Just wondered if anyone has been told the... - Endometriosis UK

Endometriosis UK

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Just wondered if anyone has been told there endometrious is to severe to remove my ovaries I have a cyst on both.I Went into hospital 3 week

kitty67 profile image
17 Replies

Ago had laprosopy could see my ovaries for all the adhesions on my pelvis and bowel told I could die if I had operation.waiting for letter for pain clinic crossing my fingers in pain all the time and trying to hold a full time job down

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kitty67 profile image
kitty67
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17 Replies
celery74 profile image
celery74

Same here. I'm now on my 3rd injection of Zoladex. I also work full time. It's not easy. Stay strong and keep positive x

kitty67 profile image
kitty67

Hi I had some injections to make me go into the menopause they didn't work what is your injections for thanks for replying its hard to live with the pain some days x

Why would having surgery in danger your life? With all surgeries there are risks.

Maybe your surgeon isn't skilled enough to carry out surgery of a complex nature, like yours ?

kitty67 profile image
kitty67 in reply to

He told me to lose weight and I did now its to severe it might kill me so fed up.Its on my bowel pelvic wall and abdomen so hard to get to the ovaries were the cysts are.

Impatient profile image
Impatient

I agree with cuddlybarb, It either means your surgeon is not sufficiently skilled in endo removal or there is some other medical reason why a surgery is not safe for you, e.g. your weight, or blood pressure or reaction to anaesthetic, or you have diseased lungs etc.

Even the most complex of endo cases can be attacked surgically provided there are no other underlying health conditions preventing your surgery.

Ask your GP to refer you to one of the accredited endo centres for a 2nd opinion on the surgery.

kitty67 profile image
kitty67

hi been to doctors today getting a second opinion yes may be my consultant isn't experienced in adhesions and endometriosis but my condition is getting worse the pain is really bad some days carnt cope x

celery74 profile image
celery74

My doc said he can't operate either? My gp and surgeon both say an op will do me more harm than good as my organs are stuck :-(

in reply to celery74

Do you go to an Endo specialist centre?

celery74 profile image
celery74 in reply to

Yes. Been going for 3 years now. Surgeon said at the very least, if I had surgery, I'd be left catheterised for life. :-(

in reply to celery74

I'm sorry to hear that.

So what is the plan for you?

celery74 profile image
celery74 in reply to

At the moment I'm just on the zoladex course, whilst I wait for surgeons meeting. A few of them are going to see if there are any other options out there somewhere. I'm keeping positive, as best I can :-)

in reply to celery74

Keeping positive is all we can do, isn't it?

My bits are stuck together (ovaries, bowel and uterus) and I have adenomyosis and a fibroid too. I've had Endo for over 20 years! I am 43.

I'm currently on a GNRH drug called decapeptyly (a bit like Zoledex) and I also have the mirena.

I am seeing my consultant next week to discuss having a hysterectomy but preserving at least one of my ovaries.

I'm just desperate to get some pain relief and to be able to enjoy my children.

I really hope the docs can help you.

Cyber hugs.

Barbara x

celery74 profile image
celery74 in reply to

I'll be keeping my fingers crossed for you for next week. Good luck and thankyou for your kind words. Cyber hugs.

Celeste x

kitty67 profile image
kitty67

You would think they could help us with all the modern technology it helps to no were not alone x

celery74 profile image
celery74 in reply to kitty67

Agreed Kitty67 x

celery74 profile image
celery74 in reply to kitty67

Have you asked your doc about pain relief? X

madtabby profile image
madtabby

No i was told similar as its so extensive & have other gynea probs that operating wouldnt help prob cause more pain due to scarring internally !

Trying to stop my periods instead but not been successful yet . On the mini pill since last december and bled for most of the time ;-(

But the pain is less so im hopeful.

Id try medication to help your symptoms !

Stay strong n look after yourself! Get plenty of rest !

Your not alone in this

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