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Teen With Suspected Endometriosis

Recently, I published a post regarding a 13 year old with suspected endometriosis. There was a warm outpouring of support from readers to her. Since it is Endometriosis Awareness Month and since so very many endometriosis patients’ symptoms start at young ages, I thought it would be well worth republishing the post and the many thoughtful, detailed, supportive comments that readers posted to the teen in the following post.

Please be sure to read the comments. Even if you saw the post when it was originally published, you may not have seen all of the follow-up comments that followed.

Post on teen with suspected endometriosis:

Article on teen with suspected endometriosis and the numerous thoughtful comments posted to it by readers

It is wonderful to see an outpouring of support in a situation like this. Together, chronic illness patients (regardless of their specific diagnosis) can band together and support each other. Thank you to everyone who took the time to share their supportive and thoughtful words with this 13 year old who is in so much pain.

There is hope and there is support. There are many people who care. You are not alone.


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


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Reading: Teen With Suspected Endometriosis

21 comments

1 Jannie FunsterNo Gravatar { 03.05.10 at 12:36 pm }

Jeanne, I will check it out. Thanks for letting me know!
xo
.-= Jannie Funster´s last blog ..The Blog Party (a poem) =-.

2 JeanneNo Gravatar { 03.05.10 at 12:39 pm }

Jannie,

Thank you. It saddens me that so many girls are suffering with such serious symptoms.

Jeanne
xo

3 AmandaNo Gravatar { 03.05.10 at 4:11 pm }

Indeed it is very sad… I was talking to a friend at work today and she was saying she doesn’t know how I deal with all the effects endo has on my life and I pointed out to her that half the time I don’t even think about the way I “deal” with the symptoms because I have had it for so long that it is “normal” for me… for me it is far harder to imagine life *without* the pain, irregular, heavy bleeding, worry about fertility etc

That being said, I also told her about how terrifying it was as a young teenager trying to deal with the exact same symptoms, having no idea why I was in such unbearable pain, why my mum was angry (I thought she was angry with me, but now I know it is because she was angry at herself because she felt guilty that she had “passed it on”… which I told her is a load of *****, but she still felt that guilt and the pain of not being able to stop me going through it). I also remember the pain when friends would tell me to “get over it”, would roll their eyes when I said I had been off school for my periods (that even happened when I was in Russia as a 20 year old, we know it will always happen, but by then I was able to deal with it and know that I wasn’t making a fuss over nothing)… being a young teenager and not understanding this pain, why you are different, wondering whether you really are just “weak” and “making a fuss over nothing” and long before you figure out (by painful trial and error) what actually works for you… which painkillers are most effective without making you vomit, whether heat, exercise, certain foods etc make it better or worse… and so it goes on… not to mention the mental peace and ability to cope that you start to build up as you get older…

For me, my endo still causes me immense physical, emotional and mental agony, but I am far more equipped to deal with it now that I am older. I would never wish to go back to those teen years, which we all must admit are hard enough at times, and have to deal with an unexplained/undiagnosed condition such as endo.

My heart goes out to all those who are suffering, but particularly those who are young.
.-= Amanda´s last blog ..What the future holds… =-.

4 JeanneNo Gravatar { 03.05.10 at 7:38 pm }

Amanda,

It’s funny how some people (like your friend from work) have some understanding of how challenging chronic illnesses can be to manage while others can have no clue. It’s true that when you live with symptoms long enough, they can become a new normal of sorts.

I’m sorry your mother got angry (which you perceived as anger at you). It’s too bad that she got angry at herself. I’m sorry about your friends rolling their eyes. They very clearly didn’t get it.

It really is very difficult to cope with at a young age. It’s hard enough for adults! Like you indicated, it takes time to find a sense of peace and to develop effective coping mechanisms.

