Adenomyosis and pregnancy...?: I had my 3rd... - Endometriosis UK

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Adenomyosis and pregnancy...?

caf123
caf123
10 Replies

I had my 3rd lap in 4 months last week (the first was not with a specialist endo consultant, the second and third were). The most recent consultant did radical excision of (early not late stage) endometriosis from just about everywhere, plus removed some from my ovaries. He also said in both the diagnostic lap and the treatment one that my uterus was bulky (8cm thick) which was indicative of adenomyosis. Waiting with baited breath to see whether the pain is reduced by removal of endo, or whether it is the adeno causing the pain...

We've been trying to conceive for a while with no joy. I just wondered whether people could share some stories with me of being able to conceive in spite of adenomyosis? I'm conscious there is no treatment except a hysterectomy, and should the pain persist in such a way that it profoundly impacts my life as it has been then this may a route I need to consider. Not thinking about that now though... will finish healing first.

We've had fertility tests that have all come back normal, so seems the endo/adeno is likely to be the reason we are struggling to conceive. Subject to the pain being bearable after this most recent surgery we have some options still remaining - try for a little longer and then look into IVF I think. I've just worried myself a little (a lot!) googling adeno and conceiving and all of the things that can go wrong.

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Hi caf123, I'm sorry to hear all that you are going through. It can be a tough time, as I have suffered with stage 4 endo and adenomyosis since 1996. I am 41, childless and totally devastated that I am now booked in for full hysterectomy, with cervix removal and part bowel removal on 7th Jan 2014. I had been hoping to try with IVF when I went to the clinic back on 11th Nov, however, due to having too many ablations my womb was deemed to thin to carry a child. My advice for you would be to try the IVF route asap, and not to have too many ablation surgeries before hand, this may give you a good chance of being able to carry a child/children. I wish well and hope you will keep in touch to let me know how you get on. xx

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Parksie7

Hi

I wa told in early 2009 that I most likely had adenomyosis as well as the previously diagnosed endo. I tried the mernia coil which I hated - I was a crazy lady when using this - it was removed in April 2009 and I was pg with my DD just over a month later :-)

We had years of trying before conceiving our DS, so conceiving this quickly was actually quite a shock as we we trying in hope rather than expectation. So yes, you can get pg if you have adenomyosis. I had no complications and I was on the 'wrong side' of 40 when she was born.

Good luck!

Lx

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Music1
Music1
in reply to Parksie7

Hi Parksie7

Sorry to 'gate crash' the conversation. Am so pleased to hear something positive and know that it is still possible to have a child with no complications. Assuming that's what you meant.

I am fast approaching 42 and have had 3 failed IVF attempts due to stage 4 endo, damaged tubes which were removed and cysts which damaged my ovaries further with surgery. We are considering a 'final' attempt at IVF, but I was also worried about my endo, pain every month and a 9cm adenomyosis which is a bulky inverted uterus. The clinic just said "we're not sure what difference it would make, or whether you'd carry a baby full term if you were successful. Maybe you should give up". We were destroyed. Hope I've read your reply correctly. Maybe there's hope for caf123 and I after all.

Many thanks

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Parksie7
Parksie7
in reply to Music1

Hi

This is an old post, but as I said, I was told that I most likely had adenomyosis - as far as I know, it isn't diagnosed for sure unless you have a hysterectomy.

I have a long history of endometriosis - ovarian cysts, tube removal, ovary removal and the Adenomyosis 'diagnosis' - and I have two kids. Both born when I was in my late 30s and early 40s, so it is possible. I also had IVF which failed but have been extremely blessed by having two natural pregnancies.

It can happen. Take care and best of luck. Do PM me, if you would like to chat or want any more info on my situation.

Lx

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Music1
Music1
in reply to Parksie7

Thanks Parksie,

That's such good news - you're extremely blessed. I am so pleased for you.

Sorry, I am fairly new to this site. I didn't notice the post was old, but I guess in a way it's better to hear an outcome and so good to hear you've had success. Thank you so much for writing back. We've been in 2 minds about whether to try again with what seems like everything against us. Thank you for your kind words and best wishes. x

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Music1

Hi Caf123

Please can you let me know how you get on. I'm fairly new to this site. However, I also have stage 4 endo, had cysts removed from both ovaries, both tubes removed and to top the lot they said I had a bulky inverted uterus. I am nearly 42 now, but I had 3 failed attempts at IVF last year - they said my egg quality at my age was so poor. We were thinking of having another go, but then they mentioned my inverted uterus and said the adenomyosis was fixed to my bowel. I do get a lot of pain, but I think personally that's the endo growing back. I had some of it removed over a year ago. I have heard of others getting pregnant with adeno. My advise would be to start ivf asap. although I don't know how old you are. You are so lucky there is no other reason why it's not working for you. If you started ivf or at least went for a test, they could tell you whether it's your egg quality and maybe give suggestions on how to improve this. I left this all far to late thinking ... women have children much later now. I'm sure I'll be fine. Wishing you every success and pain free days ahead x

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caf123

Hi all, just saw replies to my post and wondered what I had posted!! Well, I have a 20 month old daughter now - she was conceived the month after my big surgery so something was certainly a success there... They moved my retroverted uterus in that surgery too as well as endo removal, but obviously no treatment for adenomyosis. I hope this helps as some positive news for those still ttc xx

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Mari123
Mari123
in reply to caf123

Congratulations with having a daughter! I hope you don't mind sharing how are you feeling these days? Is pain the same after giving birth? Did Adenomyosis subside?

I have problems walking to and back from work, so wondering how I would be able to take care of a child if I were were able to give birth...Trying to evaluate risks and consequences. Thank you!

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caf123
caf123
in reply to Mari123

Hello, I've had minimal no pain since my big surgery/pregnancy... I'm obviously not sure which of these helped but for now all is good. No luck conceiving number 2 but very grateful for number 1 x

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Mari123

Amazing! This is a positive story that gives hope.

And how was the pregnancy itself? Lots of pain in the last months? Did you have the C-section?

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