Can GP refer you to a BSGE centre EVEN TH... - Endometriosis UK

Endometriosis UK
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Can GP refer you to a BSGE centre EVEN THOUGH GYNE SAID NO

Stacey85
Stacey85

Hi,

THIS IS A LONG ONE, SORRY : /

When I first spoke to my GP about getting referred to a BSGE centre he said he couldn't unless endo was diagnosed. I wanted to go to a BSGE centre because I really didn't trust the "general gyne" I was assigned to.

She told me at my initial app that I didn't have endo, non of my symptoms were of endo. And even if I did you don't get endo symptoms leading up to your period. Only after!!! Then told me the best way to get rid of it was to get pregnant!!!!

That's exactly why I didn't want her doing my operation but I had no choice but to go through with it. Low and behold they found endo on my ovary and bladder. Abnormal cyst in my cervix. They burned ti off my ovary and left my bladder incase they damaged it, not bothered about the abnormal cyst apparently!!

So I called them a couple of weeks ago to ask them to refer me to a BSGE centre to see a specialist about my bladder and to speak to them about it possible affecting my bowel and chest.

I received a letter last week telling me it isn't "severe enough" for me to see a specialist!! Even though the NICE guidelines state Refer women to a specialist endometriosis service (endometriosis centre) if they have suspected or confirmed deep endometriosis involving the bowel, bladder or ureter."

they have also covered their ass in the letter by putting "they only noted a couple of very tiny deposits of possible endometriosis that don't merit a referal."

So they told me it was endo after my operation and are not telling me its "possible" endo. SO FRUSTRATING!!!!!!!

I have a feeling they are going to try and fob me off by saying its not deep even thought they don't know it isn't!!!

Is there anyway I can make my GP deal with this now so I don't have to deal with that incompetent gynaecologist again?

12 Replies
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Depends where in the UK you are. In England yes they can although alot don't know they can put how to. Its not a normal referral visa choose and book. They have to refer you to tertiary care.

In Scotland I believe they are currently only accepting referral from gynaecologist even though they should accept it from GPs.

They are probably saying possible endo, as they didn't actually take any samples to test (because they burned it off). Sounds like this general gyneacologist knows nothing so it might also be worth writing a complaint to the hospital about her lack of knowledge. The nice guidelines are very clear that a gynaecologist with a minimum of a specialist interest in endo should see anyone suspected of endo, which based on what you've did they don't have. You could also include that you think under the guidelines you should be referred and that's the outcome you want from your complaint.

Stacey85
Stacey85 in reply to Christin_a

Hey,

Thanks for getting back to me.

I thought this would all become a whole lot easier after I got diagnosed!!! And I got told twice leading up to my op if endo was found they would refer me on, now they have change their tune!!!!

I'm in Scotland, I have my GP calling me tomorrow to talk about the shitty letter I got. I agree with you about the complaint, I was going to give PALS. a call once I know whats going on about BSGE centre. I was scared to rock the boat at the moment.

My gyne didn't even do my op, it was someone I have never met. She just sent me the latter and signed it!

How can you find out if a general gyne is equipped enough to deal with it? Every time I look it just brings up LINKEDIN.

xx

Christin_a
Christin_a in reply to Stacey85

You can usually find out what areas of interest they have by giggling their name and the hospital. Sometimes it's on the hospital website, what's they have a bit about each of the specialists etc.

Even if you get a referral without the hospital. I would recommend worrying to PALs to complain. As even if you don't need to to get the referral. Or may stop someone else having to go through the same thing.

Stacey85
Stacey85 in reply to Christin_a

I couldn't agree more and I actually called them this morning. They are going to get the clinical director to call me to discuss. Cant help but think they will all be thick as thieves and I won't get anywhere speaking to their boss. But It's worth a shot xx

Hi

I paid privately to have a consultation with a gynaecologist at a BSGE centre/private hospital and I am in Scotland.

You can pay for a consultation which I did and then be referred back to the NHS waiting list if you need more treatment. I was told me op would be done by that same BSGE gynaecologist as she works both in the private hospital and NHS.

Hope that helps a little.

Where about are you from?

X

I live in the Scottish Borders. I have to go to the borders general hospital (super small) Anything bigger then I need to get referred into Edinburgh.

I can pay to have a consultation privately. I'm just worried I need an MRI to check to see how deep my bladder endo is. That would be super pricey!!

Then I would defo need referred back to the NHS some how xx

Hello you could always ask them to refer you back to the NHS for an MRI.

I would hate to think the cost of one of those scans 🤭

That looks quite sore, hope it doesn’t hurt too much.

Have the NICE guidelines with you when you speak to GP. Don’t forget ultimately the GP is responsible for your health, hopefully they’ll be embarrassed by the treatment you’ve received. Have you emailed the photo to them?

You can request a copy of the hospital records, it’s free of charge, and worth doing to make a complaint. That way you can see what’s been written and how much endo was there and where they actually looked.

I went private, made life much easier. I’d had an NHS referral but thought it was to the wrong consultant and cancelled. Trust your gut reaction, instinct is very useful 😊

Good luck, let us know how it goes

Stacey85
Stacey85 in reply to Moon_maiden

After I put the complaint in I got a call from the clinical director. She was so lovely and was happy to write a letter to Professor Andrew Horne.

He's quite a big deal in Scotland. He's been on the news talking about endometriosis before, I remember seeing him on TV.

Her letter to him is quite basic but I'm praying he will take pity and allow me a consultation. It's a step in the right direction anyway.

Might not need to go private after all xx

Moon_maiden
Moon_maiden in reply to Stacey85

That’s great news 😀

How are you feeling now, is the wound looking better?

I’ve heard the name, probably seen it on google somewhere.

I’ll keep fingers crossed it won’t be too long.

I was originally about to discharged from outpatients without being told what they found at all.... then when they did the lady who did my investigation said it was bad, they found it straight away on my ovaries and didn't look anywhere else.... I was discharged unless symptoms didn't improve....they didn't i was referred back and saw someone else, he was horrible, told me i have had the operation now and i should be better.... I had been phoning a helpline every day and they were so lovely, and he told me "who you going to listen to, them or me?" i was like...well them tbh you dont have endo and you cant tell me what i feel....i will follow you all day and kick you repeatedly at varying degrees in certain areas and see if you can focus???? :|

for me it feels like electrical shocks in my body, at varying random times, and varying degrees, then it can be cramps, or gripping, twisting.....its a horrible thing to experience.... long story short i paid to see a private GP who referred me to a specialist....yeah i had to pay for it, he basically said to me if i have it where it is suspected on my diaphragm, as my lung can sometimes collapse with my monthly.... then there is nothing they can do to remove it, the answer is to just stop the hormones..... so i am currently on Desogestrol, i have the coil and an implant.....the coil on its own did nothing..... had it a year and it didnt help anything....added the implant and my cramps kind of got better..... and the bleeding every day stopped....but i still got horrendous monthly.....added the desogestrol finally i am better than i have been for years.....two months in with all 3 and need to wait another 4 to see if it really has helped.... i still get my bowel and bladder symptoms, and random days of pain, but i was in pain all day everyday basically....i had no relief..... ever....

I would highly recommend if you can saving to see a private consultant if they want to do any investigations they usually work on the NHS as well and will happily refer you to their care on NHS..... :) Good luck with your journey..... I know how awful it is to feel like no one cares x

This is why I won’t let them do diagnose and treat if they have no experience do you just have one incision as I don’t know how they could have seen it all with that one incision. I would be so upset in your position .you could try pals if you like I tried to contact them and they didn’t really help me they told me to go back to my g.p .you might be best going to your g.p manager

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