Appointments take forever!: I first went to... - Endometriosis UK

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Appointments take forever!

Crystal_d profile image
11 Replies

I first went to the Dr's over a year ago with symptoms (I'm not diagnosed yet), have had various tests , bloods , ultrasound, internal etc , my Dr put in referral for pelvic pain clinic a month ago, I've received letter today with gynecology app 17th August! This seems like a long time to wait , 5 more months on top of the year or so I've already been back & forth to Dr's, I'm feeling like I'm just being left to suffer , anyone else experience long waits ? It's really getting me down feeling like rubbish all the time x

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Crystal_d profile image
Crystal_d
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11 Replies
NW248 profile image
NW248

Yep, endless waits and appointments and often not the tests you need. I got fobbed off by gynae with "period problems" I didn't get an official diagnosis until I saw an endo specialist.

Endo, rarely shows on an ultrasound but usually does show on an MRI providing it is one of the more modern machines. Try and see if your GP can refer you for one, but you might have to see a consultant. Incidentally I paid £200 to see a consultant privately which cut out the waiting time for diagnosis and then got put on the NHS list for the op. If you have the money it may be well worth it to get your life back.

Crystal_d profile image
Crystal_d in reply toNW248

Thanx for your reply, I'll be back on the phone to the Dr's mon morning, glad I found this page & people who understand what I'm experiencing, I will maybe have to go private if I don't get anywhere x

NW248 profile image
NW248 in reply toCrystal_d

Look up the BSGE list on the internet, it lists all their approved specialists.

FuzzyFrog profile image
FuzzyFrog

Sounds like a case of postcode lottery! I'm in Wales, i had my referral go in to gynae clinic 2-3wks ago from docs, my symptoms started just over a month ago with emergency hospital admission for tests (they had to rule out appendicitis, stones etc). Phoned the department last week to check waiting list time before i considered paying privately and was given an appointment over the phone for first consultation end of next week. Shocked was an understatement! I also got in for second ultrasound two weeks after GP request. Think I'm lucky that i come under an area with a smaller hospital which must have shorter waiting lists than the larger city hospitals.

Really sorry you have to wait this long, I'd suggest that if you are struggling or things get worse, go back to your GP each time and ask for your referral to be pushed through. Good luck!

Crystal_d profile image
Crystal_d

Thanks , I'm going to call the Dr's tomorrow & see if they can get it brought forward, fingers crossed ! X

lwp75 profile image
lwp75

I went to the doctors in October, had to wait till end of December for first scan, got seen by a consultant very quickly after that as was fast tracked due to their findings (luckily not the cancer they were worried about), got my diagnostic lap two months after that (earlier than they expected as they were putting on weekend surgery to get the waiting list down). Just had my letter with the lap follow up and it's not until June! I can't wait that long to find out what the found in the lap and discuss next steps so am paying for a private consultation on Friday. Not sure if that will help get me into the nhs waiting list for next op as someone had above (that would be ace!) but just want to discuss next steps sooner. I would give the doctors/hospital a call to see if you can speed it up, it's always worth a try x

Heloo85 profile image
Heloo85 in reply tolwp75

I waited 12 months between my first lap and second surgery and that was under priority. I was put on zoladax a few weeks after my first lap, at my follow up. They may have removed your endo during the first lap hence why they've got you waiting for follow up. Not everyone will have a second surgery, most are treated in first. Those that have multiple organ involvement who need a team of surgeons will have to wait for the NHS to get a team together.

lwp75 profile image
lwp75 in reply toHeloo85

Mine was diagnostic so nothing removed so 16 weeks feels like a long time to wait xx

Heloo85 profile image
Heloo85 in reply tolwp75

Definitely is but in saying that even though I got in fairly quick it was still 12 months from diagnostic to surgical treatment. I had my diagnostic at a private hospital so was obviously was less snowed under then referred to NHS hospital, which took 6 months to even get me an appointment to discuss surgery then more re-testing, then had to see a colon guy, then surgery. Id buckle up .. It will probably be a long ride. Good luck xx

sophie201795 profile image
sophie201795

I had to wait nearly 10 years to even get diagnosed and have been on the waiting list for a lap for 30 weeks now.every thing about my endo is getting worse each month to the point I now can't move and it takes me 2 weeks to recover after a period but still nothing will be brought forward.

Crystal_d profile image
Crystal_d

Sorry to hear you've been suffering for so long, it's annoying how it's just looked as painful periods when it's so much more than that & for me it's all month round sometimes I get a few days less discomfort, it takes over your life & is debilitating at times, I wasn't happy about being told to just chew on pain killers! That's not sorting the problem, just feel fobbed off, I'm going back to Dr's this afternoon but won't hold my breath, half the problem is I don't get to see the same Dr each time & have to explain the whole thing over & over again & they don't seem to link anything symptoms wise , I hope you get some answers & relief soon x

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