Adenomyosis and zoladex : Hi, I was... - Endometriosis UK

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Adenomyosis and zoladex

Stareyes profile image
10 Replies

Hi, I was diagnosed with adenomyosis and pelvic congestion sydrome a few years back after finally being listened to by doctors and nurses.My consultant has started me on zoladex injections for a few months to see how my ovaries react. I've been straight forward from the start and prefably want a full hysterectomy but I have to start this treatment first.

I'm also booked in for a mri and mrv.

My question is has anyone else gone through the same process as this and finally got a hysterectomy?

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Stareyes profile image
Stareyes
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10 Replies
TennisCourt profile image
TennisCourt

Hey lovely. Do you mind if I ask your age? I’m 26. I ask cos mine is against me in this situation.

I just had my first lap two weeks ago, no Endo but “looks like adenomoysis” and I’m due to have an MRI to try look further.

My periods are traumatising. I don’t think I can physically and mentally take them for another 25/30 years. Never mind adding on all my gastro issues and problems 7 days a week.

I have been suggesting hysterectomies to medical professionals the last year and I get met with a face like this 😱 every time. I understand I’m young and have no kids, I understand there can be complications and it’s a big operation.

But I have no quality of life like this. I haven’t been able to go on holiday in a couple of years incase my period comes (as they are not regular) and I need certain meds, medical attention, gotta just lay on a towel the first day or so cos it’s so heavy. I’ve been robbed of my 20s.

I only want to start with a conversation with a gynaecologist just to explain the hysterectomy process, just to start with but I can’t get that atm.

I didn’t know they were going to make you take treatments first 😔 they push birth control on me every visit (gp, a&e, consultant) which I decline as I know my body and it does not react well to birth control.

Sorry I’m no help just feel in a similar position so thought it would be good to share. It’s such a hard journey isn’t it.

Ps: when I got told it could be Adeno I did join a Adenomoysis fb group and people in there are getting hysterectomies alllllll the time so maybe worth a shot looking in that for people to share their experiences xxx

Stareyes profile image
Stareyes in reply toTennisCourt

Hiya, I'm 29. I was sterilised 2 years ago as my pregnancies weren't very good. But since being sterilised I've been diagnosed with these conditions.So sorry to hear what your going through. No one truly knows the pain your going through until there in it themselves.

I was the exact same with birth control that didn't work.

I was shocked when they offered treatment its every 4 weeks and an injection into the belly which puts you into a chemical menopause .

Ah I literally just joined that group- well waiting to he accepted thankyou xxx

TennisCourt profile image
TennisCourt in reply toStareyes

Aww bless you.

I got sent up to A&E once on a period and the gynaecologist laughed at me when I said about a hysterectomy. MALE may I add🤦🏽‍♀️

I was offered chemical menopause before my surgery when they thought I had endo but there seems to be a lot of side affects to that which put me off😔

How did you get diagnosed with pelvic congestion syndrome? I need to look more into that

I hope you can get further with the doctors soon lovely. Its such a hard fight xxx

Stareyes profile image
Stareyes in reply toTennisCourt

I've only had the one injection so far and only side affect I've had is the hot sweats. If it helps the pain if might be worth it.

I had a mri and a ct scan on my ovaries which confirmed the pelvic congestion syndrome.

TennisCourt profile image
TennisCourt in reply toStareyes

Bless you. Hope everything goes well for you xx

foosey profile image
foosey in reply toStareyes

I couldn't agree more. It was like a miracle drug when I was on it on and off for about 3 years. Yes I got hot sweats but the relief from the horrendous pain was more than worth it. I cant recommend it enough if you suffer with crippling pain.

foosey profile image
foosey in reply toTennisCourt

It was like a miracle drug when I was on it on and off for about 3 years. Yes I got hot sweats but the relief from the horrendous pain was more than worth it. I cant recommend it enough if you suffer with crippling pain.

Sunset-lady profile image
Sunset-lady

I'm the other way round. Suffered terribly with periods until mid 30s then it got better but returned in peri menopause. Went in for hysterectomy after years of suffering and fibroids only to find I've stage 4 endo, adenomyosis, fibroids and cysts and it's now too complex to do. Everything is stuck together. I'm 50 so they want me to go through menopause (like it's a magic door). I'm on zoladex to try to shut it all down. I'm hemorrhaging a lot and I'm anaemic. I've bled almost constantly for 20 months now. I'm praying zoladex will work. They don't like doing hysterectomies now like they used to. I think it's the worry of prolapse but that's quite rare. Good luck x

Rainbow2468 profile image
Rainbow2468 in reply toSunset-lady

They tried pushing a hysterectomy onto me but I didn't want one, I'm trying prostrap injections and they have been marvelous 😊

Rainbow2468 profile image
Rainbow2468

I'm on prostrap injections, I have adenomyosis, endometriosis, cysts and fibroids. I was bleeding all of the time before, these injections. I'd rather not have a hysterectomy far to risky due to my research. Hope you get things sorted out x

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