Endo/HRT/Zoladex

[thebird1]

Afternoon all,I'm currently awaiting hysterectomy and have been told it'll be another 74 weeks! I had a lap in 2026 and have been diagnosed with DIE.

I was started on Decapeptyl for 8 months, then I've just had my first month of Zoladex. I'm in so much discomfort and pain. I've been started on a 25 mcg Everol patch ( HRT). The pain has gotten worse since I've been on it. I think it's a little better when I cut the patch in two!

I really do not know what to. I can't stay on Zoladex if I'm not on HRT. I have the coil already. I feel worse now than when I started on Decapeptyl and Zoladex ( I think!!). I don't know whether to come off everything and just keep taking codeine but then I have to take Senna!! I'm at a loss! Has anyone else been in this position?

Thank you!

[Chartolfrey]

Hi im awaiting a hysterectomy and ive been on zoledex 12 months next week.The 1st 3 months are the hardest as your body has to get used to the injection but by jab 3 i was vitually pain free and no more periods.

I tried the hrt patches and it made pain really bad so ive been on the tiberlone tablet once a day and that really helps.

Ive been told its a 12 to 18 month wait for surgery and i signed my consent forms in may, its a long wait especially ad ur either in pain from endo or menopause symptoms or emotional/mental up and down.

Things should get better but hrt patches were to steong for the severe endo/adeo ive got

[thebird1 in reply to Chartolfrey]

Hi,Thanks for replying. Can I ask how strong your HRT patches were? I also have both endo and adenomyosis.

I'll persevere. I've tried Tibolone but I couldn't tolerate it. It felt like it flared everything up and I felt low on it. My mood lifted when I came off it!

[Chartolfrey in reply to thebird1]

It was the 50mg combi. The tibeelone is good for me just plays my gastritis up so im seeing my nurse for my next injection on tuesday 11th. Its crazy how long we have to wait.

The zoledex is amazing and i dont get many menopause symptoms but been told i have to have hrt as im 38

[thebird1 in reply to Chartolfrey]

Glad to hear it is working well for you x I'm nearly 48 but they've said I need to be on HRT. To be honest I've felt better in myself on it but pain is worse x

[Chartolfrey in reply to thebird1]

Have they said u need a hysterectomy, thats what im waiting for.The injecrions are eaay and really helped the pain since number 3 its getting the right hrt for me.

Keep pushing with drs/consultant thats what i do

[thebird1 in reply to Chartolfrey]

Hi,Yes, I'm awaiting hysterectomy/oophorectomy and removal of endo again. They've done an MRI which showed thickening in recto-vaginal septum and uterosacral ligaments.

I've tried estrogen gel ( prior to medical menopause) but I had to come off it due to worsening of endo (2 years ago). It's just got to a point where I'm in pain daily so tried medical menopause.

Hope you find the right HRT x I'm fine with Utrogestan ( bioidentical) and can tolerate the gel and patch other than the pain!!

[MrsPaddingtonBear]

Hello

The pain you’re getting can be caused by a flare up due to the zoladex. This is quite common and I too had this. It does settle. Keep persevering with it. Cutting the hrt patch won’t make any difference as they are only a low dose anyway. I’m on those too. I had zoladex the prostap for almost two years with hrt before a total hysterectomy and stoma operation in 2023. Still on hrt for another 4 years. I had Endo and gynaecology problems for 20 years before the hysterectomy. It ended up that I bled constantly for 7 months prior to surgery and then they found lumps in my womb so there was a panic, thankfully 3 months later I got the all clear. Keep going you will crack this.

[thebird1 in reply to MrsPaddingtonBear]

Bless you! It sounds like you've been through a lot . You might be right on Zoladex front. I thought if I'd been on Decapeptyl I might not get too much of a flare up. That said, that's why they've put me on Zoladex as I think Decapeptyl stopped working!I took the estrogen patch off 24 hrs ago but I'm still in pain x Were you on painkillers whilst you waited for surgery?

[MrsPaddingtonBear in reply to thebird1]

Hello

I was on the injections for 2 years almost. I could only take paracetamol as I have medicine allergies. I also had migraines twice a month, sometimes twice a week and was severely anaemic. Gp was useless just said I was depressed, well not surprised if I was! I kept fainting and was really poorly by the time I had my operation. Sadly it became a medical emergeas they didn’t know my womb and bowel was fused together and both ovaries were fused to my abdomen aswell. Always here to chat.

[thebird1 in reply to MrsPaddingtonBear]

Oh goodness! No wonder you were in a bad way x That's my fear......the longer it goes on it's likely getting worse. They've said I have 'significant disease' but I'm on the routine list. I feel like I'm sat on a tennis ball! It was going into my bowel last time they operated ( recto-vaginal septum )X I guess there are so many of us awaiting surgery, it must be difficult to know who to prioritise!