Adenomyosis & IVF - a bloke in need of understanding and reading good news

[Matt_p]

Hi Guys,Unusual for a fella to get on here and post but I have been a reader, researcher, hoper, any one else in the same boat-er as us for a few years now.

I'd love to hear from any of you who have walked a similar road to my wife (38yrs) and I (43yrs)

After having 3 miscarriages, we were recommended to see a Mr Shehata by friends who apparently is a fertility guru. Wife was diagnosed with high natural killers cells and given a course.of treatments and infusions over a 6 month period. During this we did not conceive at all. He recommended IVF. I was not best pleased with his bed side manner to be honest and opted for a other specialist.

Care fertility was recommended and we completed 2 rounds of IVF. The 1st produced 3 eggs at blastocyst stage but on the PGAT test only 1x viable, 1x mosaic and 1x inadequate ( can't think of the word sorry)

We used the viable egg which resulted in a very early miscarriage. We went again but this time produced no viable eggs after PGAT testing. This was January 2023.

We decided to take a step away from treatment and enjoy life again after 4 years and try naturally again....All of our treatment has been privately funded and we are sat at around 40k at the moment.

Since January, NHS completed the only test we have not paid for or advised to take by CARE which was a laparoscopy. This proved my wife has 'advanced' adenomyosis. We were told by specialist the natural birth would be 10% and IVF route would be 20%.

Both devasted the prospect of a future without kids. But more so the pain my wife is in monthly with this adenomyosis is terrible with no cure other than birth control or a hysterectomy. Before considering this, I want to reach out to as many people as possible to see what our chances are of one more crack of the whip of IVF.

Are any of you in a similar position to us? Is anyone aware of any specialist clinics for adenomyosis? Anyone had success?.I hope you have. Both of us have been on the edge,.I think I've actually gone ofer it and lost my marbles once or twice to be honest but keep putting on the brave face,.trying to be ok with no having kids but really, I'm hurting big time. Everyone seems to think it's the girls who struggle but I can assure you , I'm devastated.

Reaching out for any hope out there and I'm sorry this is a long one. There's lots I've no doubt missed out too.

Thankyou

[CardiGrey]

Whilst I don’t have experience with adenomyosis, you’ll find that a lot of people on this forum are experiencing the same feelings as you and your wife. Many of us are unsure of whether we will be become parents and we have to carry the grief, anger, pain and upset that that comes with each day. It’s very a difficult journey for both partners. However, what you will also find on this forum are a lot of success stories where people who have the odds against them have come out the other side of this battle. Have you and your wife had any counselling? It may support you in the short term to discuss your feelings around not having a child at the moment and the grief for your babies that you have lost. Early miscarriages do matter. I had one and it does really affect you. Other than that, you can do a search for “adenomyosis fertility specialists” online and see what you find. I wish you both the best.

[Matt_p in reply to CardiGrey]

Hi Cardi, thanks for your reply. I've had all the above! Emotions comes in waves and its a rollercoaster, sometimes I'm ok with it and other times im gutted beyond beleif with the thought of it. Nothing helps tbh although verbalising and talking about it does for me. Google search isn't great re specialists which is why I'm trying to find people in similar circs on here I guess. Thanks

[Anxiousintrovert]

I’d just like to say I have tremendous respect for men who also do their research and who are not afraid to show their vulnerability on forums dominated by females. Just wanted to wish you and your wife the best of luck in your journey.

Was your wife offered birth control for a couple of months before transfer to calm down the adenomyosis? I heard that’s most beneficial route.

[Matt_p in reply to Anxiousintrovert]

Hi Anxious, at the time of both implantations we were totally unaware she had adeno...the clinic did not pick up on it on our scans and.NHS specialist said it would have been extremely obvious to them and they believe it to have come on very quickly - certainly after our IVF journey. I will certainly bare this in mind if we do indeed decide to have one last throw of the dice. Thankyou

[Lamagarden]

Hello, no positive story yet I’m afraid but I do have adenomyosis and have been on the IVF roller coaster for too long - I want to get off! Just about to start my 8th (!) and last round of IVF, it’s been an incredibly painful journey.

For the monthly pain of adenomyosis I take methanamic acid (for pain) and traxanamic acid (to reduce flow) and sometimes add Co-codomol. It helps and the pain is much more under control than it used to be.

Sorry not to be more helpful but wishing you and your wife all the best.

