Endometriosis UK
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how do you manage the wait/helplessness?

I had my consultation yesterday and I need a CA 125 blood test, MRI and surgery. As my consultation was private, I need the blood test from my GP, and to be referred out to a NHS gynaecologist/endo specialist, to then have a consultation, to then have an MRI, to then have surgery...Essentially I'm looking at months of waiting. I'm grateful to have access to the NHS, but I am struggling with how much of this out of my control, and how many more painful periods I'm going to have to suffer through but I even get to my next specialist. I'm getting married at the end of November and I'm worried about my surgery being near the date.

How do you manage the helpless feeling of just waiting and waiting and waiting (and suffering)?

17 Replies
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Ahh I can understand your worries.

Was your consultation private as in paid? Are the MRI and surgery not an option privately also? I know it costs and that's a big factor, mine was through my work medical insurance, without it I'd be waiting as I wouldn't be able to afford it. I know blood tests can be done via the NHS; if you have that special form / letter from your private consultant requesting them and what they want, or a little bag / envelope thing to take away, then sometimes you can go to a walk in blood center - our hospital has one where from 8am to 10am every day you go, take a ticket and wait, then they take the bloods and send the results to wherever it is on your form / envelope. It saves waiting for a GP appointment.

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Hi lovely. I self paid for my consultation. I don't have private health insurance as I have too many pre existing health conditions so haven't bothered. Now suspected endo is on my records I doubt they would cover anything xx

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ahh noo :(

It costs quite a bit so I can understand. I've no idea the wait time for the nhs. I've heard other women say MRIs are difficult to request now. Also an MRI won't diagnose endo, the only recognised diagnosis is a laparoscopy.

As your private consultant has said surgery, is there any way you could get referred by your GP to a NHS gynaecologist straight for surgery as that would reduce the time to wait for an NHS consultation and then surgery.

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yeah, he said an ultrasound is like a black and white TV picture, an MRI is like seeing it in colour, and then surgery you can see the whole thing. I couldn't even book my referral in there was no appointments available (new online system), and average wait time it said was 5 months :( I'm seeing my doctor on 13th march anyway but the gynae yesterday said his clinic letter won't be with her in time for that appointment.

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See if you can get a copy of the gynae letter then you can give it your doctor? I did that, it was put in a sealed envelope

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I am getting a copy of it sent to me too, but he said when I have it the doctor will have it so I think they are dispatched at the same time xx

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ahh, I see, hmm frustrating. hope it arrives soon!

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i emailed his secretary yesterday asking if she could get it done before then, but she is so hard to get hold of I doubt she will bother haha

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do the deal with faxes? You'll need to get your doctor to fax a request through to the secretary and then she can fax your letter back. It depends if she will bother replying though :(

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he said she doesn't due to confidentiality and anyone being able to pick it up :( xx

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I know exactly how you feel. I had to pay for private MRI as my gp kept saying i didn't need referring to gynocologist and just requesting ultrasounds. As people have said endo doesn't always show up on MRI but unfortunately i have very deep and widespread endo and it did show up. I paid for that MRI £450 and then to see a private consultant to talk about it with £200. I'm on the waiting list for NHS surgery. It would have been £4000-5000 for my surgery and that was treatment as well as official diagnosis. I was told my surgery would be in 18 weeks which would have been this mo th. Then told maybe May. And i just called and she said June! It's frustrating i am just trying to take it day by day and get myself as healthy as possible for the surgery and doing all i can to fight the endo xxxx

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sorry to hear that xx specialist yesterday said the MRI would be around 1k, and the surgery privately around 5-7k. I don't have that kind of money spare and cannot get health insurance for it as it would be classed as a pre-existing condition :'(

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I know its so much money. I wish i had private healthcare but like you now i have it it wouldn't be covered. I've heard nhs don't refer for MRI unless have to as much more expensive than ultrasound etc and waiting lists are long x

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yep!! This is what I'm dreading. If I can't even have a consultation for 5 months, how long is the wait for surgery going to be!! I can't keep living like this.

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Take back control as surgery wont cure everything unfortunately.

It's about learning what helps you be it pain killers/form of exercise/ yoga/diet/music. This needs to become just a part of your life rather than it dominate your life. The sooner we manage that, the sooner we will start to live a little better.

It's not easy when you are in pain I know. It's so helpful though when you can manage day to day and this plays on in the background.

Lovely news about the wedding! All sorted? Is there a party planned? Honeymoon?

Lots of love x

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thank you x

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wedding not really sorted no lol!

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