new to Tibolone & Decapeptyl. Help my nerves.

[Weevikki]

Hi. I was diagnosed with a fibroid 2 yrs ago but symptoms have become a lot worse recently with prolonged and heavy bleeding. I saw consultant yesterday and after discussion about me not wanting to take anything that would give me weight gain or headaches (i am over weight already but really working on loosing it & i get migraines). She has put me on Decapeptyl monthly injections (gave me first one there and then and prescription for Livera (tibolone). She told me I’ve to take them for at least 2 months before making a decison. I am 49 and she said I could take it for up to 2 years. I may naturally be through menopause by then or not. If not I’d have to repeat the process of menopause again naturally rather than be put into it by meds. Came home. Looked up both meds. Side effects. Weight gain and headaches for both! Look up lots of websites and the weight gain seems quick and can be extreme. Along with muscle wastage & less ability to exercise.. I do weightlifting and gym, spin. Terrified now that I have something in my body that sounds like it will be horrific and also to pick a prescription that will also possibly cause the side effects I said I’d never sign up for. I’m not wondering do I just keep going bleeding rather than this road. It may be psychosomatic but today I’m shattered, dizzy and a bit nauseous. Anyone been on these meds and felt weight gain and headaches not a problem. I was on depo provera prior to having kids and piled the weight on then.

[ferns80]

Hi

I’ve been on the same combination for about 15 months. It’s been very much worth it for me as it manages my endometriosis symptoms and I’ve not had to take a day off from pain since I started. I’m on the list for an operation. I’ve had no significant side effects but everyone will be different. And the leaflets put the fear into you.

I’ve had the very occasional hot flush but nothing major. No headaches at all, but that’s not something that bothers me normally. I did start to have sore fingers - not even sure if it’s related but found that I had low vitamin D and since I’ve started supplements that has gone away. I did go for a bone scan and they said it was really important to take vitamin D with HRT.

In terms of weight gain I’ve put on a lot of weight since lockdown. When I went on the decapeptyl and tibolone I put on a few extra pounds but not a lot, an extra 4-5 lbs maybe, which I’ve recently lost. I had a lot of personal stuff going on at the same time so my diet was quite bad for a while so it may just be coincidence and actually nothing to do with the medications.

I spoke to the gynaecologist about it as I didn’t want to put on more weight either. He said the medication itself doesn’t cause weight gain but that it might increase your appetite which leads to weight gain. Which is kind of the same thing to me.

I’ve been very unfit since lockdown but I’ve had no muscle wastage or issues with doing some exercise if I want to.

Everyone will be different and I guess it’s a balance if you do have side effects if it’s worth it or not. I don’t know if you can speak to your doctor or someone about your concerns?

Feeling nauseous etc is rubbish and I hope you feel better soon.

[Weevikki in reply to ferns80]

thanks. I am nervous about the weight gain. I did think it would be the increase of appetite rather than true weight gain. The depo provera does the same. I suppose I just to be aware of this and eat healthily. I am no prophylactic migraine meds so hopefully that would stop any headaches. Any other side effects I’ll deal with them I suppose. Maybe worrying unnecessarily as I’m so in the zone at the moment to loose weight and don’t want this scuppering me. Thanks again.