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Post by lisa31 on Jul 11, 2006 10:45:45 GMT -5
Hi, everyone! Let me introduce myself. I'm 31 and was diagnosed with endometriosis when I was 25 (6 years ago) from a lap. I had another lap a year and a half later b/c my ovary looked strange on ultrasound. Turned out to have PCOS also (they lasered a little endo then too). So, I haven't had surgery in 4 1/2 years. I've done the Lupron twice (6 mos. each) and it really helped while I was on it. I'm a teacher, so it wasn't really an option for me...I had to have some kind of relief so I could be there for my kiddos. Anyways, I've been off the Lupron for 4 months and am having some problems again...mostly pain. I'm not married and have no children...which brings me to the advice I need. My main objective in this fight of female problems is to be able to have kids when I get married someday. I don't want to mess that up. Here's what I'm wondering....which will cause less fertility problems later....surgery now so that whatever has grown in the last 4 1/2 years will be taken care of (however the surgery causes scar tissue that could cause infertility?)...or continue to hold it off and wait....but coudn't the endo. that's growing cause damage too? I guess I'm wondering if anyone knows which will cause more infertility problems...I'm very confused. I go to see a new doctor tomorrow and I want some input before I go. I'm also wondering if you guys think it's highly probable that in 4 1/2 years the endo would be back (even with Lupron on and off). I'm having really bad pain right before, at the beginning, and on and off throughout my period. I have terrible stomach problems and the pain is so bad during my period it's hard for me to go...I bleed heavy and then it's like I stop, spot, and every once in awhile have blood come out. Last Fall my dr. did an ultrasound b/c of pain and a strange feeling. He said my abdominal cavity was full of blood and kept asking me if I could be pregnant (ectopic). Although I said repeatedly that I'm abstinent, he kept asking b/c of the blood I guess. Anyways, he mentioned that's how endo. occurs. Is that right? I appreciate any feedback. Sorry this is so long, but I want to have more info. for the Dr. tomorrow. One more thing...my mom had Endo. and Adenymiosis (spelling) so bad she had a full hysterectomy at 37.
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Post by ouchy on Jul 11, 2006 10:55:55 GMT -5
Wow, Lisa!!! Welcome to the forum. Sorry about this whole mess w/ endo and PCOS and all that. I also think I may have PCOS, and I'm going in on cycle day 3 next cycle for FSH and LH testing (among other hormone testing).
No one can say for sure whether endo will cause a person to become infertile--it is a case-by-case basis. I do know that endo can recur rather quickly, as I have had 2 laps, about 1.5 to 2 years apart, and the endo had already recurred by the latter lap, albeit not as badly. I don't think there is anything wrong with a second look. That is why I had my second one--the pain had come back and it was the same-old feeling of endo that I knew ever-so-painfully well. I can say that I just saw my gyne. last week, and he said that he thought I wouldn't need another lap, as the endo was pretty mild at the time of the last lap as compared to the first lap which was mild also (given that degree of endo doesn't correlate to amount of pain!!!).
A second look is probably a good judge of how aggressive the endo you have is. Also, your doc. mentioned that your abdominal cavity is/was full of blood??? Did he do anything about that or refer you to anyone? If that were the case, I'd think he'd be pretty concerned? Just my opinion, but you might want to get a second opinion on that.
Anyhow, I have to jet right now. I hope your pain gets better! Sorry if I didn't answer all of your questions--I have an appointment soon.
Cheers. ~Ouchy
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Post by erzulie on Jul 11, 2006 13:33:59 GMT -5
Welcome to the forum Lisa! I agree that having surgery again sooner is probably the smartest thing. Also, unless you had removal by excision, it will almost certainly be back within a few years. It's unfortunate, but it's true. I wouldn't totally panic about the fertility issue though. About two-thirds of women with endometriosis have fertility problems--that means you probably won't!
Speaking of fertility, isn't it frustrating how doctors never believe you when you say you can't be pregnant? I've run into this repeatedly too, though not in the same context you have. For isntance, I was frustrated that I had to pay $40 for a pregnancy test before my surgery even though I had told the doctor there was NO way on Earth I could be pregnant. I was 24 years old, old enough to know how babies are made. Why would I have lied to them?
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Post by lynette on Jul 11, 2006 19:00:17 GMT -5
Hello, Lisa. Welcome to the forum. I can understand the pain and frustration. I had 2 laproscopic surgeries within 1 1/2 years and then a full hysterectomy 5 months later. Endo can come back quickly. It sounds to me, like you should have another laproscopic, especially if you had blood in your abdominal cavity. As for fertility, there are so many things to try when the time comes. The field of medicine is amazing and they are always learning more. Good luck and I hope this helps. You have come to the right place to learn. Lynette
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Post by lisa31 on Jul 11, 2006 21:25:35 GMT -5
Thanks for all of your replies! The doctor didn't seem terribly concerned about the blood in my abdomen...in fact he mentioned that endo. was thought to be caused by that (bleeding into your abdominal cavity) or something...of course this was after I finally convinced him I couldn't possibly have an ectopic pregnancy. But he did say there was a lot. I'm a little curious about it. Where did it go? He had me come back about a week or so later and it was gone. What do you guys think the likelihood is of it coming back in 4 1/2 years (even with the Lupron off and on twice)? I go to the new doctor (a woman) tomorrow. I'll be sure to tell you what she says. I'm really interested about the possibility of it being on bowels. I have TERRIBLE stomach problems. I've been told it's IBS and now that I have a gluten intolerance. Well, I went off gluten and I'm still getting sick. I know that it's worse when I have a period...very painful...so is urinating...but I have interstitial cystitis. It's hard to know what's what when you have several things. I feel terrible all the time, but I have all of this and PCOS and Lupus. Anyways, thanks so much!
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Post by erzulie on Jul 12, 2006 11:02:09 GMT -5
Were you on your period when you had that ultrasound? I know the endometrial implants break down and bleed every month when you have your period, and presumably the blood gets re-absorbed, although not all at once. I used to think it all just sat there because I'd always heard the major problem with endometriosis is that the blood can't get out. That IS a problem, but if it all just sat there forever we'd eventually explode so I'm sure it must get re-absorbed. The endometrial tissue that the blood comes from stays put because it has its own blood supply.
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