.

Like you, I want doctors to be more aware of endometriosis, better informed about it, better at recognizing and removing it, and more aggressive about referring patients to specialists when they are out of their depth.

Early diagnosis is important. From being able to identify and treat it earlier to ruling out other illnesses with similar symptoms to attempting to preserve fertility, knowing the proper diagnosis (as early as possible) is really important. Hopefully there will someday be blood tests or some other non-invasive tests.

I’m glad that you were able to get a correct diagnosis via laparoscopy and I wish you the very best of luck. Thank you again for sharing your story here. I honestly believe that by sharing our stories with younger women, we can potentially encourage then to advocate for themselves and get properly diagnosed (with whatever they might have… endometriosis or otherwise) as early as possible. I’m sorry again for your loss and I’m sending positive energy your way!

Jeanne

14 TaylorNo Gravatar { 05.12.11 at 11:18 am }

Thanks so much for the help =) my surgery is now only 4 short days away. still nervous and now dealing with the fact that i want my fiance there and my dad doesnt. so thats a battle all on its own.

anyway. ill keep you updated on how surgery goes and what they end up telling me.

Much appreciated!!
Taylor

15 JeanneNo Gravatar { 05.12.11 at 2:51 pm }

Taylor,

Best of luck with your surgery. It’s normal to be nervous but try to do what you can to relax. Anxiety can lead to tightened muscles and it can worsen pain. I’m sorry that there is tension about who will or won’t be in the waiting room. I’m sure that doesn’t help matters any.

Yes, please let me know how it goes. When I go for my post-operative appointment, I always sign a release form to get a copy of my operative report. (This is the report that the surgeon dictates, about your surgery, that goes into your medical records). It’s much easier to request it right after surgery while you’re thinking of it and while they have it handy… That way, if your doctor moves away (or you move away)… or you need to share a copy with another doctor, you have your own copy for your personal records. Besides, sometimes the operative report says something the doctor failed to mention verbally and then you can ask the doctor about that part if need be.

Good luck and get lots and lots of rest afterwards! ;)

Jeanne

P.S. You’re very young. So, it’s especially important that if you’re told anything you’re unsure of you never hesitate to get another opinion. It’s your body. I know my diagnosis with pelvic congestion syndrome brought up one option in particular that I was not open to at all. Remember that doctors are human and they each have their own opinions and training… So, don’t let anyone pressure you do to anything radical. I would suggest being sure that your consent form for the surgery is very clear. Also, if your father and fiancé are both likely to be there on surgery day, you need to be sure your doctor is aware of the situation and knows with whom who you do or don’t want your personal medical information shared. The last thing you want is an argument in the waiting room. Good luck!

16 valerieNo Gravatar { 11.17.11 at 7:33 pm }

My daughter is 15 and has been living with undiagnosed severe stomach pain for a year now. It is very random in timing, length, and severity, and she has a hard time pinpointing a location. She has been living through much of what you describe as your own experiences as a teenager, and it breaks my heart. We have seen several doctors (her pediatrician, two ob/gyns, a pelvic pain specialist, neurologist, pediatric gastro, and adolescent health specialist). All tests have normal results, and her pelvic pain specialist does not think its endometriosis because it doesn’t coincide with her cycle and it hasn’t improved with birth control or depo lupron injections. He is very hesitant to do a laparoscopy due to her age and he feels the symptoms just don’t point to endo. There is an extensive history of endometriosis in my family and her father’s family. I don’t know if I should push him to do the lap or not – of course, I don’t want my daughter to undergo unnecessary surgery, but if it is endo, a diagnosis would would be wonderful. its so frustrating that she’s living this way and we keep trying to get answers with no success :( Any suggestions or thoughts?

17 JeanneNo Gravatar { 11.18.11 at 3:44 am }

Welcome Valerie!

First, let me say that I’m very sorry that your daughter is having such pain! I’m also sorry that she doesn’t have a diagnosis for what is causing the pain.

It can be very difficult to pinpoint the exact source location for pelvic pain. For example, for patients with co-existing conditions like endometriosis, irritable bowel syndrome, and interstitial cystitis (all of which I have), it can be difficult to sort out what’s what… as far as where the pain originates.

You mentioned that it is “random in timing, length and severity”. Not knowing how old she was when she got her first period, I suppose her cycles might not be totally regular just yet? (Of course, some people’s cycles never become what is considered “normal”). While the “classic” endo symptoms, such as menstrual cramps, are what people hear about more… the illness can manifest itself in different ways and each patient is unique.

You called her pain “stomach pain”. I am in no way trying to pick apart your words… Many people say “stomach pain” in reference to pain that is actually menstrual cramps or some other type of pelvic pain. So, your use of the phrase “stomach pain” makes me wonder if she has gastrointestinal issues and/or if her pain is linked in any way to particular foods?

For example, a friend of mine was recently diagnosed with celiac disease. She needs to be on a gluten-free diet. That’s just an example.

I’m just trying to think outside of the box a bit. I don’t know if her pain is sharp, dull, stabbing, burning, aching, pulling, cramping, etc.

Thank goodness your daughter has you supporting her and working so hard helping her try to get answers to what’s happening so that it can be treated accordingly! You mentioned that she has seen her pediatrician, two OB/GYNs, a pelvic pain specialist, neurologist, pediatric gastroenterologist, and an adolescent health specialist. Wow!!! It sounds like you have been extremely diligent in seeking out medical care for your daughter! Bravo to you! You have uncovered many stones in a short time… even if it may feel disheartening to you now since there is no diagnosis yet.

I know it may feel discouraging and frustrating that all of those appointments have not yet resulted in a definitive diagnosis (let alone relief for her pain!) but please take a moment to pat yourself on the back for your efforts thus far!!

While it may seem like some of those appointments were a “waste”, try to look at them as process of elimination (i.e. who isn’t helpful and isn’t worth seeing again) and to look at the appointments thus far as learning experiences that will help you and your daughter moving forward.

What I mean to say is that going through the hoops you’ve mentioned is difficult, can be expensive, and is often utterly frustrating BUT it can lead to a valuable accumulation of information that may help in the future as far as how to go about selecting other doctors, sorting out where to focus energy/”detective skills”, knowing what questions to ask, etc.

You mentioned that she has had multiple tests that gleaned normal results. Sadly, with many illnesses (certainly not just endometriosis), patients are often told again and again and again that their tests are “normal”… despite the fact that they DO later discover the diagnosis/diagnoses behind their symptoms.

Unfortunately, some people get told “the test was normal” enough times that they start to wonder if they are imagining their symptoms. (More commonly, though, undiagnosed patients KNOW that SOMETHING is wrong… even without a proper name for it… and it’s the people around them that sometimes incorrectly conclude that “gee, all of those normal tests must prove so and so is normal”).

It is incredibly important for people living with chronic illnesses to feel validated. I think this is even more important for young patients.

Too often, patients suffer emotional pain from being disbelieved… on top of their physical pain. :(

Here again, it’s wonderful that you are so supportive of your daughter. That is huge!

OK. Now the part of your comment that is more challenging to comment on. Let me start by saying that I am not a medical professional and I only have the info you provided in your comment on which to formulate suggestions which may or may not be helpful or appropriate.

That said, I’ll do my best to try to give you some feedback. You said the pelvic pain specialist does not think its endometriosis because it doesn’t coincide with her cycle and it hasn’t improved with birth control (I’m assuming you mean birth control pills – but maybe you mean some other hormonal birth control medication?) or the injections. Bear with me while I break this all down because it’s kind of loaded…

While a great number of endometriosis patients have “classic” symptoms (such as menstrual cramps or pelvic pain at the time of menses), not all endometriosis patients are created equal. I am not saying that the pelvic pain specialist is incorrect with his assessment. I’m simply saying that the only way to get a definitive diagnosis of endometriosis is by laparoscopy. (Put another way, the only way to definitively rule endometriosis out is to perform a laparoscopy).

Just because she didn’t respond to the medications he has prescribed does not necessarily mean that she does not have endometriosis. Of course, it doesn’t mean she does have it either.

Based on what you’ve said here, I understand where the specialist might think her non-responsiveness to those medications makes it less likely that endometriosis is the culprit. At the same time, anyone having chronic pelvic pain (i.e. pelvic pain that lasts for more than 6 months) – regardless of whether they did/didn’t respond to xyz medications – is statistically more likely to have endometriosis than not… not even including family history in the mix yet. (I don’t have the exact figures in front of me but an easy majority of patients who have pelvic pain that persists for 6 months or more end up getting diagnosed with endometriosis down the line).

Does that mean that your daughter is in that majority group? Obviously I don’t know. However, if it were my daughter I wouldn’t write off the chance of it being endometriosis simply because she didn’t respond to xyz medications (and because that one doctor doesn’t think it’s endo). Not everyone responds well to the medications that are currently available to treat endometriosis.

While I understand many doctors are hesitant to perform laparoscopy on girls that are your daughter’s age, I have to tell you that I personally would be as concerned about the risks associated with GnRH agonist injections as I would be with the risks associated with surgery. (I’m assuming your daughter didn’t have any horrific reactions to her injections since you didn’t mention any. Unfortunately, not all endometriosis patients are that fortunate).

Since it is unknown whether your daughter does or does not have endometriosis, my personal comfort level – if it were my daughter – with such injections would not be any greater than my comfort level would be for her having a laparoscopy. (In other words, the pelvic pain specialist prescribed the injection but is hesitant to do a lap. I’m inferring that he views the injections as safer (?) than the surgery. I’m not sure I’d feel more comfortable with that injection than with a laparoscopy… but that’s just my opinion and that’s also factoring in my own risk level for side effects from the injections).

