Advice for managing adenomyosis

[Sophia_Mama]

Hello fellow IVF warriors 💗

I wondered if anyone can give me some advice on how to manage adenomyosis whilst going through IVF?

A bit of background on me:

I started the IVF process in May 2022 after a year and half of trying naturally for our second child, who would be a sibling to our baby girl who tragically died at full term in November 2020.

Since May 2022, we’ve had 3 failed transfers of non-tested embryos and more recently, the failure of an euploid embryo. After the recent failure, we sought a second opinion and I was diagnosed with mild-moderate adenomyosis. The doctor said that this can be common in women who have unexplained infertility and have already been pregnant and carried to full term.

Prior to this, I had slightly raised NK Cells and no good bacteria in the uterus. For my last transfer, I down regulated with buserelin, took probiotics, antibiotics, steroids, blood thinning injections, intraplids, extra progesterone (pessaries and injections). I’ve had acupuncture and reflexology on and off (usually in the lead up to egg collection and transfer) for 3 years now.

I think the adenomyosis is causing our implantation failure but at my follow up appointment, my doctor didn’t linger too much on the new diagnosis or on finding ways of managing it. Instead, she pushed for the ERA test and IVIG instead of intralipids. I would like to down regulate for a longer period as the doctor who diagnosed me said that would help but my doctor wasn’t sure.

Does anyone have any advice? Is it possible to get pregnant and have a living child whilst having adenomyosis? What can I do? I’ve read that a gluten-free and diary-free diet can help ? Should I investigate endometriosis? (periods aren’t really painful though).

I’m doing the dEFT test at the implantation clinic in Warwick and we probably will do the ERA test.

My doctor also put surrogacy on the table as an option for us, which made me think she thinks I’m not capable of falling pregnant again. This has made me spiral and I’m already so broken from years of grieving my daughter and my fertility xx

[Chel91]

I'm so incredibly sorry for your loss! 💗 Sending you lots of love. IVF can be incredibly frustrating!

In some ways your story is similar to mine, I am capable of getting pregnant naturally, but very rarely (I got pregnant over 7 years ago, which ended in a MC), but in 7 years and 10 embryos transferred I had no luck since. I then went for a laparascopy excision because I felt strongly I must have endo. It was found and removed. I have a suspected adenomyosis "bulky uterus". I also used IVIG (plus all the other immune meds and thinners), and I *finally* got luck then with embryo 11 + 12.

What I have learned as far as adeno is that usually it goes hand in hand with endo. But you will need to probably pay privately with a specialist to do the surgery, so it's a big decision. I read up on the Nancy's Nook FB group, they have a surgeon list in their files.

Other than that have you tried down regulating for endo / adeno. It is usually AT LEAST 3-4 months of prostrap / lupron (preferably with daily letrozole), then straight into medicated FET with no period, no break. This can help shrink it up before transfer, and have everything as calm as possible. Lots of ladies have had success with either or both these things or plus the immunes so don't lose hope xx

[Sophia_Mama in reply to Chel91]

Heya, thanks so much for your reply 💗 I’m so sorry to hear about your losses and years of heartbreak. Sending love back to you and your lucky embryos!

I asked my doctor about prostrap and she said they don’t do it at the clinic but I will enquire about this again as that’s what the second opinion doctor recommended.

I’ll have a think about the laparoscopy as it’s very invasive and expensive like you said. Thanks for letting me know about the FB group though - I will definitely check that out xx

[Hanj10]

I’m so sorry for your loss. I had 5 miscarriages (early) prior to starting ivf I then had one failed transfer before being diagnosed with adenomyosis. I then went on steroids inhixa intralipids extra progesterone and did a gluten free dairy free caffeine and alcohol free diet for a month before 2nd transfer which gave me my son. I then tried again for a sibling and did everything same except diet and had another early loss on 3rd transfer. Final transfer I did longer down regulation with zoladex and the diet again and I’m now 11 weeks so for me it looks like the diet probably had an impact. Good luck xx

[Sophia_Mama in reply to Hanj10]

Thank you so much for your reply and I’m so sorry to hear about your losses 💗 that must have been a really difficult time.

Congratulations on your son and your current pregnancy 💗 wishing you all the best 🙏🏻

Good tip on the diet 👍🏻 I went gluten-free for two months before the last transfer but next time I think I’ll try going dairy-free and caffeine free (haven’t drunk alcohol since before I fell pregnant with my daughter!)

May I ask how long you down regulated for? Is zoladex like buserelin where you inject everyday or like prostrap where you inject once but it stays in your system for 4-12 weeks? xx

[Hanj10 in reply to Sophia_Mama]

Zoladex is like prostap just the one injection which I think they said stays in system for 6 weeks and I had it day 21. I can’t remember exactly how long it took for next cycle but it was around 3 weeks ish I think so delayed it. Xx

[Sophia_Mama in reply to Hanj10]

Ahh I see. I’ll ask my doctor about it as those types of meds seem to be more common in managing adenomyosis and endometriosis. Thanks so much xx

[Mikki100]

I am truly sorry for your loss. I've had Adenomyosis for 20yrs, I had Endo as well but that was removed over 15yrs ago and luckily never returned. My Adenomyosis causes a 'bulky uterus' and is diffused which is the worse kind to have because it means it's all over the uterus. I had short down regs in my first 2 cycles using my own eggs. After embolization, switching clinics and to DE, I had a longer down reg where they injected zoladex then Decapeptyl (both stop periods, blocks estrogen mimicking menopausal symptoms) for 6, then 4 months respectively.

The challenge we have with Adenomyosis is it feeds off estrogen, so the minute we start taking estrogen, or have our normal cycle, it revives.

My next FET transfer is March. I have had Decapeptyl injections monthly for 4 months. I have stopped alcohol, caffeine and will be on steroids and intralipids for the first time. I am praying this will be the bean to stick! Good luck to you xX