Endometriosis UK
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GP won't refer me because she doesn't want to look silly.

Hey everyone. I was diagnosed back in 2012, I then had a lap to confirm it and they found extensive ovarian adhesions and scarring on my uterus. Because they couldn't find any active endometriosis the diagnosis changed to either PID or endo. I also saw fertility specialist after the surgery who told me that if I couldn't conceive after 3 months I should be referred. It has been 3 years now and most of the time I was ok, but then this year the pain came back and every month has been stronger. So bad in fact that I passed out a few months back. I went to my GP who referred me to a scan and said if it didn't show anything I would need to be referred back to the hospital. My scan was in September, it is now December and I still don’t have the result. I can’t get an appointment with that doctor again as she is always fully booked and the one that I have been seeing now is utterly clueless. I told her I am trying to conceive and she said it would take a minimum of 18 months, she completely ignored me when I said I am in pain. I have severe pain after sex, so bad that I can’t even move afterwards sometimes, I have had recurring thrush for the past 3 months and last week when I went in to speak to her she said she cannot refer me without the scan result as she “will look silly”. I tried telling her the pain is getting worse but she just talked over me and dismissed me. I don’t know what to do right now and I am getting desperate. I know my body and I know that what I am feeling is the same as I had before but worse. I am now waiting for them to find my scan result which have gone missing, but I was wondering if there is anything else I can do in the meantime to get referred? I can’t afford to go private and I think changing GP now will just delay things further. I am booking an appointment with a different doctor for next week and if they don’t have my scan I will demand a new one or a referral, but has this happened to anybody? What was the outcome?

14 Replies
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They can't refuse to refer you. Keep trying to get an appointment with your doctor. Or ask her receptionist to get the doctor to call you.

If you have no luck, maybe you should make a complaint. Because they can't not refer you.

I asked my old gyne for a referral and she originally said no. And that she can treat endo. I got so annoyed with her and I kept demanding to be referred to a specialist centre. Which she said she would do. I was waiting 2 to 3 months for the specialist centre to contact me. And it turns out my gyne never referred me. I made an official complaint.. of course I just got the usual apology and how they are working on not letting this happen to anyone else.

Hopefully you can get your doctor to refer you.

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I booked a new appointment with a different doctor and will definitely make a complaint if I don't leave with a referral letter.

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That's awful hun. I work at a Gp surgery and I know they can be a bit unsympathetic some times. Don't let it go, keep pushing. See every GP if you have to until some one does something about it. You're entitled to a referral. I don't see how they can lose you're results as they all come through an electronic system so they must be able to access them. Sounds like they're fobbing you off a bit xx

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I have made a new appointment with a different doctor in 2 weeks time. Apparently they can't find my results on the system and their admin team is searching for it.

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The results will be available electronically. So the consultats can access that if the GP can't get them - which is an excuse. Keep pushing for the referral. Quote the patients charter to the GP - they have to refer you.

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I don't know what the patient charter is but I will have a look at it. I am definitely gonna push harder on my next appointment.

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Hi - I had a look through your posts and see that you had extensive adhesions and have predominantly left-sided pelvic pain, severe pain after sex, IBS type symptoms and what you describe as an inverted uterus, which probably means a tilted or retroverted uterus. These symptoms all point to rectovaginal endo which is regularly missed in general gynaecology as it is often hidden beneath adhesions. In many ways it is best that you have not had a general gynaecologist meddling with this as it is complex to deal with and must only be treated by specialist gynaecologists in an endo centre. But you do now need taking seriously and for a doctor's main worry in not referring you to be that they will look silly is a reflection of their ignorance.

As ultrasound scan is not a diagnostic tool for endo so what exactly she means is not clear - is she saying that if the scan comes back clear you don't have endo therefore a referral is not warranted? If so then this is just another example of her ignorance where endo is concerned. The protocol is to refer if endo is suspected as the cause of your pain (and you already had a diagnosis) so she would have to be prepared to now confirm in writing on your medical record that you don't have endo which would be a foolish thing for her to do and would no doubt help in making her look even sillier in the long run.

Ultimately the only thing that matters is that your symptoms suggest that you need specialist attention and the road to a referral is going to depend on where you are in the UK so can you let me know your location. x

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Thank you so much for your reply, yes I did mean retroverted uterus. Basically if the scan came back clear then I would be referred as that would mean they couldn't explain my pain in any other way and would need further investigation. I am in London, when I was referred to the hospital after the gyneo consultation I was actually treated by an endo specialist. x

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Hi - if by an endo specialist you mean a BSGE accredited centre then they should have instantly picked up on these symptoms and investigated for rectovaginal endo which would mean a rectovaginal exam (fingers up bum and vagina at the same time) and an MRI. Were these carried out? Unfortunately even the specialist centres are not all performing as well as they should and you need to choose carefully. As you are in England you can choose who you want to see and it is going to be vital that you do your best to get this right from now on. Click on my name and look at my post on rectovaginal endo and on how to find a specialist and feel free to send a private message if you need help. x

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Hi, I haven't had any of those exams, just the standard ones, a laparoscopy and a hysteroscopy. I don't know if he is accredited but I do know that he specialises in endo and laparoscopy both in private care and in public hospitals. Yes we do get to choose the hospitals and centres we go to here but unfortunately we can only get there with a referral from a GP. I will print out your and read it after work.

I have an appointment in 2 weeks time and will push harder for a referral.

Thank you so much x

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A lot of gynaecologists will say that they 'specialise' in endo and laparoscopy as both come under general gynaecology which is essentially what they specialise in but in a general way. But to excise endo, especially in the complex areas, they need to have undergone additionsl surgical training to do this so you need to check your surgeon is accredited which will mean they have this specialist training. You don't need to push for a referral as it is your right under NHS Choices - whether for an initial referral or for a second opinion. All you need to do is put it all down in a letter making sure they know that you know your rights and stating where you want to go and if they refuse you would then ask them to confirm back formally in writing what entitles them to refuse you. I have not come across any GPs yet who have still refused after this as they will know there is a complaints procedure that they would want to avoid. Anyway have a good read at those posts. x

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Ring the specialist centre yourself cry sound desperate just do it and then tell the doctor they are expecting a fax referral, give them the number. That's all I did, I saw a locums not sure if that would be an idea?

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I have a new appointment for 2 weeks time and I will push for a referral. xx

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Brilliant don't leave until you get one x

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