Endometriosis UK
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IVF with endometriosis and PAIN!

Hey ladies

I'm doing my second fresh round of IVF (1st was back in 2012 where I was diagnosed with endo) I've had 1 natural chemical pregnancy and 3 chemical pregnancies from frozen cycles over the past few years. So to say I'm not very hopeful this will work is an understatement.

So we are doing long protocol. I've already done just over two weeks of down regulation and started the stimms two days ago.

This is incredibly hard due to pain. I had surgery 4 months ago and still have daily pain with my endo. (And got bloody endo cysts back already!) After starting this cycle I developed constant chronic back and pelvic pain.... Due to my age and risk of further surgery damaging my ovaries more, we decided to just go for it and hoped the down reg drugs would help settle the pains! (Nope!)

Not even sure if I will make it to egg collection as terrified the pain is going to get too much as my ovaries get overloaded with follicles and eggs! But gritting my teeth to get through and being determined to not let the pain or endo win.

Anyone else having a really rough time with pain? I'm allowed codeine, for now, though it's really not ideal. No idea if I actually get pregnant how I would cope with this level or more of pain!

Any success stories would be welcome ladies xx

3 Replies

The pain you are experiencing may be from adhesions and/or nerve damage and down regulation with GnRH agonists won't help with this. Your diagnostic lap was a long time ago in terms of progression. This sort of involvement can give rise to an extremely painful pregnancy.

I have a Facebook support group and we have two members experiencing very painful pregnancies with endo. Perhaps you would like to join and get the benefit of their experience.


Thanks for the reply. I was also thinking adhesions may be a culprit (I had extensive adhesions removed during surgery, and know surgery will have no doubt have caused more to form) I also realise that adhesions could cause extensive pain during pregnancy. I will certainly check out your Facebook group as would be good to talk to others in a similar situation.

The gnrh agonists have actually done me a favour, as it appears the cysts have all slightly shrunk! However overall the drugs used with IVF have and will aggreviate my endo symptoms, I'm fully aware of this having done one cycle with endometriomas and endo before.

My last surgery was done to remove multiple endometriomas off my ovaries, recto vaginal disease and other endometriosis deposits. Unfortunately not all endo was removed (unclear wether this was to preserve ovaries and fertility or if the surgeon just could not remove it due to skill level), and instead of my pain being less, it's now more. I will be looking at be reffered to another specialist as soon as this cycle is done (depending on outcome) I'm not convinced my surgeon has done the best job and have requested medical records and surgery notes to get a 'second opinion'.

I'm fully aware of the bsge endometriosis centers and already researched into my options of centers and consultants, so know my next step (GP has already agreed to support and help me to be reffered to where I want)

Thanks again.


Hello, I really hope the pain will soon start to settle for you and that everything goes well with this cycle. You are doing really well keeping yourself going despite the pain levels.

I can relate, start IVF number 2 long protocol next Friday with nasal sprays to begin with...feeling very nervous. I share a lot of your worries. Had endo removed last November and stage 4 diagnosis, it's growing back again. I'm in a really similar situation with age and risk of further surgery etc. Been feeling rough the last couple of weeks with lots of migraines and head spinning with how ivf will go with work, feeling yuk, pain levels etc.

I'm on the Facebook support group now too Lindle, it's a really massive help, thank you so much for setting this up. Will pop over later today.

Wishing you all the best X X X X


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