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?

I've been told I have health anxiety.

One, because my c section scar was bleeding! I think it was only an ingrown hair, but I felt a sharp pain when bumping DS's pram up a kerb and when I got home saw the blood. Excuse me for being worried about that. DS was a few months old at the time, it wasn't like it had been a few days! Then I got sent round the houses by 111 and my GP and no one ever figured out what had happened.

Two, because DS has had a few problems. We've seen physios, a dietician and he's had an MRI and a load of blood tests, which a hospital pediatrician referred him for. Nothing to do with me, you can't just demand those things!

Fucking hate that term. It's yet another thing to bash women over the head with.

Private consultants can refer their private patients for nhs operations. Is there a reason your consultant didn't do that?

I'd be fucking livid op. Please raise a formal complaint.

That's not what health anxiety means in this context.

Complain!
The pain you feel is real and do not ever let anybody label it as health anxiety! Boils my piss (and I never say that!) My lady doctor who is an expert in women's health particularly the menopause labelled my pain as 'aches and pains because of my age' turned out to be rheumatoid arthritis!

No idea.

I disagree.
Writing " this ladies issues are causing some anxiety ' is read totally different to 'has health anxiety".
It will impact her care and I would absolutely insist it's removed or reworded.

Some of these people are absolute cunts.
I would also believe a significant proportion of these male consultants are in fact personality disordered cunts at that; seriously.

I'd formally complain and explain why as you have done here. Going to the consultant direct won't help as they are not going to be answerable to you really. You will have to try find a way to compel it.

I find PALS ineffectual and useless but I'd go to them in writing as it is following procedure. I'd copy in your surgery in writing. You could copy in the secretary to Dr Dick, but I don't know if that's wise.

No emotions whatsoever, no sorry, didn't mean to be difficult. Facts clear and precise and polite.

I would look at all routes to complain beyond PALS who might do nothing also. It all must be in writing, it must be fair, try not criticise the consultant as his ego won't cope. He'll probably gaslight his wife in anger when he gets home you see 😆. I'm joking, well kind of, I think. Scary isn't it all this.

Be grateful you haven't had that hideous FND bullshit slapped on your records like some poor folk. Good luck.

I suggest you send an email to the secretary who can direct it to your consultant and when he dictates his letters he can refrain from putting that terminology in the clinic letters. The secretary only types what the consultant has dictated and she/he can't defer from that. I work in the NHS so I am aware of those things. You don't have to complain just ask for her email address and she can just send it him/her.
They weren't be aware you don't like it so just let them know.

Nothing to add re the horrendously judgemental consultant that hasn’t already been said, but wanted to say that I had stage 4 endo for 26 years, including on my bowel. Had to have a bowel resection as a result. No rectal bleeding at all.

Huge sympathies. As PP said, this would never be written on a man’s medical record. Endo destroyed my 20s and 30s - it’s a living hell.

Honestly so sick of reading about the crap experiences women have of being treated poorly by healthcare professionals and I wish the government would bloody step up and listen!

We go to the docs to be told 'it's normal to experience pain' blah blah IT IS NOT Normal!!

If any female doctors (or any doctors for that matter) I reading this please be mindful of not minimising women's health problems. There's plenty of evidence to show it happens and you are the ones who can actually make a change and do something about it in your own practice.
OP I'm so sorry you've been treated that way, absolutely go via Pals to ask why a non-psychiatric specialist is referring to a condition you have not been diagnosed with, on their. Communications with you.

My husband wrote to PALS when a letter from the doctor was so badly worded, it sounded like he was a recovering alcoholic. He had told the doctor that he had gone from being an infrequent drinker (1or 2 beers every few months) to teetotal for the previous year. There were other incorrect statements and grammatical errors in the letter and the doctor got in touch with my husband, apologised and sent a reworded letter back which we were satisfied with.

Oh this is so infuriating! Endometriosis is so often dismissed and not taken seriously. I’m sorry that this has been your experience. There is a facebook page called ‘Endometriosis Awareness North’ that I would recommend you follow if you’re not already.

This. That is fucking appalling and I would be fuming given what you are going through. I would put in a formal complaint and not only ask that all future letters do not contain this inaccurate and undermining language, but that all previous letters are amended and reissued and any reference to "health anxiety" on their records or the GP records is deleted.

Health anxiety is the new term for hypochondria. It is not the same thing as anxiety caused by having a chronic physical health condition.

That would hugely piss me off!

