Zoladex drama.. Zoladex or Visanne post l... - Endometriosis UK

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Zoladex drama.. Zoladex or Visanne post laparoscopy? Shrinking lesions before ivf?

Chicken1001 profile image
16 Replies

Hi all!

Hoping for some sensible advice here :)

Short version:

Does the zoladex injection really hurt?

Would zoladex destroy endometrial lesions?

What is the practical difference between zoladex and visanne?

Background ramble:

1week post laparoscopy (10cm endometrioma plus smaller one, both tubes, appendix, most of the lesions and scar tissue removed). They left a small patch on my bowel as I had said no to bowel resection.

I am v.lucky in that the endo 'generally' doesn't cause me horrific pain (I think) I take ibuprofen solidly for 3 days during my period and that's mostly fine. Only diagnosed aged 35 via fertility services. Probably had it all my life. Terrible pain as a teenager. 7 failed ivf cycles.

24 hours after surgery the surgeon said I should go straight to hormone treatment to shrink the remaining endo. They suggested zoladex as preferred or visanne if I was planning to do ivf again soonish. On reflection I'm not sure it was a great time to make me make that decision as I was still on morphine and quite gaga. Being a good patient I agreed to do the zoladex only then to COMPLETELY freak out when I saw the needle size. Silly me thought it was a little arm injection or such like. I had plastic straps holding my ovaries in place, the pain was terrible and my stomach was blown up like a balloon. Unhelpfully the nurse read the instructions by my bedside. So I refused the injection and it was all very awkward and stressful and made me feel quite guilty.

So I ended up on visanne by default and I basically wondering if I made a terrible mistake...?

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Chicken1001
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16 Replies
Lou93 profile image
Lou93

Hi I was on zoladex for 6 months if I’m being honest sometimes it stung abit but most of the time I didn’t feel it as the injected into my stomach where there was some fat 🤣 I can’t say if it helps reduce the lesions but I was on it before my hysterectomy X

Chicken1001 profile image
Chicken1001 in reply to Lou93

Thank-you!

bertie1606 profile image
bertie1606

Hello, I am on zoladex at the moment, I don't find the injections hurt, maybe just a pinch at the time of insertion. I was told it doesn't shrink endo, but it stops it growing. I have to say it has pretty much taken the pain away as well x

csytasista profile image
csytasista

Hi. I had my third of six zoladex injections last week. I don't find the injection very painful, like most other jabs or a sharp pinch. I just don't look at the needle going in, as it is large! My pain, nausea and PMDD have greatly reduced (and no painful ovulation and periods!), so despite the menopausal side effects, I'm very glad to be on it so far. My nurse hates giving the injection and has to watch a youtube video before doing it each time, once while I was in the room - doesn't fill one with a lot of confidence(!). Sounds like you had to make a decision at the worst possible time, and I completely understandable that you couldn't go through with the Zoladex. I would say you absolutely shouldn't feel guilty, It's your body!

I actually think taking Zoladex is quite major, and it's preferable to be prepared before starting it if possible. However, when I read up on it before starting I came across a lot of "horror story" posts which were quite off-putting and made me a touch nervous. I do feel like it's helping me, but it's not easy either (I have a busy job and am finding it very hard to do more than one thing at a time, and my mind blanks when I get put on the spot atm - but then I was in the situation of being signed off work before starting it due to my gynae problems. Very much a balancing act).

I wish you all the best :) xx

Nats31 profile image
Nats31

I had one zoladex injection done. The needle was rather intimidating, but the process itself wasn't too bad at all.Personally, it helped me pain wise for about 3 weeks and I was back in the emergency room. The ongoing hot flushes are the absolute worst though!

If I were to choose I probably would've gone with visanne too

All the best x

MMich15 profile image
MMich15

Hi there, I’ve had several decapeptyl injections which are very similar to zoladex, like some of the other women have said it wasn’t any more painful to me than other injections - it should be done in the buttock area tbh - my gp did the first one in my stomach and it left a (temporary) little bump - the consultant said that’s why it should be done in the hip/bottom area. Although mine was a 3 month dosage so it gets released over time (hence the little bump that eases over time). And actually I am now on visanne, post 3rd surgery.

