Prostap

[Wonderfulruin]

I'm on prostap I've had one montly and one 3 monthly injections (coming up to 3.5 months on it). When I first started it up to about 8 weeks in I felt amazing. I was losing weight, I had energy and felt like I was seeing myself come back. I then started hrt and since I started that all the weight I lost in 8 weeks (5kg) has come back, I've had terrible sugar cravings and I've felt awful. No energy, the pain is getting worse again and my mental health is really low to the point I have had thought that it's not worth it anymore. I have my next 3 monthly injection at start of April and a review with gynae end of April. I'm unsure whether to continue after my next one because the add back hrt that I have to take due to age is killing me and my gp isn't very helpful. Any experiences or advice would help?

[Rainbow2468]

Hi I'm on monthly prostrap injections and i have not taken the tibolone they prescribed as i was concerned it might start my bleeding again, and I've been totally fine with out it. I lost half a stone in the first five months, but noe I'm gaining 1 to 1.5 pounds a month. But it's either the injections, a hysterectomy not having that, or bleed to death, or that's what it felt like with excruciating pain, so i thought stuff it, I'll get. My exercise bike out. Sending you a safe hug x🤗

[Wonderfulruin in reply to Rainbow2468]

It's really tough to know what's best. I haven't bled on tibolone yet and I've been on it for 1 and half months. They keep saying to get to 3 months and it should settle so I'll keep going until that then I'll stop if I feel no better.

[Rainbow2468 in reply to Wonderfulruin]

They told me to give the mini pill three months after 11 weeks id had enough went back said i had to wait six months i was bleeding constantly, they had taken me off noresterone which was working brilliantly for me. That's when I thought I'll have to give prostrap a go 😔

[Wonderfulruin in reply to Rainbow2468]

It's really rubbish isn't it. I won't go on the mini pill it just doesn't work for me

[Rainbow2468 in reply to Wonderfulruin]

It is 😔

[Elaine91]

Hello,

I had a similar experience with HRT on prostap – the tibolone counteracted the effect of the prostap so much that there wasn’t any point taking it. (Ended up dropping the tibolone, which possibly was a bad idea as I do have osteopenia - but then again I don't know what my bones were like beforehand)

Prostap does cause a loss of bone density without HRT (eg link.springer.com/content/p...

but I haven’t been able to find out if this loss can be mitigated by a bone building supplement (calcium, magnesium, vitamin D, vitamin K2…)

I think it would be a reasonable thing to ask for a DEXA scan to see what your baseline level is – if you’re well into the normal range a small loss might not be a problem

Also it would be reasonable to try a different type of HRT to see if it’s any better

Prostap is only licensed for 6 months of treatment (although docs do prescribe it for longer). What was the plan for afterwards?

[Wonderfulruin in reply to Elaine91]

So original plan try prostap for up to 2 years with hrt to prevent bone density loss. Then to go back and try dienogest again. (It affected my mood badly)

I am also on the waiting list for genetic testing for cancer because if I do have the same gene as my mum hrt won't be suitable.

It's a really tough situation, I either spend my life in loads of pain, heavy bleeding, mental health that gets much worse the week before my period. Or I try different synthetic hormones that mess with my body and my mind giving different side effects and poor mental health all of the time.

I've been to see a pharmacy and trying some vitamins to see if that helps. At this point I'm desperate to feel better.

They are delaying adding me to a long hysterectomy wait list because of my age. They want to wait until at least 35+

[Elaine91 in reply to Wonderfulruin]

Sorry, that’s really tough.

In case it’s of use, I found the endo diet plus various supplements reduced the pain to some extent (still needed surgery though)

There’s a lot of contradictory studies on diet/supplements though and I don’t know which part(s) helped as I was taking a mixture of things.

I hope things improve

[Wonderfulruin in reply to Elaine91]

I'm a couple of days into taking a menopause supplement, and I have slightly more energy but feel nauseous.

[Rainbow2468 in reply to Elaine91]

Hi i got told to take vitamin d and not to worry as I eat cheese and drink milk by gynocolgy.

[Wonderfulruin in reply to Rainbow2468]

It’s okay cos you eat cheese and drink milk. 😬🤔

[Rainbow2468 in reply to Wonderfulruin]

Yes the gynecologist told me jot to worry and take vitamin d 😊