On Prostap but worried about starting Tibolone

[Batwoman3]

Hi all - this looks like a really helpful group xx I have been given prostap 3 monthly injection as now on list for a full hysterectomy due to fibroids . Consultant also prescribed Tibolone but when I read the data sheet it terrified me and I haven’t took any yet. I’m feeling more depressed than ever though and wondering if it would help with that .. but I know my anxiety about the side effects of Tibolone is huge . Any advice? Would something else be safer like body identical gel ? He said surgery will be within 6 months but I know that’s not guaranteed

[Crinan78]

I am sorry to read how scared this has made you, I wish the doctors could explain more rather than just saying what they are doing and leave you to read all about it. I’ve been on Tibolone for four weeks now, after a really bad adeno flare up I’ve been put on Zolodex. I was a bit wary too but I’ve had absolutely no issue. I’ve decided not to drink alcohol while on it as I did read that can increase chances of breast cancer. When I asked the nurse about this she said she didn’t know but maybe best to avoid alcohol if that’s what I had I read. Is there a doctor that you can explain how worried you are to that could help with advice? I know we all have different reactions but I honestly don’t notice any difference by taking it. I hope I can help a tiny as it’s hard enough dealing with what we have to deal with without anxiety about medication on top of everything xx

[Awwy in reply to Crinan78]

Hi Crinan78

I have been on tibilone for 2 years and not had any side effects. Its one of the ones that is suppose to be closest to what the body produces. Cant remember where I read that!

Id give it a go and see how you feel. If its not right for you. You can always come off it and try a different one. Our bodies are different and react in different ways.

I know sometimes docs are like here is a pill and don't really explain. I always make a point of asking and I can tell they dont want to go into it sometimes. But do push it and tell them its making you anxious.

Take care. 💜

[Batwoman3 in reply to Crinan78]

Aw thanks Crinan and Awwy , yes I agree they do just give you meds and you are expected to just trust them. I did contact a menopause specialist who explained about other things like the body identical gel that I could swap to after surgery... maybe Ill ask my GP or the gynae consultant if its ok to just take that instead of Tibolone.. I did email the gynae department with my worries but Ive not heard back yet but it has been xmas. Thankyou both for your replies . This is a really helpful group

[Tinadeol]

I am on postap I decided to do patches I didn’t want to take the tablet best to try see what suits you good luck

[Liz84]

Hi batwoman3,As part of my treatment for endometriosis I was on prostap for 1 year. I just finished prostap 6 weeks ago and then got the coil. I had an overwhelmingly positive experience with prostap in terms of minimal physical side effects and in terms of improvement in endometriosis symptoms.

However in terms of my mental health,

on prostap I noticed my mood was low and I felt a lack of fulfilment and enjoyment in my normal activities. When I took tibolone, although it didn't completely resolve those feelings it massively helped!

I know each woman is different and different treatments and medications work for some people but not all, but i just wanted to leave a comment of a positive experience with the medication. You are not alone in your experience, it is completely normal for our mental wellbeing to be affected by hormonal changes such as those that come with postap. Wishing you all the best with your treatment and hopefully you find out what is best for you!

[Batwoman3 in reply to Liz84]

thankyou so much Liz84 . Yes I am having some very up and down moods .. I think definitely more extreme than when I wasn’t on Prostap . I would love to feel happier and more at ease generally but my main worry with Tibolone was all the mention of things like cancer , stroke , blood clots etc on the data sheet which seemed to be a very long list of bad things . That’s my main fear about taking it . I have huge health anxiety and am such a hypochondriac if I take one of those tablets I know I’ll be checking everything daily 😣 has anyone had any advice from doctors about the risks?

[Hidden]

I'm in a similar position I was just prescribed it before Christmas but I am so scared to take it because of my family history which seems silly considering I have been on zodalex for 7 months which I really want to come off. I haven't spoken to the drs yet but they said the gynae team wanted me to take it.

[Batwoman3 in reply to Hidden]

Ah I know how you feel ! Exactly my worries with family history etc! I have messaged my GP surgery today so I will let you know what they say . If short term use is not risky and will be beneficial then I’ll give it a go .

[Vickster2512]

I started on prostat injections in feb and the tibolone due to fibroids. Currently waiting for hysterectomy I’ve not really had a side effects. Stomach pains for a week or 2 that’s all. I had my 2nd prostap injection yesterday.

Apparently your fibroids shrink when you go into menopause so I’m presuming the consultant is sending me into early menopause to shrink my 16cm fibroid prior to my op

[Batwoman3 in reply to Vickster2512]

yes that’s the reason for my prostap too . I hope you get your op soon and don’t get any further side effects . I’ve been having hot flashes and sleep problems .. trying Nytol and some menopause supplements but they are not doing much . Hopefully can get on some oestrogen only HRT after the op but still don’t want to take the Tibolone . Will see how it goes . Speaking to GP about it all in a couple of weeks . Will report back if anything helpful is said

[Vickster2512 in reply to Batwoman3]

I’m 48 so have been having night sweats for over a year.

Hopefully my operation should be in next few months. They are doing keyhole surgery.

But don’t be scared of using the tibolone meds. I was told I have to take them alongside my injections.

[Batwoman3 in reply to Vickster2512]

Hi Vixter , do the Tibolone not help with the night sweats at all? I think I just want better sleep and less hot moments, but will definitely want the HRT patches after the op for bone health .. all the cancer and stroke and blood clot scares in the Tibolone data sheet really put me off that as I would just worry every day .

[Vickster2512 in reply to Batwoman3]

I have been having night sweats for over a year and been on the tibolone for 4 weeks so would say they’ve eased my night sweats. Just try them. You don’t know until you try. It’ll be fine.