Zoladex: Hello everyone. Although I’ve not... - Endometriosis UK

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Zoladex

Toddyboy12 profile image
17 Replies

Hello everyone. Although I’ve not got endometriosis I do have fibroids. Was diagnosed almost 3 years ago after starting to get heavy irregular periods. Was given the Merina coil and this worked a treat for almost 2 years very little bleeding throughout. Then suddenly started bleeding heavy again. Had a scan to find I had more fibroids and one had pushed the coil out of place. Had a new coil put in and that did help but was also told I had to have Zoladex for 3 months. Was also put on Tibolone. I’m due my 2nd injection tomorrow. No side effects so far but last week started bleeding heavy again also passing huge clots. Spoke to GP. Said to wait a few days and if continues will give me something to stop the bleeding. I thought Zoladex was meant to stop the bleeding but it’s worse than ever. My consultant said if this zoladex treatment doesn’t work then a hysterectomy is the only other option. The way i feel right now this will be a blessing as it’s dominating my everyday.

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Toddyboy12
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17 Replies
Lou93 profile image
Lou93

Hi sorry to hear what your going through I have heard some women bleed on the injection, I’m on my fourth and no bleeding as of yet I think everyone is different.

I’m waiting to have a hysterectomy in the next few months hopefully so for me it’s a good option as had several surgeries and it keeps coming back.

I would speak to your gynaecologist again and see what they say about you bleeding on them and if you want a hysterectomy ask them.

Hopefully the gp can give you something to help with the bleeding in the meantime x

Toddyboy12 profile image
Toddyboy12 in reply to Lou93

Hi thank you for your reply. My gynaecologist said I will have to have a hysterectomy if the zoladex doesn’t work. It’s so frustrating as I’d prepared myself for the side effects and was looking forward to finally stopping bleeding. I cannot remember the last day I didn’t it’s been months. It dominates my every day cannot make plans as I don't know what the day is going to bring. All my adult life my periods have never caused me any issues I’m now 49 so at that time of life where menopause is around the corner and now it’s causing me so my issues. It scares me the amount of blood I loose. I’m having a blood test tomorrow to check my iron levels I’m pretty sure they are low. Just want this nightmare to end.

Lou93 profile image
Lou93 in reply to Toddyboy12

It’s awful before I had surgery I would bleed for months and months iron levels always low so I know how you feel let’s just hope they can get you sorted ASAP then x

Moon_maiden profile image
Moon_maiden in reply to Toddyboy12

See if they can add Vit D to the test. It helps hormones as well. You have to ask as it’s not standard, but should be.

Moon_maiden profile image
Moon_maiden

I had one small period after first injection, nothing after second. Generally didn’t seem to be helping with pain, gynae said it can be two or three before it works fully.

As Lou said contact gynae secretary and they can ask.

Rjb_88 profile image
Rjb_88

You can bleed while on it if you have fibroids, my specialist said that the blocker to your ovaries causes the fibroids to almost shed and bleed. Things usually settle after a few injections x

Toddyboy12 profile image
Toddyboy12 in reply to Rjb_88

Thank you for your reply. I’m only having 3 injections so feel I won’t stop bleeding 😢. From what I understand the Zoladex reduces the size of the fibroids but they usually return to their original size a few months after treatment has stopped. So I do question why I was put on this treatment 😐

Rjb_88 profile image
Rjb_88 in reply to Toddyboy12

Yes that’s what I have been told too! Has it helped your pain at all?

My specialist has said I can stay on prostap for 5 years max if it works for me so I am keeping fingers crossed!

Toddyboy12 profile image
Toddyboy12 in reply to Rjb_88

Hello.

Strangely I’ve had very little pain. I’ve now had my 2nd injection and blood test. My gp rang me and said my iron levels are very low and put me straight onto iron tablets. He’s also going to speak with my consultant to see what to do next.

Rjb_88 profile image
Rjb_88 in reply to Toddyboy12

Ah that’s good, I’m glad they’ve checked you over and sorting it. At least no pain is a plus too :) fingers crossed things settle down for you soon!

JOSANDY40 profile image
JOSANDY40 in reply to Toddyboy12

Hi, I stayed on Zoladex for 10yrs with 2 4mth breaks.

It was a life changer.

Toddyboy12 profile image
Toddyboy12

Hello everyone. Phone call today with the consultant and I’m booked in for a hysterectomy in 4 weeks time. It’s not what I wanted but cannot live like this anymore. At least once recovery is done no more bleeding.

Lou93 profile image
Lou93 in reply to Toddyboy12

🤞 for you I’m waiting for a hysterectomy so in the same boat and on zoladex at the moment so know how you feel it’s awful.

Toddyboy12 profile image
Toddyboy12 in reply to Lou93

Thank you for your reply. I wasn’t expecting to have the op so,soon, maybe next year but at least it will be sorted. The consultant asked me whether I wanted my ovaries removed at the same time Said would be better in the long run. He was so matter of fact about it all just said to let him know on the day. Felt like I was booking a hair appointment 😂

Lou93 profile image
Lou93 in reply to Toddyboy12

How are you feeling about having a hysterectomy? Yes mine was the same about discussing removal of ovaries as he said I would on have to have them removed later down the line if endo attached to them so I agreed to having everything out, for me it’s a big weight that will be lifted if that makes any sense x

Toddyboy12 profile image
Toddyboy12 in reply to Lou93

Hi. I’m feeling ok as to be honest knew it was on the cards. Just all happening so quickly. I was originally referred to a private hospital that take nhs patients that’s why I’m not having to wait too long. I’m 49 so not concerned about not being able to have anymore children. More concerned about the recovery but I know deep down it’s the best thing to do.

Lou93 profile image
Lou93 in reply to Toddyboy12

Glad your feeling ok about it all ☺️ mine will be at a private hospital so 🤞

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