Hi Ladies
I was diagnosed with Adenomyosis back in June, and wondering what the general feeling on whether this affects fertility is.
The senior registrar at my NHS Gynae clinic who diagnosed it said that its not usually considered a cause of infertility, but other reports I have read since suggests it could be.
Can anyone share their experiences?
Thank you 😘
Hi,
I'm in the same situation. I think it depends on the extent of it. Two different doctors have said mine isn't bad enough to impact anything and a different two doctors recommended down regulation prior to egg collection for 2 months. Did they give you an indication of how bad yours is?
X
Hi
Thanks for your reply
The registrar said she didn't think it would affect my fertility, so im thinking possibly she didn't think it was too bad. I was too taken a back at the diagnosis to ask anymore, so will defo push for more info.
I have a 2nd appt with the fertility clinic in 4 weeks - My partner has a low sperm count and I've never been pregnant so not sure if the issue is with implantation on my side or his low sperm count :/
Will defo be asking about down regulation, thank you xx
My last doctor told me i need Uterine PRP to help with adenomyosis, but that was in North Cyprus, i don't know anyone over here who does it and I think it is more hypothesis than anything else. Interesting to hear other responses. I've never been pregnant, but have no idea what the cause of my infertility is.
hi, I have Adeno and had uterine PRP with my last transfer. It did work and I did get pregnant but miscarried at 9w. I do believe it helped with the implantation though.
I'm really sorry to hear that and hope you're ok. It's so hard to know what to do. I'd be interested to know more about where you did the prp. Ive been told you should have it a couple of months prior to transfer andI've also been told you can have it a couple of days before.
thanks Hopecontinues . It’s a bit rough going at the moment. I’m following expectant management although I’m being reviewed on Monday to see if I need intervention to move the miscarriage along.
The PRP I had done at my IVF clinic in Spain. Happy to PM you details if you would like? I had it done 48 hours before transfer. Apparently they don’t want any less time that that as they don’t want free liquid in there before transfer.
I didn't realise you were going through it now. My heart goes out to you, I hope you have some amazing people around you to support you.
If you could pm me the details, I'd be grateful 🙏
Let's hope it wasn't down to adenomyosis, although I don't suppose there is any way for them to tell.
Stay strong
X
I'm so sorry to hear this xxx
Thank you x
Oh I am so sorry to hear this. It's awful and my heart and thoughts go out to you at this time. It is so hard to navigate. I hope the review will give you some information that will assist you moving forward. Please be kind and take time to process and grieve for your loss. xx
I want to see if my clinic in South Africa have this and will look into it but not many places offer it. I am glad to hear you think it helped.
Hi, I have been reading a lot around the subject lately as I’ve also been diagnosed this year.
Unfortunately everything I read hasn’t been positive. Until recently the only way to diagnose Adenomyoisis was through hysterectomy so there is no historical data for researchers to look at. Only now are they diagnosing via US and MRI.
The old school of thought was that if the Adenomyoisis isn’t protruding into the endometrium it shouldn’t interfere with fertility.
However recent research is linking Adenomyoisis to recurrent implantation failure, early miscarriages, second trimester miscarriage, low foetal birth weight, pre-term labour, pre-eclampsia etc (from what I can gather all linked to endometrial receptivity and blood supply).
Personally I am struggling with early miscarriage. I’ve lost two this year both at around the 6-7 weeks in terms of size (after having seen a strong heartbeats) but between 8 and 10 weeks in term of gestation. I do have autoimmune issues so it’s difficult to know if that’s causing an issue rather than the Adenomyoisis. I am on a huge immune protocol and my gut is telling me it’s not that.
From what I understand, the embryo goes through two stages of implantation. The first stage into the endometrium during the TWW resulting in the BFP and the second around week 6-7 when it goes through the myometrium to access the mothers blood vessels to create a good blood supply to sustain the pregnancy. I think that’s where things are going wrong for me.
I have diffuse Adenomyoisis and a consultant online described that as a layer of concrete below the endometrium. She said that the embryos have a tough job to break through it and I don’t think the embryos are managing in my case and then they stop developing and growing and I lose the heartbeat.
I could be wrong….I really hope I am.
There are treatment options. Usually it involves downregulating for at least 3 months to shrink the Adenomyoisis before going into a round. The Adenomyoisis will grow back as soon as you start taking oestrogen, which is why there are issues that then develop later in pregnancy.
