I'm new to the forum and hoping to hear about others experiences with severe endometriosis.
I'm 39 and have been TTC for several years. I had a laparotomoy for a large (nearly 13 cm) cyst on my LHS ovary in late Feb this year. After the operation, the gyne advised I had severe endometriosis, and she bumped & drained a blood cyst on my RHS ovary during the op (not evident in pre-op scans). I also have a 3 cm submucosal fibroid.
I was referred to a gyne specialising in laparoscopic surgery for endo (Dr Wynn Williams), and another re:IVF (Dr Robert Miller). They have basically suggested having the fibroid & endo removed for best chances of conceiving (low, try naturally initially), and for pain management/longer term health.
I've been struggling to make a decision about whether to go ahead with a laparoscopy soon. I'm resolved to having the fibroid procedure & have been advised this could be done in the same op as endo. Help!
Apparently I have a lot of adhesions including RHS ovary stuck down, the pouch of douglas 'obliterated', & MRI shows nodule adhesion uterus to bowl, also RHS cyst 16 mm endometrioma. I probably have more adhesions from the laparotomy; unfortunately they had to make a big cut 17 cm.
Has anyone had severe endo & not gone ahead with the lap/been in a similar situation? What were the outcomes? Did you fall pregnant, issues/what happened down the track? Did you have the lap & glad you did?
My gyne says if I don't have the op the endo will 'just keep getting worse' & very little chance of conceiving. I'm worried about having more surgery & whether the benefits outweigh the risks at my age eg 'shaving the endo off my bowel', general likelihood of recurring (?more surgery) & potential impacts when you operate on an ovary (apparently 30 % chance of forming an adhesion that contributes to ongoing infertility). I guess on the flip side it works for some people & they can have a look at tubes etc while in there.
I am keen to conceive if possible & wondering about just having the fibroid done. The thought of another recovery period and more cuts from lap leaves me a bit cold, but perhaps its something I should do. I haven't even felt like trying to make a baby since the last op & just starting to feel well enough now.
Sorry for the long post & thanks for reading-I'd dearly like to hear from you, advice welcome! Many many thanks
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10-09-2013 20:25 #1Junior Member
- Join Date
- Sep 2013
To laparoscopy or not not to laparoscopy - severe endometriosis
Last edited by Seagreen; 11-09-2013 at 15:25.
10-09-2013 21:45 #2
I had a fibroid cyst, and mild endo ... lots of trouble conceiving.
I did have the lap to remove the cyst, and they said the endo was worse than they had preivously thought. Was removed though my FS said my chances of conceiving naturally were extremely low. I was put on the list for IVF, but did 3 months of ovulation tracking while I waited.
I fell pregnant in the 3rd month of O tracking
Trying for a second bub I had another lap ... but no such luck.
Still - I dont see any benefit at all in not having it done. Even if you need fertility treatment after to fall pregnant, I dont think they will do that (IVF etc) unless you have the fibroid removed and endo treated.
11-09-2013 09:32 #3Junior Member
- Join Date
- Sep 2013
Great to hear from you, thanks for posting so quickly!
It's good to hear about your experience and sounds as though you thought the lap was worthwhile both times. Did it take long to recover, to feel normal again? I've heard it can take a few months if they do a lot of work in there. Had the endo come back again in the second op?
Yes the IVF gyne suggested no IVF unless both procedures done but even then thought the chances very low & could stimulate the endo.
Wishing you the best of luck for a second bub thanks again, I really appreciate your response
18-09-2013 19:53 #4Senior Member
- Join Date
- Jun 2010
Hi Seagreen, I had a lap in 2010 to remove moderate endo - it was about a 4 hour operation & took around 6-8 weeks recovery for me (I have a few other health issues & recover slowly). I found it very worthwhile as I was in a lot of pain from the endo beforehand & had very little pain afterwards, sadly I haven't had luck in pregnancy terms but that may be from other factors. I've since done 5 ivf cycles & the endo is back so i'm having another lap in December. This one is a little different though - when I had my pre-op consultation the surgeon told me he would remove what was 'easy' to get and anything risky he wouldn't touch (last time I had endo in pouch of douglas & close to bowel). If there was anything left in the risky category then I was told I could have further surgery (yay!) or look at hormone treatments like Zoladex. Could that be something you could discuss with your specialist if you are really worried about the risks? Maybe they could minimise the risks by combining the surgery with hormone treatments? It is a tricky decision to make & I totally sympathise with you on your feelings about another recovery Good luck!
18-09-2013 20:37 #5
sorry - I missed this reply
The op didnt take that long for me .. was about 2 hrs I think. Recovery for me took about a two weeks I think (though the first week was pretty painful)
Yes the endo had returned by the second op, but not very bad (and was nearly 2 years and 1 baby later)
I have stopped TTC though ... so no more babies. I have other health issues that complicate things so not possible.
I am not sure why or how IVF would stimulate the endo ... but even if it did, the surgery would clear a fair bit so you would still be better off.
Anyway - best of luck with whatever you do
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