I absolutely understand the doctor not wanting to expose her to unnecessary surgical risks (i.e. scar tissue and adhesions from the surgery itself, risks of reaction to anesthesia, risks of infection to the incision site, etc.) If he doesn’t think she has endometriosis, it makes sense that he doesn’t want her to have surgery to look for it.

However, part of the big picture you have presented is the family history of endometriosis. Again, I don’t have the exact numbers in front of me (so please don’t quote me here) but, off the top of my head, I believe the risk of having endometriosis is approximately 7 times higher (?) for those who have a first degree relative who has endometriosis than for others. With extensive family history in both your family and in her father’s family, I personally think (and this is just my opinion) that endometriosis should not be taken off the table as a possible explanation unless a laparoscopy (by a surgeon skilled in endo) has ruled it out.

Does that necessarily mean she should have surgery? I’m not sure what to tell you on this part so bear with me. I want to word this part carefully. If it were my daughter, I would not want that particular doctor to perform a laparoscopy on her… especially if it meant I had to “push” for it to happen. Why? Mainly because he is “very hesitant to do a laparoscopy” on her (no matter what the reasons). I would not want someone operating on my daughter who has reservations about doing so. The last thing I would want is someone performing surgery on my daughter – when they really didn’t want to – because I talked them into doing so.

He could be the most wonderful surgeon ever. However, if he is hesitant to perform a lap on your daughter then his mindset is not what I would want it to be to do the surgery. His predictions of “no endo” could turn into a self-fulfilling prophecy since he’d be the one in there proving/disproving it. Does that make any sense? In other words, if his heart’s not in it (the surgery), then I wouldn’t feel comfortable having him do it.

That said, if it were my daughter and I didn’t feel comfortable having him do a laparoscopy but I reached a point where I did think it would be prudent for her to have a lap, then I would look for a doctor who is comfortable performing laparoscopies on girls who are in your daughter’s age range. Again, I do realize that risks like adhesions and scar tissue in a 15 year old are worth considering. Adhesions and scar tissue themselves can cause pain. If she does not have endometriosis, it’s possible that adhesions and scar tissue could add to her troubles. On the other hand, considering how much she is suffering now and how many years she has ahead of her… these risks may be worth taking (especially when laparoscopy is the definitive method for diagnosing endo). People vary. Adhesions and scar tissue aren’t a big deal for some and are a big deal for others. It’s hard to predict.

Also, if she does have endo and it’s severe then having surgery to properly diagnose it and remove it might even protect her fertility down the road. So, surgery decisions can be complex. This is probably even more true for girls who are your daughter’s age. Weighing risks vs. benefits can be challenging.

I know finding a doctor who is skilled at diagnosing and removing endo is hard enough and that finding a doctor who operates on children also is even trickier. I don’t ever take it lightly to suggest someone consider seeking out another doctor (even if just for a second opinion). I don’t know your daughter’s doctor and he could be great.

To be clear, the reason I bring up the notion of seeking treatment with a different doctor is that if you and your daughter decide to pursue a laparoscopy for her (whenever that may be… even if it’s not right away), I think you’d be better off having hand-picked a doctor who will not be hesitant to do it and who has gotten to know her as much as possible (that last part can be tough when symptoms demand swift action).

Talking the current pelvic pain specialist into doing a surgery he doesn’t agree with could mean he goes in (subconsciously, of course) with some degree of “blinders” on for endo. What I mean is that if he has told you he doesn’t think it’s endo and then you “talk him into” doing a lap anyway, his human nature (subconscious) way of approaching that surgery might be to “prove himself right” that it’s not endo. It’s like a self-fulfilling prophecy. (I am certainly not suggesting that he would consciously set out to prove his theory at all costs (even if his theory of no endo was wrong). Does this make sense?

The only way you’re ever going to know for sure if it is endo or not (with what is available at the current time anyway) is by her having a laparoscopy.

There are many illnesses with “overlapping” symptoms to endometriosis that can essentially masquerade as something they are not. For example, interstitial cystitis causes pelvic pain.

Back in 2008, my friend Endochick wrote about some of the many conditions that can be confused with endometriosis. In it, she told of her sister’s experience (of thinking her symptoms were endometriosis since her mother and sister have endometriosis and her symptoms pointed her towards endometriosis).

Despite her sister’s family history, what she had was not endometriosis at all, as my friend described here.

Thankfully her sister’s doctor got to the bottom of her situation. An endometriosis misdiagnosis could have been very serious in her case!

I hope something in here helps. I know I have rambled on. When I hear about a girl as young as your daughter who has seen so many doctors to no avail, it kick-starts my “I want to help” reaction. I hope you’ll keep us updated on how your daughter’s doing. Please feel free to post any follow-up questions/comments! I’ll try to get the word out to see if some of my online friends can take a peek at the blog comments for this post in case they have any feedback for you. So, please check back in case someone leaves a comment for you/your daughter. Obviously your daughter is welcome to stop by herself if she cares to post comments/questions.

Best of luck to you! No matter what is going on with your daughter’s health, I hope you all get answers ASAP!

Take care,

Jeanne

18 JeanneNo Gravatar { 11.18.11 at 3:51 am }

Valerie,

I just posted a note on Facebook in case any of my FB friends who have endo care to add any comments.

Jeanne

19 valerieNo Gravatar { 11.18.11 at 9:22 am }

thank you, jeanne, for responding so quickly, and putting so much time and information into your response. i’d like to clarify a few things and provide more info that i left out in my first comment.

I should have noted that her pain does not correspond with her diet at all. She has flare-ups whether she has eaten recently or not had anything to eat all day. And it doesn’t relate to what she has or hasn’t eaten either. The ped GI dr said he ruled out celiac and crohns and ibs based on her labwork and a colonoscopy. I do have an appt with another pediatric GI in January for a 2nd opinion – perhaps an endoscopy? I hate that she is going thru all this testing but its the only way to get answers.

She calls it stomach pain – and has a hard time pinpointing where it is located. Sometimes higher, sometimes lower, not necessarily on a particular side. She has described it as stabbing and throbbing. It makes her nauseous and causes loss of appetite. She’s missed far too much school, and spent too many days on the couch or in bed, or curled up in a ball. I’ve taken her to the ER 3 times but they really do nothing other than rule out appendicitis or other “emergencies” and then send us on our way.

Regarding family history – to be more specific, I have two aunts on my mother’s side with endo history, and her father’s sister has an extensive history of severe endometriosis.

She started her cycle when she was 13, and wasn’t yet “regular” when we started seeing dr’s last summer and trying different birth control pills, and the injections. She has now been on her current bc pills for 4 months and is just started to be regular, however, her periods have tended to be long and heavy. Its hard to say whether this is a symptom – or a side effect from various treatments.

My daughter is suffering emotionally/mentally at this point. She feels that family and doctors don’t believe her or take her complaints seriously. She feels like they think its all in her head. She does have severe anxiety and is treated for depression – so it is suspected that this is partly psycho-somatic. I feel like there has to be a physical cause to this – but I also believe that the mental health issues worsen the symptoms, and vice versa. At its worst, it snowballs and the two feed off of each other. She gets more depressed, feels physically worse, misses school, becomes isolated socially, anxiety increases, pain worsens, and so on.

I am trying to be her advocate and keep pushing for answers and supporting her – but as a single parent working full-time, it is beyond frustrating and sometimes feels impossible. Missing work and mounting medical bills – to continue to hear that we may never know a cause and need to focus on helping her learn to cope/adjust and live with this. That’s not a good enough answer for me. I won’t give up. She deserves better than that.

Thank you again for being so caring and helpful. I truly appreciate it with all my heart.

20 JeanneNo Gravatar { 11.18.11 at 12:54 pm }

Valerie,

Unfortunately, I am on my way out the door at the moment but I wanted to get your second message posted in case any of my online friends look at the post today before I get around to replying to it. So, I will post a detailed response as soon as I am able. By posting your additional information, it may enable someone else to post a comment with more information for you. Hang in there. I know it’s very hard! Whatever it is that is causing your daughter’s symptoms, it’s crucial for her and for you to get support. Hopefully getting such support will ease some of the emotional burden. I’ll post more as soon as I can.

Take care!

Jeanne

21 JeanneNo Gravatar { 11.19.11 at 1:38 am }

Valerie,

I had really hoped to reply in detail tonight but I am really drained after a very long day. In the meantime, I just sent you a private message… and I’ll reply here as soon as I am able. Thank you for your patience.

Jeanne

22 JeanneNo Gravatar { 11.21.11 at 4:10 am }

Valerie:

Sorry for the delay in replying. So, it sounds like the pediatric gastroenterologist did a blood test to check for for celiac disease – but did not do an endoscopy (with a biopsy) – and said that she doesn’t have celiac? (I’m assuming she didn’t have endoscopy since you indicated that she might in the future). I wasn’t aware that anything would necessarily show up during a colonoscopy to rule IBS in. (My IBS was diagnosed before any of my colonoscopies were done). So, I’m curious as to how the pediatric gastroenterologist ruled IBS out? Unless IBS was ruled out based solely on her IBS symptoms or lack thereof (as perceived by the doctor). That’s good that they did a colonoscopy to check for various things and I understand that’s how Crohn’s was ruled out.

