Zoladex fail! Dr refused surgery! Can't h... - Endometriosis UK

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Zoladex fail! Dr refused surgery! Can't have hysterectomy as zoladex failed. What else can they do?

Diagnosis21 profile image
10 Replies

2013 I had surgery to removed endo and massive cyst from outside overy. I had zoladex for 6month and fell pregnant on my last injection. Since then Iv suffered immensely. Unable to move, walk even around the house is difficult I'm in pain every single day all the time and my pain increases.

They have recently found a small cyst inside my overy, my gynea had told me to either try the zoladex a try and if it worked this time I could have my full hysterectomy.

My gp has told me this morning that because I'm bleeding a full period in the second month along with all the spotting in the first month that it's likely that the zoladex hasn't taken to my body and that its failed doing its job and to phone the gynea and see if she can see me!

From the last app I was basically told she won't remove any endo again and that I'm basically going to be in pain for the rest of my life. And that she can't do anything else for me!

Is this true? I want some info before I see her tomorrow and fight my case.

I'm 24 with 2 children under 5yrs old and have to have my grandmother inlaw with me during the day when my partner is at work to help me look after them and make sure that the house work is done. Please help

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Diagnosis21 profile image
Diagnosis21
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10 Replies
Tboag profile image
Tboag

This is not the case, endo can 1 grow back after excision or 2 your general gyne could have missed some, go back to your gp and tell them you want a refferal to a bsge specialist centre, find one near you on the bsge website and take details to gp,

A hysterectomy will not cure endo, and even if you did go down that path all your endo would need to be excised at tge same time, by a specialist,

I had a hysterectomy for adenomyosis and have endometreosis too, I'm still in pain and I believe that endo has been missed, I'm now awaiting another laparoscopy in a bsge centre.

Good luck, xxx

JeanOsborne profile image
JeanOsborne

Hi, Zoladex doesn't work for everyone and a hysterectomy will not cure your endo.

You need to get a referral from GP to a BSGE centre where there are specialist surgeons who will be able to help you.

Search on here for a lady called Lindle and have a look at her post on treatment pathways and on how to find a specialist.

What you need is thorough excision of all endo which is what us done at these centres, and you could be pain free. Good luck.

Diagnosis21 profile image
Diagnosis21

Apparently according to the bgse site. My hospital (we're my gynea is based and I see her) is actually a bgse hospital.

Tboag profile image
Tboag in reply toDiagnosis21

Is the actual gyne doc on the list, as a centre can be at a hospital And there still be general gynes working there too, you need to see the one that has been named on the list,

Diagnosis21 profile image
Diagnosis21 in reply toTboag

Yea she is the named dr on the list which sucks because I don't feel she's got my best interest at heart. Just got to see her today and see what she says. I will let you know what's been said later on

Tboag profile image
Tboag in reply toDiagnosis21

Bloody doctors, tell her you want a laparoscopy and thorough excision if endo is still found, good luck let us know, xxxx

JeanOsborne profile image
JeanOsborne in reply toDiagnosis21

Just be she is at a centre doesn't mean she is BSGE accredited. Have a look on the website to see if she is a named endo specialist. If she is then I would suggest you go back to GP and get a referral to a different specialist at the centre or a different centre altogether.

Emmalou65 profile image
Emmalou65

Hi I am 24 to and just finished zoladex and the first thing my Gynecologist suggested was surgery he said it was the best thing I'm at stage 3 and I'm really messed up inside it's a mess but he's suggested surgery and pain clinic and it's the best way forward!!! I would push your gynecology for the operdition it's your body!! If not go back to the gp and get to see a different Gynecologist as they can change who you see!!!

Good luck with it all and let me know how it goes xxx

Diagnosis21 profile image
Diagnosis21 in reply toEmmalou65

They did that 3years ago and nothing's changed

Diagnosis21 profile image
Diagnosis21

She's said it can take the full first 3months to properly work and do everything it needs too??

So she's now put me on a 6months course and if it works for pain then she will do hysterectomy.

She personally doesn't think I have much endo around my body or even in my whomb or ovaries. But all they have ever done is check my ovaries never anywere else on scans. How does she know it's not spread anywere else? There's got to be a reason why I'm in so much pain? I can't be suffering like this from just a small cyst on its own. Sex is getting more pain full I have a lot of pain (the same type I have near my ovaries), just under neath my rib cage. Iv just got to wait out the 6months and see if a difference is made.

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