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Message To 13 Year Old “Flocked”

This post will be a response to a blog comment I received on a recent post. I felt this comment warranted a post of its own.

First, I would like to include the comment left on a previous blog post that motivated me to write this post in response…

Comment by “Flocked”:

Hi,

I was looking for a while to see if there were any people who like me have pain day and night and in between! Just ALL the time, not just during my period even when I don’t have it! And I’ve had my period for about 7 months now (right after my dad left us) and I’m not sure if it’s normal that I have 17 days of period and then pain in between! I’m on birth control but I vomit 13-17 times a day! So I’m not sure if its really helping, I know I can’t take pain killers or I’ll get allergic like my mom. It’s only a short term solution but even that doesn’t help much. Doctors don’t believe that a 13 year old could have it. Do you have any advice for me?

Thanks I’d greatly appreciate it!

Please note that I cannot and do not give medical advice. What I can do is share information, support, and in some cases tips/suggestions/resources.

Before I respond to the comment above, I would like to direct readers to my disclaimer page.

I wish to emphasize, as I have in many preceding posts that the definitive means for diagnosing endometriosis is a laparoscopy. (I am not even sure that this commentator was asking about endometriosis but that possibility jumped out at me based on the above comment). According to the Endometriosis Association:

Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices.

That said (and not knowing whether the above patient has been diagnosed by laparoscopy), it is important for people to understand how very common it is for young patients to be dismissed. It’s important for people to understand that the average diagnosis of endometriosis occurs 9.9 years after the onset of symptoms. It can also be extremely difficult to find physicians who wish to perform surgery on such young patients… despite the fact that a laparoscopy is the definitive method for diagnosing endometriosis. Where does all this leave a young patient who is suffering and doesn’t know where to turn for the medical care she needs? These are some of the classic challenges that endometriosis presents.

Again, to be clear, I am not diagnosing the girl who commented on my blog. Only a laparoscopy could confirm or rule out endometriosis as the cause of her symptoms.

My endometriosis symptoms began at age 13 and I was undiagnosed for the first 10 years. Now 41, I have lived with endometriosis for nearly 28 years. I have written before about some of the adventures I experienced when I was younger… such as my account of a particularly memorable (for all the wrong reasons) field trip I took in seventh grade. I also previously shared a reprint of an interview that Amy Jussel published on her organization’s blog Shaping Youth (an interview that I published on my former blog, Jeanne’s Endo Blog).

Now, moving on to specifically addressing the comments and questions of the brave 13 year old who posted a comment on my blog today.

I am going to work in a backwards fashion. By that I mean, I’m going to answer your last question first; I need to emphasize that I am not in a position to give medical advice. Frankly, no one should provide medical advice via the Internet. (Though some will certainly try). However, I do have some suggestions and ideas that might help you and I can certainly provide you with loads of empathy as you begin your journey to find out what is causing your symptoms and how to obtain relief.

In answer to your question about whether there are “people who like you who have pain day and night and in between”, sadly the answer is that there are far too many. The good news and flip-side of this is that you are not alone. I have personally experienced immense support from my fellow chronic illness patients and have found fellow patients very informative as well. Networking with people who understand how you feel is mutually beneficial.

Now, the reason I jumped right in (above) with references back to my own days as a 13 year old was the fact that you specifically mentioned your period in your blog comment. This is not to say that you might not have something entirely different going on than endometriosis. Based on the information you provided, it sounds like a possibility. Again, the only definitive diagnosis for endometriosis is a laparoscopy. So, finding a physician qualified to perform a laparoscopy and skillfully remove any endometriosis he/she might find would be crucial.

As far long periods are concerned, I feel just terrible for you because I’ve been there too. I once had a period every day for over a year (August 1994 – August 1995), including when doctors put me on hormones intended to induce a medical menopause. I just kept on bleeding. Is your doctor aware of how long your periods are? Have you had a laparoscopy to diagnose endometriosis? Or is your doctor prescribing birth control pills without having performed a laparoscopy first?


I hate to be the bearer of bad news and I only have the few details you provided on which to say this but it might be time to search for another doctor for either a second opinion or an outright switchover. Again, I am not dispensing medical advice but if I had a patient who I suspected has endometriosis I would:

1) refer her to an experienced, highly-skilled laparoscopic surgeon

2) not just prescribe her birth control pills “to see what happens” without having performed a laparoscopy to verify what is going on (many conditions’ symptoms mimic those of endometriosis)

Having bleeding for such a long time made me anemic. This, in turn, made me feel sick in other ways.

As far as feeling sick all the time (not just during periods), there are many endometriosis patients who can relate to this.

When I was a teenager, an average period for me was 11 days (some longer and some shorter). This is clearly not normal but it was “normal” for me. I also used to vomit… though not as often as you described. That is a great deal of vomiting. I know that when my pain level got high enough, it triggered vomiting. The amount of vomiting you are experiencing is a great deal. I don’t know what else might be causing that. Is your doctor aware of that? Were you vomiting like that prior to taking the birth control pills? I took 9 or 10 different types of birth control pills years ago and some of them actually worsened my symptoms. As it turns out, the class of birth control pills my first doctor had prescribed specifically for my endometriosis tends to make the symptoms of endometriosis worse! A more knowledgeable doctor later helped me understand that those pills were, in fact, worsening my symptoms.


If you cannot tolerate painkillers and if, by chance, you have not obtained an official diagnosis yet, I would view it as even more important in your specific case to obtain a proper diagnosis. Not being able to take painkillers eliminates quite a few options, obviously. Getting a proper diagnosis (if you haven’t already) is important. There are many ways of managing symptoms others than “traditional” ones such as painkillers and birth control pills. I have written about and even done video on acupuncture because it has helped me immensely.

When you say, “doctors don’t believe that a 13 year old could have it”, I am assuming you are referring to endometriosis. Is that correct? I don’t mean to jump to conclusions. I am basing my assumption on what you said in your comment.

I hope that you will return to my blog. Regardless of what is causing your symptoms, I believe that the readers and commentators of this blog may very well be of some help to you moving forward.

It is admirable, resourceful, and brave of you to seek out information on your own at such a young age. You are already taking useful steps that will enable you to access resources to assist you in coping with your medical condition(s). Hang in there!


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


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Reading: Message To 13 Year Old “Flocked”

59 comments

1 FlockedNo Gravatar { 02.15.10 at 9:33 pm }

Ya I have had vomiting prior to the birth control. And I am looking for a doctor that will perform the laparoscopy but most are not keen on the idea. Neither am I but I have to skip school now and I am failing classes because of pain. The doctors do know about the long periods but did not see anything on the ultrasound but that is very common. It’s just hard because we have all the proof if I can call it that, my mom has endometriosis (although not as painful as I have it) and her mom and her grandmas from both sides. So it goes way back. She isn’t telling me about how painful periods could be as to not scare me but I had to bring it to her attention because sometimes I cannot move. I know that I have an option to just cut my ovaries out or something along those lines, it seems like a good option just because I have never been keen on children. And our family is very prone to cysts. So maybe it’s a good alternative?

Do you have any websites with doctors or any contacts?

Thanks for the quick response!

2 JeanneNo Gravatar { 02.15.10 at 10:27 pm }

Flocked,

I can only imagine how difficult it is to find a surgeon because you are so young. It’s difficult enough for adults to find surgeons. I would think your age presents an additional barrier. I think this is actually one of the reasons there is such a delay between onset of symptoms and diagnosis of endometriosis.

Before I continue, I just want to mention before I forget that no matter how strong your family history of endometriosis is, there is always a possibility that something else is going on. I will have to look up the link for a post written by my friend Endochick. (To make a long story short, her sister was sure she had endometriosis because of symptoms combined with a strong family history… and it turned out not to be endo). So, a laparoscopy is very important to confirm a suspected diagnosis.

You have a very strong family history and your quality of life is clearly impacted if you are missing school. You’re right that the fact that they don’t see anything on an ultrasound really doesn’t mean much. I am so sorry for your pain! As far as the notion of having a bilateral oophorectomy (removal of both ovaries), that is a very drastic measure that is not to be taken lightly!

It is important to note that there is no cure for endometriosis (if, in fact, that is what you have). Bilateral oophorectomy induces a surgical menopause. I doubt if you could find a doctor on the planet who would be willing to perform this even if they were to find the most severe endometriosis. Frankly, if you did find a doctor who would be willing to perform this on a 13 year old, I would suggest running the other way. The hormonal changes that would be involved are not to be taken lightly among many other things.

I know that when I used to have pain so severe that I would actually black out (back in my teens), I used to have “radical surgery thoughts” myself at times. However, I can look back now and realize that what I used to picture would not have been right for me. At the time, all I wanted was relief from the agonizing pain!

I am really sorry you are suffering so much!

What country are you in? I don’t know if you have any endometriosis support groups near where you are located but I have found in-person endometriosis support groups extremely helpful for talking with fellow patients about their experiences with local doctors and getting names of doctors from people right in my own community.

If you have a large teaching hospital with an OB/GYN Specialties group, you might find an appropriate doctor there.

It might seem an odd suggestion because you’re so young but often doctors who treat infertility are well-versed with endometriosis because they see it so much. It might seem strange but you might try finding a reproductive endocrinologist who would be willing to perform a laparoscopy and provide follow-up care for managing endometriosis, if they should find you do have it.

