Is there a long term alternative to zoladex?

[Kdjhg08]

I'm 35 and I've been living with endo for 15 years. I have 3 children and requested a hysterectomy 3 years ago. I wasn't refused one but they went through the pros and cons and instead I decided to have a mirena coil. The coil lasted about 9 months as I couldn't take the awful side effects I was suffering. Over the last year I've had health problems possibly related to my gallbladder but I asked my gynie if it could be endo related. He put me on zoladex injections for 3 months. I had the usual menopause type side effects but in general I felt amazing!! No pain or cramping and no complete exhaustion. I decided that I would go for a hysterectomy again but was refused point blank. I'm really struggling again. I don't want anymore kids and I'm at the end if my tether living with the everyday effects. Is there anything like the zoladex injections that can completely stop the endo but you can have regularly? Or is that asking for a miracle? I'm currently on overette contraceptive pill and the last consultant I saw is writing to my gp about 2 pills I can take will having a pill free week.

[Tboag]

The best way to deal with endo is thorough excision from a specialist in a bsge centre, you need to find a centre near you and get a refferal from your gp. Good luck, 

[Kdjhg08 in reply to Tboag]

I'm under a consultant at my local bsge centre and I've had several excisions in the past. My last one was over 6 years ago and they don't seem interested in doing anymore. They just want to try and treat me through medication ie the pill! Fed up of trying to get help! 

[Tboag in reply to Kdjhg08]

Oh no that's awful, where was your endo excised from, and was you ever pain free?? Have you read a lady called Lindle, s posts she is very informative, and might be able to give you some good advice, have you had a MRI scan?? Xx

[Tboag in reply to Tboag]

Sorry was meant to say, if it's endo playing you up, then a hysterectomy won't nessesary help you, unless they remove every little bit if endo at the same time, I've had a hysterectomy with overies left in due to adenomyosis, and I'm still in pain, from the endo, x

[Kdjhg08 in reply to Tboag]

I've had it removed from my bowel, bladder and ligaments and yes it did help. Will have a look at lindle. I'm feeling very frustrated at the moment due to other health issues with my gallbladder  (they think). I've had so many tests and keep being told everything is normal. I don't feel normal and have lost over 2 stone. The zoladex injections helped so much I wish I could have them all the time! I've had several mri scans but not for endo. Just wish I could click my fingers and get rid of the the problems!. Thank you for taking the time to reply xx 

[Tboag in reply to Kdjhg08]

Did you have your last laparoscopy and excision in the same bsge centre ?? 

Why won't they do another one, ?? 

Could all of your symptoms be linked to endo, it's crazy how many symptoms there are! 

X

[Kdjhg08 in reply to Tboag]

Yes all my treatment has been done with the same consultant. They have a clinic in my town and I don't always get to see the consultant so get told different things from other consultants on his team. I've spent the last year in a lot of pain which they think is gallbladder related and when I was on the zoladex I still had pain so they don't think it's endo related. I feel like a hypochondriac at the moment! X

[Tboag in reply to Kdjhg08]

I'm on zolodez ATM, and not much change yet, could still be endo related, I think I would fight for another laparoscopy, xx

[Endo13 in reply to Kdjhg08]

I just read your convo now and I totally agree with you Kdjhg08 im sorry to say Tboag but even the worlds best endo surgeon/specialist will remove the excision..it will still come back and still Gnrh will forever be in our life..Im not trying to be negative here but this is how endo is..talking by real life experience and spending hundres of dollar in laps and travelled 3 different countries to find for the best endo specialist..at the end its a lifetime use of Gnrh medicines, and pills..goodluck on your endo journey @kdjhg08. Our doctors cant put us in Zoladex/Decapeptyl for more than 3 to 6 mo straight coz of d side effects on our bones..Hope you are doing well and getting better☺

[Hidden]

I've been on Zoladex 5 years but also a daily tablet called Arimidex that works to block oestrogen. I was able to manage with that for 6 years but then needed both.

It is 14 and a half years since I had a hysterectomy and oopherectomy. That is not a cure. I've had lots of excision surgery too.

Good luck but don't go for a hysterectomy expecting a cure as I did! This disease is vile and no cure exists and no one even cares.