I want to ask my consultant to stop writing this on all my letters, can I do this?

[ASockofFleagulls]

A quick background to my heath issues. I have struggled with awful gynae issues and digestive problems for over 20 years. During that time I have had endless gynae and gastro appointments and tests and have been told for years that my gynae issues were just one of those things some women go through and that my gut issues are simply IBS and so I have just had to get on with it.

Despite spending a small fortune trying to find ways to feel better, the older I became the worse it got. In 2023 I asked my gynae if I could have a MRI scan because I had a uterine ablation a year before which had failed leaving me in awful pain (was told just to take pain killers). Turns out that I actually have deep endometriosis and diffuse adenomyosis and I am now on a long wait for a laparoscopy. Discovered all of this at the age of 50.

My gastro says it is possible my gut issues could be related to my gynae problems but then of course I could still simply have IBS alongside this which is fair enough. My GP says I can't possibily have bowel endo because I would be passing blood from my rectal area (being on several support groups I am pretty certain that isn't the only bowel endo symptom).

However, since being in perimenopause my gut issues are now a dreadful daily occurrence, my gastro can't offer up any more advice than I am already following (which is everything advised) as I have had all the tests. This is fine, I accept that and I now have a yearly telephone follow up appointment with her.

This thing is that with every follow up letter that comes from her she will state 'HEALTH ANXIETY' in bold letters which really pisses me off. I have anxiety yes but not health anxiety. I am anxious because I am living with daily pain, bloating, diarrhoea, constipation, nausea and discomfort all the time, find me anyone who can put up with this every single day and not feel a little anxious about the whole thing. I have never once told her that I am suffering from health anxiety as I truly don't believe that I am, it's not as though I am going from one health worry to another, I am simply trying my best to live with the issues that I currently and genuinely suffer from which can be quite debilitating at times.

I feel with this stated on every letter neither she or any GP is ever going to take me seriously, now or in the future and surely it's just her personal opinion which she should keep to herself?

I want to ring her secretary and ask that from now on she does not add this on to any of my letters. I feel it serves no purpose other than to make it look as though I am exaggerating my problems.

WWYD?

It’s great that you have the expertise to confidentially give yourself a diagnosis. I think it’s still frowned on ethically though 🙄

Given it’s in your notes it seems someone has diagnosed that. Maybe there not the right person to do it - I don’t know - but it seems like nor do you. You may well be right, but isn’t the starting point to ask - where does this come from? Who made that diagnosis? On what basis? Why haven’t I formally been given that diagnosis? Why isn’t it being treated? All those questions would give you a rational basis from which to push back - which simply demanding that your non- expert opinion replaces that of your consultant will not.

Honestly, you do sound very difficult to deal with. Maybe cut the attitude and they will be more willing to listen to you. I don’t doubt or deny that women’s health issues are not addressed appropriately on a population level. But that can be true as well as you being difficult and refusing to recognise a co-morbidity because you don’t like the idea of being mentally unwell. It would be worth finding out if what is happening here is one, the other, or both rather than just kicking off.

Oh fuck off.

You haven’t had to deal with this shit. Women “have an attitude” (again never seems to be said about men) because we get treated like shit, not taken seriously and get physics health conditions brushed off as mental health conditions that we don’t have.

Difficult to deal with = stands up for yourself.

Woman after woman has detailed how their physical symptoms were blamed on non existent mental heath issues and you still came and wrote this. Then insulted the OP to boot.

No wonder women are called rude, uppity, or as “having an attitude” as you call it. We are sick to the fucking back teeth of it.

There’s another thread on here at the moment from a women who’s daughter was permanently damaged by a doctor at a hospital. This is not disputed and she was financially compensated. They then asked to be transferred so this doctor did not treat her daughter.

The referal letter said it was a “personality clash” - reputarional atse covering in other words. Effectively blaming the patient - again- for the reason for the transfer because the hospital didn’t want to mention the real reason.

This shit happens. All the time. And we are sick of it. Fully expect to be told I also “have an attitude”. Yes yes I do. It’s called the attitude of refusing to be treated like shit anymore.