If you can narrow down the general geographical area where you are, perhaps someone who reads this blog might be able to suggest a doctor located near you too.

I am going to see if I can find any helpful links for you. In the meantime, it would help to know what general part of the world we’re looking at. (Please don’t be too specific as I don’t want to violate your privacy in any way and Internet security is very important).

If the doctors you’ve talked with are hesitant to perform a laparoscopy, then you probably don’t want them operating on you anyway. You want to find someone highly skilled with recognizing and removing endometriosis… given that you know going in that you have a strong family history and they may well find endo. If you’re going to have surgery, you want the best surgeon you can find.

There are a great deal more resources available now than even when I was your age. I will share with you anything I think might help you. I’m going to go look for more information and I’ll post it if/when I find something. Hang in there!

Jeanne

3 JeanneNo Gravatar { 02.15.10 at 10:38 pm }

Flocked,

Here is the link I mentioned above:

Endochick’s sister

Jeanne

4 JeanneNo Gravatar { 02.15.10 at 10:41 pm }

Flocked,

I’m not sure if this will help or not but there is a “find provider” link on this site:

International Pelvic Pain Society

Jeanne

5 Amie SugatNo Gravatar { 02.15.10 at 10:55 pm }

I was unofficially diagnosed** [**Editor's Note: This comment has been edited because of terminology. Endometriosis is not considered "unofficially diagnosed" but "suspected" until confirmed by laparoscopy.] with endo when I was 12. I had the symptoms you describe as long as I could remember and these awful periods where I swear I was losing a glass or more of, er… fluid, per day. The ultra heavy overnighters would be soaked in less than an hour and I’ve have so much I’d wind up ruining pants in-between each changing. And this would go on for 10 or 12 days.

(my step-mother didn’t help, even though she knew I had it she would punish me each time I ruined cloths or it would go on too long or I would go without it since she only allowed me a limited number of pads, if at all, each month.)

I once when a year without a period when I was 18 and recently when 4 months without one only to spend the next two months with one as bad as my teenage days.

I refuse surgery or other surgical measures to “correct it.” I manage with no pain meds (though at this moment while writing this I want to go jump into the frozen over Mississippi river due to writhing in pain.)

I manage mine with an all organic 80% raw food diet, take vitamin and mineral supplements which do seems to help lessen the symptoms. I actually found relief from the 8 week long session this past december/january by taking a product with 4 “fertility” herbs. The bottle had 30 days worth and this has been the most restful, energetic, and pain-free month in my life. I just ran out and found the company no longer makes the formula.

I read something somewhere in my studies online that easing the symptoms is all about balancing the pituitary glands first, then working the adrenals. The pituitary is the master gland for all other functions in the body while the adrenals to manage the sexual organs. So dealing with the issue by first addressing he pituitary malfunction (or undiagnosed pituitary malfunction) makes sense to me.

6 AvivaNo Gravatar { 02.16.10 at 2:30 am }

Wow, that’s a hard place to be in, Flocked. Vomiting over a dozen times a day is *not* normal and can dangerously dehydrate you on top of adding to your misery.

May I ask how old you were when you first got your period? Have you been irregular (with *long* periods of bleeding) since it started?

Have you discussed this with your mom in detail, all the details? I’m sure she hates that you’re suffering like this. I know it would kill me if my daughter was suffering like this. Please share this blog post of Jeanne’s with your mom, ok? I hope she will help you find the right doctor for you, someone who takes you (and your mom!) seriously. Good luck!!
.-= Aviva´s last blog ..Eating Out, Gluten Free =-.

7 JeanneNo Gravatar { 02.16.10 at 3:37 am }

Welcome Amie!

I took the liberty of adding an Editor’s Note to your comment due to the dire importance of people understanding how essential laparoscopy is for a definitive diagnosis. I talked about this in the comments above and this post’s link to an Endometriosis Association statement about laparoscopy being the definitive method for diagnosing endometriosis. I have also blogged extensively about this topic.

I am terribly sorry you have suffered with such symptoms and for what you had to go through at home… which can only have made a difficult situation that much more difficult. I’m very sorry!

Your choice not to have surgery is just that… your choice. It is your body and your decision. Please understand that the medical community does look at laparoscopy as the definitive means for diagnosing endometriosis and that when people self-diagnose it can, in some cases, lead to problems… for the patient herself and for the general public’s understanding of the condition. (Please refer to the link marked “Endochick’s sister” in the comments above to learn about a woman with a strong family history of endo who had classic endo symptoms… but who actually had cervical cancer. Fortunately, her doctor made a proper diagnosis and was able to treat her cancer.

I am very sorry you are in such pain.

I am glad that you are feeling better from the symptoms you were having. Again, it would be irresponsible of me not to mention that a diagnosis is helpful not only for confirming suspected endometriosis but for ruling out other conditions that can mimic endo symptoms (i.e. ovarian cancer, cervical cancer).

As far as herbs are concerned, I am certainly open to herbal treatments. I should note, however, that I have friends who have taken “fertility” herbs that greatly worsened their endometriosis symptoms. I think it’s important to remember that every patient is different, that taking such herbs when not confirmed by laparoscopy may not translate into similar results for those who have confirmed endometriosis, and that not all “fertility herbs” are created equal.

As far as theories about addressing different body organs is concerned, there are many theories floating around as to “what makes endometriosis tick”. The bottom line is that no definitive cause has been found for endo (though several theories abound).

I appreciate you stopping by and sharing your feedback. Thank you.

Have a great day!

Jeanne

8 JeanneNo Gravatar { 02.16.10 at 4:00 am }

Aviva,

I totally agree with you that Flocked is in a tough position. I also agree that so much vomiting is *not* normal and that it could certainly result in dehydration.

If I understood her correctly, she first got her period 7 months ago and is now 13 years old. (Flocked, please correct me if I have that wrong).

You pose a good question, Aviva. For Flocked to discuss all of this with her mother would be the ideal situation. I know that it’s not easy for all mothers to discuss such issues. My own mother has endo and it was not easy trying to bring up these subjects with her. Flocked, I agree with Aviva. If it is possible for you to approach your mom on this, sharing this blog post (and the comments to it) might serve as a “springboard” of sorts to talk about the situation. I too hope that you find a doctor who takes you (both) seriously.

Aviva, thank you for your thoughtful comments here regarding Flocked’s situation.

Jeanne

9 AmandaNo Gravatar { 02.16.10 at 5:48 am }

Just wanted to leave a comment in support of Flocked and all young girls suffering with such awful symptoms and being completely dismissed by the doctors. I’ve been there too (I was finally diagnosed by laparoscopy at 21 and told how very “lucky” I was to be diagnosed so young… nevermind I had suffered since 13!!). It is frightening above all else, to be in so much pain and have no idea what is causing it (it is terrifying sometimes even when you do know what is causing it, but the fears that run through your head before diagnosis are the worst).

Jeanne, you are a star for taking the time to support people as much as you do, I only wish I had had such a resource as this when I was younger.

Girls, you are not alone, however much it may feel like it… ask someone you trust to go with you whenever you see a medical practitioner, and make sure it is someone who will be able to stand up for you when you are unable to speak through the tears of being dismissed yet again… you shouldn’t be dismissed and I learnt from experience that however much I loved my mum, she was unable to fight for me because of her own anger and pain at seeing me suffer the exact same fate she had… take someone who will be detached enough to see you cry and continue to fight for your rights as a patient, it will really make a difference.

Thinking of you all xx
.-= Amanda´s last blog ..Sacred Life Sunday – Love =-.

10 FlockedNo Gravatar { 02.16.10 at 9:51 am }

Yes we have discussed it many times, every evening really. Today I am getting another ultra sound, then I’m off to the fertility doctor and see what he says.
Thanks for all you input and help.

11 Amie SugatNo Gravatar { 02.16.10 at 11:24 am }

Jeanne,

Thanks. However, I need to edit my note then. I was unofficially diagnosed** [**Editor's Note: This comment has been edited because of terminology. Endometriosis is not considered "unofficially diagnosed" but "suspected" until confirmed by laparoscopy.] when I was 12 years old by a doctor after having suffered for two years with the vomiting (due to pain) and anemia to due heavy bleeding. My step-mother knew I had the diagnosis and still treated me this way. She had had cancer and had a hysterectomy at 21, after having her 3-kids as a teenager.

I had a vaginal ultrasound when I was 26 and they found no cancer or masses and “every thing looked” healthy they said. I understand that a laparoscopy is essential for confirming a diagnosis; unfortunately, my insurance does not cover it, only an ultrasound. I have been tested for cancer about every 2 years to be on the safe side. (After I turned 20 and moved away from her home.)

I refuse to have surgery to remove the ovaries, which I understand, can ease symptoms. I’m 29 this year, and although I have not decided to buckle down and date and marry, I don’t want to choose that and miss out on having a child later.

The “fertility” herbs I took and will take again when I find a new company who makes it are found in premenstrual relief formulas. Namely red raspberry leaf, chaste tree berry, black cohosh, dong quai, and evening primrose oil. I also supplement with a B-complex formula and a vegan diet. Going vegan has eased the symptoms considerably, perhaps because a lot of meat in the supermarkets is raised with hormones. (I do not consume soy products because they can increase estrogen, I’ve been told.)