I agree with you that dealing with it all as a teen is worse than when one is an adult (with life experience that translates into more developed coping skills, resources, education, etc). The not knowing what is wrong is really tough. I remember being relieved when I got a diagnosis because I finally had proof it wasn’t “in my head”… and hope for relief of symptoms.

Jeanne

5 vanitNo Gravatar { 07.21.10 at 4:21 pm }

Hey I have endo and I’m 19 years old I have stagE 4 and it has taking a dragstic impact on my life.I need help dealing with this and sum 1 to talk to

6 JeanneNo Gravatar { 07.22.10 at 12:27 am }

Welcome vanit!

If you are looking for fellow endometriosis patients, you’ve come to the right place! There are many wonderful, supportive, informative endometriosis patients who read and comment on this blog regularly. If you could share a bit more about your situation, it will increase the chances someone who can relate will see it; I might even be able to steer you towards people who are struggling with similar (specific) issues that “match” yours. (Endometriosis is a pretty broad category. It affects different people differently). If you haven’t already, please check out the various endometriosis-related posts on my blog. (There are hundreds of them). I look forward to hearing from you again soon and hope that you find this a safe place to turn for support and information!

Jeanne

P.S. I have lived with endo for 28 years. So, if you need an ear… you have already figured out where to find me. ;)

7 JeanneNo Gravatar { 07.30.10 at 3:04 am }

vanit,

Please keep us posted on how things are going and how readers here might be able to support you.

Thanks,

Jeanne

8 YonahNo Gravatar { 09.26.10 at 8:18 pm }

I’m almost positive that I have endometriosis. For a long time I thought it was PCOS, but endometriosis matches my symptoms almost perfectly. I’ve been in pain since I was 10. I finally talked to my mother about seeing a doctor, and she doesn’t want to talk about it. She’s embarrassed. I’m scared I’ll never get diagnosed with anything!

9 JeanneNo Gravatar { 09.26.10 at 8:52 pm }

Welcome Yonah!

If you don’t mind me asking, how old are you? I am very sorry for your pain. I’m also sorry that you are having difficulty communicating your mother about your health. I had written a guest blog post for a blog called Shaping Youth that touched on this subject (the difficulty girls and their parents can have discussing such issues). My endometriosis symptoms began when I was 13 years old (and my mother didn’t want to talk about it). I didn’t get diagnosed until I was 23.

The definitive method for diagnosing endometriosis is a surgical procedure called laparoscopy. Many conditions can mimic the symptoms of endometriosis. I’m going to go dig up the Shaping Youth post and I’ll post the link back here. Can you please get back to me to give me an idea of how old you are?

Thank you,

Jeanne

10 JeanneNo Gravatar { 09.26.10 at 9:22 pm }

Yonah,

Here is the older post I had mentioned previously. Perhaps it might help you better communicate with your mother about your health issues, whatever they might be:

Shaping Youth interview post

Jeanne

11 JeanneNo Gravatar { 09.26.10 at 9:34 pm }

Yonah:

If you take a look at the comments section of the post below, you’ll hear what other women had to say about having had symptoms begin at a young age:

Original interview on Shaping Youth

Jeanne

12 YonahNo Gravatar { 09.27.10 at 4:27 pm }

I’m 13. I’ve had endometriosis symptoms since I was 10. My school nurse suggested an acupuncturist. Is that a way of treating endometriosis or whatever else I might have?

13 YonahNo Gravatar { 09.27.10 at 5:32 pm }

I’m 13. I’ve been in pain since I was 10.

14 JeanneNo Gravatar { 09.28.10 at 12:12 am }

Yonah,

First, I am sorry about whatever it is that is causing your pain (whether it is endometriosis or not). Next, please take a moment to read my blog’s disclaimer. It is posted in the left sidebar but I wanted to include it here in case you missed it.

