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?

You're absolutely spot on and you should absolutely ask for it not to be included.

Your GP is talking nonsense about the endo as well. The bar is so low - I went in because I was nauseous and heaving all the time and had a (young male) GP say 'maybe it's just because you're 35'. My 10cm ovarian cyst would have gone undiagnosed forever if I hadn't had a miscarriage.

They're absolutely useless as it stands so the last thing you need is for them to have an excuse to undermine you even further. You're doing brilliantly just keeping on despite everything 💐

I would be mad too and very tempted to write to the consultant and ask for the phrase to be removed.
I had a similar thing, I developed symptoms that could be stomach cancer. My dad died from it at the same age so you can imagine how worried I was. I was referred for an endoscopy and all was OK, thankfully, but then the GP wanted to prescribe antidepressants and counselling for my "health anxiety". I refused both and said I thought that in my circumstances, it was a natural emotion to be anxious.

I've had two colonoscopies over recent years so hopefully that's all ok but that's terrible for you but I am not at all surprised especially after my poor mil similar experience to yours.
I hope you are doing well now? x

sorry haven't read the full thread so apologies if repeating but if they are difficult when you write to them, you can formulate it in terms of a data protection complaint about accuracy. If you google data protection and accuracy/accurate you will find lots on this.

https://ico.org.uk/for-the-public/your-right-to-get-your-data-corrected/

Health anxiety is the new thing at my GPs. It used to be stress. My 14 year old son had to go as he had started getting regular migraines- same as both his father and I. Because he used the word aura the GP said he had health anxiety and had been googling. Arsehole.

When I was bleeding at 17 weeks pregnant and sent for a scan the doctor put V++++ anxious at the top of my notes. I was perfectly calm but was understandably a bit worried as they had asked me to come in. It's just a way to dismiss women as hysterical. And that was a female doctor as well. You need to complain until they remove it OP. In writing. I'd say that you feel that it will affect future treatment and anyway its an opinion not a diagnosis and not one that you share.

Were you definitely sent to the endo clinic and not to the general gynae clinic? The endo clinics are supposed to have a specialist nurse (or at least they were last time I was there).

Isn't it just the case that that is her diagnosis? And yes, I think being concerned all the time about pain etc could be described as health anxiety.

It sucks for you as you then have the concern that you won't be taken seriously. My sister does have health anxiety and I have never found that to be the case. Indeed, I think she has always been given greater access to services due to her concerns rather than the alternative.

Is it also worth considering if you do have health anxiety? Yes, I completely agree that it is normal to be worried over your symptoms, and that they don't appear to be improving/being successfully treated, but it may be that your degree of anxiety is excessive. I would also say that there is a difference between being impacted by the symptoms and refusing to believe that the symptoms are not something more.

I'm not unsympathetic - I live with a chronic health condition - but you can't diagnose yourself as not having health anxiety - you are not your own doctor.

I would find 'health anxiety' really annoying and minimising the issues too. It is pretty much tantamount to saying 'hypochondriac' isn't it?

25yrs and counting 🙏🏼

I agree with the poster you quoted as my first thought when reading your OP is what is the basis of this comment, what is the relevance to their advice and how do they want you to manage it? Without that, it really does just come across as a coded comment for “difficult” at best, “imagining it” at worst. I would expect a recommendation for mental health services at least.

In fact, I’d wager this commentary is why you have been pushed from pillar to post across NHS and why you’re finding other medics aren’t taking you seriously. Your GP would pull up your letters from the specialist, see health anxiety, and understand the situation as exaggerated but under control.

I think the whole thing has already crossed over into formal complaint territory and you should take it forward.

I had terrible hyperemesis with my first child and was hospitalised three times. I read the notes at the bottom of my bed and a young male doctor had written "possible bulimic" as if I had been making myself throw up and that all day severe morning sickness wasn't a real thing.

My daughter's lactose intolerance was labelled 'health anxiety'. She has atypical symptoms so we had to figure it out by ourselves. I still can't get it removed from her notes and it definitely makes doctors take her less seriously.

You should absolutely complain.

I think also these things on your notes can just be accepted by other medical staff looking at them and then somehow become 'the truth' if you're not very on the ball. DH had a chronic medical condition written incorrectly on his notes at one point and it caused no end of problems - one doctor told him that 'it must be true because 'it says so in your notes'. Another wrote it incorrectly in a discharge letter, yet another told him 'oh it wouldn't be what you say it is at your age' - DH pointed out that it wasn't a recent diagnosis and he was a lot younger when he contracted it. Etc etc. The incorrect notes were potentially life-threatening if he was being treated (for anything) and unable to explain.

Sorry that got a bit long-winded @ASockofFleagulls but in short you are right to be annoyed and should request that it is removed.

Definitely the endo clinic. I was under a regular gynae at the same hospital, for 9 years, had several hysteroscopies and a uterine ablation performed by him. After the MRI had detected the endo he said it was beyond his expertise and referred me over. I have never been offered an endo nurse, neither has my sister who was diagnosed at the same hospital and (I have just asked her as she is at mine currently), my son's gf who is due a lap within the next month. Maybe it's something they don't offer at this hospital (it's not the best hospital tbh).