Please understand I do not recommend these for anybody else and I do recommend for a person considering herbal treatment to seek the advice of a naturopathic doctor and a holistic nutritionist in addition to a regular doctor.

I take herbal preparations over prescriptions due to a liver malfunction due to liver damaged caused by a physical injury when I was a child. Doctors have advised me not to take prescription medication since many of them can cause further liver damage.

The thing that has helped me the most is living away form stressful people. I removed stressful and emotional people from my life and began working in a minimal stress environment at home as my own boss. Eliminating stress is a big one, I find when thing do become stressful or I am around stressful or draining people, the symptoms are aggravated and become much worse.

As tough as Flocked symptoms are, I am telling my story (after lurking on this blog for over two years) to encourage her and others. It is possible to live with this and function. I run a publishing company and work with another publishing company full time. I work from home, which affords me the time to take if the pain is severe.

Flocked, do seek medical care; do seek the advice of at least two doctors and a third doctor training in homeopathy and nutrition. These can be your guides to finding lifestyle and treatment options that can assist you in managing this and living a full life.

12 JeanneNo Gravatar { 02.16.10 at 11:28 am }

Amanda,

Thank you so much for your message in support of Flocked! It is so sad how common it is for symptoms to start so young and for there to typically be such a gap in time between onset of symptoms and diagnosis. It is frightening to experience such symptoms.

Thank you for your kind words, Amanda. When I was diagnosed in 1992 (after 10 years of undiagnosed symptoms), my local library had NOTHING on endo. They had NO information at all on endo! I asked the librarian for help. We came up empty.

Searching the Internet for info wasn’t an option then. It was scary. Eventually I found a meager amount of information by camping out on the floor of the bookstore aisle containing women’s health and self-help books for hours and hours and scouring the indexes of the books in particular… looking for resources.

After that, I used my status as a university student to do research using medical journals and such. Goodness knows my doctors weren’t supplying me with the info I needed! I joined an endometriosis support group in 1992 (shortly after diagnosis) and began attending monthly meetings. (I attended monthly meetings 1992- 2008. From 2001-2008, I led an endo support group that I started in my community after getting married and moving away from my former endo support group). Networking with fellow patients was immensely helpful for me!!

Amanda is right when she says, “girls, you are not alone”. She’s also right that there are bound to be times when it feels like it. Amanda makes a great suggestion to take someone you trust with you to appointments. Taking someone who will advocate for you is important. In my case, my mom wasn’t the person I needed to help me through this process. I love my mother very much and very much wished she could help me in this way… but, ultimately, she is not one to advocate for herself or others when interacting with healthcare professionals. However, your mom might be perfectly suited for this task. (Just because Amanda and I didn’t have this option doesn’t mean it’s not an option for you). In addition to taking someone with you (for moral support, to advocate for you, to help you with listening and taking it all in), I highly recommend taking notes or having your helper do so!

Flocked, you have lots of people thinking of you. Hang in there!

Jeanne

13 JeanneNo Gravatar { 02.16.10 at 12:35 pm }

Flocked,

That is wonderful that you and your mother are able to discuss things so well. You are fortunate (in that many girls with symptoms like yours don’t have the ability to do so, for one reason or another). So, that is a great thing! Good luck with your ultrasound today and with the fertility doctor!

Jeanne

14 FlockedNo Gravatar { 02.16.10 at 1:31 pm }

We just went to the doctor and he said to wait 3 months and see, and that he is ok with doing a surgery but he wants to wait a bit (which for me is frustrating and same with mom) but he wrote me a note for school so they can get me a tutor for home. Since my mom’s endo also wasn’t diagnosed for 10 yrs and she had constant fainting and etc they finally did a laparoscopy on her 2 times and found that the endo was killing her kidney. I think that’s why the doctor got worried.
Thanks for all the support!!! :-)

15 JeanneNo Gravatar { 02.16.10 at 2:25 pm }

Amie,

Thanks very much for your additional feedback. :)

Please note that my Editor’s Note following the phrase “unofficially diagnosed” is not intended to be in any way nit-picky on my part. I feel it’s necessary to note this again because you used the same phrase in this comment as in your initial comment and I think it’s a really important distinction.

I am truly sorry for your suffering… both physical and emotional! I am really sorry that your step-mother did not extend you the compassion and empathy that would have helped you through such a painful time (rather than aggravate the situation). That is really unfortunate and I’m so sorry you had to go through that!

I am also very sorry to hear that your insurance doesn’t cover laparoscopy. I have written before on this blog about my perspective on healthcare. I think it is a sin that any company calling itself a “health insurance” company could deny such an important and necessary surgery, particularly when it is the only definitive means of diagnosing endometriosis. That is just plain tragic to me.

It also amazes me that your insurance company keeps churning out money for ultrasounds (which are not a definitive means of diagnosing endometriosis). One would think that the money they are spending on ultrasounds might be better put to use on a laparoscopy that would definitively determine whether you do have the endometriosis you so strongly suspect. I am so sorry that your insurance company has put you in such a terrible situation!

As I mentioned in my detailed comment to Flocked, having a bilateral oophorectomy is a radical procedure. Even someone diagnosed definitively with endometriosis that is very severe should give very serious thought to having such surgery. Regardless of one’s future reproductive plans, having the ovaries removed is a drastic procedure that is not to be taken lightly. It induces a surgical menopause and can have profound effects on the body. As you alluded to, it is certainly important for people not to take lightly surgical decisions that permanently alter their fertility options. In my experience interacting with hundreds of endometriosis patients and doing my own research about the condition, bilateral oophorectomy in and of itself is not considered a typical method for easing the symptoms of endometriosis. Certainly, some women opt for bilateral oophorectomy as part of a radical hysterectomy but it should be noted that there is NO CURE for endometriosis.

Thank you for not mentioning name brands of herbal supplements as I make it a general practice to avoid mentioning brands on my blog. (I don’t mention brand names of prescription drugs, supplements, etc.) I myself have used various herbs and supplements over the years, including some of the ones you mentioned. I have found some of them helpful.

Since you mentioned black cohosh and since I had a negative experience with it, I would like to mention that this herb caused my cramping and bleeding to worsen significantly.

This link talks about black cohosh as being something endometriosis patients may wish to avoid: black cohosh.

Per this site, “People with hormone-sensitive conditions, such as cancer of the breast, prostate, ovaries or uterus, endometriosis or uterine fibroids, should avoid black cohosh until more is known about how it works and whether it has a hormonal effect”.

A well-meaning health care practitioner I used to see years ago had sold me a product that was marketed as being helpful for various menstrual problems. The black cohosh made me sicker. She was very surprised because she expected it to help me. Years later, when I took an herb class I realized that the black cohosh was what made me so sick.

Based on what the link above says, I can see that it was not my imagination that black cohosh could actually worsen endometriosis symptoms. So, I just wanted to put that out there as a caution for anyone thinking of taking it.

It is really wonderful that you have found a diet that makes you feel better! You are very correct that many meats sold in supermarkets contain hormones. There are grass-fed beef options for those who wish to eat meat without ingesting the hormones that are so widely used. Other hormone-free meat is available as well. Soy is believed to have phytoestrogenic properties. I too avoid soy for this reason.

I understand that you are not recommending anything for anybody else and I too agree that a person considering herbal treatment would be wise to seek the advice of a naturopathic doctor and a holistic nutritionist in addition to a regular doctor.

Herbs can certainly be very helpful. Some herbs can interact with prescriptions and, unfortunately, many MDs are not very familiar with herbs. So, it’s important to make sure that herbs and supplements don’t interact with prescriptions being taken. By assembling a qualified team of professionals, such as you suggested, patients can harness the power of different types of treatment options and use them in combination. I have found homeopathy helpful as well.

I am sorry that you have liver damage but I’m glad that you have found an alternative way of treating your symptoms that your body is better able to tolerate. I am guessing you probably drink a great deal of water to help your liver.

Stress can wreak havoc on just about any illness and you are wise to minimize the stress in your life. You are very right that when one is around stressful or draining people, symptoms are aggravated and do become much worse. That is wonderful that you are working from home as your own boss and that it gives you the flexibility you need. That’s great! (B-complex vitamins are great for people under stress).

Amie, I appreciate you leaving feedback here to encourage Flocked and others like her. I appreciate you taking the time to leave such a detailed comment to support others. By the way, it’s also always nice when someone leaves the “lurking” zone and surfaces for discussion. ;)

Yes, it is possible to “live with this and function” and I appreciate your words of hope. Hope is so important when facing the challenges associated with chronic illness.

I agree with you that for those with the resources to do so it can be extremely helpful to obtain treatment from those properly trained in nutrition and homeopathy. I am also a big believer in getting multiple opinions! That is very important indeed.

Amie, I want to thank you again for your detailed comment. When patients share encouragement and hope with each other, it can really be enormously helpful for everyone involved!

Have a great day.

Jeanne

16 Amie SugatNo Gravatar { 02.16.10 at 2:47 pm }

Jeanne,

Thank you for mentioning the black cohosh. I did notice that I still had pain, even though the bleeding stopped. Though the pain was not as severe as before between menses. I now wonder if it was the black cohosh. I will buy the herbs separately so that I can eliminate the BC and see if the symptoms improve. I learned something, Thank you.