Are you familiar with rotation diets? Where a food that’s eaten can’t be eaten again for so many days. (If memory serves, it can be repeated on the 5th day. I’m sure you could Google search it). The reason I ask is that it may not appear that there’s any link between what she eats and the pain (and, true enough, there may not be any such link) BUT once a food is ingested, the effects of it can last for several days. For example, if she ate something that her body had trouble digesting/was sensitive to, it could be a problem a few days later without her making the connection. Keeping a food diary can help with spotting any patterns that might exist. While eating a rotation diet may be inconvenient, it might be worth the effort if, in fact, she is unknowingly reacting to one or more foods. I know you don’t think food is the explanation for her pain and it may very well not be. I only mention it because it can be quite difficult finding the connection between a food and a reaction in some cases. Not all food reactions happen swiftly or are obvious at all. So, while it may not be high on your list of likely explanations, you might not want to rule it out completely just yet.

As far as whether she should see another gastroenterologist for a second opinion (and possible endoscopy) is concerned, that’s a decision that you and your daughter will need to make, obviously. I agree with you that tests can be a necessary series of steps on the way to getting answers.

With her pain being sometimes higher and sometimes lower and not necessarily on a particular side, it must be frustrating for her to try to pinpoint the “where” regarding the source of the pain. There are so many illnesses that can cause abdominal and/or pelvic pain. Everyone is different and it’s really hard to know what to suggest regarding the fact that she’s having trouble pinpointing the pain source/location. I myself have had pain on left and right sides and sometimes it’s higher/lower than others. So, I know how it feels to have that hard-to-pinpoint pain.

It wouldn’t be right for me to engage in conjecture about what’s happening to her when so many illnesses can mimic endometriosis in symptoms. However, there certainly are endometriosis patients who use “stabbing” and “throbbing” to describe their pain. The nausea could obviously be caused by many things. Again, though, nausea can certainly be a symptom for endometriosis patients. Missing school is very difficult at her age. She must be incredibly frustrated. The ER trips you alluded to sound all-too-familiar. Like you said, they basically just rule out what they deem to be emergencies.

Having 3 aunts who have endometriosis is certainly something I would share with every doctor she sees. Granted, many doctors are very clueless about endometriosis – and may not even know that endometriosis risks are linked to genetics. (Don’t get me started on that. ALL doctors should know this. But I digress). I don’t know if you had a chance to read the link to Endochick’s post? Her sister’s situation illustrates the importance of not jumping to any conclusions about endometriosis based on family history. However, you and your daughter certainly are wise to be mindful of the family history as you move forward in your search for answers.

With her being young and not having gotten into a pattern of regular periods before hormonal medications were prescribed to her, it can make things a bit tricky. Sorting out medication side effects from an unsettled cycle can be tough to do.

So, she has had no relief whatsoever on any of the medications? Did any of the medications seem like they might have worsened her symptoms? (Again, I know it can be hard to tell in her case). I ask because my first gynecologist diagnosed me with a laparoscopy and then put me on a type of birth control pill that made my symptoms worse. (Years later, I learned (from a far more knowledgeable doctor) that the birth control pills he had me on are NOT a good type to be on if you have endometriosis!)

Now you may be wondering why the heck my first GYN prescribed that medication if it’s not a good option for endometriosis patient. Why would he do that? Right? After all, he was the one who diagnosed me with endometriosis. The short answer was that he was an arrogant, misinformed doctor regarding endometriosis. He was clueless on many fronts (in retrospect). It didn’t take me long to figure out that he didn’t know his stuff because, from immediately after my diagnosis, I was reading the medical literature voraciously – and he was making remarks that contradicted what I had read in reputable medical journals. (BTW, there are different classes of birth control pills and some BCPs are not “friendly” to endometriosis patients).

It can take a few cycles for a given pill to get stabilized in a person. Back when I used to take BCPs, doctors used to typically suggest sticking with the same BCP for 3 cycles (unless side effects made this inadvisable, of course).

Long and heavy periods are another thing with which I’m very familiar. In my case, one of my surgeons years ago indicated that I have “probable adenomyosis” (after observing my uterus during a major surgery called a laparotomy). I wouldn’t be surprised if I have adenomyosis in addition to endometriosis. I have zero plans to have a hysterectomy and dissecting the endometrial wall is the means for diagnosing adenomyosis. (That requires a hysterectomy). I know many women who have endometriosis (and who have never been told anything to imply that they might have adenomyosis) who have long and heavy periods. So, I don’t mean to throw you a curve-ball by mentioning adenomyosis. I only bring it up because some women do have both.

I can only imagine that your daughter is suffering emotionally/mentally at this point. Who wouldn’t, in her shoes? Her feelings that certain people don’t take her “complaints” seriously are probably well-founded. Patients with all manner of chronic illnesses often develop finely tuned “radar” that detects when people are marginalizing them, implying that they are lazy, insinuating that they “just want attention”, etc.

Wondering why I put “complaints” in quotes? Well, as much as doctors are fond of labeling patients’ symptoms as “complaints”, I myself prefer when people call my symptoms… “symptoms”. I realize this is a semantics issue. When I see a copy of my medical chart saying things like, “Jeanne complains of…” – even though I know it’s doctor-speak – it sounds to me like there’s a negative connotation with that particular word. The word “complain” can conjure images of one who is “negative” or a “trouble-maker”. Whereas the word “symptoms” simply conveys the patient is reporting signs that something is wrong with the person medically (be it body or mind… it doesn’t really matter in the sense that everything in a person’s body is connected… and emotional/mental symptoms are no less “real” than “physical symptoms”).

Anyway, I am definitely not trying to sound nitpicky. I have found that language matters when dealing with chronic illness. There is so much misinformation, misdiagnosis, stigma, etc. out there that I am (admittedly) very, very picky about words. Very sadly, there are too many people (certainly including people in the medical field) who “blame the victim” and it drives me mad when I see/hear examples of that. There very well may be people who think it’s all “in her head”. Going back to what I said earlier, whether one’s medical conditions are physical, emotional, or a combination of both… they are occurring within one person’s body. As far as her symptoms being viewed as psychosomatic by certain people…. big sigh!

1) I agree with you that there is likely a physical cause to her symptoms that the doctors just haven’t sorted out as of yet.

2) There is no doubt that mental health issues and physical health issues can feed off each other. The cycle you’ve described is not uncommon. I think it’s important to highlight the fact that this does not make her symptoms any less valid or “real”. It is not unusual for patients to experience depression/anxiety and physical issues. I think the trick is to spot any doctor who is trying to throw around the derogatory, stigmatizing, and sometimes downright insulting term “psychosomatic”. I think it’s crucial to recognize the potential dangers to your daughter’s self-esteem and overall well-being when people say or imply that “it’s all in her head”. Nearly every chronic illness patient I’ve ever met has struggled against this labeling. It can crush a person’s spirit to have her valid concerns marginalized. Since she has mental health diagnoses, it is even more important (in my opinion) not to allow arrogant doctors to blow her off and dismiss her as a “neurotic, hysterical, head case”. Her mental illness diagnoses are in her medical records (I’m assuming) and they can be “used against her” by doctors who prejudge her because of them. It’s sad but true that many doctors do this.

It sounds like you are doing a phenomenal job of advocating for her!! I can only imagine that it can feel beyond frustrating and sometimes impossible. Missing work has to be challenging in this day and age where it can be a very big deal to get time off. My husband and I were forced to declare bankruptcy a few years back… thanks to my medical bills. (That was WITH health insurance). Between co-pays, uncovered/rejected claims, prescriptions and so much more… it reached the point where we had no choice but to file for it. This is one of the most stressful experiences we’ve ever been through. All these years later, we had trouble refinancing our mortgage to lower the interest rate until (FINALLY!) we closed on it Friday. The bankruptcy lingering on our record prevented us from refinancing before now. The rate we had locked in back in 1998 was HIGH and refinancing will save us a great deal of money per month. My point is that I understand firsthand how medical bills can add up and become overwhelming.

You mentioned that you’ve been told “you may never know a cause”. I’m not sure who worded it quite that way to you but I will say this. Finding the right diagnosis (or even diagnoses) can be a long, hard road. It can be frustrating, exhausting, and even maddening. It can feel impossible. It can be discouraging. However, I think that writing off a 15 year old as potentially “undiagnosable” is… well, pretty extreme. What I have learned (firsthand and through many other chronic illness patients) is that when doctors can’t find easy answers, many of them are pretty darn quick to give up, blame the patient (whether they realize they are doing so or not), pass the buck to another doctor to be “rid” of the “challenging/problem patient”, etc.

It is true that it IS crucial for her to have tools for coping & adjusting. Not just to support her during the journey to get properly diagnosed but she’ll still need coping skills for after she gets answers too. I’ve been chronically ill for almost 30 years and coping skills are HUGELY important.

However, I TOTALLY agree with you! Coping skills with the “status quo” and no diagnosis or answers is not a good enough answer when someone is suffering so. You are right! Bless you for not giving up and for persevering on behalf of your daughter. I know it’s not what you want to hear but it may take time to get the answers you seek. I can almost guarantee you that it will be worth the time/energy/money to persist on the search for answers. Hang in there! ;)

Any more info you can provide that might give me more clues would be great. I may not personally be able to make sense out of her specific symptoms but I can try to run them by other patients who might have info that could be helpful.

Thank you for taking the time to share this information. My heart breaks for anyone dealing with these issues but I have an especially soft spot in my heart for children suffering with issues like these! Having lived through it myself, I know how scary, sad, maddening, confusing, and frustrating it was for me. I appreciate your feedback. I truly hope that your daughter gets relief/answers soon! In the meantime, she has a mother who is bending over backwards to help her move forward on that journey to answers. I can assure you that having your support is a crucial thing for her at just 15 years old.

Please keep in touch. It can take a bit of time for people to chime in on older posts like this. So we may get some more people chiming in just yet. I hope you’ll check back.

Take care!

