NHS can’t help. Try mushrooms

[LRP-Endo]

hi all,

This is my first post. I was surgically diagnosed with endo in 2020 at 39, after 3 years of difficulties to conceive and 13 years of approaching various GPs with symptoms to be told it was “normal”. I have many issues with food and my bowel over the last 6 years (IBS, SIBI etc) a recent colonoscopy came back without any issues. When I asked about deep endo they were ill informed and defensive; my consultant advised it was not possible to scan for deep endo and therefore likely a food allergy. In response, on return to my GP they advised that they didn’t know which dept could help “gyny, general surgery, I mean who knows” and instead recommended mushroom supplements. Is this really where we are at with a medically informed and patient centred approach to endo? I genuinely hope not because I am done! My fertility has been compromised (Fallopian tubes sutured by lesions, my diet habitually under scrutiny and now I am expected to accept that mushrooms are the answer! Is this an entirely ill-informed position from a qualified doctor or do they know something yet to be punished in medical journals or online??

[Tangoandmax]

Hi, this is certainly the first I’ve heard about mushrooms. How bizarre. Sounds like a next level fob off to me, but I could be wrong. Sorry to hear your fertility has been compromised, this disease is absolutely awful.

Is your consult a specialist? At a BSGE centre? If not, you should request a referral. Especially if you already have a surgery confirmed diagnosis. If already with one, request a different consultant as MRI most definitely can pick up DIE. I was provisionally diagnosed in Feb based on MRI results, which has since been confirmed during surgery. Yes, it doesn’t always show but when carried out/reviewed by specialist you stand the best chance at location.

In my experience qualified doctor means absolutely nothing when it comes to Endometriosis, majority of them know very little about it - even the Gynaecologists. It’s appalling. I was fobbed off with IBS for years, I don’t have IBS. Endo was left to run riot.

Don’t accept the shitty attitude from the consultant. It’s not good enough a) telling you a lie and b) saying it’s likely something else when they have absolute no proof of that. Absolutely ridiculous, I cannot believe we’re no further forward with the attitude of these doctors and getting the correct investigation/treatment.

[Joonaspryte]

unfortunately I’m not surprised, it’s a very very sad reality.

I’ve also found this, it happened to me on my first visit.

and I’m not a feminist but truly believe that if it was a male condition, a lot more research would have been done and treatments would be much more further along.

However, it’s not, so I’ve been trying to educate myself and am writing all I’ve learnt down., together with references to where I learnt them.

Ken sinervo has amazingly informative videos on YouTube.

I’ve used this knowledge in the consultants office, and it does seem to have an effect .

I also used my BSc (hons) psychology title after my name in an email I sent to my gynaecologist. I don’t usually use it.

As a result I have now been referred for a MRI.

What I’m saying is, if you feel able , learn all you can, so you feel confident enough to challenge them, when they seem to be gaslighting you.