And yes, I drink at least a gallon of purified water daily plus herbal tea and soup and fresh juicy fruits and vegetables daily.

Seeking natural health care by certified doctors in the field is indeed expensive and sadly most insurances do not cover it. I find if I do my research before hand I minimize the number of visits I need when I do seek their opinion for my health to just one or two. This means I have to bring them a detailed report of my medical history and what I have tried and be my own advocate. Session can run as low as $60 per visit, but paying $100 to $150 per visit will likely get a person better care. I cannot afford it all the time.

Flocked can, with proper treatment and management techniques, lead a full and healthy life otherwise. I went to college twice, have performed volunteer work, and have followed my dream to be a writer.

Combining the efforts of a strong advocate, such as ones mother, aunt, an older female relative, or even a close and supportive friend who understands an is compassionate about the condition and the person is the best form of treatment. Having someone there for you, especially early on, will make the road that much easier.

Then combining that with OBGYN’s, a family practitioner, a holistic doctor, and a nutritionist who are all advocates of the endometriosis issue will go a long way in providing the right treatment and the type of care needed to live a full life.

I’ve had the suspected but not diagnosed report from at least 8 doctors in my lifetime. Its unfortunate that health care provides inadequate tools in diagnosis and treatment these days. It may be still some time before the U.S. catches up with other countries in their diagnosis and treatment options for the patient.

Until then those of us afflicted with this can join hands and support each other until we find the cause and more effective treatment options.

I thank you for this site.
.-= Amie Sugat´s last blog ..Recommended Reading For Writers and Copy Editors =-.

17 JeanneNo Gravatar { 02.16.10 at 3:34 pm }

Flocked,

So, are you and your mom comfortable with that doctor you saw performing the surgery? Is he an experienced laparoscopic surgeon? Did he indicate what he is waiting for? Sorry to bombard you with questions but I am just curious. I can understand your frustration and your mom’s. I’m glad you got a note for school and a tutor! I’m sorry for what your mom went through too. Please stay in touch! :)

Jeanne

18 FlockedNo Gravatar { 02.16.10 at 5:23 pm }

That’s fine I don’t mind. He said that he wants us to wait for the 3 months because he wants to see if my period is less painful after the birth control (as I have been on it continually for 7 weeks now.) and he said that he

19 FlockedNo Gravatar { 02.16.10 at 5:26 pm }

Is quite alright with doing a laparoscopy on a teen because he has found endo before in teens and he is specifically interested in teens just because it’s hard to find docs who will perform a laparoscopy willingly so he is open to it.
Thanks for all the comments again!!! :)

20 Kelly DNo Gravatar { 02.16.10 at 5:27 pm }

Poor girl. I cannot imagine that kind of pain, especially at such a young age.
.-= Kelly D´s last blog ..AZ Infertility Patients Rights at Risk – Immediate Action Needed =-.

21 JeanneNo Gravatar { 02.16.10 at 7:13 pm }

Amie:

I’m glad that the mention of the black cohosh issue might help you be able to see if avoiding it helps. You are very welcome.

That’s great. Water is so important for everyone but especially when there are known liver issues.

It sounds like you do an amazing job of following a healthy diet. That’s wonderful! It also sounds like you have developed a system for obtaining the services of certified doctors in the field regarding natural health care as affordably as possible. I agree that it’s sad that most insurance will not cover such treatment. I have found that taking a very detailed report of my medical history is helpful with most health care practitioners. It saves time, reduces the odds of errors, and generally makes an appointment flow more smoothly than without it. It is awesome that you advocate for yourself. This is so important with any chronic illness.

I agree in general principle that endometriosis patients have the potential, with proper treatment and management techniques, to lead full and healthy lives. I think it is worth mentioning that there is a wide variance in severity of symptoms from one patient to another… even with the same condition. I mention this because I know that endometriosis can be debilitating for some. I say this not to sound negative or to squash anyone’s hope but because I have met too many chronic illness patients (with endometriosis or otherwise) who have been pushed and pressured (by family or friends who didn’t understand their limitations) to do more than they were physically able to do without, literally, inflicting self-harm by pushing themselves too hard. (I have witnessed patients who push themselves way too hard and get sicker in the process).

It is wonderful that you have been able to accomplish the things you have and that is encouragement for others. At the same time, I think it is important for people to understand that each person is different. Different people respond differently to treatment, different people’s illnesses come in different severities, and different people have different pain tolerances. Obviously, different people have different income levels and their access to healthcare options varies accordingly.

I agree that having a strong advocate is very important. Having someone “there” really does make the road easier. In particular, I have gotten immense support from fellow chronic illness patients over the years who “get it”.

Assembling a team of qualified medical professionals who really understand endometriosis is clearly very important.

It is unfortunate that there isn’t an easier way to diagnose endometriosis than a laparoscopy. Treatment options have plenty of room for expansion/improvement too.

As far as endometriosis is concerned, there is no better method for diagnosis than laparoscopy available to the public anywhere in the world. (Despite bursts of media coverage – some sensationalized from what I saw – in recent months about alternative means of diagnosing endometrosis being researched, there is nothing on the nearby horizon either).

As far as healthcare in general, there are plenty of areas for improvement in U.S. healthcare. I won’t even get into that.

Yes, patients can (and do) join together to provide mutual support.

Thank you for your kind words.

Flocked:

So, you have continued to bleed despite continuous birth control pills? That is great that you have found a doctor who has experience finding endo in teens! That’s very good news. No problem! ;)

Kelly:

I know. It breaks my heart and, frankly, causes me to relive some painful childhood memories of my own.

~~~

Jeanne

22 heidiNo Gravatar { 02.16.10 at 9:13 pm }

hugs to you Flocked! glad you found this site. starting at the age of 13 i had absolutely horrible periods…INTENSE pain, vomiting, and nothing seemed to help. finally, after worsening daily pain i was diagnosed by lap just 5 months ago (i’m now 26). that same day jeanne found me on twitter! i mostly lurk and don’t post, but this site is a huge source of info and the individuals on here are very supportive. although it’s tough, hang in there, and know you’re not alone. keep us posted!
.-= heidi´s last blog ..Adjusting =-.

23 Sherril JohnsonNo Gravatar { 02.16.10 at 11:20 pm }

It’s crazy to me how edometriosis myths and inaccuracies continue to abound. I was diagnosed by laparoscopy in 1989 when I was 32, after 20 years of pain. The reason I was diagnosed was because I was not able to get pregnant. For all those years until I was married and interested in conceiving my doctors ignored my complaints of extreme (nothing like Flocked’s pain, though!) pain every month. I hope we have made some progress since then, but all this confusion I’m reading about people not knowing that a laparoscopy is needed in order to diagnose makes me wonder… The best of luck to you, Flocked. I hope your doctor will try to do something about your pain while he is “waiting to see” about the birth control.
.-= Sherril Johnson´s last blog ..Savella: Love it or hate it, we have the right to choose it as a treatment option! =-.

24 JeanneNo Gravatar { 02.17.10 at 1:50 am }

Heidi:

Thank you for sending some hugs to Flocked! I think those of us who remember what it’s like to have such horrendous symptoms at such a young age all want to give her a big hug right about now! I’m glad she found this site too. This thread of comments has been so interesting. Heidi, I’m so sorry you went through all of those terrible symptoms at such a young age too! It’s difficult enough to deal with as an adult. I personally believe that it is overwhelming for a child to deal with.

I’m sorry you suffered for so long without getting relief. I am so glad we were able to connect via Twitter when we did. (As you know, it was right before my Twitter identity was stolen and then I decided to leave the site).

For anyone unfamiliar with my Twitter saga, see “Why I Left Twitter” in the left sidebar of my blog. Anyway, Heidi, I’m glad we connected there before I left Twitter. We nearly missed each other. It was awesome the way we got connected right after your laparoscopy.

Now, Heidi… you are the second person in this comment thread to “confess” lurking on my blog. You do know I LOVE feedback, right? OK. So, don’t be shy! ;) If you “lurk”, I don’t know you’re there and we miss out on your witty commentary. ;)

Thank you for your kind words. We really do have some amazingly supportive people here and it’s great to see people making connections with others they can relate to. You’re right that it’s tough but you’re also right that none of us is alone! We all have each other. So, Flocked, hang in there and keep us posted because you now appear to have a little “following” here. ;)

Sherril:

Well, we have good news and bad news.

The good news is that women and girls with endometriosis now have a wealth of information at their fingertips online that wasn’t there when I was diagnosed in 1992 or you were in 1989. The good news is that women and girls are banding together to share support, information, resources, and advocacy power (i.e. our recent letter-writing campaign which resulted in a newspaper printing a letter to the editor that corrected an erroneous article).

The bad news is that we still have to repeat the mantra “laparoscopy is the definitive method for diagnosing endometriosis” ad nauseum when writing to the media, on blog posts, when leaving comments on blogs, etc. because society as a whole still doesn’t understand the importance of laparoscopy to diagnose endometriosis. (This is very connected to misleading media reports). The bad news is that women who have every reason to believe that they have endometriosis cannot afford to get a laparoscopy that their “health insurance” won’t cover! The bad news is that the media prints/airs one inaccurate story after another and last week’s printed correction of such a story was the first one I have ever seen! EVER! (Don’t get me wrong… I’m glad they corrected it! I just wish the incorrect article were not printed to begin with).

It is a bit mind-boggling just how many myths and inaccuracies still abound about endometriosis. I took a cold, hard look at this last week when we were fighting tooth and nail with the newspaper I just mentioned and it dawned on me that nearly every (if not every!) “endo myth” media story I have ever encountered either stemmed back to an MD spreading misinformation (i.e. news stories like last week’s) OR stem back to a celebrity who appears to be quoting her own doctor’s misinformation (i.e. the Dancing with the Stars dancers who both announced their endo on TV to nearly 40 million viewers without either of them having had a lap prior to making her announcement).

With the medical community fueling the media myths, it’s no wonder there is so much confusion and it’s no wonder the myths have such staying power!

I would like to think that bombarding that newspaper last week with letters to the editor, posting comments to the flawed online article (before comments were shut down), and blogging to rally as many letter-writers as possible paired with the fact that I emailed the newspaper editor the endo petition with nearly 500 signatures helped get their attention. All I know is I’m glad they corrected it… especially since a GYN wrote the incorrect article! (The irony)!

I’m sorry you went through 20 years of pain without knowing the cause. :( Yes, many women get diagnosed with endo during a fertility workup. I am sorry your doctors ignored your pain for decades. That’s just plain wrong!

Back to the “good news” above. I do believe some progress has been made. Like you, though, I believe there is definitely room for improvement.

Thank you for sharing your good wishes with Flocked. Speaking of flocks, I feel like many of us here have “taken her under our wings”, so to speak. It’s hard not to feel deep empathy when reading a story like hers if one has been down a similar path. My memories of my life at 13 are all-too-vivid in my mind. It was challenging! The good news is that it sounds like she has a concerned mother in her corner helping advocate for her… and we all know how huge that is!

Thanks for the feedback, Sherril!

