down regulation for adenomyosis advice

[Bed12]

hey everyone, feeling a bit uncertain after a call with my consultant. After three failed FETs (x2 were PGTA tested) the doctor has suggested two months of down regulation with zoladex as they can see I have mild adenomyosis. All three transfers failed to implant and the doctor says adenmyosis can make the the environment more difficult for pregnancy.

To be honest, I’m a little terrified of taking such hormones for two months that suppress your ovaries. Feels quite extreme and I’m worried about side effects to my body. Also wondering if it’s actually successful.

Has anyone had a similar experience? Or had any success with this type of down regulation with adenmyosis? Thanks so much.

[Sweethear]

hi, I have adenomyosis and was put on artificial menopause for 3 months before my frozen Embrayo transfer and it was successful I had 5 failed transfer before that. So please listen to your doctor and do it wishing you all the best

[Bed12 in reply to Sweethear]

thank you so much for your reply. I really appreciate it. I don’t know why it scares me so much to do the down regulation so I appreciate hearing your experience xx

[Norregirl in reply to Sweethear]

Did you add any immune protocol during transfer?

[Sweethear in reply to Norregirl]

No I did not

[Norregirl in reply to Sweethear]

Thanks that's helpful. Was wondering if I should add steroids and baby aspirin during transfer to help odds but maybe it's not necessary

[Sweethear in reply to Norregirl]

You have to ask your clinic clinic what is best to do

[JadeH92]

Hi Bed12,I have both focal and diffused adenomyosis and was put on Prostap for 8 weeks prior to this FET. I'm am currently in my TWW so don't have a success story (yet hopefully) however, the focal adenomyosis I have practically halved in size and my pain prior to starting the hormones for the FET was the best it had been in a long time.

Wishing you lots of luck xxx

[Bed12 in reply to JadeH92]

thank you! Wishing you lots and lots of luck in this TWW. Xxx

[JadeH92 in reply to Bed12]

Thank you 🥰🥰

[hazzahill12]

hi yes I have adenomyosis, both a large focal lesion at the fundus and scattered diffused patches. I spent about 6 months on zolodex (meant to be 3months but extended due to covid & delays) I also used buserline as down regs and instead of zolodex before my stims for my 2nd round. I conceived naturally with my first about 2 months after a second failed transfer. My little boy is now 10 months old. I then conceived again naturally when my first was 6 months so currently 17 weeks pregnant with my second. Both complete miracles with my adenomyosis , endometriosis & low ovarian reserve I was given less than 1% chance of success. I do think down regulation can really help it seems crazy as it’s the complete opposite of what we’re trying to do. Good luck X

[Bed12 in reply to hazzahill12]

thank you so much for your reply. Appreciate it. Did you have a lot of side effects on zolodex? We aren’t able to conceive naturally due to male factor so am wondering if this type of down regulation helps fet success.

[hazzahill12 in reply to Bed12]

hey, I personally I did find it tough. I had side effects on zolodex the typical hot flushes, forgetfulness, mood swings pretty much as they describe for the menapause probably after about 4-8 weeks they kicked in. But all my other endo and adenomyosis symptoms did basically disappear, also shrunk my focal lesion and improved the diffused patches seen via ultrasound. I did the 6 months without any add back HRT as wasn’t offered it not sure why. I then went back on it prior to the stims for the next cycle, I only managed a the first injection (was meant to have x2-3 ) then managed to get my consultant to reluctantly agree to buserline for longer instead of zolodex. Which is what I did. I understood the importance of down regs had seen the good effects the zolodex had had but I found buserline more manageable. I don’t want to put you off everyone’s experience is different on it and I’ve read on this forum lots if people who haven’t had the same side effects or didn’t find them as bad as me. It also did really help. I hope you can try it yourself and see. We didn’t have any male factors and only one fresh transfer which was unsuccessful after down regs. But beings as it was a fresh cycle , My plan was as to try a frozen transfer as we had one on ice after down regs, to see without stims on board.

