Zoladex fail: Had zoladex last year for the... - Endometriosis UK

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Zoladex fail

livibean profile image
6 Replies

Had zoladex last year for the first time and it worked brilliantly. I then had it again in January but with Livial, this time it didn't work. went back to gynae and he said it can't be endo if zoladex didn't work. Have had scans and blood tests to check for other things. I am convinced it is endo as it is the same pain I have always had and was treated for endo with laperoscopy 2 and half years ago. Just wanted to see if anyone else has had the same results. Due back to gynae in sept and need something to argue with as regards to diagnosis. Feeling totally fed up with it all now as been several years and technically still do not have a firm diagnosis. take 6 tramadol daily for pain but even that doesn't work now. Not ready for hysterectomy.

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livibean profile image
livibean
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LittleMissManx profile image
LittleMissManxModerator

Hi livibean

I only had prostap once-for a period of 8 months and it worked well for me as zoladex did for you the first time round. Reading your post my first thought was that your body has built up a sort of immunity towards zoladex and thats why is hasnt worked for you again.

Before your next gynae appointment I would keep a pain diary. Then you can show this to your consultant and he can see for himself a pattern emerging which mirrors your cycle. You arent having to take 6 tramadol a day for no good reason.

As you know endo cant be seen on scans or via a blood test so another option to ask for would be a second lap to see exactly what is going on?

Hope this helps, x

Chrissie66 profile image
Chrissie66

Hi livibean

If they found endo at your laparoscopy then that's your diagnosis. Endo doesn't go away, once it's there it's there for life.

Did you see a different gynae this time? Did he actually look at your notes?

Also - hysterectomy does not cure endometriosis unless by some miracle of nature all of the endo is contained within the womb. If they saw your endo at laparoscopy, it sounds as if it's elsewhere in your pelvic cavity, so removing your womb wouldn't help at all.

I agree, you need to ask for another laparoscopy. Or maybe see another gynaecologist

Good luck xxx

Cloudyrain profile image
Cloudyrain

Mr Trehan (I think that's his name) the endo expert says that gnhr won't stop all pain if the endo is deep set. Have a look at his site and print it off for your consultant.

Agree that a lap would be the best next step. Alternatively you could try the mirena and depo if you haven't tried it before.

Hope you feel better soon x

Zolta profile image
Zolta

Hi,

Just a thought, maybe it didn't work like it did 1st time round because you took Livial with it this time?

x

JudgeDredd profile image
JudgeDredd

I had a course of zolly for 6 months without hrt then after a 6 month break they put me back on it with hrt. The first course worked well even though the side effects were awful however towards the end of the 6 months I started getting heart palpitations. With the second course I had heart palpitations right from the get go, the Dr's kept telling me that it couldn't be the zolly doing it right up until I showed them a study from the USA which showed that in a small percentage it did irrate the heart. I was taken off it and they put in the coil which was an epic fail!

Your Gyane sounds like a total tosser to say that because the zolly doesn't work you can't have endo. I would ask for a second opinion, Zolly doesn't work for everyone. Instead of the tramadol which is a rubbish drug for chronic pain ask the dr for morphine patches. They are like nicotine patches they deliver a steady dose throughout the day and don't leave you as spaced out as the tramadol. You can take co codamol with them and they have less depressing effect than tramadol.

I have had enough of being pumped full of hormones and weight gain and feeling like I want to kill someone all the time and have requested a hysterectomy but I will have to wait 18 months at least. I hope you get a definite diagnosis and treatment plan soon

Xxx

livibean profile image
livibean

Thank you all so much for your replies. I am really struggling with it at moment and have no-one to talk to about it,as nobody truly understands what it is like. so thanks again xx

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