I haven’t rtft but wanted to sympathise with you OP. I have very similar issues to you, stage 3 endo, adenomyosis and IBS, or at least what they think is IBS… It has been horrible over the years, and has caused much pain and upset.
I would definitely complain about this on your letters! As you say, it is opinion and not fact, and may lead to others unfair assessment of you. My GP years ago had a similar opinion of me, and although I didn’t see my notes, I noticed that all the other doctors I saw were quite off with me, and were not helpful at all. I was convinced she was warning them in some way, so I moved GP’s to someone who is lovely, and very professional. It has made a huge difference!
As an aside, last year my IBS was absolutely awful, and it would get so bad that I would regularly have to cancel plans as I needed to be near a toilet. I just happened to try intermittent fasting, and it has helped so much. I was doing 16-18 hours fasting, and then being super healthy in what I ate during the 6-8 hour eating window. My gut issues have never been better - I stopped the IF just before Christmas, but am still feeling the positive effects. It was like a reset.
I really hope things improve for you soon, and with menopause they should do 🤞🏻 I had my last AF nearly 9 months ago, and not having that excruciating pain each month is amazing. Fingers crossed it’s the same for you too!!

You are hysterical - in both senses of the word 🤣.

I'm a woman - I absolutely have had to deal with it my whole life. I have PMDD - a condition it took me nearly 20 years to get diagnosed. Don't talk to me about St John's Wort and evening primrose oil - these are not treatments for my condition but what I was told by doctors for years. I have been dismissed for years. I also have GAD (which yes, before anyone tells me is different to "health anxiety") and that is a medical condition too. It is possible to have physical and mental health conditions at the same time.

As I said, it can be true both that women get treated poorly in healthcare settings (which they do) and that the OP has health anxiety. I don't know if she does or not, but she is not able to diagnose herself as not having it - which is what she is doing. This is a fundamental misconception - that mental illness is simply about how someone feels and that they are best placed to say whether or not they are suffering a particular condition. It isn't and they aren't.

It is possible that the OP has health anxiety. If she looks into this - rather than kicking off - it can either be dismissed on proper grounds (which frankly will do the OP, and the consultant if she is wrong to include it, much more good than getting self-righteous and demanding that the doctor change their view based on her non-professional view) or she can be treated for it and maybe feel a bit better, even if it does nothing for her physical symptoms. Either way, a systematic approach is likely to yield better results. If you don't want people to call you hysterical and dismiss you, don't give them any excuse to do that (something I've learnt in my many, many years of being a woman and being one in healthcare settings).

But given the tone of your response, you're not really amenable to systematic approaches are you? And yes, it can both be true that women are rational beings (which they are) and that you are a rude and hysterical with only a rudimentary ability to comprehend the written word (and I assume the world around you).

Ah yes my “tone”. Often used when searching for a way to put me “in the wrong” so to speak.

No I am not hysterical in any sense of the word. I am rightfully angry - if you bother to read further back I detailed my own distressing experience with being medically gaslight.

Until this I was very amenable. Strangely enough now I am less so.

But yes you go ahead and use another word used to dismiss women. It supports my statement rather than yours.

There is nothing self righteous about what OP is doing. Either she has health anxiety and she was diagnosed and no one bothered to mention it (which is disgraceful) or she doesn’t and it is being used to dismiss and belittle (as many others here have detailed here) and that is also disgraceful.

Thank you. That's interesting. I have been a patient with them for 4 years and have to say I feel very much the same. I actually requested to see a different neuro-gastro because the first one I found to be very dismissive of my issues, she would talk over me during every telephone consultation and told me that I just need to learn to live with my issues (up to then I had been struggling for 20+ years so God knows what she thinks I have been trying to do all these years).
I have to say that Dr Fikree is lovely though.

I don't live in London and referred to the UCLH by a different gasroenterologist at my local hospital so not sure if I would be able to get an appointment at the Royal?

yanbu, last year I was labelled as health anxious, which made getting the actual health care I needed a long ridiculous road, I ended up going to a private dr to get a second opinion about the problem, which was real and not anxiety, and the letter he wrote was so satisfying, that I wasn’t anxious, I was just ill and not being taken seriously.

Of course she is not the right person to diagnose me, she is a gastroenterologist ffs.

You are obviously just posting to wind me up, I shouldn't even be replying to you, you absolute knob. You should be quite ashamed of yourself. Attitudes like yours are the reason so many women struggle with health issues and are gas lit time and time again.

If I was difficult to deal with I would have most probably had all of my health issues dealt with years ago. The fact that I am an easy going passive patient means I have spent decades in pain and struggle with various gut and gynae issues with minimal help.

