zoladex : Hi there, I am post two failed... - Endometriosis UK

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zoladex

AvaMax profile image
21 Replies

Hi there,

I am post two failed laparoscopy’s. Latest treatment for me is that I’ve been put on zoladex with the view to a full hysterectomy in 6 months time.

I’m worried about the fast onset of menopause. Any advice?

Many Thanks 😊

21 Replies
Steffers profile image
Steffers

Hi there, I am similar to you. Since having zoladex I have experienced hot flushes and night sweats, not noticed anything else as of yet! I’m not having any hrt at the moment I’ve not had a laparoscopy, have had an ablation which stopped the bleeding but no relief from the pain. I have suspected adenomyosis

I have had a monthly zoladex injection for 3 months then had a gap (pain returned) had another injection in July which lasts 3 months, gotta go back to see gynaecologist in October (am on the list for a full hysterectomy)

Hope this helps, I have a fan for the hot flushes, cold water in a hot water bottle as well ☺️

Take care

AvaMax profile image
AvaMax in reply to Steffers

Many thanks for taking the time to reply.

It’s interesting and good to know it hasn’t been too horrendous having zoladex.

I’ve had two pointless laparoscopy’s where they have said that my whole uterus is meshed with endo and into my bowel. They now have decided the only was is hysterectomy with gynea and bowel surgeons. I’m nervous but it is what I’ve been asking for for two years. The laparoscopy’s have felt so pointless.

Well let’s see I guess!

Lindle profile image
Lindle in reply to AvaMax

Were the surgeries done in an endo centre?

AvaMax profile image
AvaMax in reply to Lindle

No? I’ve never heard of an endo centre? I was in a general hospital but waiting a long time for an endo consultant. Should I be looking for an endo centre.

CryBaby91 profile image
CryBaby91 in reply to AvaMax

Yes absolutely! Have a look on the endometriosis.org website, that's the charity who runs this page. Endo involving the bowel needs a BSGE center, or they can do more harm than good. Xxx

CryBaby91 profile image
CryBaby91 in reply to CryBaby91

Lindle has fab links for finding a center, I'm certain she will help more than I can currently but yes absolutely I agree you need a BSGE center. Xxx

AvaMax profile image
AvaMax in reply to CryBaby91

Crikey thank you. I will look into this asap x

635703 profile image
635703 in reply to CryBaby91

Personally, I ageee. Would not have anyone near me as a Dr who was not a BGSE surgeon. Even if I did t have bowel involvement.

I have it in the pouch if Douglas and so rectovaginal canal involvement here.

My next appointment is Feb 2023!

El_Nino profile image
El_Nino in reply to AvaMax

Hi there - I was similar to you, with success on Prostrp but full knowledge that I really required a hysterectomy as everything was fused and adhesions all over everywhere along with patchy endo. I was 41 and as my ovaries were going i required HRT for around 10 years. I had some difficult times on HRT, including a loss of confidence, and brain fog to a degree. But my take on this is that we are all ageing and our bodies an emotions change through our lives - think about a twelve year old versus a 18 year old - just a 6 year gap but wow what a difference. I think about the menopause in a similar way - our bodies are changing and it's natural that they do that. As teenagers going through puberty we were confused, sometimes cocky, sometimes, timid etc etc. I think it's a good idea to expect some emotional fallout, but then, isn't that life - with the right support and understanding we can get through :) I came off the HRT by choice (without doctors approval) at about 48 as I wanted to be rid of fake hormones by then....I've been absolutely fine - I exercise and try to keep my with/alcohol intake under control and live a healthy life. I'm now 53 and am through the menopause fully. I hope this helps - its not an easy time, but Ive never thought life to be easy yikes!! Good luck x PS my womb was stuck to bowel too - my surgeon was a gynae consultant at the hospital - I was under much longer than expected as there was a lot of separating to do. This was 11 years ago - not sure there were endo centres then so please don't be too anxious about your op.

