Zoladex/Prostap then possible hysterectomy - Endometriosis UK

Endometriosis UK

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Zoladex/Prostap then possible hysterectomy

NessyFrewer73 profile image
4 Replies

Hi guys,

Haven't messaged for ages because been going through hell. To cut a long story short, after my surgery in Feb, I saw a very unhelpful gynae who laughed throughout the whole consultation,suggested either Prostap or to see an endo specialist. I decided to see an endometriosis specialist. My appointment came through and it was for 5 1/2 months later, which I thought was an unacceptable time to wait. I then contacted my Gp and asked to be referred to another hospital which has a great endo centre, and when the appointment came through, it was not with the endo centre but a normal gynae. I have been in so much pain, my mum paid for me to see a private endo specialist. He was absolutely fantastic, and he thinks I have Adenymyosis so will need a hysterectomy in the long run. I felt more confidence out of seeing him in 45 minutes than I have done all the other times! I start the Prostap/Zoladex injections next month, then need to be seen in 3 months to see how I'm feeling. I will have the rest of the treatment on the nhs, but am so glad my mum could afford to do that for me. I was getting to a very bad place.and couldn't cope anymore. Sorry for the long post. Hope everyone else is ok x x

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Tboag profile image
Tboag

Hi, what makes the endo specialist say that about Adenomyosis, ive just had a hysterectomy for adenomyosis, confirmed by a lap in March, when I had endo removed also,

If you have any questions or would like to chat let me no,

Good luck with the medication xxx

NessyFrewer73 profile image
NessyFrewer73 in reply to Tboag

Hi hun, it's not 100% confirmed that I have Adenomyosis, but he is quite sure that is what I have. I had a lap done in February which showed endo on the side of the pouch of Douglas,a paratubal cyst on one of my fallopian tubes, and my bowel was attached to adhesions.They lasered the endo, detached the bowel and removed the cyst. Since the opportunity have been in agony every day. Periods are worse and I have a constant deep pain. When he examined me he said my uterus was extremely tender. Am hoping the injections work so I can get some relief from the pain. Thank you for replying and if I have any questions or will let you know. Take care x

I sympathise; I spent around £165k just on medical procedures and consultations (probably another £70k on private treatments including acupuncture, hypnotherapy, etc. etc. and now it's all gone. Went to an NHS clinic and found it to be very poor indeed despite supposedly being a centre of excellence. It's ridiculous isn't it what we go through and how much money we spent on a disease which affects 5million women (or more) and yet because it's not terminal like cancer, it's almost treated as a problem to be sort of dealt with and luck has much to do with it....

NessyFrewer73 profile image
NessyFrewer73 in reply to

That's very true Maria. Money talks unfortunately and as I said, I've got more being done for me in 1 consultation than all the others put together, which is very wrong for a disease which is so nasty and affects so many women. Sorry to hear you had to pay so much money out. My mum paid for just 1 consultation for me because of the agony I am in, plus also being disabled with a severe back problem doesn't help my situation. I have now got to have the rest of my treatment on the nhs. Thank you for replying to my post. Take care x x

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