IVF with endo/adenomyosis

I am starting IVF in January. I have adenomyosis and a stage 4 rve endometrioma (in a place that would likely mean resectioning the bowel to remove it, so lap consultant said to leave it for as long as possible if my symptoms are bearable, and until after I've had children). I would like to know if anyone else has these conditions and can share any insights or tips? I get a lot of burning and stabbing sensations, lots of IBS type symptoms and so much spotting (I'm not sure how I'm going to work out 'day 1' of my cycle for IVF!) I would also like to know if anyone with either endometriosis or adenomyosis has been through IVF and their experiences? I'm not worried about the pain, I just want to know what's normal/what to expect, and if it is likely to make the endo worse afterwards? So little seems to be known but my consultant has very much a 'just get on with it' attitude and laughed at me when I said is there anything I can do in terms of diet etc? (I already avoid alcohol, gluten and caffeine as they all upset me, but other than a conception multivitamin I don't take anything). Any success stories of conceiving with either condition would also be fantastic to hear right now. Thank you xx

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  • Hi I have the same as you! I have had two surgeries this year! Both my tubes blocked now only have one left. Just in the middle of IVF too! my cycle was suppressed so didn't have to work out when day one is so don't worry about it. I was advised to have surgery on my bowel before but guess every one is different. If you have bad symptoms then maybe surgery is best. IVF really takes it out of you emotionally but the good side no symptoms of endo 😃 Xx

  • Thank you, I hadn't realised endo symptoms might die down in IVF! Wishing you all the very best for your IVF xx

  • Thank you take care xx

  • Hello, Sorry to hear you are in a lot of pain - it really gets to me sometimes.

    I have similar endometriosis to you - I had a lap in Sept to prepare for ivf jan/feb (endo lasered and endometriomas drained). Theres still some around bowel but that may be removed after ivf. I have also been on zoladex since until ivf to supress it coming back.

    I have only had one doctor suggest alt therapies such as reflexology and acupuncture. From lots of reading this is what I take - q 10, omega 3, vit d, plus conception multi vit, and just heard of serrapeptase. Also castor oil packs are soothing and should help the endo. I will also have reflexology in lead in and during ivf - notwithstanding benefits it also helps to speak to someone outside family.

    Like you trying to be good on my diet - sugar, caffeine are the worst for me.

    Difficult to think positive when you feel like crap but it does help. All the best.

  • Thanks so much, lots of new things for me to explore there. I've just ordered gelatinised maca and rhodiola which I've heard can help in some ways, but am being cautious as I know even herbal stuff can sometimes worsen symptoms. I've just recently cut out processed sugar too- it has been so hard as it felt like my one remaining treat, but I've reached the stage now where I just want to do everything and anything on the off chance it helps! I tried acupuncture for a few months but it was so expensive and there wasn't an opportunity to chat with the therapist, but reading your post and some others has inspired me to try reflexology. Castor oil packs sound interesting too. Thanks again and good luck for your IVF xx

  • Hello, Just wanted to ask do you have to come off the zoladex before you start ivf treatment and wait the 12 weeks for it to get out of your system? Or will they use it as part of the down reg process of IVF?

    I'm in a similar situation, just had surgery for the 3rd time was on zoladex for ten months prior and they want me to go back on zoladex as apparently I'm not even on the ivf waiting list so very confused and distressed right now not knowing what to do.

  • Sorry to hear that- I would speak to your hospital team or doctor. I was only diagnosed as having endometriosis recently, having been misdiagnosed as IBS and other issues for many years, so I have not had zoladex. Maybe post as a general question as others may have this experience. X

  • Hi,

    I'm the same. I had surgery in September to clip both my tubes as they were both blocked and swollen but due to the swelling he ended up removing part of both, which I'm told will really help our chances (the fluid won't affect implantation- this was halting our chances before)

    I'm now starting the down regulated moth before my frozen transfer. I did two rounds of collection before my surgery.

    I've had three goes on the NHS and this is my first private, the NHS ones were never going to work.

    The first period after a cycle was very painful but then went back to the normal painful level after that.

    Bob x

  • Hiya, thanks for your reply, sounds like the clipping will really boost your chances - am wishing you all the best! I've had contradictory info about my tubes- firstly that the left one was blocked (which matched my perception as have bad stabbing pains where I imagine a left tube to be!), the.pn consultant said he had cleared it in the lap, giving me hope that my chances would improve, but then when I saw the same consultant again he said he didn't see anything he could remove in my tubes. Apparently, it's extremely rare to have such bad endo elsewhere but not the tubes. I have wondered if I should look at egg collection if it's my womb that's the issue, but I'm not sure if they collect eggs at my age, plus can't really get my head around surrogacy right now. One thing at a time eh! Wishing you all the best of luck xx

  • Thank you.

    I'm always getting told different things by different people. My womb is pretty much the only thing that is ok, I've got a large cyst on each ovary (which are also kissing - so collection is a challenge) I've had them drained twice this year already

    They've mentioned egg donor but I'm not ready to think about that.

    I also get the stabbing pain in my left side, I asked my consultant if it was the blocked tube and he said it was just the endometriosis, sadly it seems he was right as I still get the pain.

    Bob x