Post-lap / Shutting down ovaries / IVF - Endometriosis UK

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Post-lap / Shutting down ovaries / IVF

S-Joys profile image
13 Replies

Hoping someone can advise:

Had my first laparoscopy (with excision) just under two weeks ago for Stage 4 endo when I was advised the next course of action on our fertility journey will be IVF as the fallopian tube dye test (not sure of the medical name) was inconclusive. Couldn't get the dye to run through either but was unsure if this was due to spasms caused by the surgery or whether they are blocked. Nevertheless, the surgeon advised while he removed three chocolate cysts, cut away endo on my bowel and a few other places and freed both ovaries from behind the uterus, IVF would be the best step. However, he has suggested shutting down my ovaries over the next few months while we are put on the waitlist for IVF (current NHS time is 9 months where we live and our next fertility appt isn't until October so would be looking to shut down my ovaries for up to a year).

Just wondering what drugs they might use to shut down the ovaries and whether this really is the best course of action? My husband and I (possibly naively) still want to try naturally while waiting for IVF treatment with the small hope we may be able to conceive. We know it's a long shot but neither of us like the idea of shutting down my ovaries.

Any advice / experience or direction would be much appreciated.

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13 Replies
Neef profile image
Neef

Hi snap I was told the exact same .devastated.

He means the injection different names for it. I had it after my last lap I have to say I found it brilliant.I had no pain and was able to return to college and finish my course.

it gets a lot of bad press but I found it really helped me.

Best of luck with everything.xx

S-Joys profile image
S-Joys in reply to Neef

Thanks for your reply. Does the injection prevent the endo growing back / progressing? What are the benefits of shutting down the ovaries? I don't suffer from much endo pain, main symptom is the infertility which is why I've been wary to take drugs etc and yes, I know what you mean about the bad press. I have read so much about side effects to various injections and drugs that it is often overwhelming and confusing to say the least.

Thank you again for your response and glad you found something which works for you xx

Neef profile image
Neef in reply to S-Joys

You can only take it for 6.month's unfortunately that was2 year's ago.I'm still in a lot of pain.but ttc was a big factor for me.

I'm not sure if it stops ot from growing. It stops your periods anyway.

side effects were no big deal I'd take hot flashes over pain.

I'm not sure why he wants you on them if it's not for pain tbh.

xx

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to Neef

I'd imagine it would be that he wants to stop the endo continuing to grow and undoing all his hard work removing it, which could then make fertility more of an issue.

Any chance you could fund a private round of ivf so you could do it more quickly?

CLN1986 profile image
CLN1986

Hi. Just jumping in on this post. I should be going for surgery to excise stage 4 endo and then will hopefully be put on the IVF waiting list. So am interested to find out why they want to shut your ovaries down? We was told that we could still TTC naturally whilst waiting for the IVF appointments. When is your next appointment? Maybe it's worth taking a list of questions with you...

S-Joys profile image
S-Joys in reply to CLN1986

I was under the same impression. It was the surgeon who suggested shutting down the ovaries and told us pick up a prescription next week after seeing fertility doctor as we were supposed to be going to see fertility doctor next Wednesday but we got a call yesterday to cancel this until October 3rd, which is frustrating as feel I have so many questions unanswered and conflicting advice.

CLN1986 profile image
CLN1986 in reply to S-Joys

So he wants you to start this medication before talking it through with your fertility doctor? Sooooo annoying that they've rearranged your appointment. It's so frustrating the amount of time you have to wait between appointments. Novmeber is when I'll be seeing the endo specialist. Keep us posted.

Maybe delay starting the medication until after your next period, one more cycle of trying naturally isn't going to hurt...is it?

RoseTM profile image
RoseTM

I'm not sure what is best for your situation but I've heard serrapeptase is good for endo, blocked tubes, and scar tissue. I've started taking thismyself. Maybe it's worth you researching...

AnnieMac123 profile image
AnnieMac123

Hi I had my first lap last week...stage 3endo found..and 1blocked tube...being put on prostap injections for 3mts only..as doc says endo likely to grown back within 6mts...she said ideally I should b on injections for 6mts but time is kinda against me...from what she's told me...I don't think it stops endo but stops ur periods to allow your ovaries to heal after all work she has done on them..in turn this poss slows down the endo growth...same as you I had no pain what so ever...niggling back pain over last few months but put that down to damage I done at gym...but my ovaries very almost fused together. N both had large chocolate cysts...been told I should have been in agony so know am lucky..my only symptom was mts and mts of horrible brown discharge when I came off pill... Sister and mum both have endo so I knew enough to get checked... I live in Ireland so the whole ivf thing isnt funded by health service...its about 10grand...i will never be able to afford that..my chances of natural conception is slim with only one working tube and have heart shaped womb which can cause it's own problems with premature births.i personally would grab the chance of ivf..

..they have said that sometimes the tube is flushed out after dye test...so there is a little bit of hope there but ectopic pregnancy also a high factor...my advice would b take your injections give ur body that chance to heal so that when ivf comes along ur giving ur baby the best chance to stay safe by having allowed ur womb time to heal....I know it's not easy to give up on the dream of a natural conception...but you hear amazing stories of people who had had there own kids naturally after ivf...wee bit of help now may get you the family have dreamed off...

S-Joys profile image
S-Joys in reply to AnnieMac123

Thank you for sharing your experiences and your advice. I wish you the best for your continued journey x

sinead27 profile image
sinead27

Hi I am on decapeptly(sorry spellings) its stopthe u having a period and u overies will not work therefore no.new lesions and it will be easier to conceive.they only leave u on it 1 yr max cos side effects.they also put u on them some times before lap

CLN1986 profile image
CLN1986

Maybe I'm being naive, but surely if the medication stops your ovaries working and stops you having a period, how will you be able to conceive naturally? Sorry if that's a really silly question...

S-Joys profile image
S-Joys

Thanks for all your advice. I read that endo can continue to grow after menopause and that a hysterectomy is never the answer as endo creates / grows it's own oestogen. If true, then why would stopping your periods and ovaries help slow down endo growth? If anyone has any articles / advice that might help me understand this more, I'd really appreciate some direction. I was planning on asking my doctor at this week's appointment but as that has now been postponed (by them) for another month, I'm getting quite frustrated. Thank you all once again xx

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