I've been on Zoladex since the end of December. I'm on it for excessive bleeding. I had an abandoned hysterectomy last September when they found stage 4 endo. After this I saw an endo specialist privately and he put me on zoladex. I had an MRI which showed a lot of endometriosis which has fused my bowel to my cervix and left ovary. I have several fibroids, adenomyosis and an endometrioma on left cyst. Endo in POD and it's pulled my rectum high so every stool movement is like being piped through an icing bag. Sorry for the explicit simile! Anyway zoladex made everything go crackers at first as it stimulates your ovaries but then it calmed and I had 6 wonderful weeks in March and the beginning of April where I didn't bleed. I cannot explain what NOT bleeding is like when you've bled every day for 21 months. It was incredible and I felt amazing not being anaemic. I am on the 3 month injection and due the next one on 19th April. On the 9th April I started to bleed. I rang the hospital to try to get the injection early and was told no. I carried on but then the bleeding got much worse and since Tuesday I haven't been able to leave the house or go to work. I'm losing so much blood and huge clots (size of the palm of my hand). I look dreadful.
Has anyone experienced this? I guess the zoladex has completely ran out but this response from my body is extreme. I don't know why I'm bleeding like this and nobody can tell me why either.
Any similar stories out there? Xxx
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Sunset-lady
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I have been on zoladex for 4 months whilst waiting for my radical hysterectomy next Tuesday. I have stage 4 endo in similar locations to yours, I bled to start with on zoladex but nothing then for the last 3 months. It shouldn't be restarting bleeding until off zoladex for a few weeks so I would definitely talk to your gynaecologist and get it checked. The only difference is I had the 4 weekly injection so maybe that makes a difference? Hope you get some advice x
Thank you for responding. If I wasn't at the hospital tomorrow I'd be going to A&E as it's crazy. I know with some women the implant runs out early so I probably need it every 10 weeks or monthly! I'm also really concerned that the zoladex is just masking all of this. I see the endometriosis specialist in June and I'm going to ask about a hysterectomy. It will be a seriously big operation but I think I'm going to need it. This could go on for years. I'm hardly taking any HRT now so I don't believe it's making me bleed. I can't work like this - I can't even leave the house.
I’ve been on the 4 weekly jabs for 7 months now and they do seem to “run out” about 3/4 days before the next one is due. Anecdotal of course, I just notice the symptoms creeping back in a few days before the next one was due. I hope you get some help and relief from it soon x
So sorry to hear your going through such a rough time. I was on zoladex for 13 months then prostap as the bleeding returned on zoladex. It was just like you a disaster zone. Prostap didn’t help I bled for 7 months constantly. Last October I had a hysterectomy. That went wrong, became a medical emergency as they found my bowel stuck to my womb and ovaries stuck down as well. After stopping the surgery to call my husband to say it was 50/50 I’d make it as my bowel was cut, they managed to repair everything, do the hysterectomy but had to fit a colostomy bag to save my life. I’m now signed off from gynaecology after 20 years ( my consultant cried!) had the confirmation of no cancer and am currently waiting for surgery in June time to reverse the colostomy. Perhaps they will reassess you and involve a bowel surgeon and you can both make an informed decision as to whether you want to proceed with another surgery. I had no idea things were so bad inside my consultant hadn’t done any scans for two years prior to surgery it was a massive shock all round. I spent 11 days in hospital 4 of those completely wired up to drips and drains with a morphine pump to press myself very scary times. I’m back driving and back teaching reading to little ones so some normality back. Good luck I hope they look after you properly.
Morning lovely, I've followed your story because you had your operation at the same time as mine was abandoned. It's been a long journey for you. I see the endometriosis specialist in June and intend to add him about this. How has living with the stoma bag been ? X
Stoma was a major shock. Not only for me and my husband but the surgery staff and ward staff. I couldn’t take it in at first. Thankfully I’ve had a great consultant and I have a great nurse team. They said name your stoma to help you deal with it so I have “ the gremlin” It’s a bit temperamental and unpredictable and can go a bit haywire if it’s not happy lol! I’ve had a few issues along the way. I refused to even look at it for nearly a week. Then I had no choice but to deal with it. The lovely nurses showed me how. It’s a case of if you can’t deal with the care of it you can’t go home. There’s been many tears and tantrums, and not just from the gremlin, it does change your life, but I’m trying to not let it rule my life. I’ve got a big party next month for a big birthday and I’m having family and friends from far and wide to celebrate I’m still here and fighting. We can and will conquer this, keep strong.
Just here to offer solidarity after 2.5 years of almost continuous bleeding. It is utterly exhausting. As women our natural rhythm is to rest and go inward with our bleeds. When you bleed permanently it causes a continual sort of depression, my life has felt on hold.When I had a mirena coil taken out last summer, the bleeding became scary heavy like you're describing and I ended up in a&e. Unfortunately it wasn't taken that seriously, so many medical professionals just dismiss this stuff as a heavy period. But bleeding like this is not normal, it's dangerous. I would encourage you to get to a&e and kick up a fuss. I know easier said than done, but we can get so used to bleeding and put up with too much, speaking from experience.
I went on to the mini pill which temporarily stopped the bleeding for 3 weeks.. They were the best 3 weeks of the last 2.5 years. The relief to not be bleeding was so immense! But it came back with a vengeance, currently holed up at home as bleeding again and it's too heavy to do anything. So depressing. I'm now waiting to start zoladex while I await a hysterectomy (hopefully, if the endo isn't too bad) so it was very interesting to read your story, thank you for sharing.
Thanks so much for this. I think you are spot on about the depression. I think my mental health has really suffered. It stops everything including being intimate with your partner. It's so isolating and deeply traumatic. It has made me very sad. You are right that the medical world dismiss you. I begged to have my zoladex injection early but they refused and I'm sat here now waiting for it. I'm back to the beginning again because there's no wrap around care.
I completely relate to all that you say here. This disease affects so much, it's horrible. So many of us suffer, but it's a sort of silver lining to know we're not alone.Have you spoken to the specialist who prescribed you the zoladex? It's usually only them that could change the prescription I think, which may be why the hosp couldn't do it earlier. If you haven't already I'd tell him what's happened and hopefully they may be able to up the dose or bring them closer together?
Yeah I spoke to him today. He's really great and is happy to do it earlier - it's the secretaries who speak to you poorly and refuse to help x I've had it now. Hurt ad usual. He says I won't be back to square one so fingers crossed. He has no idea why I'm bleeding though other than fibroids. It's just awful.
Thanks lovely it us utter hell particularly as the consultants have no answers. I've just done a post this morning on bio identical progesterone therapy and I'm going down thus route. It makes sense to me and the research is incredibly interesting. I just feel women's health us not being taken seriously in this country particularly gynaecology. Yesterday's appointment with the consultant was just ridiculous. He has NO IDEA why I'm bleeding and he's not interested; the penny finally dropped yesterday and I realised that I need to fix myself. I need zoladex to do that as I cannot do the research or follow anything when I'm hemorrhaging. I hope you are good and feel balanced. If you want to know more then look up Gemma Banks holistic menopause coach on Facebook - she had a hysterectomy too xxx
Totally agree, Some of these supposed experts seem to be pretty clueless in my experience.
I actually had counselling for a few months after my op not re the hysterectomy that was actually fine, but the fact that the constant haemorrhaging prior to having the op had been really traumatic.
I think I was suffering from PTSD! I feel totally great now and haven’t felt better, but it was a rough time.
Hope you get the answers you need, will check out Gemma Banks x
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