zoladex/HRT pending hysterectomy

[Ccn2018]

I started on Zoladex a week ago, alongside HRT. I am on the surgical waiting list for a hysterectomy with a view to keeping my ovaries as I am 34.

Since the injection I have had a horrible stomach ache (alongside the usual crippling pain) but I can’t eat, I feel nauseous and I can’t open my bowels. I don’t know if this is the HRT or Zoladex but so far I’m feeling pretty crap. Does this pass?

My recent MRI was normal but I am in daily pain. It’s extremely severe mid cycle and before my period, particularly when my cervix is moving about. More recently the pain has increased significantly mid cycle and I can’t stand or walk, I vomit and shake from pain despite being in butec pain patches. I really am at a loss, I’m struggling so much with this situation and whilst I am on the surgical waiting list for a hysterectomy I can’t help but cry everytime I think about it. It feels so final, I want the pain to end but it feels like a really drastic decision to be making at my age.

Is this a normal way to feel or am I feeling this way because I’m going to regret having a hysterectomy? Perhaps this is just me adjusting!?

Sorry for the rant, need to let it out somewhere where somebody will understand!

Thank you! X

[Endolemon]

hello,

I am waiting for hysterectomy too. I think it is very emotional decision. My hope is that it will help with pain, fatigue and bleeding of course .

I had Prostap injections and pain is gone for now and I am asking myself if this decision is right? But I am sure the pain will come back sooner or later . And I can’t live with it. We need to choose a lesser of two evils 🤷‍♀️

Are you taking Counselling sessions? I am feeling better when I can speak about my situation with a therapist .

💛💛💛

[Ccn2018 in reply to Endolemon]

Absolutely this… on the days where it’s under control I wonder if I need a hysterectomy and then the days where it’s awful I’m desperate for it.

I haven’t been offered any counselling - how do I request that? I suspect there is a huge waiting list…! X

[Endolemon in reply to Ccn2018]

It is free from NHS and you don’t need referral:

nhs.uk/service-search/menta...

I have been waiting 2.5 months. Maybe you need antidepressants, you can talk about it with GP.

Of course it is hard to decide when you are young, I am 46 but I don’t have children.

I had polyps twice in my uterus, now fibroids and Endo attached, so it is going worse by the time .

I haven’t been on HRT with Prostap. Try stop to take it (if it is pills) and see if you feel better.

I wish all of us the best anyway 😊xxx

[Awwy]

Hi,

It took me 3 months to settle on zoladex injections and HRT. I think the initial rush of hormones makes you feel worse before you feel better. It felt like my bleeding and pain were much worse.

Having a hysterectomy is a huge decision and you are only young! Its so final isn't it? It took me time to come to terms with it too. Your feelings are perfectly natural. I have been waiting for 3 years for my operation. It has given me the time and space to get my head around it.

I personally feel that counselling should be offered to all women with endometriosis. To deal with the pain, symptoms and everything else that comes with having this awful disease.

I went to a private psychologist who helped me immensely. I know that's not an option for everyone.

You can try through the pain clinic? Have you been referred? They have access to services that might be able to help.

You are not alone. Take care of yourself. 💜

[PinkChi]

I had a hysterectomy (leaving ovaries) in July 2021, when I was 35, due to fibroids. When I had the surgery they found that I had severe endometriosis that hadn't been picked up on any scans. I had been on Zoladex before my op to try to shrink the fibroids. Three months after my op and last Zoladex injection the endometriosis pain was so severe that I couldn't sleep and honesty felt life wasn't worth living. I went back on Zoladex with addback HRT and it has massively improved my symptoms. Currently waiting for a date to remove my ovaries, given that Zoladex shuts down your ovaries the thinking is that this is the most permanent way to manage my symptoms. I guess everyone is different, just for me only removing my womb didn't work. Wishing you all the best with your treatment x