~~~

Jeanne

25 alohamorakatNo Gravatar { 02.20.10 at 11:27 pm }

Flocked,

I hope you get some relief for your pain as soon as possible!

KK

26 JeanneNo Gravatar { 02.21.10 at 12:31 am }

KK,

Thank you for your supportive words for Flocked.

Jeanne

27 StacyNo Gravatar { 02.21.10 at 10:29 am }

Flocked,
Like many young girls my endometriosis symptoms started when I was eleven. I was in terrible pain and missing lots of school and felt scared and alone. No one believed how sick I was and I suffered for thirteen years before finally having surgery and getting a diagnosis of endometriosis. I am now 36 and doing great- there is hope.

Know that you can, and will, get better. Being clear with your family and doctor about your symptoms (perhaps charting them on a calendar with your pain listed daily on a scale of 1-5 and whether or not you are bleeding) will help all of you come up with a plan to make you well. We are all pulling for you- please keep us updated as to how you are feeling and what the plan is.

28 StacyNo Gravatar { 02.21.10 at 10:40 am }

Amie,

My heart breaks for how awful you must have felt suffering while enduring life with such a miserable authority figure making the situation so much worse.

I eventually had surgery to get a diagnosis (which brought a short term relief) and then tried the herb, acupuncture, physical therapy route for many years (which brought some relief). I have tried a variety a pain control methods over the years with mixed results. The important thing is following what works for you at any given time (and this will change over the years).

If you are ever able to get insurance, please get an official diagnosis so you know what you are dealing with and how much damage is being done to which organs. This knowledge will help you make long term plans for your future.

Good luck with figuring out the right path for you!

29 JeanneNo Gravatar { 02.21.10 at 2:02 pm }

Stacy,

Thank you for your words of support to Flocked and Amie! :)

Jeanne

30 FlockedNo Gravatar { 03.02.10 at 1:45 pm }

I just had an anaphylactic shock a week or two ago because of pain killers! I was at school and started turning blue and had to give myself an epi pen. So motrin and Tylenol are out of question.

Yesterday I forgot to take bc so now I have my period and am in such pain that people can not imagine!
Thanks for the support!

31 JeanneNo Gravatar { 03.02.10 at 1:55 pm }

Flocked,

Is your mom with you? Are you OK now? Do you have a history of anaphylactic shock? That must have been scary. :( It was a good thing you had an EpiPen with you. I’m so sorry. Do you have a lot of allergies and sensitivities? I’m assuming that you must have some kind of history or you wouldn’t have had the EpiPen. Are you safe now? I’m so sorry for your pain.

If your muscles tense up (which tends to happen when we’re in pain), it can actually make the pain worse. Do you have a heat pack that might relax your muscles? Do you have some favorite relaxing music? Can you “sleep it off” for awhile? Simple things like this can help.

I’m sending positive energy your way!

Jeanne

32 JeanneNo Gravatar { 03.03.10 at 4:02 pm }

Flocked,

I’m thinking of you and hoping that you’re OK! Keep us posted, OK?

Jeanne

33 Teen With Suspected Endometriosis — ChronicHealing.com { 03.05.10 at 8:39 am }

[...] Article on teen with suspected endometriosis and the numerous thoughtful comments posted to it by re… [...]

34 Jannie FunsterNo Gravatar { 03.05.10 at 12:48 pm }

“It is a bit mind-boggling just how many myths and inaccuracies still abound about endometriosis”

That is so a fact. And heart-breaking, as so many are suffering UNECESSARILY!!
.-= Jannie Funster´s last blog ..The Blog Party (a poem) =-.

35 JeanneNo Gravatar { 03.05.10 at 12:55 pm }

Jannie,

Exactly. It is very sad. Hopefully if enough people speak up for change, things will get better!

Jeanne

36 JeanneNo Gravatar { 04.21.10 at 11:49 pm }

Flocked,

We haven’t heard from you in awhile. How are you doing? Are you OK??

Jeanne

37 FlockedNo Gravatar { 04.22.10 at 7:08 am }

I’m doing not so well actually. I had a bc that wasn’t strong enough and my period came so getting a stronger one. I also had a five day stay at the hospital were I found out I was anemic to the point were I nearly needed a transfusion. I also found out I have celiac disease but I don’t believe that’s it because pain is still severe. I found a doctor in Oregon that specializes in endometriosis in young girls and has done many. I am preparing to send my papers over to them and hopefully soon I’ll get a response and get this over with… A lot of doctors are like you shouldn’t cuz you’ll have scars and I really don’t care cause I’m in pain and I scream for 2 hrs straight sometimes so they really don’t have a voice in my mind.
Thanks for asking!

38 JeanneNo Gravatar { 04.25.10 at 9:47 pm }

Flocked,

Sorry for the delayed posting of your comment and the reply. I have been struggling to keep up lately. I hope that you can get stabilized so you’re not suffering so much. I’m sorry your medication wasn’t accomplishing that. Having struggled with anemia, I can empathize with you. Perhaps you can ask your mom if it would be feasible to look into finding a qualified health care practitioner to assist you with trying homeopathy. I wish that I had known about homeopathy when I was your age because it has been enormously helpful for me in regard to hemorrhaging. As far as the celiac disease, I know people who have it and dietary changes have helped them a great deal. Hopefully you have access to information to help in that area. I know you are suffering terrible pain and my heart goes out to you.

In regard to “getting a laparoscopy over with”, please take your time finding the right doctor for you. Sometimes, multiple opinions (initial consultations) can be helpful at finding a doctor who is a good match for the patient. I wish you the best of luck with that. I don’t ever endorse any particular health care practitioners for many reasons. One, it’s not my place to do so. Two, which doctor is a good match for one patient might not be for another. Three, it would be impossible to make recommendations for doctors around the world. So, the best I can tell you is to work with your mother to do your research, make informed choices, ask lots of questions, and follow your gut. I am so sorry to hear about your pain and additional health issues. Hopefully it helps to know that there are many people here thinking about you and remembering what it was like when we were your age. We’ll be thinking about you!

Jeanne

39 StacyNo Gravatar { 04.25.10 at 9:53 pm }

I have also had some good luck with homeopathy helping with bleeding. A friend suggested I try something I could pick up at the health food store and I was shocked that it got rid of my golf ball sized clots.

40 JeanneNo Gravatar { 04.25.10 at 9:57 pm }

Stacy,

Thank you so much for chiming in so quickly in support of Flocked! I too found the homeopathy remarkably effective for large blood clots. When I heard about Flocked having anemia, homeopathy immediately sprang to my mind. If only I had known about it when I was a teen!

Jeanne

41 EndochickNo Gravatar { 04.25.10 at 10:45 pm }

The reason doctors are hesitant to perform laparoscopies on young women – especially teenagers – is because any abdominal or pelvic surgery (no matter how minimal) will create adhesions. Now, if you do in fact have endometriosis, your body is already creating pelvic adhesions. It’s an inflammatory process – a response to the alien implants (the endometrial implants that do not belong outside the uterus). When you have your period, those implants bleed as well – regardless of where they have planted themselves. When this happens, your body tries to attack them by forming adhesions. This happens after surgery – even with the best adhesive guards. The more adhesions you have, the more your fertility may be at risk. I couldn’t find a doctor to operate on me until I had a kid.