Jeanne

23 SabinaNo Gravatar { 01.06.12 at 5:27 am }

I am 14 and currently going through the process of finding out if I am diagnosed with emdomentriosis. I am going back to the doctors today. I have been crying for 2 hours and I know life has been living hell for me ever since I got my period at 12. Everyone told me to suck it up at first. Friends and family. My mother then saw the pain I was in August though and took me to a geneologyst. I am taking birth control and I have special painkillers which neither work. They took me to a G.I. Doctor to see if I had a gastro problem and they ruled out everything. I missed 20 days of school with missing more and my teachers don’t understand the pain I’m going through and I lost many friends cause of canceling plans always or being “too emotional” I cry myself to sleep so often over this. I don’t want this to over run my life. I couldn’t imagine dealing with this for 10 years. At school I had multiple “accidents” and it was humiliating. I thought the world was against me. I still feel that way too. Not alot of people support me. I lost many friends and some of my family tells me to suck it up. My parents though are so understanding and they helped me through alot. I feel I have not many places to turn anymore though for comfort. I feel like a freak at school cause I’m gone more than I’m there. It’s scary. I just want my life back.

24 JeanneNo Gravatar { 01.06.12 at 5:59 pm }

Welcome Sabina!

I am so very sorry that you are in such pain and going through so many challenges. My endometriosis wasn’t diagnosed until I was 23 but my symptoms began when I was 13 years old. I remember what it was like to be in such pain while also dealing with school.

I hope that your appointment today goes (went?) well. In my opinion, it is imperative to get a definitive diagnosis as early as possible. The following link lists “tests to check for physical clues of endometriosis”. However, it is important to note that the section about laparoscopy states “The only way for your doctor to know for certain that you have endometriosis is by looking inside your abdomen (direct visualization) for signs of endometrial implants”. While pelvic exam or ultrasound may provide clues, laparoscopy is considered the means for definitive diagnosis.

Here is more information about it:

Endometriosis: Test and Diagnosis

Sadly, there are misinformed doctors out there who make assumptions about whether patients do or don’t have endometriosis… without going though the proper steps to make that determination. Due to this, it is very important for anyone who suspects she might have endometriosis to be evaluated by a physician experienced in recognizing, removing, and treating endometriosis and in knowing when to look down other avenues.

A friend of mine has endometriosis and writes a blog. Her mother has it too. When her sister developed symptoms she associated with endometriosis, she assumed that she had it as well (since it can run in families and because of the type of symptoms she was having). When she asked her doctor to prescribe medication to treat it as endometriosis, her doctor said no. Thank goodness her doctor did more investigation to determine what was happening in her case. For more details on her story, see this post about Endochick’s sister that shows the importance of getting a proper diagnosis.

I mention the situation with Endochick’s sister not to alarm you in any way but to underscore the importance of getting an accurate diagnosis. It’s important with any illness to be as certain as possible what the illness actually is before attempting to treat it, in my opinion.

Unfortunately, I think it can be even more challenging for someone your age to find a doctor who is willing to perform a laparoscopy and who has experience performing such surgery on girls. Unfortunately, I think most doctors who perform laparoscopies to diagnose (or remove) endometriosis are accustomed to older patients. The statistics vary but some say that the average diagnosis of endometriosis is 9.9 years after the onset of symptoms. This time lag is obviously totally unacceptable… and doctors need to be looking much more aggressively for endometriosis, in my opinion. If I were in your shoes, I would would share this post (and others on this blog) with your mother to possibly help you to facilitate discussion on whether or not the two of you are comfortable with the skills and knowledge of the doctor you’re seeing – especially as far as ruling endometriosis in or out.

I was interviewed HERE regarding teens/preteens and endometriosis. You may find that post helpful. Here is another post I wrote that pertains to teens with suspected endometriosis. As you can see from the disproportionately large number of comments that “teen endo” posts get, there are a great many endometriosis patients who remember what it was like to be an undiagnosed teen with endometriosis… and who very much want to lend support!

As far as everyone telling you to “suck it up”, I am sorry to say that there are far too many people who operate with that mentality (in regard to many illnesses… not just endometriosis). Many of the posts on this blog talk about this problem.

You are far, far from alone in dealing with people who have this attitude. Many people truly don’t “get it” and say this type of thing without thinking. Some may never have been seriously ill and cannot wrap their brains around how much pain you are in. Others may have been raised in households where “suck it up” was the name of the game and was the expected attitude to have towards illness and injury. The list goes on.

Understanding how common this attitude is doesn’t make it any easier to deal with, of course. It HURTS when someone says “suck it up” to a person in horrible pain! Some say the emotional pain of invisible illnesses (such as the pain of not being believed or validated) is just as bad (or even worse) than the profound physical pain.

Obviously, no one wants to be disregarded, disbelieved, or marginalized. No one wants to be called a liar. Let’s face it. If a patient is describing severe pain and is being told to just “suck it up”, the person who is telling that patient to do so is essentially implying that the patient is either exaggerating, a “wimp”, or even outright lying. So, of course it is very hurtful to be told to “suck it up”. I’m so sorry that anyone has said that to you. I have had people say that (or something similar) to me over the years and I know how much it hurts!

You indicated that everyone told you to “suck it up” at first. That implies that some people have stopped saying that? Perhaps they have come to better understand your pain on some level? I hope so.

It is very awesome that your mother took you to the gynecologist. It is very difficult, I think, for the mother of a 14 year old to do so. Most people simply don’t think about the idea of taking a girl your age to a gynecologist — even though it’s obviously sometimes very necessary. So, that’s really great that your mother did that.

I’m sorry that the medications you’ve been prescribed have not been helpful.

You mentioned seeing a gastroenterologist. Hopefully they were able to do the tests appropriate given your situation.

I’m sorry you’ve missed so much school and that your teachers don’t understand what you’re going through. There is such a need for awareness and education about endometriosis! I’m sorry that you have lost friends and I know that hurts. I’ve experienced that and it’s very hurtful. Again, often lack of awareness and education feeds into these problems. If they understood what you are experiencing and they were true friends, they’d be there to support you, right?

Whatever it is that is causing your symptoms (whether it is endometriosis or not), it doesn’t have to “run your life”. This is not to say that your symptoms are likely to magically disappear. What I’m trying to say is that by getting the best healthcare possible, educating yourself about your condition and what treatments are available for it (i.e. Traditional Western Medicine, alternative medicine, etc.), and getting support from people who “get it”… you can get improvement of physical symptoms and the emotional effects too. It may take time but it can get better.

I am 43 years old and I’ve lived with chronic illness since I was 13. I’ve met (in person… such as in support groups) and “met” (online… such as on blogs or in social media) many fellow patients. It is truly inspiring and empowering to meet fellow patients. Sharing support and information with others who “get it” is a very powerful thing!

You mentioned that you can’t imagine “dealing with this for 10 years”. May I suggest that you try not to imagine that right now? When you are struggling to get through one day at a time, it is overwhelming to ponder living with such symptoms for years on end. I’m not suggesting burying your head in the sand but I do think that ruminating over what it would be like to live with certain symptoms for X number of years might just stress you out at this point.

Anyone who judges you for crying about what you’re going through must not understand your situation. Try not to get hung up on what other people think of you. (I know this can be much easier said than done). As I have written about on my blog, I know all about the accidents you spoke about. You are not alone. This happens to other people. It’s not just you. It’s not your fault. I know it is humiliating. I remember the fiasco that occurred on my 7th grade field trip (possibly the worst accident I ever had) like it was yesterday.

The world is not against you. I understand why you feel that way and I worked through feelings like that myself when I was your age. It can get better. I’m sorry you don’t have as much support as you need. It is awesome that your parents are so understanding. This is huge! Having both of your parents in your corner on this is really great. I’m really sorry school is so difficult. Obviously, I don’t have any magic words that will make that situation better overnight but hang in there and focus on the things you do have control over.

I really hope you’ll stop back in the future. Often, when a teenager posts on my blog about endometriosis or suspected endometriosis… a large number of my readers will post feedback to their comments. So, someone may post something you’d find helpful. Also, I am interested in hearing how you make out with trying to get an official diagnosis… and how you are doing. I hope you’ll find this blog a safe place to connect with others who understand what it’s like to have the type of symptoms you have.

Finally, please check out the post: Message To 13 Year Old “Flocked”. There are 50+ comments posted on that. If you haven’t already seen that post, check it out because there are many interesting comments from caring people there.

Best of luck to you. I really hope you get answers and relief as soon as possible. I think dealing with the unknown can be very difficult. When I was diagnosed with endometriosis at 23, I finally had a name for what I’d been living with for 10 years. I finally had something to go on.

Hopefully you can get a definitive diagnosis for your symptoms soon. I hope you’ll stop back here. There are many people who care that leave comments on this blog. You might find it helpful to interact with commenters here. Good luck!

Jeanne

25 DianeNo Gravatar { 01.07.12 at 12:39 pm }

Sabina, I was so sorry to read about your situation! It sounds very similar to what my life was like when I was your age. Even though I had severe symptoms of endometriosis starting at age 12, I was not diagnosed until I was 22. It is at least encouraging that the doctors are looking for endo now (10 years is how long it takes most of us to get diagnosed, unfortunately).

Jeanne gave you some wonderful advice. Please know that you are not alone; endometriosis and your symptoms are more common than you might think. Good luck!

26 JeanneNo Gravatar { 01.17.12 at 6:24 am }

Diane:

Thank you so much for your kind, supportive words for Sabina. It can certainly be a great comfort for people to know they are not alone and there are other people who “get it”. Hopefully Sabina will get some answers and relief as soon as possible.

