Feeling nervous stopped zoladex & HRT 6 w... - Endometriosis UK

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Feeling nervous stopped zoladex & HRT 6 weeks ago and pains are coming back ++

ccsmith profile image
6 Replies

I stopped zoladex monthly injections 6 weeks ago. I’d been on them just over a year to see how I would be in the menopause. They took a good 5+ months to make me fairly pain free. I was due a hysterectomy, ovaries & bowel resection in December but with the waiting lists and consultant being off I’ve not been given a date yet. They advised I stop the zoladex as I’d been on it so long and was getting horrendous mood swings.

I’ve already started getting a bloated tummy, stabbing pains (ovary area) and generally feel ‘periody’!!

I thought symptoms wouldn’t come back for some time & I’m scared the whole year of settling on zoladex has disappeared so quick! Am I going to be back to square one whilst waiting surgery. I’m so low it’s taking so long and we booked a holiday in August to Australia as thought I would be all recovered by then. I’m now thinking I’m going to be bloated & in pain on our expensive holiday and I so desperately wanted to be normal!!!

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6 Replies
jelleytots10 profile image
jelleytots10

I had my last Zoladex injection on Christmas eve and had my first period shortly after my surgery in February and I’ve recently just had my 2nd. I’m still having symptoms as they didnt remove all the endo in my surgery but i have recently come off of the microgynon pill and gone on to a mini pill its too early to say wether its making a difference but are you on any contraceptive pills or anything? Is it something you would be ok with taking? If so I’d really look into it. Hope your feeling better soon x

ccsmith profile image
ccsmith in reply to jelleytots10

Thank you I’m not on anything! GP said to give my body a break! I keep hoping my surgery date comes through but I’m starting to think it never will happen. Thank you I suppose I will probably come on soon then! I stupidly thought it would last longer. 🙁 bloody condition

jelleytots10 profile image
jelleytots10

Oh really my surgeon said i have to be on something as it controls how quickly the endo grows and spreads and I’ve been on the contraceptive pill for 15 years i only came off it briefly to go on the Zoladex. Have you thought about looking into a different consultant/surgeon to have surgery quicker? The hospital I’m under aren’t very good I’ve had a lot of issues with them so I’m looking into being referred to another. Just something to think about? Xx

ccsmith profile image
ccsmith in reply to jelleytots10

Thanks I’ve always had faith in the surgeon/consultant. I’m on the joint list and I think he only does 1-2 a month so it’s taking ages. The consultant when he put me on the waitlist last year gave me a choice of staying on zoladex or having a rest off it. I decided to stay on as only thought it would be another 4-6 months but now I’m 10 months down the line 😤. I was talking to hubby this am and life has been on hold waiting for this surgery!

I’m sorry you have lost faith in your surgeon. It’s not comfortable when you don’t respect who’s there to help you. I am lucky as my usual surgeon left 2 years ago who was amazing and got me through so much. The replacement is less personal but is very honest and really engages with my personal thoughts. Both knew I was a nurse in the hospital and have been really respectful of that.

Emotionally I’ve been so low for some time and all the hormonal drugs we use seem to affect me badly. I’m starting to feel less anxious & stress now that I’ve stopped zoladex but pain is starting to come back - can’t win with this condition.

Thanks for answering me re the zoladex I must admit I’m scared of bleeding & pain again after a year with nothing!

Just read your message. I wasn’t sure how long you can be on zoladex! And same as you I don’t want to go back to how I was. In April I was told it’s a six month waiting list for hysterectomy but sadly I’m not sure if that’s true. Please let me know how you get on if you don’t mind.

ccsmith profile image
ccsmith in reply to

No worries at all. I think it’s advices for 6 months but people seem to be on it for different amounts of time.

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