There are many conditions which can mimic the symptoms of endometriosis. My personal opinion is that getting a proper diagnosis is very important for a variety of reasons. A friend of mine, Endochick, wrote about some of the many conditions that can be confused with endometriosis on her blog awhile back. She kindly gave me permission to reprint her post and you can read it here:

Endochick’s guest blog post

As you can see from her post, it is quite important to get an accurate diagnosis. I absolutely understand that you’re having some difficulty communicating with your mom about the symptoms you’re having. I had difficulty communicating with my own mom about my symptoms when I was 13. Whether you do or do not have endometriosis is something that can only be determined by a laparoscopy. Your doctor can determine whether a laparoscopy would be appropriate or not, based on your symptoms. Unfortunately, some doctors mistakenly believe that endometriosis does not affect girls your age. So, finding a doctor who will take your symptoms seriously is important. Again, I understand that you’re having trouble communicating with your mom about all this. Is it possible that sharing some of the information you’ve found online might help?

I located another previous post that I think you might be interested in reading. I wrote it after a 13 year old who suspected she has endometriosis had contacted me. This post garnered an outpouring of comments from endometriosis patients… many of whom, like me, had symptoms begin at a young age. Perhaps reading that post and the many comments it prompted might help you in some way:

Post prompted by a 13 year old with suspected endometriosis

It sounds like you have a school nurse who is trying to help you get some relief. This is wonderful! I only wish the school nurse I had when I was 13 had shown me any kindness or concern whatsoever. Despite my straight A grades, my school nurse in middle school thought (for some inexplicable reason) that I made trips to her office to “skip class”. Nothing could have been further from the truth. I wanted very much to be in class but there were times I became far too ill to be there and those were the times I wound up getting sent down to the nurse.

Yonah, I am a huge acupuncture fan and am the last person to ever discourage anyone from trying it. However, my personal belief is that getting an accurate diagnosis is very important. So, I personally wouldn’t feel comfortable telling you, “sure, try acupuncture and see if it helps”. As was mentioned in Endochick’s guest blog post, there are other conditions that can be confused with endometriosis. So, it is difficult for me to suggest any treatment given your lack of a definitive diagnosis.

I understand that you said your mom is embarrassed to talk about your symptoms. Given your young age, is there any way that you could talk with your pediatrician about your situation? Ideally, you want to try to involve your mom as much as possible. Given that you are a minor and that you are likely going to need support (emotional and physical), is there a way that you can try talking to your mom again?

Alternatively, could your school nurse and/or pediatrician assist you in facilitating a conversation with your mom in a non-threatening way that is least likely to embarrass her and most likely to encourage her to work with you to obtain the medical care you need? I should forewarn you that, in my experience, pediatricians are not always very well-versed about endometriosis. However, if you’re having difficulty talking with your mom about things… a pediatrician might be able to help get the conversation going about your symptoms.

You know your mom best. I’m not sure what the best approach is to bring up this topic with her. Have you tried talking with her repeatedly or was it just a one-time thing?

Please check out the posts I mentioned and see if they are helpful in any way. It is difficult to give you any type of treatment suggestions for a variety of reasons:

1) I am not a health care practitioner and cannot give medical advice.

2) You are a minor.

3) I do make suggestions to people regarding possible treatments (such as acupuncture). However, these suggestions are made regarding diagnosed conditions.

4) Personally, I would not want your symptoms to be masked and a proper diagnosis to be therefore delayed. If your doctor were to advise trying acupuncture, that’s one thing. I can’t give medical advice.

5) Honestly, I think you want to make your best effort to involve your mom in this whole process (if at all possible) because of your age.

There are many parents who are embarrassed to talk about the type of symptoms that endometriosis can cause. I know my mom fell into that category. Maybe if you gather up some of the information you’ve found about endometriosis and show it to your mom, it would help break the ice regarding talking about it. Sometimes, parents feel helpless in such situations. I think my mom was embarrassed to talk about it AND felt helpless. I think she didn’t know what to do.

I wish that I could give you some more concrete help. Please keep me posted on how you are doing. I haven’t heard from the 13 year old referenced in the other post I mentioned in quite awhile and I wonder how she’s doing. I would appreciate it if you could stop back here and let me know how you’re doing because I do care!