Sabina:

Please keep us posted on how you’re doing. You are not alone. Good luck!

~~~

Jeanne

27 HollyNo Gravatar { 01.26.12 at 11:36 pm }

I am the mother of a teenage daughter with endometriosis. I also was diagnosed with the same. And my own mother. 3 generations. My mother had a hysterectomy at 35.I had my hysterectomy when I was 30. My daughter is only 14. She is having laprascopic surgery in a few days. I have watched her suffer for a year with pelvic pain that dimmed the light in her sparkling eyes, crushed her free spirit. It has changed her in ways I never thought possible. Reading your story, and so many like yours, has given me hope that she can overcome this. She always says, “I just want my life back”. So simple. The pain has robbed her of so much at her young age. I remember crawling through hallways at high school because the pain was so debilitating. That was my normal. I see that same debilitation in my daughter and know that it is NOT normal. She was a sunflower, glowing, shining, ready to take on the world. Now she withers in the dimness of pain, in a darkened room, with a heating pad for comfort. It saddens me that I can’t fix her. Please, God, Doctor, Medicine, let this surgery be the end of her suffering, and let her see the joy in life again, and PLEASE PLEASE… let her get her life back.

28 JeanneNo Gravatar { 01.27.12 at 1:06 am }

Welcome Holly!

I am so sorry for everything you, your daughter, and your mother have been through with this insidious illness. It must be very difficult for you to watch your daughter suffer. I hope that your daughter’s upcoming surgery goes as well as it possibly can!

I can honestly say that I never imagined when I was a teenager that I could learn all of the things I have learned that have helped me live with endometriosis. I have learned so much from talking with fellow patients, reading medical journals, picking my doctors’ brains, etc. I have also learned so much about alternative treatment options that I wasn’t aware of for many years. If I’d only known then what I know now! I am so sorry that you have been through so much.

Your daughter has one MASSIVE thing going for her. Any idea what that might be? YOU! She is lucky to have you in her corner because you “get it” in a way that few who do not live with endo ever could. You have the ability to help her develop coping strategies because you’ve been through it yourself.

I know it’s hard to watch the toll endo has taken on her. When I was her age, I wished and wished and wished to “go back to how things were”. I never did find a way to do that. I’m not sure anyone with an illness like endo has the ability to do that (since, after all, there is no cure).

However, I can say that it CAN get better. I can say that because it has gotten better for me. (OK, it hasn’t gotten better on the co-existing illnesses front. However, the endo front has improved). It’s not “all better” but it is “better”.

Granted, I had 7 surgeries between 1992 and 2008. Granted, I have tried a slew of alternative medicine options. Granted, I tried various meds (too many to list) and they weren’t very helpful.

Mutual support from fellow patients is HUGE! I encourage you and your daughter to continue to visit my blog. There are some very compassionate, wonderful, smart patients who comment here. Please feel free to post comments or questions whenever you like!

It is not your fault that you can’t “fix her”. All you can do is help her find the best healthcare possible, give her the support she needs, let her know you can empathize with her, advocate for her, etc. I am not a healthcare practitioner and I can’t give medical advice. I can tell you that the single most helpful thing I have found in the last 11 years (not just for endo) is acupuncture. I cannot say enough about it. If you are looking for something to help your daughter and this hasn’t been tried… there are many qualified acupuncturists out there. My acupuncturist uses Japanese-style needles and they do not hurt. There is an acupuncture link in my blogroll that contains an acupuncture finder. It might help you find a board certified acupuncturist near you. I wish I had tried acupuncture years earlier than I did!

Hang in there and please stop by here anytime you wish to connect with others who “get it”. I look forward to hearing from you and/or your daughter.

Take care!

Jeanne

29 MegNo Gravatar { 03.20.12 at 2:10 am }

Hello…
I just stumbled across this website and am so glad that I did! I am 20 and will actually be having my first lap next week as my doctor suspects I have endometriosis. It has been so interesting for me to read through all of these comments as so far this has been a pretty lonely road to travel as my friends really don’t understand all that I am going through.

To give you a little background on my situation, endometriosis is crazy common in my family even going back to my great-grandma, so this past summer after thinking that my appendix was going to burst for over a week it wasn’t much of a surprise when I was told it could be endometriosis and was referred to my now current GYN. I have tried various types of birth control and since none of them have really been working I have ended up in the local ER way to much recently with uncontrolled pain. So, I will be having a my surgery a week from tomorrow. While I am a bit nervous…the uncontrollable pain I have been in recently has certainly made it a bit easier to want to have the surgery as I am just seeking relief.

I would appreciate any advice or support :)

30 JeanneNo Gravatar { 03.20.12 at 3:04 am }

Welcome Meg!

I’m so glad you found this blog! Hopefully by connecting with people here you’ll be able to get some support from people who “get it” from firsthand experience. Good luck with your laparoscopy! I’m glad you’ve found the comments from people interesting. I’m sorry it’s been a lonely road. Just about every endometriosis patient I’ve ever met had a lonely road of it in the beginning. Hopefully you are now on your way to having support from fellow patients. You’ll certainly find plenty here. I have found that people who don’t have endo rarely “get it”.

I hope the surgery gives you definitive answers as to what’s happening. It’s normal to be nervous before surgery. I’m really sorry for your pain. I hope you get some relief. While I’m not qualified to give medical advice, I am sharing the following link. It’s an old post I wrote on my former blog. It’s about what to expect during a first laparoscopy:

“Jeanne’s Endo Blog”: What Can I Expect From Having A Laparoscopy???

I encourage you to read through other endometriosis posts on this blog. You’ll see more comments from endometriosis patients. Feel free to send me a Facebook friend request if you like too. Just click on the pink heart that has an F for Facebook (in the blog’s sidebar). That will take you to a screen where you can sign into Facebook. From there, you should automatically reach my Facebook profile. If you send me a FB request, I can try to help you meet other endometriosis patients on Facebook too.

I really hope you’ll stop back here. There really are many endo patients who leave thoughtful, insightful comments on this blog. So, please stop back.

If I don’t hear from you again before your surgery, best of luck! Feel free to let me know if you have any questions before then, though, and I’ll do whatever I can to help.

Take care and please keep in touch!

Jeanne

31 JeanneNo Gravatar { 04.16.12 at 12:48 am }

Meg:

How are you doing?

Jeanne

32 MegNo Gravatar { 05.09.12 at 1:34 am }

Jeanne,

I am sorry it has taken so long for me to respond things certainly have been crazy these past few months.

My surgery (it seems like forever ago) went very well. What shocked my doctor, my family and me was that there actually wasn’t any endometriosis. My first reaction was, “well then why do I still hurt?” it turns out that in the surgery they were able to see that my colon had some significant problems, so I am actually going to be seeing a gi dr within a week and am going down the road that will probably lead to a diagnosis of crohns or something similar. Despite the fact that I am still dealing with a great deal of pain and don’t have a diagnosis just yet I am very thankful that I dont actually have endo. After seeing my mom live with the terrible complications I know how truly fortunate I am that I can cross that off of my list of possible diagnosis.

Other than that my surgery was very easy. For anyone who will be having a lap, it really is not that bad. I mean I took meds for pain, but I would do it again if it would solve my pain related problems

Jeanne thank you for your support! And I can’t tell you how much reading this blog helped ease my mind before surgery :) thanks again

-meg

33 JeanneNo Gravatar { 05.09.12 at 2:02 pm }

Meg:

Thank you so much for taking the time to drop back in to leave an update on your situation.

I’m glad your surgery went well. I hope that the GI doctor can get things sorted out for you. So they saw the colon problems from outside of it? Have you ever had a colonoscopy before?

Did the doctor give you a copy of your operative report? If not, it should be easy to request by signing a release form. I always get a copy of my operative report after surgery. It could come in helpful down the line. This is especially true if there is any uncertainty or lack of clarity about the diagnosis.

I can understand why you would feel relief at being told you don’t have endo when you watched your mother’s struggles with it. I definitely don’t mean to rain on your parade at all. If for some reason, however, things are not easily sorted out with this next doctor… just bear in mind that it is possible for doctors to miss endometriosis during surgery. To be clear, I’m certainly not suggesting that your surgeon gave you incorrect information. I just want you to be aware for future reference that it wouldn’t be the first doctor to miss endometriosis during a laparoscopy.

I’m glad the surgery was easy for you. Some people have similar experiences to yours (easy). Others have a more difficult time. Still others fall somewhere in the middle. I’m glad your surgery was in the easy category.

My pleasure! I’m really happy to hear you found it helpful. Thank you again for stopping by with an update. Best of luck to you moving forward in search of a proper diagnosis!

Jeanne

34 JadaNo Gravatar { 07.17.12 at 11:40 pm }

I’m 15 now, but my doctor told me I had endometriosis about a year and a half ago. I have not had the surgery to make it an official diagnosis, but we’re pretty sure through a process of elimination. The pill helped until I was taking the inactive pills a week each month until the 3rd month. At that point, I was hurting through my prescription pain medicine even on the active pills. The pain was so intense I sat in my first block class with tears running down my face. My mom an I decided that was to far, and I am now on ____ [Editor's Note: The drug name has been omitted as I try to avoid publishing specific brand names of medications on this site]. It’s taking me longer than usual to lose the pain and bleeding, but I’m on my way. I’m about two weeks away from my 5th shot, hurting, and bleeding. Right now I’m feeling hopeless. This is uplifting and I’m just praying for peace and fertility when the time comes!

35 JeanneNo Gravatar { 07.18.12 at 12:42 pm }

Welcome Jada!

I’m very sorry to hear about your pain! It’s wonderful that your mom is being so supportive and helping you advocate for yourself. I’m very sorry to hear that you’re feeling hopeless. Chronic illnesses can certainly contribute to such feelings. I hope that you’ll visit here regularly. It’s a place where you can have the opportunity to meet others with symptoms similar to yours. It can be a huge comfort just to be connected with others who understand.

