zoladex: hi all just after some advice.. I... - Endometriosis UK

Endometriosis UK

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zoladex

Peetzo profile image
10 Replies

hi all just after some advice.. I’m not convinced zoladex is working properly. I’ve been on it for 6 months and had spotting or full periods all the way through, this month for example I’ve had 2 what I would class as periods with pain. I’m awaiting a full hysterectomy I’ve got an mri in a couple of weeks so hoping it won’t be too much of a wait after that I’ve been waiting over 2 yrs so far for any kind of treatment or removal xx any advice welcome I’m not sure the spotting or bleeding should be happening after being on it for the last 6 months x

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Peetzo
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10 Replies
Rookery17 profile image
Rookery17

Hi Iv been on zoladex twice now each time Iv been on it for 4 months both times I had no bleeding or spotting have you been having the injection every 4 weeks?

Peetzo profile image
Peetzo in reply toRookery17

Yep every 4 weeks. I had bleeding this month that started the day after injection and again now about 2 weeks later not due again till mid March although struggling to book it in in time for my March dose.. although wondering what the point is in carrying on.

Rookery17 profile image
Rookery17 in reply toPeetzo

I know you get one 2 weeks after your first shot but yea you shouldn't be bleeding still if your continuing what has your doctor said? Yea I would think the same to be honest as the reason your on it is to stop the periods and pain

Kerryd27 profile image
Kerryd27

Hi I am due my 5th Zoladex next week and I have had no periods and no bleeding. It’s also stopped my pains, I do start getting some pain a couple of days before my next injection is due but not bad. Have you noticed no difference at all? Have you contacted your Dr. I hope you get the MRI soon, so frustrating for you.

Hello

Yes this can happen on zoladex. I had this treatment 3 times over 20 years. The last time it was fine at first but after a year I suddenly started bleeding again. My consultant first brushed it off as a one off but it continued. He changed me to prostap. I also was on evorel patches. Nothing changed. I bled constantly for 7 months before my hysterectomy. I also ended up having an emergency colostomy operation as bowel and womb were fused together. I have a stoma bag now. Having my bowel repaired in a few weeks time and the stoma reversed. Do you have a number for your consultants secretary to be able to pass a message on or an upcoming check up where you can voice your concerns? Hope you get some reassurance and help soon.

Sunset-lady profile image
Sunset-lady

Please don't worry. I bleed most days on zoladex. I've been on it for 15 months and I'd say I've only had around 40 days of no bleeding in that time spread across the 15 months. It doesn't work for everyone. If you are estrogen dominant (which you probably are with endo) your periods push through. My cycle is every 14 days and I have moods to match it. Zoladex also runs out early for me - every 9 weeks. Then I hemorrhage terribly until the next injection. I'm 51 with fibroids and stage 4 endometriosis and I've been bleeding for over 3 years. Get your iron checked as your stored iron (ferritin) levels will be very low which will make you exhausted. I take tranexamic acid at times to help me (but that just makes me look pregnant). What is good is that the MRI is had showed it's shrinking everything so that's great and I'm having a hysterectomy in 3 weeks. Keep yourself healthy and be kind to yourself. I think it's hard for others to understand what constant bleeding does to your mental health x

Gozzie profile image
Gozzie

Hi, I've had 5 zoladex injections and am having the same problems, I've been on the waiting list for 17 months for a total hysterectomy. I mentioned at my last injection (last week) about how it's effecting me and the nurse is going to speak with my consultant and ask her to see me. I also had an MRI at the end of last year and that triggered pains and I could hardly walk after, make sure you take someone with you to support you, I'm not saying this would be a trigger for you but wanted to make you aware. I hope you get sorted soon xx

Peetzo profile image
Peetzo

thanks for all you responses, I have stage 4 endo with bowel involvement.. you know the drill all I’ve read is that you shouldn’t bleed at all after the first month.. the bleeding hasn’t been awful just very irregular doesn’t really seem to coincide with the jab running out either.. it’s complicated with regards to contacting consultants as in it’s impossible my care hasn’t been great. I’ve been transferred from one hospital to another to speed up waiting time but it hasn’t worked.. I had a lap last yr where after over 10 years trying to get answers I already knew I had endo after an mri so the lap was to remove it.. it was found to be too severe and a bowel consultant needed. ( which I already knew because the MRI said so) but they decided to ignore that so nothing was removed and I was back to square one where a full hysterectomy was decided to be the best course of action so fast forward over 2 yrs still waiting! It’s a bloody nightmare!

Lornalost89 profile image
Lornalost89

Hi. Are you using HRT?

I've been using zoladex for almost a year now. First 4 months without HRT as my local hospital didn't prescribe it. When I seen a specialist they instantly prescribed tiblobe to go along side my injections which might I add worked BRILLIANT for me. No pain. No bleeding it was honestly like a miracle. As soon as I introduced the HRT my world came crashing down and every symptom and bleeding came back. I personally made the decision to stop the HRT the benefits I was receiving from the injection alone outweighed the risks of No HRT for me.

I've recently seen my specialist again who has asked me to try another type of HRT so I will try but it was agreed if it causes the same problems I will just be better stopping it. There are people who can not have HRT.

I also have my injection 8 weekly (it should be 12 but we have found it absorbed it quickly and it would run out around 8 week and I would start getting symptoms slowly return but nothing compared to where I was without zoladex

Peetzo profile image
Peetzo

hi ya I’ve not had anything really explained to me I was told to start monthly zoladex injections with add back HRT everol conti patches. No follow up to see how I am getting on or anything so I’ve been left wondering if any of this is working I feel like it isn’t whether it’s the injections patches or both! I’m just hoping I get my hysterectomy soon and that it solves my issues I hope I’m not pinning too much on it after all this waiting and uncertainty I hope I won’t be disappointed x

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