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-   -   Endometriosis HELP!! Is this what my daughter has? (http://www.healthboards.com/boards/endometriosis/917378-endometriosis-help-what-my-daughter-has.html)

Krism1004 09-07-2012 07:34 AM

Endometriosis HELP!! Is this what my daughter has?
 
I need help. My daughter has experienced pain for years. At first it was right after her periods, but now happens all various times and seems worse when she's on her period and still sometimes often right after. I saw her when she was young (maybe 12 or 13) figiting around uncomfortably, and when I asked her what she was doing she explained this pain she had " up inside", she thought it was something all women must have once they begin having periods. I explained to her that no it was not and from that point on it just has gotten worse and she is now a senior in high school upstairs crying in severe pain. She describes it as up inside her uterus, almost like its in the wall of the uterus. She went through an ultrasound years ago, pap smear and pelvic exam, then they sent her to a uroligist who did a full catscan with contrast... everything showed nothing irregular. I was perplexed and we just dealt with it. This year we went back to the gyn because it seems much worse on more frequent. Again a pelvic and ultrasound showed nothing. Doc said it could be endometriosis, but said if it it was they would just perscribe birthcontrol, so we could try that just in case. They gave her the depo shot in the hopes it would help. It has not helped at all and she has been on her period evern sense and we are at week 11 of the shot. We will not continue it. She has had the pain a lot more since the shot and the last two days she has been crying and moving around trying to get comfortable. She cant sleep because the sharp pains keep waking her up. I have no experience personally with this so I am clueless as to what to do. (although my sister has a similar situation and just lives with it.) The doctor mentioned doing a exploritory procedure but again said if it was endometriosis birth control would be the treatment. She has a follow up next week, but because of the extreme pain the last 2 days, I am trying to get her in today, although nobody from the doctor has called me back. I guess I'm just looking for advise. Initially I heard it probably wasn't endo because its such a sharp pain and heard endo is usually a dull ache, but now I see others describe it as sharp, so I'm confused. Don't know what to do or think and would love any help anyone can offer. Thank you!!!!!

writeleft 09-07-2012 08:06 AM

Re: Endometriosis HELP!! Is this what my daughter has?
 
Endometriosis invariably does not show up in normal scans and tests. I have been diagnosed with it for years, yet it has never actually been seen without surgery, and I am too ill for any surgery so that option in out. Her symptoms sound very familiar, and I am so sorry your daughter is going through all this at such a young age.

After literally years of unbearable pain and many trips to any doctor or hospital that would see me, I was finally referred to a pain specialist to treat the pain. In my case, I am hoping menopause will bring an end to this for me.

Often times doctors are reluctant to perform surgery for other reasons too. Scar tissue can be the source of endometriosis, so adding more scar tissue can make it worse. Often it can connect organs together, called adhesion's, and they can really hurt badly.

I had the same reaction to the depo and eventually went off it. For the last year or so, I have been forced to take narcotic medication to treat the pain. Although this is not my first choice, it is a route some of us have to take for relief.

I would do everything you can to seek help for her, as this is a long and painful road, and I am so sorry your daughter is going through it. It must be so hard for you to sit by and watch as she is in pain.

I have found that a heating pad across my stomach can help the pain, but it only goes so far. I hope you get some more responses that are more helpful.

alikali4 10-02-2012 11:21 AM

Re: Endometriosis HELP!! Is this what my daughter has?
 
Hi, I am so sorry for your daughter. I know how she feels. I just had a laproscopy surgery 3 weeks ago. I have stage 3 endometriosis (it's staged like cancer 1-4) I am 25 years old, and it sounds like how I was when I was your daughters age. It has become chronic for me now. I have endometriosis and a lot of scar tissue on my ovaries, fallopian tubes, uterus, colon, bladder, rectum, and pelvis. It can be a dull pain occasionally, but for me it is a constant sharp pain. The thing about endometriosis, it effects every women differently. There is Adenomyosis, which is endometriosis in the lining of the uterus. That could be the "up inside" pain your daughter in talking about. There is no cure for endometriosis, they don't even know the cause. It's a very painful disease to live with. I got the laproscopy surgery because I was fed up with the pain and it's nice to have a diagnosis, because for me, it was getting validated for all the pain I had and the years that I had to go through with it being undiagnosed. I am glad I had my mom by my side, just like your daughter has you. Its hard because doctors wouldn't take me seriously. I also had a low hormone IUD put in. I am still in the process of adjusting to it. I wish you and your daughter the best through your journey.


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