[Matt_p in reply to Lamagarden]

Hi Lama, I wish you everything for your 8th round, I really hope you have positive news. With regards to the methanimic acid and traxanimic I will pass this on as she is in agony, last month and just today she has been having contractions due to the adeno. GP hasn't suggested anything other than the coil and a hysterectomy in the future but we are seeing a gynae soon to discuss this adeno. Your info is really helpful. Thankyou and I hope this round is the one for you

[Chel91]

Hi, I'm sorry if this is a bit jumbled but there was a lot to your post that I will try and address.

First of all, just to confirm that the NHS did the laparoscopy surgery? Was this at a specialist endo center? Did they see or remove any endometriosis? The reason I ask is because (in my opinion) NHS gynae surgeons who are not specialists often miss endometriosis, which is removable, and just over diagnose adenomyosis, which is not generally removable. This is a very common kind of cop out / lack of skill that is pervasive in the NHS in my opinion. Endometriosis and adenomyosis often go hand in hand.

When did your wife's pelvic pain or period pain begin?

For best success with Adeno with IVF, it would be to do a FET with 3+ months of downregulation with medications to induce a "menopause" like state. Not just birth control. Sometimes this would be something like Prostap, or similar. Or also identifying endometriosis and getting that removed by a specialist if needed.

I'd recommend banking embryos asap so you can go back after that and focus on getting a successful transfer.

Also, I take it you have not transferred the mosaic? I'm not sure if you are aware that these are transferable and generally have nearly as high success rates as "euploid" embryos.

And yes, I have had success with endometriosis + (suspected) adeno + high NK cells + a mosaic embryo transfer that resulted in identical twins.

Additionally, I do see someone recommended Mefenamic acid. This can affect fertility and I wouldn't recommend for someone ttc asap, so I would just be careful what you choose to use right now.

[Norregirl in reply to Chel91]

Hi chel91, I have adeno + endo and have done 3 mos of zoladex. I have one more 3 day embryo left. Can you tell me what you might recommend for a transfer protocol? I'm thinking prednisone and baby aspirin?

Also, I stopped the zoladex at 3 months not sure to do a 4th.

[Chel91 in reply to Norregirl]

When did you stop the zoladex? When will you start the estradiol? You should be making sure there is not a gap or a period if that makes sense.

I personally saw a RI for full testing / treatment, plus had the surgery for endometriosis. But I know that can be a lot xx

[Norregirl in reply to Chel91]

I had my last injection about 5 weeks ago. Should I ask my clinic about going on estrogen?

[Chel91 in reply to Norregirl]

Was it a 4 week injection or how long does it last? I meant for best efficacy to start the FET (which usually requires taking estradiol) asap is generally what would be advised xx

[Norregirl in reply to Chel91]

I see...it was a 4 week injection and they just told me to let them know when I get my period again. And I understand that it nay take a while for it to return...

[Chel91 in reply to Norregirl]

Just FYI, you aren't supposed to let your period return as that defeats the point of the downregulation somewhat. I'd seriously consider discussing this with them. All the best!! xx

[Norregirl in reply to Chel91]

Thank you!

[Shwet_16 in reply to Chel91]

Hello, pls can you PM me the details of RI.

Thank you xx

[TTC0011]

Hey Matt, welcome!! Firstly men do suffer and go through the emotions - my husband is the same, but it’s often assumed women struggle more which isn’t true in our case. Your wife is lucky to have a partner so invested.

Secondly, fellow adenomyosis sufferer here (I’m 39/husband 44). I’m afraid I’m 6 transfers in and no success other than very early miscarriages - we have both male factor infertility and adenomyosis so a double whammy.

I’ve just transferred our 7th embryo (this time with donor egg due to my age - 39 and the list of issues we have). I downregulated for 2 months this time and the adenomyosis is the most suppressed it’s ever been, so I’d advise this alongside steroids and blood thinners which is giving us the best shot

I don’t know if this will work, or if we’ll ever be parents but it’s been the best chance we’ve had. Feel free to reach out any time and happy to help.

[Gold00]

Hi Matt_p

Regarding adenomyosis, I would recommend 3 months downregulation with Zoladex, which is a once a month injection that puts the body into an artificial menopausal state.

