Zoladex - did it stop your periods?

[Lula74]

Hi, all,

I've had horrendous periods due to fibroids for years, tried various things. Long story short I ended up in A&E last month and needed a blood transfusion. I'm on the list for a hysterectomy and they gave me a zoladex implant to put me into temporary menopause to stop my periods and keep me safe while I wait.

Only I have had a period yesterday/today, a month later and over three weeks after the zoladex went in. Luckily tranexamic acid is keeping things under control, but it's still pretty heavy, I've been resting with a bag packed in case I needed to go back in.

Wasn't this supposed to not happen? Will I just carry on having periods? The info on zoladex says it stops periods for "most" women. Is it just too soon, ie I've only been on it three weeks, and hopefully it'll work and this is my last period? I've also had none of the side effects yet that they warmed me about, hot flashes etc. Maybe it hasn't worked?

Any experiences you're willing to share gratefully received!

@itsgettingweird Can I ask how much norethisterone you took daily? I'm wondering if I could advocate for reducing my dose slowly, I've seen someone on here say just one tablet a day kept the bleeding at bay and maybe they'd let me take that long-term...?

Thanks @Lula74 that's reassuring but sorry I interrupted your holiday for my selfish purposes. Hope you've had a lovely break.

I actually cried when the doctor confirmed that they'd do the injection so that I could be slotting in for surgery. I know the Zoladex is a necessary step for that but so much unknown at the moment.

C5 are doing a series on Women's Health (Tuesdays, 7pm) and last night's covered fibroids and the woman involved had more and bigger fibroids than me and had laproscopic surgery so know I'm questioning why mine is open.

I hope that you can get a resolution and way forward with the norethistorone. I totally understand your apprehension/ fear of the bleeding. I'm really hoping the Zoladex does stop it for me for the respite and hopefully a chance to get my iron levels controlled before surgery.

Yes, it does totally suck.

@ConfusedGin No worries at all! Home now.

So glad you are finally getting a date for your surgery. I was hoping when I got home I would have a letter with my date, but nothing yet. The waiting is hard.

I'll look out for that programme, thank you. A friend of mine had (warning: huge grossness alert) large fibroids removed laparoscopically because they used a morcellator to chop stuff up internally and suck it out, but she had smaller fibroids than mine. I've also been told I have to have the full open op, but apparently one of mine is "bigger than a baby's head" so can't go through cervix/small incision. Maybe there are some that are just too big.

I hope I can get off the norethisterone without bleeding, I'm just a bit scared to try. I dropped my haemoglobin 35 points last time and 45 the time before, can't be good for the body...

Let me know how you get on, sending much love 💜

Yes @Lula74! The surgery they showed on Channel 5 had the internal cutting and honestly, it was a lot to watch over dinner.

Sorry you didn't have the letter you wanted. Honestly I have the direct dial of my surgeon's secretary and a lady in admissions and I just kept hounding them. My GP surgery, cannot be faulted throughout.

I've just started norethistorone as I was still bleeding heavily into a 3rd week and I couldn't deal with it. Plus I have some events this week that I can't handle deal if I still have the fear of having another unexpected and sudden flood like I've had this period. The Zoladex can't come quick enough.

Hey, @ConfusedGin how are you getting on? Did you get the Zoladex?

I have, after a stressful couple of weeks trying to speak to someone, finally got the green light to keep taking the norethisterone, and my GP is writing to the consultant to tell them that that's what we're doing and see if the surgery can be speeded up a little because I am more kind of limping along than happily waiting. Fingers crossed! it's been 2.5 months now on the wait list so maybe I can hope I only have weeks rather than months to go, and the norethisterone will hold me steady. I'm physically uncomfortable a lot and have some menopause symptoms, and GP unsure whether I can take tibolone and norethisterone together so I'm going to ring consultant next week (sec is on holiday this week) and ask.

Any news on a date for your myomectomy?

@Lula74 Injection is next week and I am excited. But did some reading and am now wobbling over I should have the one larger dose the GP has said about or 3 smaller monthly doses. That seems to be the NICE guidance so I'm tempted to ask them to follow that. But I'm a rule follower.

I am expecting one last bleed to start before the injection but I'm happy to think it may be the last for a while. It will be a year between when I agreed to surgery and when I get it. 18 months since my first GP appointment.

Glad you got your norethistorone sorted and your GP is stepping in. I know norethistorone doesn't work for everyone but it feels life changing when it does. Keep on with the hospital

@ConfusedGin Ah fab, hope it works for you. I had one month then three, but I think they were expecting me to be on it a while. This one should last me till mid October.