Please feel free to share this site with your mother too. It might act as a springboard for conversation about your situation. I’m glad you have found something here uplifting and I hope you get the peace you’re looking for plus the fertility when the time comes. Finally, hopelessness can come in different degrees of severity but if you ever feel the more serious end of the spectrum, please check out this post about suicide prevention.

Hopelessness can escalate quickly. From what I have seen over the years, in interacting with patients who have all sorts of illnesses, being proactive is important. Rather than waiting for a relatively mild state of hopelessness to grow deeper and deeper, it can really be helpful to deal with it earlier on. Please do not hesitate to seek professional assistance and/or treatment for the emotional repercussions that so often accompany chronic illness.

Best of luck to you and I hope you’ll keep in touch!

Jeanne

36 heatherNo Gravatar { 09.09.12 at 11:09 pm }

Hi Jeanne

I have just read through all these posts and cannot believe that it is like reading my own daughters story. My 13 year old had her first bout of pain at the end of January that led to her appendix being removed to find out after the surgery that it wasn’t appendicitis. About 4 weeks later we went through another bout of intense pelvic pain and ended up back in ER with a referral to see a Gynacologist. We are now 8 months on and no further along,
We have had Endo tentatively diagnosed due to the fact that we have a strong family history and the symptoms that she describes but they are not prepared to do surgery at this stage, then we have been told that they can’t diagnose Endo at this age and it goes under the term of Undiagnosed Pelvic Pain and Irritable Bowel Syndrome.
Approximately every two weeks we go through the pain cycle at ovulation and again when she has her period which is mainly just passing big clots. We find the ovulation pain the most difficult to manage and struggle at times to get this under control.
It seems everywhere we turn we are given a different scenerio and this is now really affecting my daughters mental health. She feels as though the Dr’s don’t believe her and is now starting to dig her heels in and refuse to go to some of the appointments. It is a real help to me to read through these posts and as we are back off the the Gynae on Wed I am now armed with some new questions to ask.
After reading through Valerie’s account of her daughter I see alot of similarities although my daughter’s pain is always felt in the lower abdomen and mainly down the middle sometimes slightly to one side or the other and she describes the pain as hot and bubbling.
Thank you for sharing your story having found this it has certainly been a help to me and has armed me with some new info as we head back onto the rapidly turning wheel.

Regards
Heather

37 JeanneNo Gravatar { 09.10.12 at 1:07 am }

Welcome Heather!

I am very sorry to hear about your daughter’s pain. It can be incredibly frustrating finding the right medical professionals to properly diagnose whatever is going on in a case like hers… and to address it appropriately. Yes, sadly, there are too many stories like this out there… as you gathered from just the people who commented before you on this blog post.

I’m really sorry they removed her appendix only to determine that it was not a case of appendicitis. Sadly, I’ve heard stories like this many times. Do you have the operative reports from her surgery, by any chance? The reason I ask is that when the appendiceal tissue was analyzed to ultimately determine it was not appendicitis, the pathologists may well have recorded detailed biopsy results on the appendix that was removed. In other words, if there was endo on the appendix, it may be documented in the medical records. I know it seems like if that were the case the doctor would have automatically told you so. However, that’s not necessarily a safe assumption.

When I had my appendix removed in 1996 (due to a carcinoid tumor), my doctors (two surgeons on that operation) did not tell me the whole story. I read the operative report where it described the size of the appendiceal tissue sample they’d analyzed – and that motivated me to call and ask questions. It was only then that I was fully informed about what had taken place. (By the way, these were not fly by night doctors. I think they simply forgot to mention some pertinent details to me. Doctors are busy and sometimes they forget to share everything). Anyway, I was glad I read my operative report because there truly was important information that had not been given to me.

Granted… even if your daughter does have endo, her appendix could have been 100% healthy and the biopsy of that tissue could have been negative. If so, this would not rule out endometriosis as a possibility. The pain endometriosis sometimes produces can be mistaken for appendicitis in some cases. In other words, it’s possible that she has endometriosis… that none of it was on the appendix they removed… and that it is still there in some unknown location of her body.

At the same time, she might not have endometriosis at all. (You probably saw info in the blog comments above about some of the great many illnesses that can be confused with endometriosis).

I’m not a doctor but I don’t understand the rationale for labeling her as having “undiagnosed pelvic pain” and/or IBS. In other words, I personally don’t think their discomfort with performing a laparoscopy should mean they slap a couple of other labels on it randomly. There’s no denying that she has undiagnosed pelvic pain, of course. I guess I’d just hate to see them use labels like that in lieu of obtaining an official diagnosis. (IBS is a very common diagnosis doled out to women who do get verified at some point as having endometriosis. I myself was diagnosed with IBS many years ago. Whether it’s a co-existing condition to my endometriosis or whether I was misdiagnosed would be hard to say since the criteria for IBS diagnosis can be pretty wishy-washy… or at least it was when I was told I had it years ago).

As far as whether endometriosis can be diagnosed at the age of 13, I have heard of it happening. My hunch/guess is that you haven’t found a doctor who is accustomed to doing laparoscopies on girls so young. In my opinion, this would make an argument for the value of searching for a doctor experienced with diagnosing/removing endometriosis in girls as well as women…. in case you reach a point where surgery does look like a valid option worth considering. Sadly, it may take some time to find such a doctor and there may be a wait to get in. (It’s difficult enough finding a great doctor for endometriosis if one is a woman – but finding a doctor for a girl is even tougher).

I’m really sorry your daughter is struggling so much physically and mentally. I can certainly understand why your daughter is wary of doctors at this point. I can’t say I blame her! However, there ARE great doctors out there and persistence ends up being worth it when such a find is made.

Your daughter is very lucky to have you on her side! Kudos to you!

I hope things go really well on Wednesday. I hope you’ll stop back here and let us know how it went. The more information people share with each other in these situations, the more people are potentially helped by it down the line.

In the meantime… While you are navigating the often-frustrating traditional medical establishment, it may be worth looking into “alternative medicine” options for alleviating some of her pain. A couple of examples many women I know have found helpful are acupuncture and homeopathy. It might be worth looking around your area for a great acupuncturist and/or a great homeopath or naturopathic doctor. I know that alternative medicine has certainly helped me!

Good luck! Please keep in touch.

Jeanne

P.S. I posted the link to this blog post on Facebook and asked my Facebook friends to take a look at your blog comment in case any of them should have feedback for you that might be helpful.

38 endochickNo Gravatar { 09.12.12 at 7:19 pm }

Jeanne – what an adorable wedding picture! Your joy was truly evident in that pic :)

As if being a teenager isn’t difficult enough, having a condition causing pain and no diagnosis… that’s enough to make any teenager want to give up! Glad you could offer her some wonderful advice.

I remember that walk to the nurse’s office. I, too, wanted to be in class. Not wanting my grades to suffer, I would try to tough it out, sometimes passing out from the pain. And it was sad how many times my father, doctor, and school staff didn’t take my cries seriously. At least now this disease is getting more attention, and doctors realize it can occur in young women.
endochick´s last [type] ..Ask Endochick – Online School

39 InaieNo Gravatar { 09.20.12 at 1:48 am }

my child has been in pain since May. We tried every diagnostic exam we could think of, in over 4 hospitals and two countries. She has been through specialists, did MRIs, CT scans, numerous blood tests and everything one could think of, and we found nothing. They considered stomach, intestines, ovaries. Nothing to be found.
I had he in a non gluten, non dairy, no sugar, no citrus, no rice diet (now imagine what this poor kid was eating)…
Now when she says she is in pain I feel like crying.
We tried bioresonance, hypnosis, cranium sacral treatments and massages. It just doesn’t work.
Tried to make her laugh, tried to ignore it, it just would not go away.
I will ask for a laparoscopy and see if I can get a diagnosis. Ican say for sure that knowing is definately better than not knowing. And I am not prepared to wait for 10 years with my daughter in agony. Thank you for sharing your experience. It really helped me.

40 JeanneNo Gravatar { 09.20.12 at 2:28 pm }

Welcome Inaie!

I’m really sorry to hear that your daughter has been through so much! For so many illnesses, the process one must go through to obtain an accurate diagnosis is too long and too painful. I hope that you get answers for your daughter as soon as possible.

You mentioned some of the many tests she’s had done and some of the parts of the body that have been considered but, if you don’t mind me asking, what are her specific symptoms? The reason I ask is not because I think I have the ability to diagnose her in any way, of course. I do not. (Please see my blog’s disclaimer). I ask because I’ve seen over the years that talking with others really can sometimes help in the search for the right type of doctor(s) to properly diagnose and treat whatever it is.

I know it must be incredibly difficult to see your daughter suffer. Please take comfort in the fact that you are doing everything humanly possible to help her. After all, you’ve taken her to 4 hospitals in 2 countries in search of proper medical care for her condition… whatever it may be. How many people can say that?

Without knowing more about her symptoms, it’s really difficult to even hazard a guess as to what type of doctor might best help her. Bearing in mind my disclaimer above, I can say that I myself have found acupuncture to be unbelievably helpful for many of my chronic pain conditions. Sometimes acupuncture has helped me in times when I’ve had new symptoms crop up but have not yet been diagnosed properly. For me personally, acupuncture has been an amazing means of getting pain reduction. It’s also very relaxing.

