Zoladex and HRT

[Ccn2018]

I was diagnosed with endo in 2021, it was removed from my abdominal wall but my pain never fully left. Just 4 months later my symptoms returned and the pain was as bad as it was pre-op. Here I am, 19 months later in significant daily pain. I am signed off sick from work for the 3rd week, and it seems to have increased in severity since I commenced on Zoladex and HRT 2 months ago. My third injection is due next week and I’m absolutely dreading it. The pain is just awful, it’s a pain I can’t describe and nothing helps. I have been on butec slow release patches for around 6 months, along with dihydracodine and etoricoxib. I am now on oral morphine and just feel terrible. If my pain is manageable I feel hungover, nauseous and am awake all night but tired all day. If I don’t take painkillers quick enough I am vomiting, shaking and unable to move from the fetal position and it’s very upsetting for my children to see me like this.

I was placed on the surgical wait list for a hysterectomy in April, I honestly don’t know how much longer I can wait before I take drastic action to end my pain. It’s so bad that I’ve considered injuring myself so that they have to operate! I know it sounds crazy and I’m sure I wouldn’t actually do it but sometimes when I’m in immense pain I will consider anything rational even when it isn’t.

My question is- what happens now? What do I do? If the Zoladex and HRT is causing me this level of pain, will a hysterectomy be any help at all or is it going to make my pain worse? I know it’s not a cure but so many people say it really gives them back a decent quality of life. I’m so depressed and honestly can’t imagine another day of this pain, let alone the rest of my life. I’m desperately close to giving up and the only thing keeping me going right now is my children.

Can I stop Zoladex or will this cause problems with a hysterectomy? Could it be the HRT causing more pain? What are my options? Anyone else had these problems with Zoladex? I’ve heard so many women say it’s great stuff and has stopped their pain so I don’t understand why mine is so awful!!

Thank you for reading this depressing sob story!

[Moon_maiden]

Hi

I had no success with pain and Zoladex at all, I did the full six months. I did have a hysterectomy along with excision that helped with the pelvic pain. No one can force you to have it if it’s not what you want. The Gynae told me it can take 2/3 months. I wish I hadn’t bothered, my emotions were so all over the place. It completely upset my hormone balance. Hormones are pesky critters for us!

Daily excruciating pain makes you feel that way, there were times I felt just as bad, Drs were just as useless with that as Endo. I found Duloxitine backed up with Oramorph and Diclofenac the best combination. Diclofenac is a really good anti inflammatory but you shouldn’t use it everyday because of potential ulcers.

Try to remember this isn’t anything you’ve done that’s made this happen, it’s a disease that has happened not a lifestyle choice. The pain is very real and if GP won’t help go to A&E. Ask GP for urgent referral to the pain clinic, although to be honest GP can prescribe anything they do. They did give me morphine capsules and intravenous once though which helped at the time.

I bought a rechargeable heat pad, I was practically living in it at one stage.

There are many of us that have ended up with severe daily pain, you aren’t the only one. I was diagnosed with Endo in 2019 at 51, I had confirmation op in Feb 20 and hysterectomy in Nov 20.

[Ccn2018 in reply to Moon_maiden]

thank you so very much for taking the time to reply. I’m glad (not that you had pain) but that I’m not imagining things - I’m certain it’s made my pain unbearable.

I don’t have diclofenac anymore due to having an ulcer so they’ve given me the etoricoxib which I take daily. Oramorph helps to some degree but it makes me completely useless, I can’t function at all on it.

I’m going to speak to my consultants secretary about stopping the Zoladex although maybe try this third one first and see if it does settle but as you say, I might wish I hadn’t bothered too! I’m hoping to get a date for my hysterectomy very soon. Really pleased that your hysterectomy has helped, I hope it helps me too. This hormonal rollercoaster is WILD!! c

[Moon_maiden in reply to Ccn2018]

We all have a pain threshold and pretty sure ours is quite high after putting up with crap periods. This can go beyond that at times, gnawing away. I used to feel as though there was an alien in there, thankfully that’s mainly gone after hysterectomy.

Last op a few weeks back I got the surgeon to sign my form of what I wanted, which was checking all over for adhesions. When you have the hysterectomy they should really have colorectal surgeon to make sure the bowel etc is clear of adhesions and Endo, it’s worth checking on exactly what the plan is.

Don’t let the consultant guilt trip you into carrying on if you don’t want to, it’s your body and they aren’t dealing with the crap 😂🤦‍♀️

Rollercoaster is one word 🤣🤣

Let us know how you get on with consultant.