Endo specialist appointment

so finally today I had my appointment with the Endo specialist, it took 5 years to get here,after many scans and bein conotably being told I do not have endometriosis as I had a hysterectomy, but couldn't remove my ovaries as where glued by endometriosis. was in for not even ten minutes and was told as the surgeon who done my hysterectomy couldn't remove my ovaries no one can unless my life was in danger.Because I'm going through my menopause my ovaries are inactive and become of my size (dispite not being a big eater,walk a lot go to thegym and swim)there is nothing they can do for me.I am now so depressed and can't stop crying.I was told if they do any kind of surgery,scar tissue from my hysterectomy could damage me.I'm at my wits end.

9 Replies

  • So that's it, did he suggest anything else, ?

    Is he say that it's to dangerous to do a laparoscopy and investigate if you have any remaining endometreosis,

    Do you know what your overies are stuck to?

    I've just had a lap and my overy was attached to appendix and left to abdomen wall,

    Was you diagnosed with endo? And is that why you had a hysterectomy or another reason??

    So for so many questions, just can't be leave he can say sorry can't help go home and carry on, it's disgraceful,

    Have you been in contact with Lindle?

    Was it a bsge specialist centre??

  • Hi,I had my hysterectomy because I had fiberoids and bled every day for over 2 years. all I know is they said they couldn't remove my ovaries because the endometriosis had stuck them to me.She said they can't do surgery because I'm over weight, although I'm not a big eater, I go to the gym and swimming. I'm bloated all the time my stomach looks like I'm pregnant, but they can't do anything about it. it was the endometriosis specialist.

  • Are they willing to operate if you loss weight then,

    You coukd. Still have endo deposits that are causing your problems and they need to be removed,

    I think I would request a second opinion,

    Hope your feeling well today,x x

  • They said I have scare tissue and can't be done.The thing is yes I'm a big person,my belly is getting bigger and I have no idea why as I am active and eat small .when I had my hysterectomy I was bigger.

  • Hi. I really feel for you and totally understand your frustration and pain. I had a hysterectomy and ovary removal in Feb 2015 but done by General gynae. He left endo behind but no one believes me it's still causing pain. They keep telling me it can't grow after hyster.

    I've finally been seen by BSGE clinic and they want to try me on pain management route before even considering more surgery. At least that may give me strength to fight on for surgery to remove it all.

    I know it's hard but get your GP to refer you to BSGE clinic as they will be able to help in some way. Lindles posts on treatment pathway tell you how to do this if you're not sure.

    Good luck.

  • Thank you,they told me yesterday my ovaries are dormant so won't course any trouble. even when I said since I started hrt 3 months ago the pain has got worse. I went to an endo specialist in my local hospital. I will keep fighting.

  • Good luck. Unfortunately unless your local hospital is a BSGE centre the so called "specialist" often aren't and are just gynae's with an interest in endo. It's so frustrating that they won't admit when they can't help you but someone else could!

  • The hospital I went to is on the list of bsge clinics..But I will keep on being a pain and bugging them.

  • These "specialists" think that MD stands for Medical Diety. We all make mistakes. With all the bloating etc have you tried removing wheat and glutem from your diet? there is research that shows it helps up to 80% of patients. endometriosis.co.uk if you need additional nutritional advice.

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