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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 { 03.20.13 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…

2 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!!

3 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

4 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.

5 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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