Adenomyosis

[SB342]

Has anyone experience of down-regulating for adenomyosis?

Would be really grateful to hear any advice.

Thank you.

[Chel91]

My protocol is Prostap / Lupron (or Orilissa)plus Letrozole daily for 2 to 3 months. My doctor likes to use both at the same time. Side effects and risks are there, so they don't usually recommend doing it for longer than that. Hot flashes and headaches can be quite common. Then best thing is to start a FET straight after so you can get maximum benefit I believe xx

[SB342 in reply to Chel91]

Thank you!

[SB342 in reply to Chel91]

Can I ask at what stage of your cycle you started the downregulation on Prostap/ Lupron/ Orlissa ? Thank you so much.

[Chel91 in reply to SB342]

Usually they might say at beginning of a period, but you can technically start anytime. Just want to make sure you couldn't possibly be pregnant as it would damage that. Best of luck x

[Eternalwarrior]

Hello lovely,

I suffer from endo and adenomyosis and, after a long journey, in my successful transfer that gave me my son, I downregulated for a few months to calm down my adenomyosis before the FET. I won’t lie… The injections to down-regulate caused me lots of side effects but it was worth it! I agree with Chel91, it is best to go for the FET straight after. Good luck xx

[SB342 in reply to Eternalwarrior]

Thank you for telling me this. I'm so pleased for you. We all need hope... Sx

[slinky00]

Hi

I had Zoladex for 6 months and then went for FET straight after which failed and then another that also failed. There was a significant reduction in the adenomyosis swelling but for me the side effects of being put into chemical menopause was horrendous and something I really don't want to do again. Everything I could have suffered with I did, it was not a pleasant time for me. I have since been on a break for over 6 months. I haven't given up on my journey but will be discussing other options for me going forward I am not sure I can do it again.

However, if my FET had been successful I would be saying it was all worth it - every single second of it!

[SB342 in reply to slinky00]

Thank you for sharing your experience. I'm so sorry it's been horrible. It's pretty scary, but I'm not sure I have any other options after so many failed transfers. Good luck to both of us! xx

[slinky00 in reply to SB342]

Thank you for message, yes I can completely understand your point and hope for the best for all of us. Stay in touch and let us know how you get on ❤️🧡💛💚💙💜

[SB342 in reply to slinky00]

You too!

[DianeArnold Partner Nurse Fertility Network UK]

Hi SB. Can be a long ride, but in the right hands, hopefully you will get there. Good luck! Diane

[Chantysal]

my protocol was decapeptyl for when my scan showed I had adenomyosis and lupron on a second cycle as a treatment for my endometriosis.

I asked my doctor (a different one ) if she could see that I had adenomyosis and she said nothing is showing lol. very weird cos when I got diagnosed I could see it so clearly on the monitor, not sure if my previous doctor had a different machine that showed more details.