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Endometriosis UK
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How do we feel about NHS treatment?

I know there was a thread about this recently but I went to see the practice nurse at my GP's yesterday (she has been overseeing my care for the past couple of years and is fantastic) and she said she was appalled by some of the care I've received, and that I must just think the NHS is a disaster that should be scrapped.

I was really shocked to hear this from an NHS nurse, TBH. I have had some appalling care, though I have also met some amazing people - my nurse, the specialist surgeon at my BSGE centre. But we endlessly get the message that the NHS is amazing and must be protected at all costs and my experience has been that it is 20% amazing and 80% lazy incompetence. Not just the GP who misdiagnosed me, insisting that I didn't have the symptoms of endo and it was IBS, to then telling us over the phone on a friday afternoon that it was probably cancer. The junior doctor in A&E who gave me 2 paracetamol when I went in desperate for pain relief and said that he didn't really know anything about endo or any of the drugs I was on. The A&E staff who missed that I was bleeding internally after my first surgery, the anaethetist and his team who forgot to fit my PCA after my hyst and bowel excision and sent me back to the ward with no prescribed pain relief (it took them over 2 hours to get a doctor to the ward after I first started asking for pain relief, by which time I was hysterical). The night duty nurse who took an hour to bring me oramorph after I asked for it. The gynae team who forgot to put in a catheter after they packed my vagina when I was readmitted with a massive bleed, the night duty nurse who told me it was just a UTI when I spent the night in agony because I couldn't pee. They drained nearly a litre of urine from my bladder the next morning when the consultant came round and realised that they'd forgotten the catheter and I then had to spend a second night in hospital because they'd given me a UTI as a result.

No point to this really, but in hindsight I am really shocked and actually quite frightened by how bad the treatment was. I don't know how we go about getting better care, but surely it should be better than this.

7 Replies

Hi Hun, yes it should be better than it is. But like with everything there is good and bad. But failing to treat you when you're bleeding internally you would have every right to put in a complaint.

It's supposed to be a caring profession but from my experience , especially GP's they lack any kind of caring or empathy. Simply put they just don't care, especially once they hear the word endometriosis.

Hope you're doing ok.


Goodness you really have had a terrible time of it.

But I couldn't agree more, I think I've been treated terribly throughout my journey too.

When I was 11 and my periods started, I went to the doctors straight away as I had crippling pain and my bleeding was very heavy and I was told it was all natural and just to deal with it.

When I was 15, I started in the pill microgynon and things got better! My pain decreased and my bleeding was much lighter. All was well.

When I turned 18, I got the implant in my arm and 6 months after it being inserted everything started to go wrong. I was constantly nauseous, fatigued and in an unreal amount of pain,

I was bounced from doctor to doctor with every diagnosis but endo being investigated. It was gallstones and then kidney stones and then appendicitis and then an intestine infection... the list goes on.

I have been told, "people just get pain sometimes and we don't know why" - well I'm sorry but I refuse to believe that in this day in age there is pain without a cause.

I've been accused of being addicted to painkillers as even the strongest painkillers don't get me relief.

I have sat in tears to so many doctors and still been turned away.

I had a diagnostic laparoscopy on 30th June under a general gynaecologist and nothing was found. The surgeon himself told me I should have seen an endometriosis specialist first as he can't spot all the signs.

I literally had the surgery for no reason.

I then had to go back to the GP and fight for a referral to a BSGE endo centre (which my GP didn't even know exist... he thought all gynaecologists were endo specialists) and I got the referral!!

I don't know how long I'll be waiting to see them or how long I'll have to wait further for them to do another laparoscopy.

As if waiting 7 years with every endo symptom in the book wasn't bad enough.


I was diagnosed at 38. I had suffered with painful periods from the age of 13, first went to see a GP about it at 15. 23 years wait for diagnosis.

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That's totally unacceptable. I thought I had it bad at 7 years so far and I'm still really struggling to get one! Xx


It does sound like you've had a bad time. I've also had very mixed experiences.

I'm not sure this is all about the NHS. That's just the particular health system we have. Medical knowledge and practice in relation to endo is simply poor. There is very little research, not enough training. Personally I think if endo affected men too, we might be in a different situation.

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This isn't just endo care though. This is forgetting to give a patient pain relief after major surgery. How the hell do you manage that? I agree that it's not necessarily just the NHS as I had my first surgery at a private hospital and they weren't any better. It's a failing of the medical profession as a whole, IMO.


Agree with you. It is difficult to identify competent GPs. I have to go to private GP so someone is listening to me properly. I think it is important to do lots of research on your condition and the consultants before hand. Generally competent people works with other competent people. Once you found the first good doctor then he/she can point you on the right way. I always check out the doctor's qualifications beforehand. Unfortunately we have to micro manage everything in life now so things won't go wrong.

Glad you are on the road to recovery now.


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