Endo care beyond laparoscopy + artificial hormones

[Roxita]

Hey!

Are there any good endo centres in UK (NHS, or private) where endo is addressed holistically? What I mean by this - where train clinical nutritionist are included in the management plan, as well as endo trained pelvic floor physios.

I'm not looking for some hocus-pocus approach, but also not keen to have an operation + artificial hormones as first line of treatment given the amount of posts I see here from people who are, sadly, having to return to laporoscopies over and over, and having troubles with hormonal treatments.

Thanks

[Moon_maiden]

There are anti inflammatory diets that women try for Endo, plus cutting out things like wheat, gluten and dairy. The is a lady who does some good podcasts on diet type foods, Jessica

They don’t know enough to include dieticians in the Endo plan unfortunately.

Edinburgh are extending the drug trial they’ve had success with, it’s a cancer drug. They’ve know the cells act in a similar way to cancer cells.

Your GP would hopefully be able to refer you to physio. If your GP is in an area of a private hospital that does NHS ask for referral there it’ll likely be quicker and more likely to have a specialist.

Hope you get something sorted 🙂

[Roxita in reply to Moon_maiden]

Many thanks for your reply! 💖

I've already started following the anti-inflammatory diet on my own initiative. And I've actually had amazing results way faster than I imagined would be possible🤩I cannot believe that I've been suffering over 20 years and never had life style changes suggested by many doctors that I've seen. Well.. apart from the "lifestyle change" of suggesting to have a baby when I was 17 and first turned to doctors for help🙄🤦‍♀️

That said, I would like to approach it under a supervision of actually trained medical professionals as I don't want to end up with an eating disorder, or hurting myself by taking supplements that I think I need based on the reading I've done, and podcasts I've listened to. I really want to take eating and other lifestyle changes seriously and have some guidance with it 😊 I've found couple of registered nutritionists who have specific interest in endo. So I might reach out to them directly. Just not sure if my medical insurance will cover any of it if its not a referral by the gynaecologist and/or GP. I'd be highly surprised if I even get a NHS GP appointment if I called up their reception with this ask 😕

[Moon_maiden in reply to Roxita]

That’s great, sounds like you’re doing well 🙂

GP said the same when I was about eighteen. Never went back, until 2019 and got diagnosed at 51. I wouldn’t recommend leaving Endo that long.

You’ll have learnt a lot, don’t knock your knowledge. Why not do a course in nutrition, it might help more generally.

You could try GP but I think you’re right, never know though. My eating went to pot in 2019 and lost 30kg in a short space of time. I take a good multi vitamin and mineral but I’ve not had any good advice on nutrition and only offered the horrible tasting drinks. I’ve had levels checked of vits/mins and they’ve always been ok.

Ask GP to do bloods and check your ranges, it’ll be a good guideline for you. Vit D is often low and really important as it’s more a hormone. B12, magnesium (often low) but get them to do the whole range. GP will likely try to say no, stay firm 🙂

Let us know how it goes with GP

[Jade2006]

hello I wouldn’t recommend just leaving it either I have lost body parts to it so it’s definitely not best to just leave it .

Obviously everyone case is different but I regret not going earlier , I thought the pain was normal x

[Roxita in reply to Jade2006]

Hi Jade!

Thank you for your reply. I don't want to be too personal, but can you please explain a bit more what happened to you by leaving it for too long?

I really don't want to ignore my symptoms and pain, all I want to do is to explore options other than operation + artificial hormones as first line of treatment. And I really want to do it in the safest way possible. But with lack of guidance or referral from doctors it seems like it's mission impossible 😕on the one hand I am reading online that nutrition, stress management, pelvic floor physio could make a huge difference to endo - but on the other hand when I'm asking doctors (NHS and private) about it all they tell me that my options are either an operarion + hormones, or stronger pain killers/opioids. And nothing else. I don't know what else to do other than trial and error based on the knowledge I am able to gather myself online and by reading books if there are no specialists available in the UK 🙁.. or to search for specialists abroad?

Thanks xx