Edinburgh Endo Clinic

[Axolotl23]

Hello! Just wondering if anyone has been on a loooong waiting list to be seen by an Endo specialist for the first time since diagnosis? Currently, it's an 80-week waiting time in Edinburgh. I know there is an option to go privately but I am just totally shocked that someone has to suffer from pain etc for 80 weeks without a treatment..GPs can only give painkillers since the case is referred to Endo Clinic. Any shared experiences would be much appreciated. P.S. I am not considering going private..

[DarkStar85]

Hello, no advice sorry. Just wanted to say that is a shocking waiting list. I'm in Glasgow, seeing a gynae first time today on BSGE. We have health insurance so I was lucky to get an appointment quickly. But its only intial consult. I've only been diagnosed through TV ultrasound so I'm not sure what the wait times will be for potential surgery. Its ridiculous women have to wait so long and suffer. Have you had a lap or any treatment so far?

[Axolotl23 in reply to DarkStar85]

Thank you for your message and glad you are being seen!No, it's an 80 week waiting time for an initial consultation!!! I have no treatment, nothing..I am dreading to think when my lap surgery will be. Probably in 3.5 years at such a rate..

[DarkStar85 in reply to Axolotl23]

Have you had the TV ultrasound to give an idea of potential extent of endo/adeno? I was seen quickly on nhs for the ultrasound after a raised Ca125 blood test and symptoms of ovarian cancer bloating, urgency to pee, less appetite etc. If you haven't had that test and initial ultrasound get on to GP today.

I know you said you don't want to go private, but an initial consult is usually 150-200. I have an appt within 2 weeks. Some different to 80...I would spend similar on a BIG night out. Best of luck x

[Axolotl23 in reply to DarkStar85]

Thank you for your encouragement! I had a private ultrasound, then CT and MRI abroad (cheaper). Have diagnosis - stage 3 endometriosis - but no actual treatment while waiting..

[DarkStar85 in reply to Axolotl23]

If you have the diagnosis you could ask the GP to try coil/birth control or Tranexamic acid. And also ask for stronger painkillers. Just push them if you've got symptoms that need addressing. People swear by anti inflammatory diet to help but I can't push myself to go fully gluten free and dairy free! I cut down to minimal though.

[Axolotl23 in reply to DarkStar85]

Thank you very much for the advice-much appreciated. Unfortunately, the GP does not give me any treatment (birth control, etc), only painkillers, since my case has been referred to the Endo Team..

[Honeybeehappy]

Hi there. That’s really poor treatment and your GP could be doing more. I’m in Glasgow and have a long history of surgery, scans, hormone meds etc. My GP is in touch with Gynae by phone and email often to assist with my treatment, at the mo. Being on the pill to treat my endometriosis didn’t suit me and hormone patches were ok but inconvenient. I’ve opted for chemical menopause through Prostap and Tibilone to add back hormones and keep me healthy and it’s really good for me. No periods or pain and I feel good - I have stage 4 endo with 3 surgeries, a lifetime of crap periods and destroyed fertility so where I am right now is ok considering menopause is 1-5 years away. There are many options that your GP could discuss with you and handing out painkillers isn’t the end of his/her role. Would you be open to changing GP? You should be offered alternatives to just painkillers. I’d suggest getting a private scan to see what you’re dealing with. Be aware that this won’t speed up NHS surgery times but it will at least give you some answers. Also be aware that ultrasounds don’t often show the full picture but they can show cysts, fibroids and indicators of adenomyosis.

[Axolotl23 in reply to Honeybeehappy]

Thank you very much for your reply. I agree that it's a bit odd to be without a treatment while on the longest possible waiting list. Supposedly, my GP practice is very reputable..perhaps, I just need to speak to a different GP within the same practice and see if there can be a treatment arranged..

[Honeybeehappy in reply to Axolotl23]

I think that’s a very good idea. Hopefully you can agree a plan and make progress with your treatment whilst waiting. In my experience, endo centres are quite a new concept but have very few staff. Other gynaes outside these centres are well aware of endo with good experience of treating it and can also help so do query that pathway and ask for an alternative referral.

[BloomingMarvellous]

it’s a whole shitfest no ?

All I can say is keep on the list, ensure you ring and check they still have you on it every so often as some find they disappear off a list and have to restart again ( a drama none of us need ).

In the meantime endo pain can respond better to nerve based pain killers like Nortriptyline ( the low dose is 10mg but I use only half that nightly ) and find that the least overall damaging pain killer but I combine it with self support to manage the condition. These are specialist pelvic physio (@corerecoverypt is a good start point ) , Curable App ( your GO should be able to prescribe a free six week trial and if you find it helpful then it’s minimal cost) omega 3 daily, anti inflammatory diet and also get a lot from Katie Edmonds bible on endo “ Heal Endo”

All should be a ongoing support around any other care and surgery you might need x

[Axolotl23 in reply to BloomingMarvellous]

Thank you very much for your advice - how kind! And that’s a great idea about ringing the hospital now and again to check if still on the list