Zoladex advice: Hi. I was diagnosed with... - Endometriosis UK

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Zoladex advice

Saraht100 profile image
8 Replies

Hi. I was diagnosed with endo in April this year (by laparoscopy). It is severe and has affected my bowel badly.

My new specialist has told me my appointment for next op will be at least 6 months away due to NHS waiting lists. He has prescribed me zoladex injections to put me into temporary menopause.

I am 35 and prior to this was trying to get pregnant. This now seems so far away and perhaps impossible.

Has anyone had zoladex injections and were able to conceive when they stopped them?

I am also very worried about the 'menopause' side affects.

How soon after you have the first injection do your periods stop?

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Saraht100 profile image
Saraht100
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8 Replies
Lauraaa profile image
Lauraaa

That seems quite severe, can't you take the mini pill instead? It also stops periods in most women

Saraht100 profile image
Saraht100 in reply toLauraaa

Yes it does doesn't it - I have been reading the side affects of it and it sounds awful.

Hot flushes, sweating, loss of labido, dry vagina!

I have just been to my GP as was due to start the injections but said I was really concerned with the side affects. He has prescribed me to take jasmin pill back to back for 3 months at a time. I feel much happier with this.

Starry profile image
Starry in reply toSaraht100

A sound decision, the coil is the other thing you could try if you haven't that stops periods and is not as severe as zoladex.

My zoladex experience was brief but extremely unpleasant. It's a last resort. Surgeons like to prescribe it pre surgery as it can shrink some endo nodules so I imagine that is his underlying motive, but that alone isn't enough to warrant it if fertility is a concern. I wouldn't touch it again with a barge pole.

Heloo85 profile image
Heloo85

Im currently on my second course of zoladex. Ill explain. I was just like you, with bowel involvement too. I was given zoladex without HRT and sent to a BSGE centre. It took 6 months to get an appointment. I had 4 months before i threw towel in. I then needed another follow-up as my last surgeon took no photos, needed to meet the colorectal surgeon, then wait for a slot. I was put on pill. Progesterone only before surgery. I bled constantly that i had to stop 2 weeks before surgery. Within 5 days of stopping i was hospitalized for right side pain, 5 days before surgery. My endo had spread from left to right. Right side pain wad new to me at this point. After surgery i was put on the combination pill back to back as because i had DIE i was high risk of return. First month was fine but then i started spotting at the point i wouldve been due my period and that didnt stop until i finished my second packet and let myself have a period. I was crippled by it. Im now on a 3 month course of Zoladex with hrt this time and finding it ok. I say OK cuz although i had my first injection the day of my last period, a week later i had a 2 week breakthrough bleed. Just had my second injection and although not 100% im better! Its up to you. Hormonal treatments often fail for severe endo. Im still suffering from severe constipation/impaction. I still have left side pain. But with not bleeding it is better!

Saraht100 profile image
Saraht100 in reply toHeloo85

Thanks for your message - it sounds like you are having an awful time! I really hope the zoladex works for you. I'm happy to try this other route for now and hopefully have the surgery by the end of the year.

Bethleah profile image
Bethleah

Hi I've just stopped zolodex after 5 treatments and I'm glad I did. It's supposed to shrink the endo so my consultant says. They wouldn't give me an mri to see if this is the case. As I pointed out how will they know if it's shrunk it without the mri?!!! I now have one booked for end July. Consultant doesn't know what else to do with me as too complex for surgery, she keeps pushing the zolodex but I feel better off it. I'm not quite so foggy among other things. You do what's right for you, you are the one with the endo, taking the meds not them. Xx

Saraht100 profile image
Saraht100 in reply toBethleah

Glad you are getting your MRI as at least then you know what is going on. It's so awful that we have to fight for these appointments and follow up checks.

Do you have endo everywhere? Im just working out why they won't operate. Mine is thought to be quite complex although the surgeons still can't tell me how badly damaged my bowel is until they get in there. They also don't know if my tubes are ok or they may need to be removed as well. I think they might only be operating on me because I want to have children.

It's all so depressing and having to wait so long between bad news.

Bethleah profile image
Bethleah in reply toSaraht100

Hi my endo has mangled my left ovary, uterus and bowel, also blocking left ureter. Non endo cysts in right ovary, endo cysts inside left ovary. Had 3 surgeries before but they say I'm one of the most complex cases they have seen. There is a very high risk to my bowel, bladder and kidney etc. I agree about the wait. Ive been under tge bgse for 18 months now and no furtyer forward. Hope you get the surgery you need. X

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