I was recently referred to gynaecology following an MRI which showed signs of endo. During the GP appointment, I asked to be referred to a specialist BSGE centre (since endometrioma was found and it's likely advanced). However, it seems that I have just been put on the waiting list at my local hospital to see a general gynaecologist which really concerns me, as it means I won't get the specialist care I need.
My understanding was that with an NHS e-referal you should receive a letter and be able to book your first appointment at a clinic of your choice. I contacted PALS and they said it's down to the GP. I'm a bit confused, does anyone know what's going on here?
Relatedly, if a wait list is longer than 18 weeks, do you have the right for the NHS to cover your treatment privately, if so how do you go about this?
Written by
scooby24
To view profiles and participate in discussions please or .
Hi. Unfortunately the NHS is in a mess. Ive been diagnosed with endometriosis for over 25 years and still get referred to the gynaecologist. The whole 18 weeks to see a specialist doesn't exist anymore. Within 18 weeks you should receive acknowledgment that they've received your referral, it just took me 6 months from point of referral to seeing a gynaecologist! For the gynaecologist to then refer me to an endo specialist. Ive never had an MRI scan! They started me on decapeptyl last week, I also rang the endo clinic and asked how long the wait for an appointment was, she said they'd received my referral and the wait was around 8 months, that means I'll have been waiting over 14 months just to see the correct specialist. I spoke to the nurse and the unit is overwhelmed with referrals, with people coming from hundreds of miles away just to see a specialist. It's the same for all services now, the wait for rheumatology and gastro intestinal clinics are the same. It's why so many are going private. I have been told that if my treatment doesn't work an appointment with my gynaecologist will be made, not the specialist centre, it's so disheartening! And like I said I do have an endometriosis diagnosis! They found it on my bowel, my intestines, I've had a fallopian tube removed and I was told they couldn't remove it all, the last operation I had was 7 years ago. Women's health is under funded and behind men's health, that's why we're in this mess. I wish you good luck, and hope that wherever you've been referred can see you quicker than I've been made to wait.
Thank you ❤I think I'm just used to this now, which is unacceptable in itself. I'm hopeful that the decapeptyl will work as I hate hospitals! Time will tell!
I know the feeling!! Almost 3 year iv been battling severe constant pain everyday 2x surgery's and in talk of a 3rd, iv had to give up working as I just don't have the physical energy. It is unacceptable, I refuse to go to A&E with my flares now because I'm just gaslight everytime 💔. Fingers crossed 🤞 it works for you x
Big hugs to you. I hope you find a pain free option real soon. I don't think there's much understanding as to how much endometriosis robs from us. I don't work either due to long standing chronic pain and bowel issues. I'm also exhausted. Sending love your way xxx
Thank you for sharing, I'm sorry to hear you've had such a hard time journeying to the right care. It's saddening that things haven't gotten better in all this time and worse even when it comes to the wait lists. I've now been told it's going to be a 40 week wait just for an initial appointment with a general gynaecologist but I am going back to the GP to try and move the referral to a BSGE centre so I at least get on the right pathway. The only reason I've had an MRI is because I have other ongoing health issues and this finding of endo was incidental. In a way I feel lucky that the radiologist looked for this, otherwise I'd be none the wiser, thinking my symptoms were normal as I've been dismissed for suspected endo in the past. Wishing you lots of luck with your care and hope you're seen soon.
It's a crazy NHS at the moment! I asked my menopause dr in Oct to refer me to endo clinic and he refused! He said I didn't fit the criteria! As I wasn't having periods and therefore couldn't be having endo flares! I wanted to punch him right in the face! Luckily I saw the gynaecologist in Jan and said he'd read my notes and couldn't understand why I hadn't been referred to endo clinic by my dr! You couldn't make it up! Ive come to the conclusion that drs are doing this to prevent and delay treatment by making us go all around the houses to get to the point. You could ask your dr to refer to an endo specialist, dig your heels in. It's usually a gynaecologist that'll find the endo by laparoscopy, they'll see how bad it is, then they'll refer if necessary to an endo specialist. Or you could go private and jump the queue a little bit? If you saw a private consultant and got a private laparoscopy, if an endo specialist is required they could then refer you direct to a specialist, but it would still be an NHS wait to see the specialist. Good luck with your journey. ❤
I would go back to your GP and tel them you asked to be refered to a specialist and ask them to change it. I'm not sure about how many weeks until you can go private NHS i think this is down tonwhether your GP agrees but I spent a year on the wait list for a specialist and I was already diagnosed as I paid private myself, my GP expedited my appointment 4 times (asked them to see me sooner) but unfortunately they kept refusing. Most likely they will want you to try some soft of contraception as a first to see if this will help symptoms
Thank you, I now plan to do just this! I hate that the first treatment option is contraception, I know it works well for some people but in the past the pill really affected my mental health so I'm cautious to go down this route. I think surgery is what I really need but looks like it'll be a long wait.
Yes iv had side effects from pill before, but iv had 2 surgery's in space of a year and it hasn't helped my pain or the growth (i have severe chronic pelvic pain due to endo) iv agreed to trail the pop again but so far no improvement. Good luck hopefully u manage to get ur referral swapped x
I would find an accredited BSGE endometriosis centre near you then book a private appointment with a consultant. This will be around £250. Then take your MR results with you to the appointment. The consultant can decide on a treatment plan and they'll write to your GP telling them to refer you to their care. Then you'll be on the NHS waiting list but you'll be still on the treatment plan. This is what I did and I was put on zoladex 9 months earlier than I would have been. You can't jump the NHS queue but you can get put into the RIGHT queue sooner x
I didn’t know you had to be referred to a specialist so this helps, i phoned every week for a cancellation appointment but nothing maybe you could phone and ask them for a cancellation too try and push it along, also I phoned the gyno secretary when I finally got my app as the appointments team were telling me over 50 weeks for urgent you could try that too see if they can squeeze you in. I only got an ultrasound in with that time to say iv got pelvic congestion( twisted blood pools in my veins at ovaries) I got referred urgently from my doc to a gyno and the time I had to wait was 42 weeks I’m nhs north Lanarkshire after my app I was told I’m now on a waiting list for surgery to see if it is endo however it has no time frame because she told me there is no cancer so they have to deal with them first (understandable) however it doesn’t help the fact that some days I can’t even get out of bed with the pain. Hopefully you get one soon enough.
Thanks for the tip to ask for cancellations, will try that. It's similar wait times in my area (Somerset), I'm being told it's a 40 week wait just for initial app with general gynae. Hope you're not waiting too much longer for your op <3
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GP Saga Continues... Anyone work for the NHS/have info for me?
Worth seeing NHS gynaecologist after private surgery?
NHS waiting times, considering going private - any advice?!
NHS endo appointment 
Is it worth paying for a private consultation?