Have a look at NICE guidelines for adenomyosis. My gynae said the only total cure is hysterectomy and I had one 9 months after seeing her.

I had to wait for apt and then hysteroscopy and 6 months after that came back clear I was in surgery. In fact it would have been sooner but my mum died and I delayed the surgery until after her funeral - for obvious reasons! I was only 41 so quite young for surgery really.

I absolutely think I'd write in (I'd go via pals) and bullet point what you have here and that you find it insulting that real diagnosed conditions are being treated dad health anxiety and it shouldn't be put on you because they can't find the reasons why.

Fwiw I do think when they can't pinpoint gastro issues they blame anxiety.

I have it on my notes - despite disputing it numerous times - that I have had a period of depression. I have not. I was told to try fluoxetine and then amatriptyline for what they diagnosed as IBS.

I had a negative coeliacs screening at 17yo which they were surprised about.

But cutting wheat out of my diet solved all my gastro issues. It had never been suggested I try it and when I said I was trying wheat free the GP was actually against it saying it could mean eating wheat again causes my stomach more issues.

Not really a problem - wheat free works so why would I introduce it again? I no longer suffer stomach issues.

She is a gastroenterologist, how can she diagnose me with such a thing when we haven't even discussed my mental health?

Hypochondria/health anxiety or illness phobia (whatever you want to call it) is something healthy people experience when they fear they have a particular disease but showing little to no symptoms of said disease. From my teens to now I have experienced endless issues with my periods to the point I would flood at each period passing clots the size of the palm of my hand, ovulation pain so uncomfortable it would be uncomfortable to sit, would cause me to bleed and would last a week. Becoming so low in ferritin levels that simply climbing my stairs would result in black vision and resulted in iron infusions. It took me 6 years to conceive my first child to the point that my planned 'having kids in my late 20's' meant I had them in my mid 30's. I was always told these are things some women go through. Had I known at the time it was actually endometriosis I could have received treatment much sooner and have gone into perimenopause knowing what I was dealing with.

And that's on top of the digestive issue I have struggled with since my mid 20's. Very unpredictable bowels, pain, bloating, nausea, indigestion, often needing to rush to the loo after eating which means I haven't eaten in a restaurant for years as I have had a few mishaps in the past. Having to endure 2 uncomfortable colonoscopies (I won't even discuss the horrors of the prep beforehand), a gastroscope down my throat, swallowing a pill camera endoscopy the size of a small tordedo etc. Very few people would put themselves through that for the sake of it.

Yes, the above does make me anxious I won't lie about that but you would have to be a fairly stoic person to put up with this for years on end and for it not to dent your mental health a tad.

Absolutely. It’s a signal between doctors meaning “this one is making a fuss about nothing, <eyeroll>, don’t bother too much with her, it’s just female hysteria”.

This is the annoying thing. When my regular gynae transferred me over to the endo team I was told it would be a 44 week wait to see someone so I decided to see an endo gynae privately (he is one of the main endo gynaes at the NHS hospital but has a v.long wait there due to his popularity). He was so helpful and said the same that adenomyosis is only 'cured' by a hysterectomy and recommended that due to this, my endo and my failed uterine ablation he would most definitely recommend one but it's £7500 there and I simply can not afford it.

I did eventually get to see my endo gynae and he went out of his way to put me off a hysterectomy which is really frustrating.

You seem to assume that only healthy people have health anxiety: that’s wrong. She is flagging a co-morbidity or possible one. I think that’s ok. Also are you sure this isn’t your gp’s diagnosis that she is flagging? If you do have it it doesn’t take away from your physical illness. Frankly what you say here is more telling about your views on mental illness than those of the consultant.

Two further thoughts:

1. if the consultant is right, anxiety can have physical systems which may exacerbate your other conditions or simply make you feel worse because it’s another set of physical symptoms.
2. even if it doesn’t have physical symptoms for you (again if the consultant is right) treating any form of anxiety might make you feel better and thus improve your lot, which sounds tough.

No one has diagnosed me with health anxiety because I do not suffer from health anxiety.

Health anxiety is a completely different mental health condition to generalised anxiety or anxiety induced by health issues btw.

Sadly not, she passed away within a few months of being diagnosed. Which makes it all the worse that doctors were actively telling her at that point it was psychological. It's gaslighting of the highest order and it seems women experience it far too frequently when dealing with the medical profession

Springisintheairohyeah Oh I am so sorry.

I am sorry you are having to deal with all those health issues but I am not sure the fact the Consultant writes 'health anxiety' means anything more than the fact you are anxious about your health. You are reading it as though you think she thinks you are a raving nervous wreck hypochondriac.

Go look up the Father of Gynecology - but make sure you do it on an empty stomach. Hatred of women was baked into the specialty from the start.