Finally a referral to an endometriosis sp... - Endometriosis UK

Endometriosis UK

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Finally a referral to an endometriosis specialist of my choice

Afrohair profile image
14 Replies

As it says got my referral!had a cancellation today the advanced nurse called me in for an appointment . I did not have a diagnostic lap by a general gynaecologist to get the care I need

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Afrohair
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14 Replies

This is amazing news I’m so pleased you got your referral. It seems pointless to have surgery with the wrong person- 2 of my laps were gynae before I was referred to an endo surgeon. Well done you for insisting. I found the wait was short for an endo specialist as not many women are referred to one in my area you have to have proven severe or complex endo before you’d get a referral. xxx

Afrohair profile image
Afrohair in reply to

It really is pointless I just hope everything works out on their end .the nurse is writing a letter to the specialist so I hope it all works out she said it could be a couple of weeks if I don’t hear in a month to ring the the g.p office I feel for you having had so many laps with a general I will argue if it ends up failing as I’ve had 2 open abdominal surgery in the past but I’ve heard quite a few people asking their g.p and being successful.ive had so many messages on here saying I won’t get a referral but I thought I’ve got to try .and the advanced nurse said I have a right to the care and totally understood what I’d been through she had already given me a sick note in the past so I’m glad she understood x

C2691 profile image
C2691 in reply to

Hi, hope you don’t mind me asking... in your 1st 2 laps with general gynaecologist was no endo found? Or was it just they didn’t treat you correctly? X

Afrohair profile image
Afrohair in reply to C2691

If you go on Jess1981 profile you will see all her struggles x

in reply to C2691

My first lap was done by my fertility dr endo was on POD & rectum removed all endo from POD but left Endo on rectum, 2nd lap by general gynae removed endo from uterosacral ligaments but left endo on rectum 3rd lap by endo specialist who cleared all the endo & I went onto to have my daughter. I had 3 laps within 13 months very frustrating but glad I got to a specialist & now have my beautiful daughter xxx

Afrohair profile image
Afrohair in reply to

So annoying that they left it all But glad you got your daughter in the end something positive came from it all . you should get a referral straight away next time x

Luna20 profile image
Luna20 in reply to

How did they remove it? Ablation or excision?

That's amazing news! Have they referred you straight to the BSGE centre or the doctor him/herself? Was it via choose and book? I hope it all goes to plan and they can accept it for you. It shouldn't be this hard but sometimes persistence pays off

Afrohair profile image
Afrohair in reply to

Thanks Hun my advanced nurse has sent a letter so I go straight through to the surgeons list and it’s a bsge centre Hun x

in reply to Afrohair

Oh wow that is super impressive with no previous treatment record. Really hope it works out and you get sorted

Afrohair profile image
Afrohair in reply to

I saw the specialist privately and he said I would have my diagnosis and treat with him rather than two laps and said I could refer on the nhs but I’d have to wait it all depends on your g.p

in reply to Afrohair

That's really great. I was lucky myself to get answers early in my journey too. I just saw your other long post about people begrudging you getting answers so I'm sorry to hear that. I can't understand how or why anyone who has been through this hell would want anyone to experience it. Although I think sometimes this site doesn't allow for context in messages so maybe there is a lot of misinterpretation and people aren't being rude but curious so they know how to maybe advise others. Also when you've been doing it for years and years you do want to be able to give the right advice to people, especially when you've lived it. I am excited to hear how it all goes for you. Definitely in the right hands with a bsge team. They've made my life much more bearable. I only had to wait 7 months from landing in the UK too which was amazing in comparison to the horror stories I've heard.

Pregnancy going very well. Scans been OK from yesterday. I just may have to expect a lot of bleeding. But baby is very active and we find out the gender end of next week. Thanks for asking. Take care

Afrohair profile image
Afrohair in reply to

OMG I’m so excited for you !yes sometimes it may be misinterpreted. I’ve waited since last April and still waiting I had my misscarrige in September so when I was pregnant the referral started all over again and they didn’t refer me to the right people I just hope everything doesn’t get miscommunicated my advanced nurse was certain I have a right to be seen by the person of my choice she was the one who said it compared to me having to shout about my rights lol x

Afrohair profile image
Afrohair in reply to

How are you?and how are things going with the pregnancy?xx

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