Post by textbookcase on Jul 2, 2013 14:58:26 GMT -5
I was diagnosed via laparoscopy in...2007? for certain. It had been suspected for years before that, and actually, when I had a large ovarian cyst removed in an emergency surgery the doctor mentioned that he saw tissue when he was in there. He didn't remove any, though. I've had 2 laps since then, with a lot of tissue removed. During the first lap, my appendix was also removed because the tissue had wrapped all around it, and it was stuck to my intestines. Ew.
I'd always had painful periods. Really bad cramps. Frequent pelvic and abdominal pain. It's very painful when I'm ovulating. Pelvic pain during sex. I have a lot of bowel involvement, so I have intestinal/bowel issues. Bowel movements are horrendously painful.
My RE thought the miscarriages were caused by endo - preventing attachment. I conceived easily, but lost them early. I had an HSG done and it showed some possible areas. It turned out to be late stage 3, early stage 4. I had the lap, got pregnant a few months later and had no trouble carrying.
I was on TB/TN during that time, and the IF ladies were really helpful in prepping me for the post-op of a lap. They warned me that my shoulders would hurt, and at the time, I was like "whaaaa???" but they did!
We are still on the fence about TTC again, but if we do, we'll try on our own and then skip straight over to the fertility clinic. I don't want another lap. A family friend is an RE out in CT, and he told me that he is cautious about too many laps for endo.
Do you know why? I've wondered about this- like, how many is too many? Obviously, I can't just keep having surgery.
I was on TB/TN during that time, and the IF ladies were really helpful in prepping me for the post-op of a lap. They warned me that my shoulders would hurt, and at the time, I was like "whaaaa???" but they did!
We are still on the fence about TTC again, but if we do, we'll try on our own and then skip straight over to the fertility clinic. I don't want another lap. A family friend is an RE out in CT, and he told me that he is cautious about too many laps for endo.
Do you know why? I've wondered about this- like, how many is too many? Obviously, I can't just keep having surgery.
We talked about this years ago, so I don't remember his exact wording...so this will be an incredibly dumbed-down paraphrase...
He said something about it decreasing your "ovarian reserve" (his words) - as in, too many surgeries could potentially weaken or negatively impact your ovaries. A doc is going in, scraping off scar tissue and cysts, etc, and it could continue to weaken your ovaries.
Do you know why? I've wondered about this- like, how many is too many? Obviously, I can't just keep having surgery.
We talked about this years ago, so I don't remember his exact wording...so this will be an incredibly dumbed-down paraphrase...
He said something about it decreasing your "ovarian reserve" (his words) - as in, too many surgeries could potentially weaken or negatively impact your ovaries. A doc is going in, scraping off scar tissue and cysts, etc, and it could continue to weaken your ovaries.
In addition, sometime tissue can be spread as they go through to remove it.
I'll write more in a bit hen I'm on the computer. I've been on phone today and am just utterly exhausted in life today for some reason.
I'm pretty sure I've had endo for nearly 20 yrs though as that's when major issues and pain started but it took about 6-8 yrs to get a diagnosis?
I'll write more about the various treatments I've had later. I only went for treatments when the pain escalated enough to really cause thigs to go black and see stars. I did a lot of continual bcp in btwn more in depth treatments.
I have the endo. It's the suck. I've had 3 laps, plus a hysterectomy in the last 5 years. Have tried numerous bc pills, depo provera, Lupron, and am getting over my hysterectomy tight now. I used clomid to get pregnant as it just wasn't happening for us. Since the pain was so bad, I've been on dilaudid almost consistently for the last 5 years (except while pregnant). It's such a shitty disease I would wish on anyone. PM me if you have any questions or would like one of my books.
I was diagnosed in 2000 when I was a teenager via lap. It stemmed from repetitive pelvic pain (both during and before/after my period), passing out from the pain, and excessive bleeding. I tried 5 or 6 different BC options but bled through everything. I essentially had a period every day for 16 months - it was awful. I've been controlled on Lupron with hormone add-back for 10 years. The first 6 months are a terrible because there's no hormone add-back. After they started replacing my estrogen/progesterone with microscopic amounts (much less than found in BC) it cured the menopausal symptoms.
There's very little data (mostly case reports) for long term Lupron use and it can have detrimental longterm effects if not managed appropriately, including osteoporosis. We don't know if I'll be able to have kids, but this beats having to spend months in bed pumping myself up with pain meds.
I think one of the issues with repeat laps is it increases your chance of developing adhesions, which are also painful. I was thankful to get pregnant after my third.
Stage four here, diagnosed after laparoscopic surgery in January.
I never had any pain until about a year and a half ago, but the pain that developed was deep in my right hip and not anywhere (I thought) related to reproductive organs. I actually thought I had bone cancer and it took me almost a year to realize that the timing of the pain was related to my period cycle.
My pain was never AWFUL, so I was really surprised by the stage four diagnosis. Surgery that was supposed to take 1 hour, took 2.5 because my doctor was trying to scrape out as much of the endo cells as he could. He said my bowels were starting to fuse to an ovary. And, like someone else here, my appendix also had to come out.
I'm on continuous birth control (NuvaRing) now, and can't really complain. No periods, and I only occasionally get the hip pain now - and the pain I do get is minimal. I have no plans to bear children, so at least this wasn't a devastating diagnosis in that regard.
I have been told that bc is the best option for me. So, even though H had a vasectomy, I still have an IUD. ::boo, hiss::
I will say the IUD (mirena) is really nice because my periods have completely stopped, there's no pill to remember every day, and I have fewer side effects than with the pill. Have you looked into it?
I've had 2 laps. The first was when I got the diagnosis confirmed (stage 2), they were able to remove all but a couple of spots on my ureter. We started ttc immediately and had our kids basically back to back (16 mos apart). The second lap was after they were born, I was having lots of pain again but they found nothing new.
It really sucks. I'm sorry you are dealing with it. I am very lucky that the pain is under control for me right now. I have some bowel issues but nothing too terrible.