Decapeptyl for fibroids - month 3 and symptoms worse - anyone else experienced this?

[Jlg-]

Hi, I am 3 months into decapeptyl injections with tibolone hrt for fibroids. I’ve been bleeding consistently but not unmanageably till month 3 when now had multiple incidents of flooding and cramping. Also feels like my largest palpable fibroid is bigger and have read tibolone can increase uterine size. Have rung gynaecologist’s secretary 3 times to see if I can discuss but no joy. Wondering if anyone has any experience of similar and whether stopping tibolone would help? Thanks for any input!

[Moon_maiden]

I had Zoladex, it didn’t help my pain.If you can afford it see consultant privately, you can flick back and forth.

I had enlarged uterus and multiple fibroids before any medication so not sure about that part. Hardly any of the fibroids showed on scans.

Are you having surgery for Endo and fibroids?

[Jlg- in reply to Moon_maiden]

Thanks for your response. I’m trying decapeptyl to see if I can make it through to natural menopause ( I’m 48) without hysterectomy which would be open surgery due to size of fibroids .

[Moon_maiden in reply to Jlg-]

I’m 53, only diagnosed at 51 😂I was still having periods last year, at least until Zoladex. something somewhere went haywire a couple of years ago.

I ended up having hysterectomy last November. The fibroids were tucked away and difficult to remove, not sure of size.

Is GP helpful? They can send a message to the consultant, secretary will take notice of them.

[Jlg-]

Yes, I’m going to definitely try that with the gp. Thanks. Do you mind me asking about your op? Was it keyhole or open and how long was your recovery?

[KimG21]

Hi, I’m having similar problem with decapeptyl and six weeks into treatment. Bleeding would fluctuate from light to big gushes and terrible cramping. I am back in norethisterone to stop the bleeding. How are you now did it settle? Xxx

[Jlg- in reply to KimG21]

Hi, Sorry to hear you’re having similar problems. I ended up stopping tibolone mid way through 4th month of decapeptyl and the bleeding stopped. They persuaded me it was just coincidence and injections just took that long to work so I restarted tibolone and the bleeding came back. Now about to try oestrogen patches and progesterone tablets as alternative hrt but am nervous bleeding will come back and not suffering too many menopause symptoms so hanging fire for a little while. But yes the injections did work, just took a while and/or complicated by tibolone which seemed to completely undo their effect. Hope they work for you soon.

[KimG21 in reply to Jlg-]

🙏 thank you 😊 yes I had tibolone as well and stopped it as I wasn’t getting menopause symptoms. I wasn’t really told when to start taking the tibolone, I was just told to take it so I took it when I started the injections which I didn’t feel right about but yes I think that didn’t help with the silly bleeding then the frightening ones. I might be the same where I take longer for it to take effect. Funny how they don’t tell you all this before you start the injections - I think many woman would refuse it 🤣I hope your patches work and I’m like you hanging off unless I really need to hrt. Have u had any scans to see if your fibroid has shrunk? Good luck with everything xxx

[Jlg- in reply to KimG21]

Yes it seems mad to start 2 meds at same time as you don’t know what’s doing what! And yes also mad not to tell you it might take months- I was expecting instantaneous menopause! I did have another scan which didn’t show much change ( in fact showed an extra fibroid for good measure!) but it’s only been actually working for about 6 weeks so I’m hopeful but on the list for hysterectomy if it doesn’t keep working. Good luck with it all!

[UnderAngelWings]

I am sorry that I cannot offer help with advice about the injections that you have been given. But I can advise you to look up The White Dress Project on Instagram and other fibroid charities and organisations from there. They are AMAZING! You can learn so much from the women sharing on their profiles about your options for help and healing.

Wishing you healed.

May your Angels ever guide you and guard you.

💎

[UnderAngelWings in reply to UnderAngelWings]

P.s Please get your iron levels checked. As you are bleeding heavily.