I have to be honest with you… the injections were a life saver in the beginning - completely shut down my ovaries, no periods, no pain, no endometriosis growing. Then about 9-10 months in (you shouldn’t be on them too long anyway, not without HrT) all the side effects started, the hot flushes, hair falling out, insomnia, legs bruising. I kept with it a bit longer, even tried hrt which didn’t agree with me, then had to stop. I went back on it 2 more times because my endo kept coming back on the pills, and it helped again but for much shorter term, the last time it didn’t stop my periods at all.

Visanne has been a bit hit and miss for me. I’ve been on it maybe 6 months now and I just generally feel depleted - energy, mood. But this will vary from person to person. I started it before my surgery and was advised my body’s reaction could change to it once the endo was removed. It’s weird every month I feel on the verge of having a period but it doesn’t always come on, however it’s extremely uncomfortable and quite painful too. I’m giving it another month, max 2 before checking in with my consultant about alternatives because I don’t want to risk the endo coming back a fourth time.

I’d say both have been okay options in my case, would probably say zoladex would be more effective in the short term if this is just temporary, but longer term better to find a pill you won’t necessarily have to stop taking after 6-9 months. That was most disheartening for me when Decapeptyl worked, was knowing eventually I’d have to come off it. Hope this helps x

Chicken1001 profile image
Chicken1001

Ladies thank-you all so so much, this is such helpful information and so kind of you to take the time. Have a lovely day!

Peanutbutter1234 profile image
Peanutbutter1234

Hi,

I generally have a very high pain threshold but I have to say I find the zoladex a bit painful. I find that from administration of the injection (into stomach - I have a lot cushion to use lol) through till around 2/3 hours afterwards, it stings quite a lot. However this is nothing in comparison to the pain previously. I used to collapse with the pain, but now I would probably say its like its bad cramp, for someone without endo. Honestly has been amazing!

This week will be having my 3rd injection.

Chicken1001 profile image
Chicken1001 in reply to Peanutbutter1234

Thank-you. This was my fear (particularly immediately post surgery with a balloon shaped abdomen). I wonder how much might be down to nurse technique (especially if half of them are using YouTube for directions 😁).

Peanutbutter1234 profile image
Peanutbutter1234 in reply to Chicken1001

You're welcome. Yes it does make you think doesn't it haha. I have been lucky enough for my nurse not to youtube it front of me lol. I think it does make a difference though - with their technique. Some are better than others 🤭

Chicken1001 profile image
Chicken1001 in reply to Peanutbutter1234

Great that it has improved things for you though!

Peanutbutter1234 profile image
Peanutbutter1234 in reply to Chicken1001

Thank you. It has been a life changer! Hope everything works out well for you :)

lauramw profile image
lauramw

Hi, I don’t think the injection really hurts but I had some quite serious side effects. I hope your consultant has been clear with you about this because mine was not. If I had my time again I would not have it. It made no difference to my condition other than stopping my periods for a year. It’s basically putting you into menopause so that the disease retreats. Of course, everyone is different. My advice is just to be clear about the possible side effects and consequences of taking the drug before you commit. I wish you all the best.

Gilena profile image
Gilena in reply to lauramw

Hello lauramw . Do you mind me asking what side effects you got please? Did the side effects go away once you stopped the injections ! Thank you!

Chicken1001 profile image
Chicken1001 in reply to lauramw

Thank-you for this. Actually I dont recall the conversation particularly well as I was not really in great shape post surgery. I dont think I was really mentally competent to absorb the info or make a decision. So perhaps good I refused initially at least so I can research more. I may not get another chance to have it of course, one doctor seemed v.put out that I refused it once it was open.

Toddyboy12 profile image
Toddyboy12

I had 3 injections last year and none particularly hurt. I didn’t look at the needle but knew from research it was big. I took hrt for side effects. From my experience I was absolutely dreading having it as I had read many horror stories but to be honest had no issues at all. Good luck.

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