Endometriosis and constant bleeding in 15 year old

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My daughter was just recently diagnosed with stage 2/3 endometriosis. She is 15 years old. After two years of daily pain - ranging from mild cramps to ER visits screaming in pain, and 16 months of constant, daily periods/bleeding, numerous pills, injections, missed school, and a whole lot more, her dr at UCSF did exploratory laparoscopic surgery. They had suspected endo, but the surgery confirmed it and the dr took 5 hours cutting it off her pelvis, rectum, bladder, and ovaries. During the surgery they also inserted a mirena iud to try to control her bleeding. My daughter expected this to fix her, and 4 months post op the pain is worse than ever and she is still bleeding. Mental anguish has taken its toll, with depression and talks of suicide. She is also anemic, iron deficient, and fatigued all the time. I am at my wits end. Our days are consumed with dr visits, popping pills, and trying to behave like a normal teenager. She is moody and very unhappy. The dr has now suggested we remove her iud and another dr - our 5th opinion, has suggested Lupron shots. Im very torn over this treatment option due to the depression the Lupron can cause. My kid is already in a dark place. Please, does anyone have any advice? Thank you.

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  • Posted

    Hi

    Im so sorry to hear what your daughter is going through as you as a family because I know how tough it is for everyone, I'm now 39 but when I was 15 I started my hell with pco, and tried so many different things, ie surgery, injections, medication, even after I had my 2 children things gor worse not better, now for the last 8/9 year's I've suffered with endro and again tried everything possible even having an hysterectomy 6 year's ago, then 4 year's ago having my overies out as thing's got worse not better, then last year my pain returned. And more surgery found that one of my overies had regrown, which I didn't know was possible but told all was gone now, but yet again I'm back to square one, pain, sickness,weight gain, I've had blood tests that now show I have fall female hormone levels that only women with overies should have and my overie has regrown with a cyst again, and after 2 more mri's found endro is back worse than ever, I have a lot going on inside and 3 top consultants have never come across anything like this before, I'm waiting for a date for more surgery which could end in having a coloscopy bag, I really hopw not but getting to the point I just don't care and want the pain to go away, I really hope your daughter gets sorted soon, and no matter what g

    Don't give up and be fobbed off, and not sure if you've been told but endro can grow in aon many other parts of your body, ie lungs, throat, brain, I don't mean to scare you but I was never told these things and wish id been told, good luck to you both xxxx

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    • Posted

      Thank you for taking the time to answer and tell me your story. It's been a few years of hell for us, and I simply can't imagine decades of this for any woman.

      I have done a lot of research on this disease, and there's a lot of conflicting information. We are at the point now where we are changing diet and trying acupuncture - basically anything that can help. I've even considered buying cannabis tincture - loaded with cbd's so it's more for pain than getting high, because I'm at the desperate stage.

      I will take any and all advice people an offer. Thanks again.

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    • Posted

      I am so sorry for your daughter. Once again makes me thankful to have gone on birth control pills back in 1970 when they were much stronger than they are now. I went on them for birth control and didn't then know there was anything abnormal about my periods/pain. When I went off at 24, I found out.

      I had a total hysterectomy at age 27 at my insistence, docs didn't want to do that because I had no children. One of the best decisions of my life. I used premarin for decades and it was all good. I often walked past the "sanitary" section of grocery stores and said a prayer of thanksgiving, both that I needn't spend any time or money there and for all of my pain-free life.

      27 years later docs thought I had diverticulitis, lost a small piece of my colon but it was the return of endo, no other problem. I was by then taking the lowest dose of premarin every other day. Have been off it since the surgeon showed me the path report. The small fear with which I live now is that the colon might open near the removal site, but I do all that I can to avoid stress there.

      Have you asked the acupuncturist to work on your daughter's depression? I had very good results with that, but the cause of my depression wasn't something ongoing. Couldn't hurt to ask.

      IMHO, go after all this as aggressively as you can. Leaving endo alone will never make it better. Ditto for depression that comes with something as constant and implacable as endo. Docs will hesitate to mention, much less perform, a hysterectomy on such a young woman. I'm not saying that she should have one, just telling you that if at any point either of you think she should consider it, you will have to push the docs.

      Further IMHO: should your daughter ever have a hysterectomy, consider long & hard for removing everything including both ovaries. The idea of "let's leave one for you to have 'natural' hormones as long as possible" is a crock, IMHO. Ultimately in women like us it will have to be removed. As long as it's in there it will cause problems.

      I hate that y'all are going through this but I'm very thankful for your daughter has you for a mom. There are way too many endo daughters whose moms haven't believed the agony; some even accuse the girls of faking or malingering, to which we all respond "you'll never know how much I wish I were malingering."

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    • Posted

      Keely, I'm so sorry! I pray you don't end up with any kind of ostomy bag. I helped a family member with hers and it is a massive undertaking that affects your life 24/7 especially as you age. Your body has an astounding power of regeneration. Scientists will fight each other for the right to study you. I'm not kidding. If you have the energy (I wouldn't), see if you can work that to your benefit.

      You're in my prayers.

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