Zoladex and HRT add back

[Peren]

I’ve had op to remove endo and cut adhesions. Dr prescribing zoladex and hRT add back therapy. I’m 35 and just concerned about side effects. Does anyone have any experiences they can share?? Good/bad/ugly? X

[MMary-Moderator]

Hi Peren,

I had zoladex and ad back therapy for 9 months a few years ago. I unfortunately felt the side effects out weighed the benefit of having them but at the time I had not had my endo removed like you. Everyone is different and others have had a really good experience of zoladex. I did a lot of research before starting them so I was prepared and didn't beat myself up about what was happening to me. I had hair loss, my breasts went saggy, horrendous morning sickness, vaginal dryness and I had very bad hot flushes but I dealt with it by having gel packs in the freezer for the night time, carried around spray water in my handbag, I had regular hair trims to try and help my hair to stop breaking off and wore padded bras. Now you would never know I had issues so the side effects do reverse pretty quickly but like I say everyone is different. The upside was that I was period free and pain free after my 6th injection until I stopped the injections.

You might find our treatment information pack a useful read: endometriosis-uk.org/sites/...

Best Wishes,

M Mary, Endometriosis UK

[Peren in reply to MMary-Moderator]

Thank you. I hope you are doing well now. X

[Starry]

Gentle hugs , I hope you are recovering well from the operation.

Afraid mine was ugly even with add back but I've read of other success stories, and we are all unique. In my case I had a pretty large active Recto Vaginal endo nodule which was probably hormone resistant. I had every side effect imaginable. Nausea, retching, memory loss, significant cognitive issues, joint pain which lasted 2 or 3 months after stopping treatment to name a few.

May be worth asking surgeon if there is a particular proven benefit post excision, as usually endo just returned when treatment is stopped, and it's a lot to put your body through trying to recover after an excision operation.

To help weigh it up and reach your own decision, I think there was some information in here on best practices

eshre.eu/Guidelines-and-Leg...

And this referenced trials with and without zoladex about recurrence risk.

ncbi.nlm.nih.gov/pmc/articl...

[Peren in reply to Starry]

Thank you. X

[Cola71]

Hello,

I had 6 months of zoladex before my second lap, aged 44. The first month wasn't great as my hormones flared up and I had a really heavy period with extreme symptoms - my endo also affects my bladder so I get what feels like severe cystitis on top of other stuff. It felt awful at the time, particularly as I hadn't been warned this might happen. But after that first month my periods stopped and I didn't have any bad side effects with the add back HRT. To be honest, it felt like getting my life back for those 5 months as I was symptom free for the first time in 30 years. I did have hot flushes once I stopped the HRT and the zoladex was wearing off, but that was it. I hadn't wanted to go on it after reading everything online, but overall I was glad I did.

After my lap, I had a mirena fitted and this worked in suppressing my periods and endo symptoms for about 18 months. I now take back to back Cerazette too, which so far has worked to stop the symptoms. The surgeon wrote to my GP suggesting another round of zoladex, but we discussed it and felt it was a final option due to the limits on time you can have it.

I hope this helps and that you find the right choice for you. X

[Peren in reply to Cola71]

Thank you for your reply.

Your experience is helpful as I’ve onky heard negative things to date. The specialist has suggested merena once I come off zoladex, presuming I start it. X

[Leese16 in reply to Peren]

Hi! Hope you are doing well! Sounds like you have lots going on at the mo and decisions to make etc. I had zoladex for 6 months. I was totally pain and bloat free but im afraid the side effects have been terrible. I totally regret taking it...but then i know people who have been totally fine. The effects to my hair and my mental health are ongoing. Two months now since my last injection and the pain and bloat is back x