Take care,

Jeanne

P.S. I’ll leave a new message on that other post. Who knows? That 13 year old (“Flocked”) might even turn up and comment on one of these posts. It might be helpful to talk with someone your age having similar symptoms.

15 JeanneNo Gravatar { 09.29.10 at 8:57 am }

Yonah,

Please keep in touch and let me know how things are going. ;)

Jeanne

16 YonahNo Gravatar { 10.01.10 at 9:26 pm }

I’m not going to be in pain for about two weeks at this point, so I don’t think I’m going to talk to my mom right now. I’m going to wait for the time when my symptoms are the worst. That way she will come to the realization that something has to be done.

17 JeanneNo Gravatar { 10.01.10 at 10:34 pm }

Yonah,

Thank you for stopping back with an update on how you’re doing. I’m sorry that you are in pain. Hopefully you and your mother can talk about what’s going on so that you can get checked out to find out for sure what’s going on. You are in my thoughts!

Jeanne

18 JeanneNo Gravatar { 12.02.10 at 1:36 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

19 SheilaNo Gravatar { 01.20.13 at 4:35 pm }

I know no one has posted in this for 3 years now, but I just came across this page and just had to let this out. I’m 19 years old and ever since I was 14 I’ve had such bad period pains that I can’t even walk or sit up, if I take painkiller like paracetamol or ibuprofen I throw up, if I sat or drink anything even without the tablets I still throw up. Sometimes I feel like I’m getting fever, my whole body feels so hot and I feel like I’m sweating. I know everyone has different period pains, but I taught to myself this can’t be normal. I literally feel like someone is stabbing me with a knife over and over again. Then I read about endometriosis and taught maybe I have it? But I don’t know whether to go to a doctor and speak to about it, I wonder if he’ll just laugh at me and think I’m just over exaggerating, but I can really relate to some posts on here, and I was wondering how it is diagnosed, I’m always scared of going to the doctor for period pain, the past two times I had gone to the doctor, as my mum was not home and I literally felt like I was dying because of the period pain so I made my dad drive me to the doctor, all they would give me was ibuprofen and paracetamol, and that won’t even stay in my body, I feel like the doctors are just so useless when it comes to this, like they’re taking it for granted

20 JeanneNo Gravatar { 01.20.13 at 8:28 pm }

Welcome Sheila!

I am stuck offline with the flu now and therefore can’t reply in detail as I’d like. However, I wanted to at least get your comment posted. I’ll reply in more detail as soon as I’m able. In the meantime, there are several posts like this on my blog (some of which are newer or more recently updated).

Please feel free to look at other posts besides this one. Here is just one example of another post about teens and endometriosis. Endometriosis is definitively diagnosed only one way… by an outpatient surgical procedure called laparoscopy. (You’ll see laparoscopy mentioned in the other post I just mentioned. Sorry that I can’t write more now but I need to lie back down).

Once I get this flu behind me, I’ll add to this reply. Hang in there!

Jeanne

P.S. If you share my endometriosis posts with your parents, it might help them understand what you’re going through (regardless of what may be causing your symptoms) to read through some of the comments posted.

21 EndochickNo Gravatar { 02.01.13 at 12:53 am }

Sheila – As someone whose endometriosis symptoms began as a teen, I wish I had had access to information as a teen. My doctors were grossly uninformed. I was accused of making it up to get out of gym class and of being a hypochondriac. It wasn’t until years later — as a married adult later — that a doctor agreed that not only did I need a lap, but she would give me one. This was AFTER a slew of male and female doctors denied me the diagnostic operation, even with a strong family history and symptoms! What finally did it? My doctor’s PA had had a hysterectomy for endometriosis. Right away, these women knew what I was going through. Ask around. Call around. Find a gyno with some history or interest in endometriosis. Good luck.

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