God, you must be such a loser in RL.

Have you thought about hysterectomy? I did and never looked back. The gyne issues were gone. Still occasionally flares ups of IBS but so much better.

It sounds like you definitely need to ask for a referral to another hospital and consultant. Given the amount the NHS is spending on investigations, treatment etc, I would have thought a hysterectomy would actually be an economical option.

I'm sorry you have suffered so much with this too, it's really no fun is it?

I am 52 in a few weeks and hope and pray menopause will bring some relief.

I would love a hysterectomy. I am currently on a long waiting list for a laparoscopy but when I asked my gynae about a hysterectomy he went out of his way to put me of citing all the things which could go wrong. I had seen a private gynae a few months previous who was more than happy to perform one but sadly I can not afford it privately. I can help but wonder if the NHS one was putting me off due to the costs more than anything?

You'd think so.

Sadly a hysterectomy for longstanding endometriosis isn’t always straightforward or even possible if there is a lot of scarring and adhesions to the bowel.

I also have Endo and have a similar situation to you. Years of not being heard have made me have no trust in myself. I was told my secondary infertility was caused by poor mental health and not trying hard enough. I was also told I was imagining the symptoms of pregnancy loss and had to pay for a scan to confirm what I already knew. I always get “anxious” written on my notes. Fuck them.
Just to give you a glimmer of hope my step mum went for a Lap at a similar age they woke her up halfway through and consented for a TAH and bilateral BSO. She was a new woman afterwards!

I think we may have seen the same person. I was told all my issues were psychosomatic 🥲 Refused to do further tests, despite me requesting them with a clear rationale.

Your GP should give you the option to choose your care, although I think the Royal only offers the umbrella Gastro services, but they are still miles better than UCLH. Definitely request they remove your "health anxiety" label first- you wouldn't want to be tarred with that brush if you are referred elsewhere.

Mr Christopher Chan in particular (at the Royal)- best consultant/ surgeon I've ever encountered.

I absolutely get how miserable you must be feeling.

Not rtft but I’d definitely complain.
I have lived with similar symptoms to you but my GP is a legend and I was diagnosed with endometriosis within months as he whipped me straight off to a specialist. I have stage 4 endometriosis including on my bowel, diagnosed 23 years ago, have never once bled rectally.

Endometriosis care before you get in with the experts is a national crime against women. Fuck them, health anxiety: complain. I cannot believe the pain I witness in my loved one and the myriad of symptoms. Fuck stupid bastard silo thinking god complex medics.

This. I've had a hysterectomy. It definitely helped in that the pain isn't as bad now, but I've got deep infiltrating endo in my bowel which is now very risky to remove because I've got so much scar tissue from the hysterectomy. It's not a magic wand.

@ASockofFleagulls I just wanted to add, as you've said one consultant said yes to a hyat and another was reluctant, that it's worth being aware that a hysterectomy with endometriosis can often be quite difficult to perform, because they may have to cut the uterus away from other organs and not all gynaes have the required level of skill. I came up against this problem at one stage, the gynae who diagnosed me told me I needed a hysterectomy but then wouldn't set a date. He kept making excuses. Eventually I asked to be referred on elsewhere and he was very keen to oblige. I wish he'd just said he couldn't do it.

Reluctance can sometimes mean that they can't do it but don't want to admit it. Which is not the same as it can't be done.

I would do it in writing and send it by recorded delivery so there’s a paper trail.

The private endo gyane I saw suggested a hysterectomy for the adenomyosis and did say it may not ease the endo. He said he could excise as much of the endo at the time and then put me on HRT both progesterone and oestrogen, in the hope it may keep it at bay.

I just live in hope post-menopause may bring me some relief as peri has been dreadful.

Thank you. The most frustrating thing is going round in circles for years and getting nowhere fast with it all.

Wow, what a fantastic GP. I wish they were all like this.

Thanks, I will keep that in mind.

I really need to request an appointment to go and see him again so I can discuss this and ask why he was against a hysterectomy, it may be for this very reason. The private gynae (who is also my gynae's collegue at the same NHS hospital) was more than happy to offer up a hysterectomy, mainly due to the adenomyosis, which the NHS gynae doesn't seem to be too fussed about but from everything that I read adenomyosis can also contribute to pain in this area so I am not sure what happens with this condition, going into menopause?