How to get referred to a BSGE centre?

[OllieF]

I have been trying to get diagnosed for endometriosis for several years- over four or five years when I periodically got the courage to go to the GPs I have been referred to a urology centre that said they couldn’t see why I had to urinate so often, for a colposcopy that came up clear and an ultrasound that couldn’t find anything to explain my pain. Recently I finally decided to try and push at the GPs again and was referred to a gynaecologist who just wanted to put me on the pill because ‘that is the only treatment anyway’, and a laparoscopy is just diagnostic. I agreed because I was frightened of further procedures but while the pill reduced the heaviness of my periods and made them more regular it did nothing for my other symptoms, so when I went back for a three month review I had to push for the laparoscopy. My appointment was maybe five minutes long, basically just to say that, and I was given no information or guidance about what to expect, he didn’t even mention the possibility of excision etc. He has also consistently dismissed any other symptoms I try to bring up that I know to be related to endo as ‘belonging to other departments’. Having read about BSGE centres on here I checked and the hospital I am at is the only one near me that is not accredited. Because it seems like my bowel and bladder are involved I especially would like to see an accredited doctor who I can feel confident will detect and explain what is going on. My question is how do I go about do this at this point- do I wait for a laparoscopy date (it has been five months so far waiting) and then ask to be referred, or do I need to see the GP again and push to be referred to an accredited hospital? I really hate having to go through the whole process because beside the general difficulties of getting an appointment and getting someone to take you seriously I am autistic, so find it hard to communicate and advocate for myself. I am 25 but am taken for younger all the time and so patronised quite a lot by doctors. So I want to make sure I am doing it the right way if I have to!

[Mussya]

So sorry to hear about your struggle, it’s infuriating. I am looking for an answer to your question myself so can’t help there. Someone told me to try and go privately to one of the specialists and then they can ask for you to be referred to the on the NHS. Waiting here to hear others’ experiences.

At any case, think about taking someone else with you to the appointment, who would help you be more assertive or even do it for you, with prepared questions. I’m very assertive usually and still get tongue-tied in front of the dr’s authority.

The gyn you’re going to obviously doesn’t know what they’re talking about - the pill is 100% NOT a treatment for endo. The only conventional treatment is surgery (lap). They also diagnose through lap, as they take a lesion to biopsy. But it’s the only treatment, through ablation (which is considered less good as it only “burns” away the surface endo lesions) or excision (where they take out the whole lesion, and is considered a better solution) that has to be done by a super experienced surgeon/s, especially when the endo might have affected other areas like the bowels. I would read as much as you can to educate yourself - I’ve learnt a lot from an educational Facebook group called Nancy’s Nook.

[OllieF in reply to Mussya]

Thank you, taking someone is a really good idea as I always get so flustered at appointments. Hope you get some answers too

[B4bexs]

The NHS has a choose and book system, so by law your GP has to refer you to whoever you want to see. Find out your nearest BSGE centre and the surgeon who works there, then once you have the name go see your GP and say under the choose and book system I want to be referred to said doctor at your hospital of choice. Be firm with them. Also go on the endometriosis website and print off the endo check list, tick all symptoms that apply to you and take it with you. Good luck!

[OllieF in reply to B4bexs]

Thank you for this advice- is this the case even if I have met with a gynaecologist and am on the waiting list for a laparoscopy?

[B4bexs in reply to OllieF]

If I were you I would go to someone else, your gynaecologist is wrong saying that your pill will control it. Excision is the only method that will truly help with your symptoms, the pill will only mask what’s going on. 5 months is a long long waiting list. On Facebook there is an education group called Nancy nook, please look through the files throughly and look for your nearest recommended surgeon. I have found my surgeon through that group and he is not based at a BSGE centre but is an endo specialist. I have had 3 laps at BSGE and 1 with the endo specialist and he was much better xx