Endo Specialist referral. Sick of GPs

Hi all,

I am sick of the doctors at my surgery, they are stuck in the dark ages when it comes to Endo. Despite having a laparoscapy and finding and removing some Endo in January (I'm now having all sorts of problems again which I know are all symptoms of Endo as I've had them before) my GP still thinks my chronic back pain and leg pain is sciatica! I went to the spinal outpatients department the other day as my GP had referred me there and they had no idea why I had been sent to them but could see how disgruntled I was and they are now helping by doing an MRI on my back to prove to the GP that my back isn't the problem. Also my GP keeps saying that they will refer me for different things and then forgetting to do it, then 2 months later nothing has been done and it's more time that I have been in pain and longer to wait for each step.

So... My question is can you ask your GP just to refer you to and Endometriosis specialist and do they have to do it? I just want to deal with someone who knows and understands the condition. I keep going around the houses at the moment with various GPs and consultants and I don't want this to go on for years and my treatment be inappropriate or so slow that it makes matters worse!

Thanks, Nat

6 Replies

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  • Short answer ... Yes ! That's what we did in the end (although it was for a second opinion). You have the right to request a referral and the gp should do it. Hope you get sorted x

  • Hi Nat

    You could ask your gp to send you to your nearest hospital that has a Gynaecology Department that also deals with Endometriosis as that is to do with the womb and ovaries as these organs or the most ones to get this problem and also the endometriosis can attach it self to the bowels as well. I can understand that you do not want this to go on for years, like it did with me back in the days. I got diagnose with this condition when i was 17. I am now nearly 54 and still having problems with it. So I hope you get sorted very soon. :-)

  • Yes DEMAND one there are certain hospitals that are BSGE accredited you are entitled to be referred to one even if it is out of your area the health board have to fund you as they are Specialist Endo Centres. After you have asked pester the Gp's make sure they have referred you etc. I know you really shouldn't have to but I find mine are useless too and it's the only way to get something done sadly!

    bsge.org.uk/ec-BSGE-accredi...

    I was referred to one which is 30 miles frrom where I live before I got the actual diagnosis and had my lap etc there. I had a couple of appointments with a Gynae at my local hospital before that but have found the other one so much better my GP seems to know nothing either!

    Take Care xx

  • Hi Nat - sorry to hear about your issues with GP. Have to say I actually moved GP because mine was so unsupportive on one occasion I actually cried in my car with fury and disappointment - and oh yes during one smear test the nurse told me there wouldn't be an issue if I just had more sex, which really stung given the issues endo can cause in that area! I really wish I'd made a formal complaint which i didn't - anyway i digress....

    The point is that you can move GP, which I did. I am now at a much better practice. They have also referred me to a hospital that has been much more helpful, gave me the MRI I had been after for some time without any messing around and were very clear on the options for me going forward - and also didn't pressure to me to take a particular path.

    Having said that, that hospital is not on catlou's list - was completely unaware of the BSGE accredited centres which I'm now going to look into - thanks catlou!

    Good luck and don't let your GP palm you off! As the lovely nurse at my new surgery said the other day 'we're hear to help you and support you in the decisions you make, things have moved on in GPs surgeries the last few years' - well in some practices it has!

  • Hi Nat, I've had similar issues with my GP and following some advice I got on this forum, I wrote directly to my Gynae Consultant to ask to be referred to the Endo Centre I wanted, as my GP didn't seem to understand what I was asking for! After a bit more confusion with my GP, I finally got a letter from the Gynae centre last week, saying they have referred me to the Endo Centre. So please persevere, its the only way, unfortunately.

  • Hi Nat, I relate with you on all of these matters. I too am at a loss for getting help. I just spent about two months seeing a physio who was very open to my belief that it was caused by endo. It is comforting when they don't turn there back on you. My MRI did show some issues but unfortunately they didn't scan the sacrum at the same time that they did the lower lumber which is ridiculous. He was treating me for SI joint dysfunction and yes he's right but let's get to the root of the cause and change it right! I also had my pelvis and hips MRI'd and show bilateral trochantric hip bursitis and bilateral ovarian cysts. He didn't think that the bursitis was significant enough to explain my pain. I will share with you that purchasing a sacroiliac belt was helpful I wear it for support and I can do little walks for my dogs now. I too see that the pain changes daily and keep a calendar to track if there is a pattern that may indicate a hormone influence, but due to a hysterectomy in 2003 I don't know when I'm cycling can only tell sometimes when I'm ovulating due to pain.Just wanted you to know your know alone and maybe we could brainstorm together. Someone on this forum has told me that they had endo removed off of their sciatic nerve but the specialist I asked about says no they can't do that. I'm in Canada we don't have specialist that treat endo here. Are you in the UK I hear you have specialist there, have you been?

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