Dr. thinks DD may have endometriosis
Moms View Message Board: General Discussion: Archive October 2004:
Dr. thinks DD may have endometriosis
Which isn't really a surprise, but........
She's had extremely heavy, painful periods ever since she started, they were very irregular, she would miss at least one day of school each period and just stay in bed from the pain. And in between she would have pain. So I took her to a GYN to get things checked out. I had endometriosis for years and went through several surgeries and suffered a lot with it, so I told her doc about my history, *just in case* and just for the record. Her GYN put her on the pill when she was 15 or 16, to regulate everything.
That worked fairly well for a few years, but the last year she's been having increasing pain with periods, and also in between periods. She's been back to the GYN twice in recent months for this. She just had a trans-vag ultrasound which didn't show any tumors, etc.
They changed her B/C pills to a lower dose estrogen and gave her Anaprox to take 2X/daily for the pain and told her to call if she had breakthrough bleeding or continued pain.
Well, she's done nothing but bleed and is in a lot of pain, so they want to schedule a laparoscopy. But she won't have a break from school until December, so it has to wait until then.
I know there are new things/drugs being used for endo now - it was in the 80's when I was diagnosed and I had a hysterectomy in 1994. Does anyone have any input or recent personal experience for me? Jen's just 19. 
Several of my friends had the same exact thing. They are all in their 20s. After the laparoscopy though, they are all fine, and actually all got pregnant. LOL, but they are all happily married, thank goodness. God bless,
Holly
{{{{Karen and Jen}}}} Karen, I don't have any experience or advice with this. Just letting you know my thoughts and prayers are with the both of you. Keep us updated.
Karen, I have a friend who has endometriosis. I remember visiting her in the hospital after she had surgery for it (before laparoscopy). She also has a 20 year old daughter, which all doctors told her would never happen.
I would get a second opinion, and seek a gyn/ob who has a lot of experience in endometriosis. I agree that a laparoscopic exploration is probably inevitable and will provide information which cannot be gotten in any other way.
This *is* a 2nd opinion. And there is conflicting belief that endo tends to *run* in families - I had it pretty bad and one of my sisters did also.
I know that after my hysterectomy, the inept doc who had to step in for my regular doc due to illness, and perform my surgery, didn't bother to laser the endo in my belly when he did my hysterectomy, and he started me on estrogen immediately after surgery. 4 months later I was having more problems than I'd had before surgery and had been going back every 2 weeks. I went to another doc and sure enough, though I no longer had a uterus, the endo was still in my body, growing away. They used *male* hormone therapy to *kill* it off. It was AWFUL - several months of whacko hormones and feeling like I was losing my mind, literally. But it worked and I've been great ever since.
If anyone else has dealt with this recently, I'd love info and opinions. Thanks for all the replies so far.
I have not experienced it, but I will be thinking of you both.
(((Karen and Jen))) I will also be thinking you you two.
I'm so sorry for Jen! But maybe it's better that they find this now, and treat it - and remember, there are new treatments, etc. coming out all the time!
I have/had severe endometriosis as does my younger sister. My older sister has just slight endo. Endo is an odd disease as I had a very severe case with not a lot of pain, my older sister on the other hand has severe pain and not a severe case. My younger sister has both severe pain and severe endo. I have had 2 laproscopic surgeries and one laporatomy (sp). Since having children my periods are more regular and much more like "normal" I was told that pregnancy can cure endo.
My younger sister had ovarian cysts that would form from the endo and was in the hospital at least 3 times a year when one would rupture. Two years ago she lost a tube and an ovary from this. The good news is that this weekend we will celebrate her son's first birthday.:-)
I have a cousin who is in her 40's now who was diagnosised with endo when she was just a few years younger than your daughter and her parents made the decision for her that she should have a hysterectomy..I don't think she has every REALLY forgiven them for that.
When I was going through treatments my dr told me that he would do everything possible to make this manageable until I was AT LEAST in my 40's. He really didn't want to do a hysterectomy any time before then if it was at all avoidable.
Tammie, exactly what *treatments* did you undergo??
There is NO WAY Jen (or I, on her behalf) will consent to a hysterectomy at age 19!
Mine was not diagnosed until after I had kids, but I had all the same problems before conceiving that I did when I was diagnosed. Which leads me to believe I had it all along, BUT, I've always read and been told that you have a hard time TTC with endo, and I got pregnant very easily, just had a lot of problems with the pregnancies.
Jen is obviously several years away from considering having kids, but she definitely wants that option.
What I've always thought, and it was true for me, was that no matter now many times you had it lasered away, as long as you had your uterus, it would keep coming back. I had several surgeries for it, lost a tube and ovary due to that and a massive fibroid, and 15 months later had my hysterectomy because I was finished having kids and was tired of suffering.
But I would like to see Jen get some successful treatment so she can at least have the option of having kids in her 20's...........
So any info is much appreciated!
I don't have any personal experience, but just wanted to send you a big ((HUG)). One of my friends was diagnosed with endometriosis, and she's expecting her first baby at any moment. I'm not sure of what treatment she had, but I'd be glad to ask for you.
Would you do that Eve?? I'd really appreciate it!!!
My endo. was diaganosed after laproscopic surgery. I was 22. I was told if I wanted children I needed to start thinking about it back then. I was happy and single. No time for babies in my schedule at that age. I cried for years and remained depressed about not having kids. I never had treatment except for bc pills. At the age of 35 I became pregnant while on the pill and taking antibiotics. No dificulties during pregnancy. I am now 42 and pregnant again.
Karen,
I took Lupron shots monthly for approximately 12 months..Lupron puts your body into a psudo-menopause with almost all the wonderful (not) benefits of menopause. I also took about 6 months of Zolodex, which was a little capsul that they injected into my stomcache, that did the same thing as Lupron but the side effects were not quite as bad.
Tammie, if you don't mind me asking, how old were you when you took Lupron? I'm not familiar with it. I want to find out everything I can so I can talk to Jen about it, if this is indeed what is wrong with her. I'm going to google the stuff you mentioned, but I'd like to hear the *word of mouth* side, so if you feel more comfortable emailing me, please do.
Don't know anything about it, but I am praying for your dd.
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