Whether a laparoscopy is in order for your daughter, I do not know. Without having a better understanding of her specific symptoms, it’s hard to know what type of doctor can help her get diagnosed properly. I agree that knowing what one is dealing with is better than dealing with the unknown. I hope that you are able to get answers soon for why your daughter is in pain. Please keep in touch as there are many people here who can empathize and who have insights that might even be helpful for your daughter. Thank you.

Take care,

Jeanne

41 EmilyNo Gravatar { 12.19.12 at 10:08 pm }

Hello, my name is Emily M., and I’m 15 years old. [Editor's note: Emily is a minor and I have removed her full last name from this comment to protect her privacy]. I’ve been having a period since I was in the 4th grade, I was 9 almost 10 at the time I started. I always had severe period pains, and would cry for hours complaining of the pain. By the next year, I was put in the hospital for my period pains because of 2 ovarian cysts. Still, my mother wouldn’t take me to see a specialist, she was diagnosed with endometriosis a few years before and had many surgeries removing it. I spent the next 3 years in agonizing pain and she figured I just had more cysts that would eventually go away. This year, my pain and other symptoms got so bad I ended up in the hospital again. The doctors in the ER gave me an ultrasound and said I did in fact have more cysts, and sent us to a specialist. My specialist done another ultrasound, and found nothing but after explaining all of my symptoms from the agonizing pain, to the late nights crying and throwing up on the bathroom floor, to missing school because I can’t move. He wants to do a lap on me, but he doesn’t like operating on teenagers and would like to put off as long as possible. He put me on birth control to see if it would help, but so far it’s been making it worse I go back in two months to see if he decides to do the lap. My mother now knowing I could have the same thing she had feels awful she didn’t take me sooner to get me some help.

42 JeanneNo Gravatar { 12.20.12 at 12:12 pm }

Welcome Emily!

I am so sorry for everything you’ve been through! I’m also sorry to say that I’m pressed for time at the moment but I will reply to you ASAP. Right now, I need to lie down but I just figured I’d post your comment now in case anyone else on this comment thread has feedback for you.

I really want to give your remarks my full attention and right now I’m just feeling too ill to do so. Please bear with me as I will reply as soon as I possibly can. Thank you for your patience.

Talk with you soon!

Jeanne

43 EmilyNo Gravatar { 12.20.12 at 5:42 pm }

Thanks , just take your time ! Hope you feel better soon !

44 endochickNo Gravatar { 12.20.12 at 7:34 pm }

Emily, welcome to the early period club (as if that’s any consolation). Sorry your road has been so rough. It sounds as if your mother is coming around now. If so, great! Based on your symptoms and your mom’s diagnosis, a laparoscopy wouldn’t be out of the question. Operations are a big deal — even a laparoscopy. That’s why doctors don’t jump right into doing them. With that being said, though, if your doctor has tried first line treatments and they are not working, the options are running out. They will eventually have to go in and find out what’s going on. Once in there, if they find endo they can remove it. This isn’t a permanent fix, though. Please understand this. You will still need to treat the endometriosis symptoms you have. There is no cure for endometriosis. There are various Traditional Western Medicine options available and different doctors will tend to favor different treatment options for different people. (Some examples of “traditional” treatment options aside from birth control pills include GnRH antagonists, which induce menopause, and a hormone emitting intrauterine device).

Before you and your mom decide on how to proceed — i.e. surgery or medicine — read up on each choice! Believe me, you cannot read enough. Ask your doctor questions (even the things that may sound silly in your head) and don’t enter into anything that makes you feel uncomfortable. It’s your body, even if you’re 15. You have the right to say “no.”

Hope you get a diagnosis and proper treatment soon, Emily. Good luck!
endochick´s last [type] ..Dizzy Dysautonomia

45 JeanneNo Gravatar { 12.21.12 at 3:02 am }

Emily:

I am very sorry for your years of agonizing pain. Dealing with the type of symptoms you’ve experienced is difficult enough for an adult. (There is much room for improvement in how the medical profession treats these symptoms!)

There is also a great need for increased awareness and understanding about endometriosis (amongst doctors, nurses, therapists, employers, schools, etc.) Until the general public has a much better understanding of the serious nature of endometriosis (that it can cause debilitating pain, that it sometimes leads to infertility, etc.), stories like yours and mine (and many others’ stories – including people on this very comment thread) will be repeated in future generations. Trying to do something about this problem (lack of awareness) is a passion of mine.

To have to deal with such symptoms as a 9 year old is just an overwhelming prospect! I’m so, so sorry. The pain you’ve experienced is clearly not normal. I’m sorry that you were hospitalized for ovarian cysts. There are different types of ovarian cysts. Some are endometriosis but others are not. A biopsy can differentiate between various types of ovarian cysts.

There is much misunderstanding about endometriosis. Many people are under the incorrect impression that endometriosis cannot affect girls (vs. grown women). However, it can affect girls!!!

I obviously don’t know all of the ins and outs of your situation and your mom’s but it’s possible that one or more doctors misinformed her – and told her that what her young daughter was experiencing “couldn’t be endometriosis”.

Since you had had ovarian cysts and since doctors did not biopsy them to identify whether they were/weren’t endometriosis, your mom might have assumed (or been told by doctors) that they were non-endometriosis cysts.

To be clear, I obviously have no way of knowing what the correct diagnosis (or diagnoses) in this case is. I guess what I’m trying to say is that your mom could have been given incorrect information by medical personnel and that could have affected what she did or didn’t do about your situation. It sounds like she may also have been still coming to terms with her own endometriosis diagnosis. Perhaps she wasn’t mentally ready to accept that the illness that was making her so sick might be affecting you too? Just a thought.

I’m so sorry you wound up in the hospital again. To me, this (repeated hospitalizations) is a red flag that something is wrong – and that pinpointing what that is really matters. Unfortunately, there are significant limits to what an ER can do for endometriosis patients… generally speaking. (Again, I realize you have not been officially diagnosed with endometriosis).

It makes sense that they’d send you to a specialist for follow-up on the cysts. The trick is whether or not that specialist is the right doctor for you. In other words, you really want to see a doctor (just in case you do end up pursuing a laparoscopy at some point) who performs frequent laparoscopies, is highly skilled at recognizing endometriosis and removing it, and who won’t allow your age to keep you from the proper diagnosis/treatment of whatever is causing your symptoms.

That said, no one wants a doctor who takes it lightly to “just do a laparoscopy” on a young girl either. Surgery is necessary to definitively diagnose endometriosis (if indeed it is present) but taking the decision to operate too lightly is not good either. In other words, there is a happy medium between “under-reacting” and “over-reacting”. (Plus, not all surgeons are comfortable performing laps on girls – period… no pun intended! – and the last thing you want is a surgeon talking him or herself into operating on you)! There are other docs in the sea. You want one who is confident and wants to operate on you because he/she thinks it’s in your best interests and that he/she has the right experience for the job.

Only the patient and carefully chosen surgeon can make the decision about when to do a laparoscopy. (Obviously, for minors parental consent comes into play too).

Since your mom has endometriosis herself, she may be able to help you navigate the system (finding the best doctor for your symptoms and age, how to avoid “bad doctors” and other pitfalls, etc.)

I don’t know your doctor and certainly cannot analyze his thoughts on all this. I think a great many docs would be more cautious doing a lap on a girl than on a woman. Surgery itself can create scar tissue (which can cause pain). On the other hand, not operating… and then finding out later that it was endo (and that it grew completely out of control) can be problematic too.

So, there is no guaranteed “safe” path when you just don’t know what you’re dealing with.

So are you saying you’ve been on birth control pills (BCPs) for just 2 months? I ask because it can take about 3 cycles to determine if a given BCP is going to be helpful. Like you, my doctor put me on BCPs before my first laparoscopy. Those BCPs he prescribed me made me much sicker. In retrospect, I learned (from a much better doctor) that the type of BCP he gave me was not a good type to use for someone suspected to have endo! However, I didn’t know that at the time. I toughed it out for awhile but it became obvious (even to him) that BCPs were making me sicker. (Over the years I tried many types!)

So, I then had a laparoscopy (which, in my case, confirmed the endo). Again, there are other types of BCPs as there are multiple classes of them. Sometimes it can take some time experimenting to find the best BCP for a given person. Some people can’t tolerate them at all.

I’m guessing maybe your mom feels badly that she didn’t recognize this as potential endo sooner. There are OB/GYNs out there who miss it all the time. So, if it gives you any peace of mind to know that… maybe it could be helpful. Goodness knows that tension between you and your mom won’t help either of you.

I myself struggled with endo for 10 years before a laparoscopy confirmed it. My mom has endo too. She did not mention her endo to me until after I’d been operated on. I know that might sound strange – and I had a hard time wrapping my brain around it back in those days.

Looking back at our situation, I think a combination of her being in denial about her own condition, her not really understanding endo, her not wanting to believe I had endo, the fact that she and I shared a GYN who I now know was INCOMPETENT, etc. were all factors in me finding out about her endo after my own diagnosis (which followed 10 years of suffering without my symptoms being diagnosed). My mom’s endo manifested very differently than mine and I truly don’t think she knew HOW to help me. I ended up figuring it out without my mom advocating for me. I don’t hold this against her in any way. I know she did the best she could with what she knew/didn’t know.

I hope that you will please keep in touch. I am very interested in hearing how you make out – and there are many women and girls here who are very helpful & supportive to talk with.

Best of luck and please do stop back anytime!!!

Jeanne

46 JeanneNo Gravatar { 12.21.12 at 9:42 am }

Endochick:

Thank you very much your feedback/support for Emily!

I’d like to add that I have also found “alternative medicine” very helpful for treating endo symptoms. In particular, I have found acupuncture immensely helpful! Again, though, getting a proper diagnosis is important.

Emily:

It might be helpful to look the blog comments here over with your mom. (It can be very helpful to compare notes with others who are living with similar symptoms). Please keep in touch. Best of luck to you!

