I contacted the Edinburgh Centre where I'm being referred and I was told I will have a long wait as I live in Glasgow so I am outside referral and because I haven't yet been diagnosed.
Then, I was told that when they receive my referral they have a meeting to discuss wether they will accept or decline the case.
I think this is shocking?
So it is a possibility that I will be waiting months only to be told I am declined and I am back to the start all over again.
I think the healthcare system is failing terribly with this disease and it disgusting that so many women are having to wait huge amounts of time just to get a diagnosis!!
I've been struggling for 7 years and still, there isn't a light at the end of the tunnel.
Written by
staceymacg
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I completely feel you here. I spent 7 years with 'mystery pain' which the gynaeo finally told me was endo, only to be told at my last appointment that she couldn't 'feel' any when prodding my stomach and I should probably just go back to the GP and ask about IBS. It's so frustrating to be passed around, I was considering going to the BSGE in Birmingham but feel I'd be in a similar position to you! x
I would discuss this with 'Endo UK' who host this site. Link at top of page, or just Google. Their trained advisors are excellent, and will advise you on the best route to follow.
I think your GP may be at fault, for not having sent you down the correct route for a diagnosis. My understanding is that BSGE clinics are only for people with already diagnosed Endo, who have already had a laparoscopy, that shows Endo of a severe enough nature to need to be dealt with by a BSGE team. I know it is frustrating, but I think you may have to go back to your GP and ask to be referred for a diagnostic laparoscopy, then if that team find the types of Endo that are beyond their capabilities, they will refer you to a BSGE Clinic.
However, do talk to 'Endo UK' as they will be able to tell you the exact route or 'protocol' that your GP is supposed to follow, and if they give you all the official links and info, you can go back to a GP and say 'this is what you are supposed to do'. Sadly, loads of GPs are still fairly ignorant about Endo. Is there another ... younger, more 'go-getting' GP in the practice who you can see? You don't have to stick to the one GP you are listed with.
I hope this helps. It is so hard, as at least 10% of all women may be affected by Endo, and I believe BSGE Units are struggling to cope with the numbers, and it is all still not helped by GPs etc (not to mention family, Friends(?) and bosses) who - still !! - just dismiss it as 'Women's trouble' and don't know the best paths to follow, or help and advice to offer.
Just from reading this one of your posts, I had not seen your mention of the lap by a general Gynae, but now I've seen that you had said it in other posts. I really didn't mean to tell you what you already know. However, it might help if you talked to 'Endo Uk', or the Facebook Group. Someone at either site may know the best ways of appealing against these rigid codes.
You are so right - about general gynaes often not being skilled enough to spot endo; it is one of the big flaws in this system of referral. As I'm sure you do know, they often are not skilled enough to search all of the 'hard-to-get-at places' during a lap, nor are they always capable of recognising all the forms of Endo, and ... are not always so good at removing it all, or in the best possible ways.
I believe it may be possible to ask for a private consultation with a BSGE - level Endo Specialist, I remember Lindle talking about this when she used to post on here. Maybe send another post asking for people's experiences in doing this? But leave it until a weekday, as far less people seem to check in here at weekends.
No it's my fault I thought I said it in this post!
My gynae who was my surgeon has made the referral and said e really fought my case as I've been suffering for 7 years and still no closer to answer so he is very adamant for me to see a specialist there! Xx
Wonderful news! I hope it all happens soon, and that it all proves wonderfully successful, and that you are finally pain-free.
Let us now how it goes. Meanwhile, do things you love, so as to spoil and treat yourself. Stress is the worst for these sorts of conditions, so chill and have fun.
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