Zoladex / Tibolone Side Effects ?!

[livvyjustine]

Hiii,

I’ve been on Zoladex since February, and Tibolone (HRT) since April/May. Since taking the Tibolone I’ve had every single side effect possible:

- Swelling in lower legs, ankles

- Crazy amount of hair loss

- My nails have broken

- Nausea

- Skin changes, e.g. rashes

- Weight gain (probably gained about 10kg, and I can’t seem to lose it, gone from an 8 to a comfortable 12)

Has anyone else experienced any of these? And how have you been managing?

It’s made my self confidence plummet as I’m just not the same as I used to be in all aspects, and I can’t seem to do anything about it😭

[Thecrazypugglelady]

That sounds like me 😪. My legs are so heavy I stopped my HRT for a bit but my legs are still heavy. Also tried walking through pain incase it was circulation issues but just increased pain later on. I've been on these since Dec and have to stay on them until I have surgery but cant manage to get an appointment. But it hasn't changed anything in the slightest and I look pregnant when I'm not! So I know adsactly what you mean! I feel what you are saying! I was an 6/8 now pushing a 10/12 only because of the bloated tummy. I just can't wait until I have a scan or surgery to tell if its actually worth going through or is it just another "thing to try" in the long process 😔 because nobody knows what to give us. Maybe given that you've got a skin rash you might get a quicker answer 🤞

That one thing that has never happened but definitely go to gp on that one. xxx

[livvyjustine in reply to Thecrazypugglelady]

Thanks for responding! it’s so crazy the impact that it has our body😩do you know how long you’re going to be on it for ?

[Thecrazypugglelady in reply to livvyjustine]

I know I just wish someone had the answer! No it was initially 12-18 months but given the situation everything is on hold so probably longer 😔 but most say 6 months. Have you been told how long you ll be on it?

[livvyjustine in reply to Thecrazypugglelady]

I was told 6 months initially but they cancelled all of my appointments so now I really don’t know what’s going on😩so just until I get an operation x

[Thecrazypugglelady in reply to livvyjustine]

Bad isn't it! I'd definitely speak to your gp about it or ring your consultant I always pesture mine they hate me🤣 but you just dont get taken seriously otherwise

[Thecrazypugglelady in reply to Thecrazypugglelady]

Just a thought with hair and nails sitch have you been given calcium tablets? The gp put me on mine just because I was on it for a long time. It has helped with nails braking

[livvyjustine in reply to Thecrazypugglelady]

I haven’t, but deffo work a try. Thanks girl💎

[ameena906]

Hi pretty much snap! I was on zoladex and then prescribed tibilone for 6 months. although my endometriosis pain reduced, I suffered from 12 pound weight gain, hair loss, brain fog, memory loss, headaches, nausea and also the injections hurt so much that I couldn't exercise for a few days after them as I was so sore. I rang my GP because my my Gynaecologist appointment is not even arranged yet and told them I can't take it anymore. Therefore made the decision to stop treatment, I am getting pretty bad withdrawal symptoms but I am hoping that it will be worth it in the long run.

[livvyjustine in reply to ameena906]

Thank you for responding! Hopefully the symptoms will stop soon, and that your endo will stay at bay even tho you’re not on the injections/tablets. I completely get you about stopping treatment, I have this conversation everyday. So hard to stay on it when you’re not kept in the loop/ don’t know what’s going on and all the added unwanted extras from the medication. Did you lose the weight/ hair stop shedding etc when you stopped the treatment ?

[ameena906 in reply to livvyjustine]

I was due my injection on Monday so too early to tell yet. At the moment I am still bloated and really tired and have to take paracetamol everyday for headaches but hoping that I feel better soon.