Endometriosis UK

How long does first referral to gyne take?

Starting to feel very frustrated, upset and low. Things are just generally getting worse, and I am still waiting for my appointment to come through with the gyne. This will be my 9th week waiting now.

How long did everyone else's first appointments take?

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I think it all depends on where you live and what hospital you go to. My Gyne appointment came through within 8 weeks, but my I waited about 14 weeks for an ultrasound because they were 'backlogged and hadn't issued appointments yet.' It might be worth giving the hospital a call and seeing when your appointment might be processed? Good luck :) x

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One way to possibly speed up the appointment..is to have a CA125 blood test.

it's cheap and if the results are elevated which they can be for endo or for cancer and in the vast majority of cases of course it is just the endo that causes the increased levels, but because on the minute risk of it being cancer it gets you to jump the regular appointment queue for referals.

Speak to your GP about the test.

It only costs the NHS £25 and about the same if done privately which is another option if your GP doesn't want to sort it out for you.

The cut off line is a result of 35 ish. Below that and you won't be jumping any queue, Above that will speed things up . If you have had a scan that showed cysts and you have an above target CA125 result too then you race up that queue even quicker.

Otherwise waiting lists do vary and can be very long in some areas...several months !!

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I think it must depend on the area, as I went to the doctors (after years of going) but this time I was in lots of pain, but this time they took my seriously. Within a few days I had an ultrasound appointment for a couple of weeks later, I got my results back after two weeks and was referred to the gynaecologist which again was within another couple of weeks and I got my lap appointment very quickly again for 4 weeks later. The whole process begin end of August 2012 and I had my op on 9th November. This was Greenwich Borough of London. I was quite lucky in that I managed to get seen in a private hospital through NHS because the NHS hospital was booked up (I wasnt complaining at all). I really hope you manage to get things speeded up though for you but I do think it quite often is a postcode lottery, which is not fair in the slightest. Fingers crossed for you. Xx

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Mine took 8 weeks but go back to dr and request it be made urgent

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I've been going back & forth to the drs about it for years but last week the doctor finally agreed to refer me. I got my 'book you appointment' letter through yesterday & booked an appointment to see the gynae on the 18th nov. I'm in the oxfordshire area if that helps. I'd either give the local gynae department a ring to chase or go back to your gp.

Xoxo

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Thanks everyone. I'm in North Wales :) Fingers crossed it wont be long! xx

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I agree with Impatient; get a CA125 blood test done. That's what got me fast tracked because I had a reading of over 35 and then a scan showed a 'dark' cyst on my ovary. Saw a Gynae consultant in less than 2 weeks. Got offered a laparoscopy by the Gynae at the hospital at my appointment and within 3 weeks of referral I had had the op and I was told I had stage 4 Endo and that the cyst was not cancerous at all, but filled with Endo blood! This was after 18 months of biopsies, scans, tablets and in the end also an endometrial ablation op! Hope you can get the blood test done and it pushes things quicker for you if your reading is high. X

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Get in touch with the hospital to see whether they've even received the referral from your GP. I'd been waiting for 4 weeks when I found out the letter hadn't even left my doctors surgery because the staff who are meant to type up the letters were 'back logged'! My symptoms had got much worse during those 4 weeks so my GP changed my priority from routine to urgent and faxed my referral the same day. I live in the North East of England and she advised that I should hear from the hospital within 2 weeks. How soon you get seen depends on what priority your GP has advised you should be.

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Can I just ask for the CA125 test to be done or does the doc have to send me for it? :)

Thanks Alma_Matters, i'll ring up and check! :)

Thankyou everyone for your replies! xx

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It depends on what the Docs surgery can provide. Some can take blood and send it off, others give you a referral note to take with you to your local hospital phlebotomy (blood taking) clinic which is usually on a 1st come 1st served basis when you turn up, and no appointment needed. Can be full of diabetics having their bloods checked etc, so you might have to wait, but the results do come back in a day or two. If the queues are long, but you are not in a hurry, then don't hang around for hours, just go home and be sure to pop back there first thing next day to be seen to a lot quicker. The later in the day you go, the longer the wait. And usually they close up shop about 4pm so the collected bloods of the day can be taken or sent to the lab.

Having it done privately is not something I have done, but i did have a look online a while ago and several private surgeries were offering the test for about £25 and ofcourse that would be at a time convenient to you rather than waiting in and NHS clinic for ages.

Even if you get the results privately, ask the clinic to contact your GP immediately who will then pass that on to the gynae team at the NHS hospital.

It is only useful for getting the initial first appointment with a gynae and until you have a definitive diagnosis.

Once they know you do have endo (and not cancer) then waiting lists are as per usual....unfortunately.

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Got my "you can now make an appointment" letter yesterday. :)!

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