[Bed12 in reply to hazzahill12]

thank you so much for this reply

[Norregirl in reply to hazzahill12]

Hi there, also in a similar situation as you. How long did it take for your period to return?

[hazzahill12 in reply to Norregirl]

Hi

Sorry only just seen your question.

Sorry to hear that you had the same experience, for me I went straight onto buserline after the zoladex.

so I didn’t have a period until after I had egg collection and a fresh transfer and for me my period came just before test day. X

[Kimbob82]

I've just been diagnosed with adenomyosis via MRI after 15 failed embryo transfers (3 chemicals and 1 miscarriage and 11bfns) My Dr has recommended 6 months of zoladex treatment but I'm not prepared to put my body through that so we're moving onto surrogacy. I've done a fair bit of research on down reg and it's seems that a lot of the time it just doesn't work. All the best on whatever you decide. We're very lucky though we have 5 frozen embryos and a surrogate (friend) that is ready to go. X

[Bed12 in reply to Kimbob82]

thanks so much for your reply. May I ask, do you have any symptoms of adenmyosis? E.g. pain/heavy periods? Did the MRI show it as severe? Or anything else. I’m also apprehensive about down reg and unsure how successful it is.

[Kimbob82 in reply to Bed12]

No symptoms whatsoever. Never had a heavy/painful period in my life. My Dr was literally just doing the MRI to rule everything out. He was as shocked as I was. It's diffuse and quite severe I think. I've read studies where some women take zoladex and their body actually doesn't come out of menopause, which I find absolutely terrifying. And from what I've read, having horrific symptoms is the rule rather than the exception. It's a big decision to make. But I'm 40, so if you're much younger you might have more time than me. We've been at this for 6 years now and I'm just over it. I want a baby in my arms, so that's why we're moving on to surrogacy. Feel free to PM me if you have any other questions xo

[Bed12 in reply to Kimbob82]

thanks for the info. Wishing you lots and lots of luck with the surrogacy! Xx

[Norregirl]

Hi, I know this post was from a year ago but I'm also in the same situation as you and wondering what direction you took on this? Tia

[lovelyx in reply to Norregirl]

Hi, just wondering if you had any success by chance? I am struggling with adenomyosis myself with multiple failed transfers.

[Bed12 in reply to lovelyx]

Hi lovelyx, it’s so hard when a transfer fails. Sending you a big hug. I got a few second opinions from other consultants and a scan at a hospital to get a second opinion on adenomyosis and the jury is out on the effect it has on pregnancy. I don’t think as much information is known about it as endo. I decided that I did not want to down reg. it felt too extreme to me and I was uneasy about it. I moved clinics where the care was a lot more personal and I saw the same doctor/nurse all of the time (was unhappy with the overall service at my clinic), gave myself three months off, did weekly accupuncture, did a natural cycle where the fet was timed with my ovulation and only took progesterone. This transfer was successful and I have one year old twins. In my case I was using eggs that I froze five years prior. My previous transfers had all been PGTA tested and 5AA. After these failures, the lead embryologist said to me that he ‘had a doubt’ about the effect that thawing my egg, fertilising it then freezing the embryo, then thawing it again to PGTA test it then freezing it and then thawing it again to transfer it, would have on the embryo. He said these multiple thaw and freezes could affect the embryo. So I decided not to touch the embryos at all to test etc and had a successful transfer. It’s hard to know exactly what made the difference (which is why this whole ivf process is such a minefield and so hard) as I tweaked a few things but in terms of adenmyosis, as it was not severe and not causing any symptoms, I decided not to factor it in.

[lovelyx in reply to Bed12]

Wow! That is amazing! I actually have both endometriosis and adenomyosis unfortunately. I have had several failures. One of which was a chemical but the others all have completely failed. At this point, I truly dunno what to try. I have tried down regulation already but only for 2 months. Its tough to truly pin point what works and what doesn't as you said. Even immune protocol with IVig didn't help either. Still no luck. My chemical pregnancy, I didn't do anything extra. I have basically given up hope, but again, that is so amazing that it worked out for you! ❤️