As for herbal medications, including vitamins, make sure you know what you’re taking in your body! Herbal remedies are not regulated by the FDA. Because of this, each pill in the bottle may contain a different strength. With herbal medication, the right amount is safe but some people can’t handle fluctuations. Most herbs have not been studied for extended periods of time to see what reaction the body has in the long run. Black cohosh, for example, is wonderful for night sweats in menopausal women. But studies on its long term effectiveness are lagging. Black cohosh is estrogenic (meaning it’s estrus-producing and has the same effect as naturally produced estrogen). This is great for menopausal women who need estrogen. But, long-term studies of estrogen replacement therapy has found an increase in breast and and uterine cancers. Possible long-term exposure to estrogenic herbs may work the same way. Bottom line: look-up the facts on anything taken into your body – prescription or herbal. And if it doesn’t have an FDA, or National Nutritional Food Administration, or Good Manufacturing Practices seal – I would walk away.

If you want to go the natural route – please see a homeopath. And then, please, be honest about any homeopathy therapies with other doctors treating you. There are a lot of herbs that should NOT be mixed with some medications – including pain meds.

Personally, I’ll vouch for Amie’s comment. I, too, eat mostly organic and am a vegetarian. Limiting caffeine, wheat, and so much more has REALLY helped me. I’ve lost a ton of weight and feel better than I have in YEARS! I, too, avoid soy because it’s estrogenic. Our livestock is genetically engineered to be bigger and fatter. This is done through hormone manipulation, which carries over into the meat. When we eat the meat, we consume all these chemicals and hormones. That’s just not good. Cows are given estrogenic hormones to produce more milk. When we drink that milk…. well… you get the point.

No matter what you decide to do, always have an advocate by your side. Your mom sounds like she’d be good since she has endometriosis. Do NOT let just any surgeon cut on you. Make sure they are up on current research, are certified, and have a great track record.

Good luck in your search to find out if you have endometriosis. And as Jeanne wrote, it could always be something else. While I have endometriosis, when I had my lap with a D&C, the surgeon discovered polyps. Polyps are major source for heavy bleeding.
.-= Endochick´s last blog ..It’s #endometriosis Month! =-.

42 JeanneNo Gravatar { 04.26.10 at 10:34 am }

Endochick:

Thank you very much for leaving such an in-depth comment with information for Flocked! I appreciate your time and energy! You covered many topics!

Flocked:

I agree with Endochick that surgery has the potential to create adhesions and scar tissue. I say “potential” because some women and girls are more more to adhesions than others. I’m not sure I agree that it is necessarily a foregone conclusion that surgery will automatically result in adhesions and/or scar tissue. I think how things heal varies from person to person but that would be something to discuss with your own doctor. (I am not giving medical advice).

I also agree with Endochick that adhesions/scar tissue may very well form in the absence of surgery… as she alluded to. The inflammation process involved with misplaced endometrial tissue can indeed lead to adhesions/internal scar tissue… if, in fact, you do have endometriosis as you suspect.

As Endochick said, when and endometriosis patient has her period the misplaced endometrial tissue responds to the monthly hormones that signal bleeding. Endometrial tissue that is misplaced outside the uterus then become trapped in the body and can trigger the inflammatory response and development of adhesions/scar tissue.

While Endochick had difficulty finding a doctor willing to operate on her until she had had a child, please understand that there are certainly doctors out there who are willing to perform a laparoscopy whether or not a woman has had a child. (Doctors certainly operated on me). In fact, some women have laparoscopies for the purpose of determining a cause for infertility… only to discover that they have endometriosis. (While a fair number of infertile women have endometriosis, there are many other women who are able to conceive. So, I don’t mean to frighten you in any way.

As far as herbs are concerned, it is true that they are not as strictly regulated as prescriptions by agencies like the FDA. I think it should also be noted that FDA approval is by no means a guarantee of safety. A look at all of the drug recalls there have been demonstrates that.

I hear what Endochick is saying though… that herbs are less regulated and that it’s important if you decide to take herbs to go with brands/products you trust. How to determine which brands to trust can be a little tricky.

Some people have a tendency to push a certain line of supplements because that is what they sell. I am not trying to make this sound more complicated than it is. Basically, I’m just saying that I hear what Endochick is saying. At the same time, I have taken herbs over the years that I found helpful. So, I don’t want you to be fearful of herbs… I simply encourage you to make informed choices when making purchases. While it is true that there have been cases where the strength was not consistent for a particular herbal supplement, if you stick with reputable companies… herbs can be one of many helpful options. Endochick pointed out that some people handle a particular herb differently than others. This is true. It is also true of prescription medications. We’re all built differently. What helps one person a great deal may worsen symptoms for another person with the same condition.

Many prescriptions that were supposedly studied “long enough” end up with black box warnings or recalls. So, I wouldn’t be fearful of herbs. I would just make informed choices.

In comment 15 to this post, I referred to black cohosh. I had a bad experience with it when I was younger. I now understand why.

As Endochick said, anything taken into your body (prescription or herbal) is worth researching for safety. While agency labels may serve as a guideline, I would encourage you to consult with a health care practitioner when making decisions about what products are good choices for you. Again, you don’t even have an official diagnosis at this point of endometriosis.

Endochick mentioned seeing a homeopath if you choose to use homeopathics. In my previous comment, I suggested seeing a “qualified health care practitioner” if you elect to try homeopathy. The reason I worded it this way is that I know of people who use homeopathy and are under the care of naturopathic doctors. Certainly a homeopath is an option. You may find that a naturopathic doctor is also helpful when it comes to homeopathy.

It is my understanding that homeopathic remedies (unlike herbs, supplements, and prescriptions) do not cause interactions. I want to be clear that I am not giving medical advice here. My point is that homeopathics are very safe. While I certainly agree with Endochick that informing your doctors of everything you’re taking is certainly a good idea, my own personal experience is that my allopathic (traditional MD) doctors are clueless about homeopathics. I am not disagreeing with Endochick about the importance of disclosing what you’re taking to your doctors. That IS important. I am telling you that if I walked into some of my (allopathic) doctors and named off homeopathics I have taken, they’d look at me like I had 10 heads. This is why a naturopathic doctor or homeopath can be very helpful in overseeing what you are taking and actually understanding homeopathy in a way that a typical MD can’t. Certainly, your docs should know all herbs and supplements you are taking.

As a point of clarification, herbs should NOT be mixed with some medications… as Endochick pointed out. This is very true. To be clear though, herbs and homeopathics are not the same thing at all.

It is true that lots of meat contains chemicals and hormones that are unhealthy. It is also true that organic food is healthier than non-organic food. Sadly, much of our food supply is contaminated with pesticides, hormones, and other things that are unwanted . Many endometriosis patients do find it helpful to make certain dietary changes (i.e. wheat-free diet, limiting caffeine, etc.) Soy does have pseudo-estrogenic properties and I avoid it too.

If you do eat meat, there are safer choices available. Hormone-free, grass fed beef is now available in some grocery stores… for example. While it’s true that a great deal of livestock is bigger and fatter due to chemicals and hormones that are unhealthy, there are healthier meat alternatives for those who do not wish to follow a vegetarian diet. As Endochick pointed out, it is not just the meat that can be contaminated with hormones but the milk as well. It is possible to purchase hormone-free milk.

I agree with Endochick about the importance of having an advocate by your side… especially because of your age. I also agree that it’s important to be comfortable with the surgeon you choose.

When I have faced surgery (which has been 7 times), I don’t simply take the doctor’s word for it that he/she is experienced at treating endo, skilled at recognizing it, etc. I research to make sure that the doctor is as good as he/she claims to be.

Sadly, I have seen and heard of too many doctors who thought they knew more than they did. Some doctors develop a level of out and out arrogance… so busy convincing a patient that he/she is a great surgeon that he/she can lose sight of reality. One of my doctors (in the early years) THOUGHT he knew more about endo than he actually did. It took me a little while to figure this out. Once I did, I switched doctors. It was like night and day. My former doctor simply DID NOT have the skill level he proclaimed. So, choose your surgeon wisely. I know you’re anxious to, as you put it, “get it over with” but please take the time to find the doctor who is going to be the best match for you.

Best of luck finding out if you do, in fact, have endometriosis. As Endochick and I have touched upon, there are other possibilities besides endo or that could be co-existing with endo. (My doctor suspects that I have adenomyosis as well as endo. Adenomyosis is endometrial tissue misplaced inside the muscle wall of the uterus. It’s not in the lining of the uterus where it belongs. It is behind/under that lining… inside the muscle wall). My doctor believes this is a factor in the hemorrhaging I have dealt with for years (much improved with homeopathy).

