Finally: After years of fighting numerous... - Endometriosis UK

Endometriosis UK
49,300 members41,016 posts



After years of fighting numerous hospital visits and endless medication trials and fails I have finally found a gynaecologist that listened, he was sympathetic and caring he agreed with me that more should be done for ladies who suffer.  After he reviewed my file he sent me straight down to have another scan done, according to him I have the worse case of endo he has ever seen and also have 2 large tumours which is pushing on my bladder and the weight has made my womb drop, my only option is a hysterectomy, I am grateful I have 2 beautiful children my surgery is July 11th 2016 so not long to wait.

12 Replies

Hi, I'm really pleased that someone has finally listened, but, is your operation being done in a bsge centre by an endo specialist, if not it should be, servers endo should only be dealt with in a bsge centre, and a hysterectomy will only help your uterus issues and not the endo itself, unless you have a thorough excision job too. I had a hysterectomy for Adenomyosis last July and I'm still in pain, I be leave that he did not remove all my endo, so I'm now suffering with endo pain minus the adeno pain, I would get referred to a specialist before going ahead in order to avoid further loss, I'm now on the waiting list for my 3 op in a year thankfully now in a bsge centre, good luck, xxx

Nettie666 in reply to Tboag

My op is going to be in my local hospital by the consultant I saw, the one who listened to me, he is the senior gynaecologist so I'm in good hands 

Hi if he is a general gynaecologist he is breaking nhs rules by treating you. As Tboag said if you have severe endo it MUST only be treated in a BSGE centre by a specialist. Please demand a referral to one through your GP. Please search on here for a lady called Lindle as she will be able to help you with this process. Please do not allow a general gynaecologist to treat you. 

ditto. it is essential that he must be an endo specialist and not just general gynae. please check if he is on the bsge list. 

Thank you for all your support, yes my consultant surgeon is a Endo specialist, I am grateful I managed to get the appointment with him as his waiting list is about a year, my appointment was made as an emergency, so I got to see him quicker. 

that is a relief. you should be in good hands then. how old are you?

It's my birthday today so I'm 32 ☺️

Agora1 in reply to Nettie666

Happy Birthday Nettie!  Enjoy your special day.

From:  Agora1 Anxiety Support  

Nettie666 in reply to Agora1

Thank you I had a great day, went to nandos for my dinner the my lovely partner too me to the cinema to see batman v superman

Agora1 in reply to Nettie666

Sounds great, hope the coming year is good to you.

belated birthday wishes!! how do u feel about the hysterectomy? i too have been told my next option would be this as i have adeno. im due excision surgery fri first.

I feel positive about it, I like to think this op will work for me but I have seen so many horror stories about it failing and coming back, but like every other wonderful lady on here we are willing to try anything to live a normal pain free life ( in my case as normal for me what ever normal is in my house lol) 

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