So i was initially on Decapeptyl injections and due to collapsing twice and causing facial injuries and being unconscious for a long period of time, it was thought that i may be allergic to them so i was swapped to using Zoladex injections once a month instead.
The swap over wasn't too bad, but i am still having flare ups every month about a week after i've had it administered. I haven't had any periods since Feb this year, no bleeding. But the pain has continued, sometimes a lot worse than it was before. I had surgery last May - to have more intensive surgery on my ovaries due to the cysts or to have an ovary removed to relieve the pain. When i woke up, i was devastated as i had gone through the pain again - to just have my ovaries skimmed, and the endo remain over my bowel, pelvic wall and ovaries.
I have a lot of bowel pain when I need to go to the toilet, that sometimes i cant move, painful sex which has its own complications and a lot of low down ovarian pain.
I spoke to my consultant on the phone about 2 months ago and he booked me in for surgery on 19th Jan, to have another operation - to have my ovaries stripped from the inside to get rid of the cysts (as we now have my egg count result, which should leave me with enough). And the plan was to remain on Zoladex for 3-4 months after to let everything heal before trying to restart my ovulation.
I didnt hear anything from the hospital regarding this, so i called my consultants secretary. My Consultant has cancelled my surgery - without telling me. He said that he didnt realise had had already completed my surgery - and he didnt need to operate again, but he would see me face to face. There seems to have been confusion on my consultants side but my point or view is not heard.
This has completely messed with my head, my relationship, and my confidence and made me so tearful and worried. The plan that i made over the phone with my consultant was so hopeful, we had a really strong plan and it was the surgery I've needed all along. AND I WAS FINALLY GOING TO GET IT!
I felt like i took 10 steps forward finally, and now ive gone back 15.
I just wanted some support really, its so hard to be going through this time and time again and trying to plead your case to Drs and Consultants.
The pain and discomfort, is not normal, and its not to be acceptable.
Thanks for reading,
Sally
Written by
Endoarmy92
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I’m one the health unlocked moderators for Endo UK. I’m so sorry you’re going through all of this, I appreciate how frustrating and difficult it is. I can imagine how devastating the cancellation must have been. Have they given you any indication of rescheduling the surgery? It might be useful to start a pain and symptoms diary, it often highlights triggers and patterns and it’s a document you can take to your health professionals to help them understand exactly what your going through. Treatment wise, i appreciate you are in Zoladex, have they offered any HRT with this or any other treatment alongside it to help manage the potential side effects? I’ve attached both a template for a pain and symptoms diary and a link to info on treatments available. Support wise, we are of course here on this forum, however there are a number of local Endo UK support groups across the UK. It can be a great resource to know you’re not alone and pick up hints and tips from others on managing the condition. I have popped the link below for your reference. There is also an event that Endo UK are running in January about the psychological impact of endo, it might be worth joining that too. You’re absolutely right it’s not acceptable to have to fight like we do, self advocacy is a big part of managing endo and it really shouldn’t be. I hope this has given you a good starting point and we’re here should you need us.
Thank you for getting back to me, i really appreciate it. I did discuss HRT previously, but they wanted to see if things settled down before being put on it. I was only supposed to be on the Zoladex implants for 6 months, and now it seems like there is no time specified, and they want me to remain on them with no end plan - which is horrible as it is!
No plan to have the surgery scheduled, i know there has been a mix up by the consultant, but now i need to go back to waiting to see him face to face before i can speak to him again which could take months, and then to go back on a long waiting list again for the surgery itself.
I used to know the signs, symptoms and triggers for the pain, but now i dont ovulate and everything is 'shut down' so to speak, its hard to pinpoint the pain and triggers.
Thank you for sending the links, i didnt realise there was a support group in my area, i will join that! x
Sorry you're going through it so badly. I found Zoladex did nothing to help my pain. Just a thought, is your consultant an Endo specialist? The way they've read your notes, offered you surgery and then not communicated with you, I was wondering if it would be out of their jurisdication and you should be under a proper MDT that would involve a colorectal surgeon, urologist etc.
It's horrendous they've left you in this position regardless of anything else and you should put in a complaint that this has hindered your condition and life. I'd imagine complaints are inundated as well, but be persistent.
It's a fight to get anything and hope is so very important in all of this, although I'd go five forward and twenty back at times. Mentally it's very hard to deal with. Work out what would help with 'hope' and put a plan together to get there. Happy to help if you need to put some theories out there
I was initially supposed to be on Zoladex for only a few months, but its now approaching over 6 months. I havent felt much difference being on them apart from low moods and anger which has been enough! The consultant i have is known to be an endo specialist. I just felt so let down as when i spoke to him on the phone we had such a good plan for the next surgery, which is what ive hoped for for a long time and then to be told it wont happen, just hits me like a tonne of bricks. Everyone with the condition just hopes for relief - and when your given it and its taken away, it just hurts.
I think everyone gets to a point where they give up hope a little bit, and i think that is where i am now!
Thank you, i would appreciate your help if you can offer me any advice
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