As you can see my the responses rolling in since your last comment, there are many people here pulling for you. So, keep us posted and know that we are thinking of you! ;)

~~~

Jeanne

43 JeanneNo Gravatar { 05.02.10 at 3:56 am }

Flocked,

Thinking of you!

Jeanne

44 JeanneNo Gravatar { 09.28.10 at 12:24 am }

Flocked,

It has been awhile since I’ve heard from you. I hope you are well!

A 13 year old named Yonah posted some comments on this post yesterday and today:

Teen With Suspected Endometriosis

I thought it might be helpful for both of you to have an opportunity to connect with someone the same age who has suspected endometriosis.

Take care,

Jeanne

45 tonyaNo Gravatar { 10.11.10 at 9:50 am }

My daughter is 13 and has Endometriosis. She had surgery to have it removed, They had to remove her ovary and tube, she had a mass of it the size Of a babies head. Hers is so aggressive that they want to put her on lupron, which will put her in early menopause. If not she will have a full hysterectomy by age 15, Its also on her colon. While in surgery they found she also has 2 uterus which is very rare. My daughter and I are going through alot right now. shes very emotional, She is withdrawling herself from her friends. The doctors say they have never seen anything like this in a girl her age.

46 JeanneNo Gravatar { 10.11.10 at 11:59 pm }

Welcome Tonya!

First, let me start by saying that I am very sorry to hear that you and your daughter are going through so much right now!

Before I proceed, let me just post my disclaimer. I can’t/don’t give medical advice. In complex situations such as your daughter’s I may make suggestions to assist you in evaluating your options or finding resources and may share my opinions… but it’s important for me to make it clear that I am not giving medical advice.

That said, it sounds like her endometriosis is quite severe and I know that it must be scary for both of you. To have an ovary and tube removed by the age of 13 really is remarkable.

In regard to treatment options, I cannot really comment on specific pharmaceutical drugs but I would suggest becoming aware of the side effects to look for in your daughter for any medication she takes.

Also, some side effects are not as well-documented as others. I would think this could be especially true in the case of someone your daughter’s age… What I mean to say is that when drugs to treat endometriosis are tested for safety, researchers aren’t using 13 year old patients in the studies.

So, if it were my daughter… I would keep a close eye on her in regard to side effects (even ones that doctors claim are not an issue).

Without naming any specific drugs (for liability and other reasons), I can tell you that years ago I heard stories of a drug being used to treat endometriosis that was allegedly causing suicidal thoughts in some patients. I watched an MD lecturing about endometriosis years ago who swore up and down that there was no link between the drug and depression or even suicide. Nevertheless, one woman after another after another in the auditorium raised her hand to report that she too had experienced this when she took the drug. (Whether the lecturing doctor was on the payroll of the pharmaceutical company that marketed that drug or not, I don’t know).

All I know is that there were enough women in that auditorium that seated about 100 people (held in a medium-sized city) reporting this to make me wonder how accurate what the doctor was saying really was (i.e. his emphatic assertion that there was no connection between the drug being discussed at that point and depression or even thoughts of suicide).

My intent is not to alarm you but to emphasize the importance of making informed decisions, recognizing that doctors are human and can make mistakes, and sharing my own personal opinion that a young girl of 13 really needs someone advocating for her while navigating the complicated medical system for this challenging illness.

You obviously already know that last part or you wouldn’t be searching online for information for her.

So, Tonya, take a moment to give yourself a pat on the back for the efforts you are making to help your daughter. That is huge.

I know it’s not easy or pleasant — but it’s important. No 13 year old can cope with such a heavy load as what your daughter has happening on her own. So, the fact that she has you in her corner is very important.

Having been on medication that caused me to experience “medical menopause” in my early 20s, I know how difficult it was for me. Any support and comfort you can give your daughter can only help her deal with the challenges (better than she could deal with them otherwise). There are wonderful sources of endometriosis information online and there are ones that are not wonderful at all. It is very important to sort out which is which. That isn’t always easy but it is very important.

In regard to your comment about the topic of hysterectomy, I am not clear on whether a doctor suggested that your daughter might need a hysterectomy by age 15 (?) or not. I can tell you that there is no cure for endometriosis. So, having not heard the context in which you came to believe your daughter might be heading for a hysterectomy by the age of 15… I can only tell you that hysterectomy is not a cure for endometriosis.

Any time you feel you need more information on which to make informed decisions, don’t hesitate to get a second opinion. In a case as complex as your daughter’s, it’s not unusual to even seek out a 3rd opinion or more. When selecting a doctor, it’s important to find a doctor you can trust. Sadly, there are doctors who make bold claims about their high skill level and experience who may not necessarily be the best options out there. Taking doctors’ word for their experience level can be problematic. This is a sad but true state of affairs from what I can see. My personal belief is that it’s important to find a highly skilled doctor who truly cares about patients as opposed to some doctors who seem more motivated by money or publicity than helping patients.

By definition, endometriosis is when there is misplaced endometrial tissue outside of the uterus (or outside of the two uteri in your daughter’s case). So, removing the uterus (or uteri) does not guarantee that any misplaced endometrial tissue will not continue to be a problem. I know of many women who have gone on to have endometriosis-related problems post-hysterectomy.

You mentioned that the endo was found on her colon. Were they able to remove it? I know if they were not expecting this finding, they may not have had her do a bowel prep prior to surgery and/or there may not have been a doctor on hand who was skilled in removing endo from the intestines (one of the trickier areas to remove endo from). Did they leave it in there and close her back up with endo still on her intestines because of an inability to remove it at that time? With a doctor who is properly skilled, it is possible to remove endo from the intestines. Also, if endo is still on her intestines, a hysterectomy (i.e. removal of her uteri) in and of itself would do nothing whatsoever to address that endo.

Believe it or not, I am familiar with didelphys uterus. My sister has two uteri. She was initially misdiagnosed with a bicornuate uterus (also mentioned in the link above). However, during her second pregnancy the maternal-fetal sub-specialist told her that she had been misdiagnosed – and that she has 2 uteri (rather than one with a septum in it). My sister has two cervixes. This doctor who finally diagnosed her correctly informed her that for all of the years she had been getting PAP smears, she really should have been getting a PAP smear for each cervix. Had she not had some abnormal tests during that second pregnancy, she never would have known this. So, that might be something to be aware of with your daughter.

I am sorry to hear that your daughter is withdrawing from her friends. I can only imagine how difficult this must be on her and on you. I am not surprised that the doctors haven’t seen anything like this in her age. Having talked with hundreds of endometriosis patients (in endometriosis support groups that met monthly from 1992 – 2008 and the people I’ve met online), I have learned a great deal about how common it is for patients to be told they are “the worst case a doctor has seen” or that they have something that is “rare”. I am certainly not suggesting that the circumstances you’ve described for your daughter are common. Clearly her endo is very severe and a didelphys uterus isn’t common by any means. What I’m trying to say is that what I have found – talking with so many women (online especially… since I hear from people all over the world) – is that situations they felt very isolated about are sometimes more common (for lack of a better word) than they think. A given doctor knows what he/she sees, what he/she was taught in medical school, what he/she reads in medical journals, etc.

The power of the Internet to connect patients with rare diagnoses or very severe cases of endometriosis with other patients dealing with similar circumstances is really something. So, if it gives you any hope to know that just by leaving this one blog comment you’ve already found someone with a first degree relative who has a didelphys uterus… or if it gives you any hope to know that there are other young patients facing very challenging situations with endometriosis, please know that you are not alone.

While there are no magic answers to these complex situations, some people find it enormously helpful just to know that they are not alone… for starters.

Tonya, I hope you will stop back and keep me posted on your daughter’s situation. I know this must be a very rocky time for you both. Age 13 is hard enough when one is healthy! Hang in there and keep reaching out to whatever resources you find most helpful. There are many helpful, well-informed endometriosis patients who comment on this blog regularly. Please don’t hesitate to stop back and let us know how you and your daughter are doing. I can assure you there are many people here who really care!!

I’m sending positive energy your way for both you and your daughter. Please keep in touch!

Take care!

Jeanne
xo

47 Sherril JohnsonNo Gravatar { 10.12.10 at 12:19 am }

Jeanne, you’re the best! I read Tonya’s comment and thought ‘I hope Jeanne sees this and answers it soon,’ and your response came in shortly thereafter.

So hi to Tonya & daughter, and I just wanted to add that it might help your daughter to be able to communicate with others around her age and in similar situations. One thing about the internet is that location is not an issue. I just did a quick search on “support for young girls with endometriosis” and came up with this Facebook group from New Zealand:

Young Endometriosis Supporters

More positive energy and gentle hugs out to you from SW Georgia,

Sherril
.-= Sherril Johnson´s last blog ..The FDA is considering approval of another new drug for Fibromyalgia that could help with sleep- fatigue and pain =-.

48 JeanneNo Gravatar { 10.14.10 at 1:16 am }

Sherril,

Thank you for your kind words and comments. ;)

Thank you very much for taking the time and effort to search for resources aimed at girls with endo! That was really nice of you. I had never seen this group before. I noticed after clicking over to a site link to that Facebook page that there is a section (a hyperlink in the info tab) with videos aimed at both mothers and daughters:

Endometriosis New Zealand

Thank you for sending positive energy to this mother/daughter who are going through so much right now! :)

Jeanne

49 JeanneNo Gravatar { 12.02.10 at 1:37 am }

All,

A new (14 year old) reader named Jessi posted a comment here:

