Endometriosis UK

My referral to gynae has been refused!!

I have had symptoms for 3 years or so. Lots of pain; pelvic, bowel, uterus etc, very heavy bleeding with fist sized clots causing extreme fatigue. Cant work or take care of house/kids as i am bed/sofa ridden 50% of the time. So anxious about my future, my heads a mess

An ultrasound has confirmed adenomyosis and my GP suspects also endometriosis. She refered me for endo diagnosis and treatment for both, and gave me nothestirone to be going on with.

Had a phonecall today and my referal has been refused because i said my preference is for a hysterectomy. The NHS dont fund hysterectomies apparently. They will only see me if i have tried the mirena

Has anyone experienced this??? GP is going to re-refere as she agrees i need laparoscopy and possible ablation...

I am on my knees

7 Replies
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I haven't heard of the NHS not funding hysterectomies. I would contact the Patient Advice and Liaison Service about this:

nhs.uk/chq/pages/1082.aspx?...

Hope you get this sorted.

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Hi, in the NHS decisions about funding specific treatments are local. Many areas are starting to impose restrictions but it can be hard to find out what they are. It maybe that your local CCG has decided not to fund hysterectomies on demand, which has tripped up the referral.

If your GP refers for investigations only then you might have a better chance of getting passed the CCG (they are probably screening referrals). If the diagnosis of endo is confirmed then I think because you are already in the system, you and your consultant can plan treatment that’s right for you.

Another option is to write direct to the CCG to complain. It’s quite hard to work out who to address your letter/email to, but try googling your NHS area with CCG (clinical commissioning group).

Good luck!

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A lot of CCG’s have cut funding. I think perhaps you cannot be so specific on what your treatment will be? I guess the goal right now is to be seen by a specialist

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Hey there, I also got declined to see a specialist (in New Zealand though) because I had not tried a mirena even though I have tried literally everything else and was adamant I did not want a mirena. My only option was to get it so I did and it caused more problems than it was meant to solve. I had it removed as soon as I could and was able to see the specialist, now on the waiting list for a laparoscopy. Keep at them, I hope you don’t have to compromise like I did x

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CAN I ask what happened with the Mirena? I’ve got one and I love it as After 6 months I had no periods.

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As already said above you need a referral initially for diagnosis as your symptoms are severely affecting your quality of life. through my experience you will possibly need to try some treatment first but that doesnt mean a hysterectomy may not follow at a later date if that is what they feel necessary. some medications can help and i also was given prostap twice. after this it was recommended i had a hystrrectomy. i also had adeno as well as stage 4 endo. contact pals to explain and they may well get you on the list x

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Thanks for your replies. My preference is a hysterectomy; but it seems crazy to refuse to see me because of it. I need a laparoscopy to confirm or otherwise, endo!!

My GP is going to reword the referral and tty again. I do now have an appointment for the mirena. I am so desparate at this stage, i will try anything

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