I had diffuse adenomyosis and after 6 failed untested embryo transfers I insisted on downregulation before transferring my only euploid embryo (my fertility specialist was not recommending any kind of treatment and was saying that there is actually no cure). Downregulation did work and now at the age of 44 I am 8 months pregnant with my own egg!

Wishing you best of luck on your IVF journey!

[Norregirl in reply to Gold00]

Amazing 👏 congratulations this brings me some hope as I have the same condition and also the same age as you (44 years). I did zoladex for 3 months, do you think that is enough?

Also what did you do for your transfer protocol?

Many thanks

[Gold00 in reply to Norregirl]

Thanks! Yes, I think 3 months of zoladex would be enough. I had a frozen transfer (HRT cycle) for a number of reasons: I think frozen transfers work better for over 40, plus doing a fresh transfer would have meant inflaming my system with all the hormones, which would have counteracted the 3 month of downregulation which is aimed to suppress the production of hormones...

Wishing you best of luck!

[mandp82]

Hi there, I don’t have adenomyosis but I have had 9 rounds of IVF and now have 2 kids. Our 2nd child was actually conceived naturally but this was after we went to a clinic in Greece and had a hysteroscopy with uterine rejunivation. I don’t know if this would help in your case but it might be worth reaching out to some clinics in Greece or Spain as they do have some different solutions that aren’t offered in the uk. The consultation was free with the clinic in Greece and over zoom. PM and I will give you the name of the clinic if you are interested as i don’t think I’m allowed on the forum.

Wishing you all the very best.

[Norregirl in reply to mandp82]

Also interested

[Rosie_2008]

hi Matt,

I don’t have any experience myself with adenomyosis but I had a 3rd successful round of ivf with Dr Taranissi at ARGC in London. I’d highly recommend doing some research into there to see if they can help.. I was told we had no chance with my own eggs elsewhere and I am currently 35 weeks pregnant. Obviously our circumstances are different but this clinic really do tailor treatment to individuals and I met a few couples in the waiting room that had adenomyosis.

Best of luck

[Matt_p]

Thankyou all for your kind messages. There is a lot to absorb and take on board and I will get through them all with a some thought and a notepad to make notes. I appreciate each and everyone of you responding. I wish you all the best with your journeys and/or health. I'll try and get back you all.also just a bit snowed under with work today. Thanks again

[MontsJ]

Matt_p , I’ve recently been diagnosed with adeno and likely endo by MRI, I elected to go private as the waiting list where I live was far too long. In the end I went to lap and did indeed have endo and this was excused. I’d agree with the comments above to look into if the doctor who did the lap was a BSGE approved surgeon. You might want to join the Facebook group ‘Adenomyosis miracles’. Thai Victory is a great doctor on Instagram and YouTube who discusses ideal protocols a lot. The protocol I read most succesful on here and elsewhere is long down regulation with a drug like Zoladex, then going straight into letrozole and FET. Some women have their oestrogen level checked to see the length of down reg had been sufficient. Really nice to see a partner on here, I have to say I’m jealous, I wish my husband was invested enough to take on board some of the research!

[Dogbiscuits28]

I have adenomyosis and had a growth that was triggered by the first round of ivf drugs and was growing into my uterus removed via hysteroscopy in the middle of 3 ivf tries. I had various issues with eggs and the two I did manage failed to implant. Obviously having the growth removed was only to make my uterus a better 'home' for an embryo, and the doctor was careful to explain that as a condition it will never go away. I felt/feel this is my fault as I never had any issues at all with periods or cycles and my two sisters are very fertile so I assumed I would be the same. It wasn't until I got to 41/42 that a very few odd changes happened (which must have been the beginning of the adenomyosis rearing its head). I had just waited too long. I was on my own so nervous about going it alone, so it took me a while to both find the money and get up the nerve.

Nevertheless, I have been told by doctors on a sliding scale of almost 0% chance given my condition plus my age (43 at the end of the month) to adenomyosis makes no difference at all to the odds, age is my only problem. And yes, they said the only cure is a hysterectomy but the need for one was debatable, as when you hit menopause the symptoms are also meant to subside.

On a personal note, I am so pleased to see a guy on here. It is a lonely and terrifying experience, and when your body doesn't work and/or life in general seems to make it feel like it is all your fault we all need as much support as we can get.

Sending you all the positive vibes I can - and am a firm believer of listening to the best odds rather than the worst ones. While my mental health is currently debatable, as much positivity as you can muster is always good.