endometriosis coming back too soon? - Endometriosis Message Board

mousie · 07-09-2003, 07:54 PM

man i've been gone awhile. but okay, i need some help/opinions/whatever anyone can offer here.

okay, i'm 21 years old, and i've basically had symptoms of endo since i was 17. i knew i had it when i read about it but i was too scared to get a lap and didn't think the endo would affect me. when i started having sex a year later it hurt so bad i sometimes had to go to the ER, and last year it began hurting nonstop. my pain was so severe i couldn't move sometimes and my friends would have to carry me into the ER because i couldn't move due to pain paralysis. i was put on morphine IVs practically every weekend. then in october (2002) i was diagnosed with endo. i had one spot on my bladder and a strip of it on the cul-de-sac. it was cauterized, and i was put back on birth control.

the pain came back after 4 months and so i was put on continuous birth control. i had to take the first 3 weeks of the pills, and instead of taking the placebo pills, start over. basically i didn't get a period for 4 or 5 months. but then i missed a pill, had the most painful period i've ever experienced, and passed a ball of tissue and blood about the size of a super ball. then i had to triple up on the b/c pills because my period wouldn't stop and was heavy... i started getting sick, and about 2 weeks ago to the dr told me to stop the b/c altogether. (new doctor...)

as of about a week ago, i've been experiencing excrutiating pain, to the point where my left leg becomes paralyzed with pain. it's only on the left side, and maybe once or twice has been on the right for about a minute. 99% of the time it's on the left side. i also feel pain when i have to urinate, so i know it's definitely back on my bladder. the doctor was saying to come back at the end of july and we'll see what we should do from here. i want a baby but i really would like a hysterectomy as soon as possible. my boyfriend and i have been talking about a baby for awhile and we were aiming at trying in the fall. but now that the endo seems to be back, i'm not sure if it would be a good idea. they didn't see any on my reproductive organs the FIRST time, and they had said i shouldn't have any problems. i've never been able to get pregnant though, but i've also been on and off birth control since i was 17. i was off for about 9 months though, and nothing. but the guy i had been with did a lot of drugs, so it's very well he's infertile.

i'm wondering if anyone has any advice. should i get another lap done and then try, even though it wasn't on my reproductive organs the first time? i'm afraid it could be back on them again. i'm almost sure some scar tissue grew on my belly button scar too because lately i have pain in my belly button and when my boyfriend touches anywhere near it i jump. i'm also wondering what the chances are for it to get worse this time? i'd be happy to get the lap and be told it's still minimal, but i'm so scared they'll say i have it on my reproductive organs. my doctor is really pushing for me to try for the baby now. i really don't know what i should do. does anyone have any advice or... anything?

Mindoo · 07-09-2003, 08:31 PM

Get the lap and see what they find. More information will help you make a better decision. It might also help you conceive faster.

mousie · 07-09-2003, 08:46 PM

yeah that's true, but isn't it true that endo can get worse the more laps you have done? (scar tissue growing on the incisions and such)...

i guess the only thing stopping me is that i had a horrible experience with the last surgery. so much CO got to my lungs when they let it out of me that i couldn't lay down because i couldn't breathe, and i was in severe pain in my chest and shoulders. i also was unable to eat for nearly 3 days because of the anesthesia, and lost 10 pounds. i'm only 107 lbs right now so that's especially not good for me

Mindoo · 07-09-2003, 09:27 PM

Someone else is going to have to help here -- I've never had a lap -- but I think they can remove some scar tissue. Is that true from those who have had laps? and I've never heard of a 2nd lap being more detrimental. It can't be as harmful as probable endo.

In regards to the post op complications - my husband had to have repeat surgeries on his eye for which he had to be put under. The first time he was violently sick when he woke up. We talked to the dr. about this, and the second time the anetheist (sp?) changed his drugs and he came out for under the anethesia much better. The docs can adjust for post surgery complications. Talk to them to see what can be done.

mousie · 07-09-2003, 09:57 PM

hmm, yeah, that's a good idea. but regardless, the CO will go to my chest. that's normal for a lap, but me being a lot smaller and having lung problems, it was worse with me.

what i meant about the scar tissue.... i've been told/read that endo can grow on the scar tissue left from surgery. also i do know it gets worse over time. i'm so scared they'll find it on my tubes