Decapeptyl injection with Tibolone HRT - Endometriosis UK

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Decapeptyl injection with Tibolone HRT

CorganCat profile image
5 Replies

Hi there,

I went to the GP for extreme emotions and pain around my periods, and severe cramps/bleeding induced when exercising. I was put on an 6 year waiting list (Northern Ireland) so had to pay for private healthcare to see a gynaecologist.

I was given the first monthly dose of decapeptyl on 11th Jan and a daily Tibolone HRT tablet to put me into chemical menopause. The thinking behind this was that it would remove the input from my ovaries and give a diagnosis of severe PMS or PMDD if I felt better as a result.

I started to feel weird about a week in, when I also got my period. A few days later I was in excruciating period pain (which happens anyway but normally from the start, not the middle of the period) and 2 days after that the emotions hit hard. I was experiencing suicidal ideation, anxiety and distress and had to have an urgent psychiatric assessment. I’ve been off work and feeling very up and down, I can’t seem to sleep enough either. I think maybe it is beginning to wear off now, but today I am meant to get the next dose and I don’t think I want to. The whole thing is only meant to be a 3 months trial to see how it makes me feel, so at best I would maybe have 6-8 ‘good’ weeks if it works this time. I am scared I will just have an awful time and not be able to do anything for the next 2 months as I’m not back to work yet.

I wonder if having the injection/tablets start so late into my cycle made me go nuts but the gynaecologist just keeps saying it should only have made me feel better and that it might be better the next time, but can’t give me a trajectory of what is “normal”. I feel a bit confused, there’s no way I’m the first of his patients to have the side effects surely! And he says the only real way to check for endo is laparoscopy, but he did an internal scan which all looked normal.

I don’t think I will take the next dose - does anyone have any advice they could give?

Thank you

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CorganCat
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5 Replies
Sunset-lady profile image
Sunset-lady

Hi. There's a Facebook page for these injections. There was a post about what you are describing. For some women, this drug leads to extreme emotions and thoughts. Some women report being sectioned after having them. I would not take it again. For some women they do not help you because they make you feel like this. Do some research and you'll find similar stories of women having extreme reactions like this. It's rare but it does happen x

CorganCat profile image
CorganCat in reply toSunset-lady

Thank you very much!

BattyForBats profile image
BattyForBats

Hi, I'm so sorry to hear what you've been going through. I had thr injection and tibolone for 6 months while being put on the waiting list for a total hysterectomy. I did notice, and so did my husband, major mood swings. This usually happened thr closer it got to having thr next injection. I already have depression so it was a really hard trying to.figure out if I needed to increase my doseage of my antidepressants.

It was almost like I was having mega PMT or I was becoming bipolar. Thankfully I have had my op now, but if I hadn't I would have been up to see the gp or br trying to see the consultant to try something else as I hated the way I was feeling.

Hope this has been helpful

CorganCat profile image
CorganCat in reply toBattyForBats

Thank you so much for sharing and I’m sorry it was difficult for you too! I have depression/anxiety as well so I don’t think they know what to do with me but I think my own GP knows I was doing so much better before the injection. I’m not going to take it again.

BattyForBats profile image
BattyForBats in reply toCorganCat

I'm glad you've made the decision that suits you best. I think they see the jab as a fits all solution and it def dosent. I hope you find a solution that works well with you.

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