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?

Definitely raise a formal complaint. Advocating for more consideration from health care professionals is very hard and you have all my sympathy. The process of raising a complaint, which will mean that you need to put in writing the way you have been belittled, will make you feel stronger - arguing one's position with articulacy and evidence goes a long way.

Contact PALS and complain, I have found them helpful in the past.

I work in the NHS as a clinical professional and I recently had to put in a formal complaint about something similar. My complaint was fully upheld and I have gone on to get full PIP and a blue badge.
Nobody will ever accuse me of making a fuss about nothing again. Complain, complain, complain.

Sounds like the delightful obstetrician who put "Poor maternal effort" as the reason for my son's instrumental birth

First of all op, you poor thing. Goodness you’re going through it. Sympathies from me.

Id ask, pointedly, if they’d put that on a man’s letters? It sounds utterly infuriating!

My mum had multiple investigations for gynae/digestive issues over numerous years. She was also dismissed as having "health anxiety". She phoned me in tears after her last GP appointment where they had prescribed her sertraline (anti anxiety medication) and given her the telephone number for a counselling helpline. Shortly afterwards she took herself to A&E as she was in so much pain, waited 17 hours, and was pretty much instantly diagnosed with advanced ovarian cancer. I am not saying this to cause you more anxiety or suggest your issues are similar, but to make the point that yes, women's health issues clearly are dismissed as anxiety in many cases, and that you should absolutely not feel bad about standing up for yourself x x x

I’m so sorry, this is awful. So many women are treated like this, as though we don’t know our own bodies and can’t be trusted when we say something is wrong.

I recently underwent a private hysterectomy as I too had endured years of issues and was just constantly fobbed off. An MRI scan six years ago showed adenomyosis for which I was offered no treatment. My symptoms got progressively worse which is why I went private, even though it meant raiding our pension pot. I’m so glad I did. During the operation it was discovered I had endometriosis too, that my ovaries were stuck to my bowel and bladder, I had an enlarged uterus and my womb lining was very thick, all of these things individually can cause pain, yet I had been told repeatedly to put up with it. If I hadn’t had the surgery I would almost certainly have ended up with serious bowel and bladder problems.

I really hope that you can access the help you need and that things improve for you, sending you hugs 🤗

My gp put health anxiety on my letter to the rheumatologist.
I had 2 slipped discs.
Dr’s can be arseholes at times.

That is terrible, just absolutely shocking. Women are treated so poorly by the medical profession.

It seems so odd that they would send you to see Dr Fikree, her specialist interest isn't related to endo at all, and if the bowel symptoms aren't resolved, she should not have shrugged you off.

Are you under the care of the endo team at UCLH at the moment? They should have given you a phone number for the specialist nurse. It is worth contacting them to let them know things are getting worse and you need help now.

I goodness, that's awful and similar to my poor mil who had a terrible bowel tumour but had been palmed off by her GP.
Is your mum doing ok?

It's terrible that we have to end up going privately something which the NHS should pick up.

They've just recommended painkillers (naproxen) for my adenomyosis. I don't want to take this as it's known to cause digestive issues and I really can't cope with more. I asked my gynae if I could have a hysterectomy but he went out of his way to put me off. I'm sure it's about cost more than anything because I have no risk factors for the op.

I think it's because they have me down as an IBS patient but I'm certain it's all connected to my gynae problems.
I'm under two nurse specialists, my next appointment is in May.

I can't see any benefit to your consultant writing this. It seems to indicate that your health problems are imaginary, and therefore you don't need any actual treatment. I think you definitely have grounds to bring it up with them and ask them to stop writing it.

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

I have diagnosed bowel endometriosis and that is 100% not the only symptom of it. GP's are not able to diagnose endometriosis, especially considering this GP has not done surgery on you which is the gold standard of diagnosing endo.

They put me off too, didn’t actually explain why but I believe it was a cost issue.

I really hope you can get some help, if it’s possible to ask for a woman gynaecologist I would do that as I have generally found them more helpful. Also, try writing to your MP, they need to know what it’s like for women. Good luck!

That's how it feels to me, as though I'm some kind of neurotic wasting her time.

Please contact the endo nurse and tell them what's going on. They should certainly be able to sort you better pain relief than naproxen (FFS). There are things they can do to help. x.

We only have one female endo gynae at our local hospital sadly and she has a terrible reputation. My son's 21 year old girlfriend has just been diagnosed with endo and has her lap next month. She initially saw this female gynae who had her in tears, completely dismissed her concerns yet according her recent MRI she is full of endo and has some kind of issue on one of her ovaries as well.

It just gets worse, I’m so sorry, being a woman is bloody rubbish isn’t it?

Sadly I don't have an endo nurse. These two nurses are attached to the neuro-gastro department.
I last saw my local endo gynae in May last year (was my first appointment with him actually) and he's just put me on a waiting list for a lap and left it at that. Not heard from him, or the department since.

It really is.

Sorry, I'm confused now - you said you were at a bsge centre? If so, they are supposed to have a specialist endo nurse you can contact.

Also, when I kept going to the doctor I was constantly dismissed as being ‘run down’ even though there was no reason for me being like that (30s, single, child free at the time). I went many times to dr to no avail (even a blood test that showed my ferritin levels as being extremely low did nothing). Just told to take peptol and fybrogel. I took myself off to A&E and it was bowel cancer! Again, not saying to frighten you but to reiterate how patronised women are over their health concerns.

It is a specialist centre, it's on the BSGE website as being so but no, I have never been assigned a specialist nurse. I honestly didn't know it was a thing.