Down regulation for 9 months due to constant delays in FET date, please help!

[peace1980]

Hi there please can someone help me. I have been down regulating since June 2024 and my FET keeps getting delayed due to various findings and my fertility doctor keeps lengthening the time on down regulation with prostap so I have technically been in menapause since June 2024 and I am going crazy, i hate it so much.

Its messed up my vaginal microbiome so I don't have anymore good bacteria, raised my vaginal PH and so bad bacteria has been growing. I have extremely bad mood swings, feel low and I feel my joints are just not what they used to be. I feel like an old woman when Im 44.

I want to stop the down regulation but I keep thinking not long to go to FET. But now I have to treat my vaginal microbiome with antibiotics and so more delays. I want to cry and scream at the same time.

Can someone advise me if I should stop the down regulation or should I continue? I went into down regulation only because my doctor suspected adenomyosis and i had stage 1 and 2 endometriosis removed last June 2024. But i was only supposed to down regulate for 2 or 3 months which has extended to 9 months unintentionally. Can someone advise me please as I feel my doctor dow not care about me at all and I want to cry my eyes out. Thank you

[JA-fnuk Partner Nurse Fertility Network UK]

Quite upsetting to read your post-hope you have people around you for support and have taken advantage of the counselling appointments you should be offered while on treatment. Think you should discuss how you are feeling with your clinic /consultant - hopefully he will be able to give you a timeline as to when your FET will go ahead

Thinking of you

Janet-Partner

[peace1980 in reply to JA-fnuk]

Thank you for your response. I've reached out to the doctor to see if he can help but he wants me to put me now on HRT without the down regulation and get a period then do FET. But isn't HRT going to defeat the purpose of down regulation that I did for adenomyosis and endometriosis? It's called Femoston 2/10. He said it would build my lining then give me a period. This way my vaginal microbiome can stabilise itself whilst I also take vaginal probiotics. Is tgis a good plan? X

[Joeysjourney]

Hi there, gosh that's a long time to down reg. I had a prolonged down reg because my body wouldn't respond properly and my ovaries were producing follicles still. I did it a few times for between 6-9 weeks each time and I found it such a slog. So my heart really goes out to you.

I see you've reached out to your consultant which I'm glad to hear. Being on pause for that long would affect anyone. I can't comment on the new plan as I didn't have the same issues but I guess you can trust your Dr or get a 2nd opinion if that's possible in the time frame.

Wishing you all the best and either way I hope you get off that down reg! Big hugs xx

[peace1980 in reply to Joeysjourney]

Thank you for your reply. I really appreciate it. Xx

[Endofitall]

are you NHS or private. I would definitely get a second opinion. I can’t understand why they’ve done this for so long. It can’t be good for your health/physical/bone/mental health. Hang in there xx

[h0lli3]

Hey! I am on triptorelin long term for stage 4 endo and adenomyosis (amongst other things 🙈) which does the same as prostap. You can ask for add back hormones to relieve some of the menopause symptoms - I'm on tibolone daily which was arranged at the same time as my first triptorelin injection, by the hospital before discharge after surgery. The clinic worked out my ivf meds for egg collection based on my triptorelin injection dates. I did have to pause tibolone whilst on the ivf meds, and delayed a triptorelin injection by one week, as we opted to freeze all and not transfer.

[peace1980 in reply to h0lli3]

Thank you so much for your message. It's a private fertility clinic and no one ever put me on tibolone or mentioned it. But now in about 1.5 months I want to start my FET cycle and j read tibplobe takes 3 months to work. Is it too late to be on it or can I take the femoston HRT which is combined HRT 2mg oestrogen and 8mg of progesterone alongside my busereline injections? Thank you

[h0lli3]

Definitely share your frustration with the differing advice depending on where you are or who you see! Tibolone is also HRT although I don't know the differences between each, I would imagine it would have the same afffect anyway. Deffo ask you clinic though, no harm in asking.Interestingly, I have only ever taken tibolone whilst on the injections, and have been told to stop when I decide to stop the injections. I wasn't told it took 3 months to take affect but didnt notice any symptoms, so I think it must just be different for everyone.

For timings, I had my usual triptorelin injection then 2 weeks later started ovary stimulation and stopped tibolone, had the trigger after 13days, egg collection 2 days later, was offered a transfer at day 5 but decided to freeze, had a triptorelin injection a week later and restarted tibolone the same day. And will do the same again this month as banking embryos before more surgery!

Hope your symptoms start to settle, lots of people on the endometriosis forum having prostap and other HRT, might be worth a browse.

[peace1980 in reply to h0lli3]

Thank you so much for your guidance, more than my fertility doctor ever gave me. Which forum is it exactly about endometriosis and HRT? Thank you xx

[h0lli3]

No problem! healthunlocked.com/endometr...

[Kooolcatt]

hi Peace,

I don’t want to scare you but I was prescribed Lupron shots by my surgeon for 9 months after which I had severe bone issues. There was a time when I could not stand for more than 15 mins and was diagnosed with osteopenia.

These docs are heartless and cannot be relied on. I would say stop prostap as soon as possible and while you are on it, make sure you take calcium and vitamin D supplements with it.

Btw prostrap and Lupron shots are one and the same.

[peace1980 in reply to Kooolcatt]

Thank you for your advise, i really appreciate it. I agree with you I'm going to stop. I've managed to get some HRT femoston 2/10 oestrogen to progesterone ratio and im taking that now so at least it will help me get my vaginal microbiome back in order so I get go into FET soon. Thank you xx

[Kooolcatt in reply to peace1980]

All the best to you. I am in the same situation as you Peace. 42, have got adenomyosis and endometriosis, negligible egg reserve and docs have advised me for donor egg IVF with only 30 percent success rate. I am currently on progynova. They have asked me to take Lupron shots for 3 months to down regulate Adenomyosis. When I said no to them she said there is no other option and said she would discuss my case with an orthopaedic before prescribing it to me

[peace1980 in reply to Kooolcatt]

Thank you very much for your reply Kooolcatt I have an appointment with a Gyne consultant tomorrow, and I will find out more what he suggests. The Femoston is 2 mg oestrogen and 10mg progesterone. I was told this a very low dose. My main concern righg now is getting my vaginal microbiome back in order as that is really important too. I can let you know what he says if you are interested? Xx

[Kooolcatt in reply to peace1980]

Yes I agree to it. Sure please let me know what your gynaecologist says.

Btw 2mg estrogen sounds safe to me.

[Kooolcatt]

I was also prescribed with femoston but I didn’t take it coz I read somewhere that estrogen in HRT makes endo worse.