HERE

I referred her to this post which is more recent and detailed. Please show her your support.

Thank you,

Jeanne

50 pamelaNo Gravatar { 07.17.11 at 2:02 am }

I have learned a lot from reading these comments. My daughter has been suffering with many of these same symptoms since December. She was told that she had a folicular cyst on her ovary. The pain continued and we headed back to the dr. office…had also gone to the ER, but the Dr. there treated her as if she was making the whole thing up. Being 13, and in pain, and then having doctors treat you like you are crazy was hard on her. Luckily, the Dr. office had two very nice women doctors who took her seriosly. they put her on birth control, but she still had heavy and long(two to three week) periods. They gave her pain meds, but the medicine doesn’t even help her pain. Nothing we have tried helps and she has the pain every day. Most of the pain is in her lower stomach and middle back area. She missed many days of school, had to limit activities, etc so this is affecting her daily life. SHe has an appt with a gynocologist this week. I am hoping that they will go ahead and do the surgery to determine is she does have endometriosis. I feel horrible, as a mother not being able to make her feel better.

51 JeanneNo Gravatar { 07.17.11 at 2:45 pm }

Welcome Pamela!

I am glad you have found the comments helpful. I’m sorry your daughter is going through so much. It is shameful that doctors treat girls as if they are making things up… as happened to your daughter. I’m sorry. There are good doctors out there who care and take patients seriously. They can be hard to find but they are out there. With her periods being so long, have they checked her iron levels? I know that I’ve had many times over the years where I became anemic.

I’m sorry your daughter is in so much pain. Hopefully the gynecologist she is seeing this week is experienced at diagnosing and removing endometriosis. Having a skilled surgeon is very important.

Please don’t beat yourself up at all. You are actively seeking out information about endometriosis and you are interacting with endometriosis patients. If anything, you should pat yourself on the back for your efforts to get your daughter properly diagnosed (with whatever she may have… endometriosis or otherwise) and treated. I hope you’ll keep us posted on how she’s doing. I know you’ll find the people on this thread very helpful and supportive.

Peace,

Jeanne

52 JeanneNo Gravatar { 07.17.11 at 3:14 pm }

Pamela,

I just emailed you with some additional information you might find helpful.

Jeanne

53 EmilyNo Gravatar { 05.06.12 at 5:17 pm }

Hi Jeanne ! my name is Emily, and I know this is basically the same question although I have much different symptoms and I was that you could either answer my question or write a blog about it ! ok, so for the past week or so I had been having lower abdominal pain, and yesterday and today it has gotten much worse. I went to the ER this morning and got an ultrasound and blood work which were both normal. After that the doctor just sent me home with pain meds and said that I was having mid-cycle pains. Later this week I am going to a GYN doctor and hopefully she can find out the problem ?I am 13(girl) It is tender, hurts without even pressing on it, and the pain meds aren’t helping too much. so i was wondering if this is endometriosis ? PLEASE HELP ! thanks !

54 JeanneNo Gravatar { 05.08.12 at 2:23 am }

Welcome Emily!

Before I get started, please take a peek at my disclaimer.

Abdominal pain can be caused by many different things. I’m really sorry that your pain is so significant. Whatever it is that’s causing it, I hope you get some relief as soon as possible.

As far as the ultrasound and blood work being normal, this (normal findings on these) is actually not uncommon for people who have endometriosis. Obviously I’m not saying you do or don’t have endo. What I’m saying is that having those tests come back negative only helps them rule out what they were looking for when they performed them.

I’m sorry the pain meds aren’t helping you. In my personal opinion, when doctors make comments such as “you’re having mid-cycle pains” at a time when you’re landing in the ER… I myself would try to evaluate whether that doctor said this in an attempt to be dismissive or what? Pain that’s severe enough to result in a trip to the ER warrants serious attention, evaluation, and examination! After all, you already knew you had pain (and if you were mid-cycle you knew that too). So, being sent off with a “mid-cycle pain” diagnosis isn’t very informative, in my opinion. You certainly could have been experiencing mid-cycle pain, of course. But why?

The question – if it were me – would be WHY is there pain? I’m not sure if this doctor was a primary care physician or pediatrician or what. No matter what happens with other doctors, if you are going to continue seeking treatment (for anything) from that doctor, you may find yourself in a position of educating him/her about how serious your situation is, how bad the pain is, how much it affects your quality of life, and (once you get one) what your diagnosis really is/what it means.

I hope the GYN is able to help you. The only definitive way to diagnose endometriosis is with a laparoscopic surgery. Doctors sometimes make educated guesses prior to surgery BUT it is imperative to rule in (or rule out) endometriosis via laparoscopy – rather than jump to any conclusions about whether one does/doesn’t have endo.

So, the GYN you’re seeing later this week won’t be able to tell you definitively – on the spot – whether you do or not not have endo. I have written posts about laparoscopy (including “what to expect”). You may find it helpful to read that. It’s impossible for me to say whether you do or don’t have endometriosis. The only way to know the answer to that for sure is to have a surgeon tell you the answer after performing a laparoscopy on you. If you should decide to have laparoscopic surgery, please bear in mind that it’s important to find a highly skilled surgeon who is very experienced with recognizing and removing endometriosis.

I wish I could better answer your questions but the reality is that endometriosis can only be diagnosed definitively by laparoscopy and there are other conditions that can mimic endo. For women and girls experiencing chronic pelvic pain (more than 6 months), a high percentage of them do eventually get diagnosed with endo.

I’m not sure if you’ve had pain before or not. I realize you’re only 13. Please do check back here. Others from this thread may see your comment and provide feedback here for you. Also, I am anxious to hear how you make out this week with your appointment. So, please drop back in. I wish you the best of luck this week and hope the pain stops or reduces as soon as possible.

Take care!

Jeanne

55 EmilyNo Gravatar { 05.11.12 at 9:08 am }

well first of all thank you so much for responding !(: and my appointment is actually next week on Thursday. And yes I was pretty mad about that diagnose also. I actually had my appendix taken out last may, my gallbladder out last June, and 2 endoscopies last June and July, although having my appendix and gallbladder taken out d not help the pain so maybe I have had endo the whole time ? I’m not sure but maybe that could’ve been the problem ? Well once again thankyou so much for responding and when I have my appointment I will be sure to tell you what they say !

56 JeanneNo Gravatar { 05.11.12 at 3:18 pm }

Emily:

I just posted your latest comment and I have posted a link to this blog post on my Facebook wall (plus on the Facebook page I have for this blog). I’m hoping that might encourage some of my Facebook friends who have endometriosis (and various other chronic illnesses) to post feedback for you here. I will post a more detailed response as soon as I am able but wanted to get your blog comment posted so my Facebook friends and blog readers can see it. In the meantime, please feel free to send me a Facebook friend request if you wish. (I have several Facebook friends who have endometriosis). Just click on the Facebook icon (pink heart) in the “Connect With Jeanne” section of this blog’s left (upper) sidebar. I’d write more here now but I’m pressed for time. I’ll write more as soon as I can. Hang in there!

Jeanne

57 MelanieNo Gravatar { 05.11.12 at 10:42 pm }

I just wanted to say that I cannot take the pain killers either. I have stage 4 endo and am going in for my 4th surgery in a week and a half. I have been doing acupuncture, heating pad and reiki! It has helped my tremendously. It is not normal to be in pain for years. But the acupuncture and reiki has helped me get through my work days. Good luck to all of us and I’m still praying for a cure!

58 JeanneNo Gravatar { 05.11.12 at 11:44 pm }

Welcome Melanie!

I’ll post a more detailed reply ASAP. I just wanted to get your blog comment posted for now. Thank you very much for sharing your feedback! Take care!

Jeanne

59 JeanneNo Gravatar { 05.15.12 at 11:40 am }

Emily:

I’m sorry for the slow response. Best of luck to you for with this Thursday’s appointment. I can understand why you’d be upset. It sounds like you’ve had a lot done. Bearing in mind that I am not a health care professional (and certainly can’t engage in conjecture about diagnoses), I will say that endometriosis can fool many doctors into believing it’s all sorts of other things – in part because there are so many ways endo symptoms can express themselves. Sadly, far too many women are misdiagnosed with a variety of other things before they receive an endometriosis diagnosis down the road. Obviously, that’s not necessarily to say what’s happening in your specific case but it is crucial, I believe, to find a doctor who is highly skilled and very knowledgeable – to reduce the chances of misdiagnosis and inappropriate treatment.

When you had your appendix out, did you get a copy of your operative report? If so, was the appendiceal tissue normal when they biopsied it? If you didn’t get the operative report, it really might be worth contacting that surgeon’s office to request it. You’ll probably need to just sign a release form for it. It is your legal right to get medical records such as this. Do you know what they were looking for with the endoscopies? For example, were they trying to rule in/out something like Celiac Disease?

You had your gallbladder out too? Wow. I would hate to think that your doctor (or doctors?) are unnecessarily removing your organs. Did they give you an operative report for that surgery? Again, I would request one if you don’t already have it. If the tissue was normal for these organs that were removed, I personally would steer clear of these doctors in the future.

Is the doctor you’re seeing Thursday the same one who has operated on you previously? I don’t wish to alarm you by asking. I am just concerned about the history you’re relating here. Good luck and please keep us posted!

Melanie:

I’m sorry for the slow response. Life has been beyond busy for me lately. I’m sorry you can’t take painkillers. I know what that’s like. Best of luck with your upcoming surgery!! (Having had 7 surgeries myself, I know how old it can get to go in for repeated surgeries). I love, love, love acupuncture! I’ve been getting it regularly for 11 years this month. It’s just amazing! I’m glad to hear you’ve found several things that help you manage your pain. No, it’s not normal to be in pain for years. Anything that lasts longer than 6 months is considered chronic by the medical community. Good luck to you and please keep us posted! Yes, a cure sure would be nice. Take care!

Jeanne

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