AvaMax profile image
AvaMax in reply to El_Nino

I cannot thank you enough for your reply. I was assigned my own menopause nurse as a point of contact. That week I emailed her with a lot of questions- she took her time and answered all my worries. I have also been assured that it will be the best gynaecologist consultant they have working alongside a bowel specialist for my pelvic clearance- I think I’m ready for that now BUT I’m going to get a second opinion at an endo centre just incase.

My letter today confirmed significant endometriosis, uterus looked adenomyotic, bilateral haematosalpinx with buried ovaries, extensive adhesions and bowel adherent to back of uterus. Quite busy in there!

Thanks again- I agree, change happens x

El_Nino profile image
El_Nino in reply to AvaMax

Oh sounds like you’re in a good place now with lots of info to prepare you. And - you’re insides sound very similar to mine!!! And I’m just fine now with no gynae issues at all since my op so really good luck with yours and here’s to a healthy you on the other side xxx

JulesUK profile image
JulesUK

I had zoladex twice. Once for six months and then for two years with HRT. Yes there were some side effects but the treatment did help with the endo symptoms. I’m concerned that the only option they are offering you is a hysterectomy whereas what you may require is an specialist endo surgeon? Unless of course a hysterectomy is what you want.

AvaMax profile image
AvaMax in reply to JulesUK

Hi there,

I had been pushing for a hysterectomy as I felt it was the the only option to get it all out and done. I may be naive here but do you believe there’s other options?

Thank you so much for discussing with me.

CryBaby91 profile image
CryBaby91

I have a hand held rechargeable fan for the hot flushes! And a rechargeable larger fan for through the night :) it is really helpful. The mood swings have been hard tbh. And the nausea in the first 2 months was horrible! I've not actually found anything to help with the side effects yet, but I'm just trying to keep in mind that if I come off it all the endo could start up again really rapidly. Which would be worse. I do still have pain but it is all dulled down now. I guess it is all just a trade off, something feeling better for something else being worse lol. Crap situation sadly! Xxx

JulesUK profile image
JulesUK

I just wonder if there is a specialist who can perform your laparoscopy and remove the endo. (Sometimes requiring more than one doctor at the same operation). I think the hysterectomy sounds like the easy option for them instead of finding the right surgeon/s who can do it. For me the best thing I did was having a Mirena coil inserted at the time of the laparoscopy where they removed the endo at the same time.

AvaMax profile image
AvaMax in reply to JulesUK

I had the marina coil fitted a year ago. Not much change from that sadly

JulesUK profile image
JulesUK in reply to AvaMax

Ah that’s a shame it has literally changed my life. I think though you need all the endo removed first for it to help. Wish you all the best I hope you get the right treatment x

635703 profile image
635703

Read up about peri menopause (probably natural solutions alongside medicine) and ask for HRT. I take tibilone HRT tablets with zolodex.

I’m also on an SSRI Citalopram for low mood pain cycle (anxiety and depression). And Amitriptalyne for face pain/TMJ (Trigeminal neuropathic pain). Both of these help with pain. Lots of women with Endo have jaw problems as we clench due to stress and pain.

So you may consider enquiring about these options from your doctor. New beliefs are saying antidepressants don’t work for depression….they lifted me for sure. The amitriptalyne I take at night as it makes me sleepy, this blocks the nerves so the pain isn’t as bad!

I’m so exhausted with it all right now - hope that helps. Apologies haven’t read the other replies. All the best x x x

AvaMax profile image
AvaMax in reply to 635703

Apparently I can’t have HRT as they are trying to completely kill everything in order to perform the hysterectomy. I think I’ll have a long chat with my menopause nurse tomorrow 👍🏼

635703 profile image
635703 in reply to AvaMax

Sounds sensible x

Cloverwolf profile image
Cloverwolf

Interestingly red bush tea really helps with hot flushes not sure why.

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