~~~

Jeanne

47 JennNo Gravatar { 03.19.13 at 9:31 pm }

My daughter 14 yrs old,

48 JeanneNo Gravatar { 03.19.13 at 9:37 pm }

Welcome Jenn!

Unfortunately, it looks like your blog comment got cut off somehow. Please try submitting your comment again. I look forward to hearing from you.

Jeanne

49 JennNo Gravatar { 03.19.13 at 9:40 pm }

My daughter, 14 yrs old has been in pain for about three months now… Her pain is located on the right lower side of her abdomen.. She had an ultra sound done about a month ago. They found a ovarian cyst 2.2cm..but doc said it was not large enough to cause her pain. went to see a pediatric gynecologists, prescribed an X-ray.. Gynecologists said her bowels were backed up and gave her [a laxative]… she took [it], cleared herself out…and still in pain… Had a ct with contrast today and they saw nothing… My daughter is extremely active and plays field hockey yr round..however , last three months have been hard with the pain. The pain is in the same spot…. Could this be endo???

[Editor's Note: the name of the laxative Jenn mentioned has been omitted because I typically don't publish specific drug names on my blog].

50 JeanneNo Gravatar { 03.19.13 at 11:43 pm }

Jenn,

I’m very sorry to hear about your daughter’s pain! She is lucky to have you looking out for her and searching for answers. Before I proceed further, please see this link containing my disclaimer. As the disclaimer mentions, I am not a health care professional and cannot diagnose anyone with anything. With that said, I can look at the information you provided and try my best to answer your question to the best of my ability. As far as the location of her pain being on the right side, I can’t help but wonder whether or not anyone she has seen has evaluated her to determine whether there might be any issue with her appendix? Again, I’m not able to even speculate about what it might be but I don’t think it hurts to ask whether that was considered – given the location of her pain.

If the people she’s seen have not looked at that possibility, I think it’s worth mentioning. Granted, too many doctors are infamous for resenting being “told what to do” by patients (or patients’ parents). So – heads up – pressing for answers may be met with resistance. However, if no one has looked into the possibility of an issue with her appendix, I think it’s a valid thing to ask about. As far as the ultrasound is concerned, I’m honestly not sure what size of cyst would cause doctors to expect pain. Was the cyst on the right side?

You mentioned the pediatric gynecologist did an X-ray and then you mentioned that she was told that her bowels were backed up. Was there a partial obstruction that appeared when the radiologist viewed the films? How did they come to the conclusion that her bowels were backed up? From X-rays? Or did they make an educated guess off of gastrointestinal symptoms she had? In any event, it sounds like the laxative did not help her pain.

What were they looking for when they did the CT with contrast? Did they say? I understand they said they saw nothing but it’s still helpful to know what they were looking for because it (potentially) helps with process of elimination and it helps you determine next steps. I’m sure all of this must be particularly difficult on her because she’s so active in sports.

Now, to your ultimate question. As I said earlier… I can’t say whether she does or doesn’t have endometriosis. Obviously, only a properly trained doctor could make this determination based on results of an outpatient surgery called a laparoscopy. To take your question literally… Yes, her pain could be caused by endometriosis. Again, that’s not me diagnosing her with endometriosis as I’m not a medical professional and have never even met her.

There are also other medical conditions that could explain what you’re describing. So, getting an accurate diagnosis is very important.

Statistically speaking, a large percentage (but not all) of women and girls who experience abdominal and/or pelvic pain do get diagnosed with endometriosis eventually. For many, this process takes years. (I don’t mean to scare you). So, yes, it is possible that she has endo… but only a laparoscopic surgery by a well-trained surgeon who really understands endo could give you a definitive answer.

I would suggest continuing to advocate for your daughter by asking questions, pressing doctors for answers, and educating yourself about the various possible causes of her pain. If you are not satisfied with a doctor, don’t hesitate to switch to another one who is more responsive. If you switch doctors, I would suggest getting copies of all her medical records (including all tests/procedures she’s had done). That way you have them for your own records (and you can provide copies of them to the new doctor). When a battery of tests is run, it’s always helpful to keep your own records as you go. It saves headaches later! Signing a simple release form at the place you need record from will get you those records. However, there is generally a fee for copying the sheets. Fees vary but many states have a maximum allowable charge for each page. For example, it was 75 cents maximum per page in New York State the last I knew. This can add up, of course, but getting the records can save lots of headaches as time goes on.

Best of luck to you and your daughter and please don’t hesitate to stop back with any questions or comments!!

Jeanne

51 JennNo Gravatar { 03.20.13 at 4:36 am }

Jeanne, ty for your response.. Her appendix is fine, they ruled that out from the beginning…her cyst is on the right side.. The gynocolgists requested she have an X-ray…there was not a blockage.. She was just constipated and intestines were full of stool. I thinking they did an CT to make sure it was not her appendix…I work in the medical field.. I credential all the docs within a major hospital so medical records are always accessible for me..I feel terrible for her.. She was out of school for 7 days a little over a month ago, the pain is still there and she has complained of nausea as well. Please understand that my daughter is never sick….so when she complains , there is something wrong.. Not sure what to do next…do I request an MRI….or do I inquire about the endo…

52 DianeNo Gravatar { 03.23.13 at 12:54 pm }

Jenn, I’m sorry to hear about what your daughter is going through. I had my first ovarian cyst rupture when I was 14, and I’ve had several more problems with them since (I’m in my 30s). As Jeanne said, we can’t diagnose her, but I can speak from experience when I say that cysts don’t have to be enormous to cause pain. I think it’s certainly possible that she could feel pain from a 2.2 cm cyst. With endometriosis (and cysts too, I think), the amount of pain is not necessarily related to the amount of the disease. Some women have very little endo but tons of pain, and some have lots of endo but barely feel it. I have lots of endo and lots of pain. I hope this helps – good luck!!

53 JeanneNo Gravatar { 03.23.13 at 2:01 pm }

Jenn:

I’m glad you have access to all of her records. If you are able to get hard copies of them, it might be helpful to you both in the future. It sounds like her pain is severe and I can understand why you are so concerned. Obviously her quality of life is being affected if she has missed that much school because of the pain.

I am not a health care professional and really can’t say whether she should have this test or that. I will say that given the fact that MRIs are very expensive, requesting one could be met with extreme resistance from her doctor(s). Whether an MRI would reveal anything or not isn’t for me to say. My point is that if you go into a doctor pushing for something expensive like an MRI without being able to justify why you think she should have one, it could potentially damage the doctor/patient relationship. Again, I’m not saying she should or shouldn’t have an MRI. I’m not a healthcare professional and that’s not my place to say.

What makes endometriosis tricky is that laparoscopic surgery is the only definitive way to diagnose it. I can’t say, obviously, whether your daughter does or doesn’t have endometriosis. If, for some reason, she does have endometriosis… only a laparoscopy could make a definitive diagnosis.

If you are not happy with the doctor(s) she is seeing, I would suggest continuing to search for the right doctor for her… to narrow down what is happening in her case.

As far as her cyst is concerned, I sent a message to my friend Diane because I know she has a long history with ovarian cysts. She has posted some comments for you here. Bear in mind that ovarian cysts are not necessarily endometriosis. There are other types of ovarian cysts besides endo.

When a patient has cysts caused by endo, they are often referred to endometriomas or “chocolate cysts”. A fair number of endo patients (but not all) do have cysts on one or both ovaries. Whatever is causing your daughter to be ill, finding the right doctor to take her symptoms seriously and to address them is key.

Diane:

Thank you for your comments. I knew you’d have some helpful feedback on this situation. Thank you for your support for Jenn as she strives to find answers and relief for her daughter!

~~~

Jeanne

54 KimNo Gravatar { 01.17.14 at 5:30 am }

My now 15 year old child I believe has had endometriosis for several years . Just getting her father to believe her has been a trial. How to get high school officials to hear you, without putting my kid “under the knife” is completely frustrating.Can’t someone in the medical community please make some sort of information sheet or pamphlet that could alert school officials and pediatricians to the symptoms of this disease. It’ been helpful to find information on the web, but does that have to be the only tool that we have as parents to fight for our children. It’ time word got out,out there.
Any way I have found out that cruciferous vegetables can help with the stomach emptying in the morning. I’ve read that the problem with that could be that her stomach is not making enough acids to breakdown all of the food in there. I am looking to help to heal her by changing her diet, to try to keep away from her any endocrine disrupters too.
Here’s hoping that the other people who need to hear this message are getting it.

55 JeanneNo Gravatar { 01.24.14 at 7:33 pm }

Welcome Kim!

I apologize for the delaying in posting your comment and responding. For a variety of reasons, I have not been online in quite awhile.

I’m sorry that your daughter is struggling with symptoms that cause you to suspect she has endometriosis. It is bad enough to be ill but the struggle to get people to understand is sometimes just as bad as the symptoms themselves. There definitely needs to be more awareness and understanding in the medical community and within the schools, as you alluded to. I’m sure you must be very frustrated about that.

The good news for your daughter is that she has a mother who is working hard to support her! You obviously care about your daughter’s well-being and are being proactive by avoiding chemicals such as endocrine disruptors. By the way, if you’re not already familiar with it, this awesome, information-packed database can be extremely helpful for avoiding endocrine disruptors and other harmful chemicals:

Skin Deep

Thank you very much for posting your remarks (and for your patience). Best wishes to you and your daughter and please stay in touch.

Jeanne

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