I am now on a year since first GP appointment, but I jumped the queue to see the gynae by bleeding so badly I collapsed and got admitted to the ward, otherwise it's a year wait here now if you don't have cancer. I really, really don't want to bleed again, GP estimated I lost three pints last time which is not sustainable. I just need to get rid of the damn things now! But at least I have more norethisterone to keep me going. I wish I could trust that the zoladex alone would keep things at bay but it didn't last time.

This will all be in our pasts soon!

@Lula74 Update if you're in any way interested in me

I can now answer your original question and no. It has not stopped my periods immediately. It is lighter, definitely although still some clots and floods so sigh. Otherwise though, seem fine with no other side effects to date [touch all of the wood]

Surgery is looking likely for 8-10 weeks from now so mentally preparing for that now

Hey! Thanks for updating. Always interested! And yay you have surgery soon, that’s fantastic. I rang to find out about mine and all they could tell me was “next year” 😩😩😩

But currently well, tho I’m still on the norethisterone. I need to give not taking it another go, side effects are building up and I need to get the tibolone on board soon and don’t think I can take both.

Hoping the Zoladex kicks in and you don’t have to bleed again! Nice to hear from you 😊

Best of luck with the surgery. Hope it goes swimmingly.

I had Zoladex monthly for about a year whilst waiting for an ablation, as well as 3 monthly Depo injections and still bled. The nurse doing my depo was most surprised. I have polyps and fibroids.
I am also on the waiting list for a hysterectomy which after chatting with gynae bookings (sent me another hysterscopy appointment when not needed and was gutted when I saw what it was for as I hoped it was going to be my pre op appointment) and when I said I guess it won't be until next year she was no, I think it will be sooner 🤞
My periods have been so awful I have anaemia and have had two rounds of blood infusions which worked wonders, but no good if the cause isn't sorted.
I hope yours gets sorted very soon op, it's literally bloody awful💐

@ConfusedGin @Lula74 hello! hope you
don’t mind me resurrecting this thread gone by but your conversation is one of the most helpful I’ve found. I have a whopping fibroid which is making my life miserable, and currently on list waiting for UAE. It’s a loooong wait. How have you guys got on since last year?

Hello @Adrieeeeenne

I had 2 rounds of Zoladex in the end - one larger 3 month dose and 1 one month dose. It was the most my GP was willing to give me, but my op kept getting pushed. The triple dose really threw the gynaecology team. They didn't seem to realise it existed.

The Zoladex stopped my periods immediately until about 4 months after the last, single dose, which was about 2 months after my fibroids (2 large) were removed. By the time of my op, I hadn't bled for 5.5 months, and my iron levels were normal for the first time in almost 2 years (albeit with 3 tablets a day).

I had hot flushes, which in turn meant some nights of poor sleep, but honestly, it was totally manageable and entirely worth it for not having periods and getting the surgery done.

I'm 4.5 months post open myomectomy now. I almost cried with joy after my first period back - entirely manageable. And as light as they were before I realised the fibroids were there. And, stupid as it sounds, I can lie on my stomach again - for so long it was so painful, like I was lying on a book.

Resurrecting this thread to say that I had my fourth Zoladex (monthly) injection last week and I'm Still. Fucking. Bleeding. And I'm cramping now as well. Do PPs have any updates, or are there any other experiences to throw into the mix? I can't work out if continuing to have periods means it's not actually completely suppressing the ovaries, or if it is but it's a side effect. Logically it would seem like the former? I can't find the answer on Google and HCPs don't seem to know either.

@VictorianBigot
How are you now?
Zoladex took 3 months to properly kick in for me and then I occasionally had spotting after that.
But not the horrible extreme flooding I had. It really helped but took a while.

Thank you for sharing your experience. I don't think it's working for me unfortunately. I now have chronic hypotension and feel bloody awful... very weak and lightheaded, and more exhausted than ever. My GP thinks it could be related to the Zoladex as blood pressure changes are listed as one of the side effects, so I've been advised to stop it and have to have some blood tests.

Mood-wise (I'm taking it for PMDD as well as endometriosis), I've stopped having the horrible swings in mood but the pay off is that I feel flat all the time, whereas before I'd have 7-10 days in a month where I'd feel good. I've found the HRT a struggle to get right and since my gynaecologist had to cancel all her clinics, I've just been left to get on with it all myself. Fortunately there's an ANP at my surgery who has been brilliant but she's limited in what she can do without gynae advice.

@VictorianBigot

Have you had your iron levels checked? I was dangerously anaemic before Zoladex.

I have in the past, yes, and they've been above range which is a bit odd as I'm vegetarian and don't take iron supplements or multivitamins, so they keep an eye on it. I think the blood tests they've arranged for me will include iron, b12 etc. Are you still on Zoladex?