Sending you lots of love and luck on your journey. X
Hi
Thanks for such a lot of detail, thats really insightful
I will definitely be asking about down regulation at my next appt in 4 weeks . My AMH levels recently came back as low, so I'm keen to start egg collection process ASAP so at least the eggs are as young as possible, and then if I need the extra treatment then I will have time. No idea if that's how it will work in reality, but at least I feel a bit more armed with info to ask questions!
Really appreciate all of your info tho, and wishing you all the best in your journey xx
Hi,
I am 41 and been on this journey for an awfully long time however I was only diagnosed with Adenomyosis late into my fertility journey (which I feel so sorry about as I can't help to think about all the good embryos I may have lost along the way due to this condition) but I try not to focus on that too much. I have had multiple implantation failures and when fortunate enough to fall pregnant naturally (last was in 2016) I suffer miscarriages at 8 - 10 weeks. I have had multiple rounds of IVF/ICSI which have resulted in either BFN or chemicals. I do have other issues that are now impacting my fertility journey low AMH, diminished ovarian reserve.
My last round was in April and I was on Zoladex for 6 months prior to suppress the adeno, from the MRI/US results following the 6 months suppression it had significantly reduced so went for 1 FET = BFN and 1 fresh transfer = chemical so to be honest I have no idea whether the suppression made a huge difference or not. I have been on a break since as it was possibly my 8th (I have honestly lost count and I doubt that's because I don't care but more to block out the trauma) round and mentally I have been exhausted by the process.
The zoldex suppression (chemical menopause) was the worse thing I have ever had to go through and honestly I just don't think I could go through it again. I felt like it physically and mentally aged me in every possible way imaginable (but that was my personal experience). I have since been to 2 other clinics for 2nd opinions, I have been taking serrapeptase (systemic enzyme) which is meant to reduce scar tissue and dead tissue in your body and very good for those with auto-inflammatory conditions such as adeno. I have to say it has made a difference to my symptoms, my periods have changed hugely for the better. I have always suffered with severe period and back pain. So I will continue with that, as recommended by my naturopath. I feel like time is not on my side at 41 but after the last chemical I just felt soo TIRED (only way I can describe it) I just needed to stop regardless of that ticking time bomb.
I am feeling a little bit more settled now I have had some time and some other opinions, so will embark on a 3 cycle egg collection and then go into a very short suppression period before any attempts of transfer (if I get any embryos to transfer).
I do wish you well on your journey and if you never end to reach out please do 💜
Hi
Thanks so much for coming back to me, and im sorry your journey has been so hard!
My diagnosis was only by chance - as part of my fertility bloods one of my results showed something odd which meant I was sent for a scan for ovarian cancer. It was all a false alarm in the end but she had a check over everything else and found the Adenomyosis. It had been missed on a previous scan, and from what I have read im lucky that I got the diagnosis pretty quickly into my journey, I'm sorry that this wasn't the case for you.
Im right at the beginning of my IVF journey, so feel like I have a mountain to climb but your info is really helpful. Ill defo refer back to it when im at my next appt. Ive never been pregnant and my partner has low sperm count so no idea how hard its going to be for me.
Wishing you all the best too, and I will absolutely reach out for more advice after my next stage xx
wow slinky00 i recognise so much of your history in mine! Really interesting to hear your experience on down reg. Did they give you and options on drugs? Thanks for the tip on serrapeptase!
hi sazzle2680 I'm sorry to hear you're journey hasn't been easy either. I didn't really get much of option on down reg except initially I was only meant to be suppressed for 3 months but it ended up being 6! Going forward I've decided to down reg differently and for shorter period of time.
hi. I was diagnosed finally with adenomyosis. Consultant told me that despite my awful symptoms, if I got pregnant that would solve them all! Effectively the actual condition doesn’t affect fertility. And for example I’m on progesterone now to stop periods and the symptoms are 100 times better. He said to get pregnant I’d come off the progesterone pill, get pregnant and then my periods would stop again and I’d be fine. Then after north I’d go back on pill to relieve again. I hope that helps. He seemed more concerned about my age as I’m in 40s! Not the womb.
Oh that's great to hear, thank you for sharing!
I have asked a couple of times at follow up appts if they think it's going to affect my IVF journey and they say pretty much the same - I'll be put on a protocol based on having it so shouldn't be worried. Maybe I've just got myself into a Google worm hole and am overthinking everything.
Also to add for anyone else reading this thread, I have lost a bit of weight recently (to qualify for IVF) and my symptoms have improved. Not sure if related but thought I'd share anyway x
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