Medics just about give patients the time of day as it is without something like that preceding each appointment.

As someone who was diagnosed with a later stage cancer simply because 'Nurse knew best' I'd say complain away.

My horrendous, daily pain and gut problems were dismissed as "just IBS" for over 20 years, despite me regularly requesting various GPs even consider endo. It was finally discovered when they went in to try and remove uterus, ovaries etc. Everything was stuck together in a huge web of adhesions, so they couldn't even reach half of my uterus. One ovary was adhered to the abdomen wall, and the other enmeshed within the large intestine wall. This narrowing of the bowel will have be the cause of numerous symptoms. It also explained why the several ovarian cysts I'd had over the years, caused acute pain during bowel movements. They'd also dismissed that as my imagination when I'd described it, even though I'd been seen doubled over when passing gas at the time.

They always know better until proven wrong.

Funnily enough I was at a funeral today and I bumped into my old now retired Doctor he actually apologised to me for not listening to my concerns about ongoing digestive issues for years. When he retired 2 years ago the young female GP sent me for CT scan rather than describing me as having a IBS and healthy anxiety, menopausal etc etc it turns out I had kidney cancer 🫤 We do have to be careful as women not to be fobbed off.

Such a shame the onus is on US.

Medical schools ought to be doing their bit.

Read this, I feel your pain. Change doctor!! www.lisapotterdixon.com/blog/endometriosis-my-journey

I really feel for you. I'm still so upset to have only discovered I have it at the age of 50. My 20's and 30's could have been so different had I known. Even during my 6 years trying and failing to fall pregnant I blamed myself as the gynae kept telling me I hadn't fallen pregnant because I was probably getting too anxious about it

I've seen up-post that you are under the care of the UCLH team. I was previously under the care of one of them mentioned by another poster. I won't name the consultant specifically, but I experienced absolute minimising of my symptoms and complaints. I do not recommend the neuro-gastro team at UCLH.

I had a significantly better experience with the team at the Royal. I would strongly suggest changing hospital if possible, it resolved all my issues. I also went privately where possible to expedite the issues more quickly.

Good luck.

I think it depends on the individual consultant and their personality whether they would take this on board and remove it from letters going forward. The consultant I work with would absolutely, but I can’t see him dictating something like that to begin with.

I'm so sorry OP & echo much that's already been said here! Absolutely complain & ask for it to be removed. Women are fobbed off too much of the time & the gas-lighting is so insidious & damaging it can make you start to doubt your own reality!
Aged 19 I had the most awful gastrointestinal symptoms causing pain so bad I would throw up, be unable to eat or drink anything for days at a time as well as constipation & violent diarrhea. I had a few tests results that were odd & others that were inconclusive so was sent to a virologist/microbiologist. After meeting me once, he dismissed the symptoms I was experiencing as anxiety and false positives, discharging me back to GP with a covering letter stating I was clearly overly emotional, histrionic, essentially making it all up.

This led to 9 years of GP practice refusing further referrals or investigations even when my Mum came with me to explain family history (that turned out to be very relevant!) My entire life was 10 day episodes to 10 day episodes with barely a reprieve of a month in between & a diet so restricted that I existed on a bit of chicken & white rice.
The only reason I eventually got diagnosed was seeing a new GP in the practice who took one look at me during a flare up (I had gone in to get a sick note for work) & having to explain to him that the symptoms were "all in my head;" he saw I'd had a miscarriage some weeks previously & couldn't believe I was even TTC. He told me he wanted to send me for urgent tests. I broke down saying there was no point. He insisted & I was sent to a gastro Dr that same day with further request for ultra sound as well. Within 48 hours I was diagnosed with gall stones (loads!) chronic pancreatitis & a massive hernia and put on the list for urgent surgery. I cried so hard when getting the diagnoses that the poor (lovely!) consultant thought I was distraught & tried his best to reassure me & outline treatment pathway. I had to tell him it was just tears of relief that I wasn't making it up/hypochondriac/insane & that I was was just looking forward to not having to experience such misery for the rest of my life!!
As it happened I had absolutely text book symptoms with a strong family history through female line (Great Grandmother, Grandmother, Great Aunt, Mother) but because I wasn't 'fat, fair and over 40' I had been completely dismissed 😖

This is so frustrating and infuriating. We keep seeing the adverts on the television about how we as patients should not dismiss health niggles in case they are something more serious and yet a) how can anyone even see their GP and b) you get an appointment and your issues are dismissed as ‘anxiety’.

I haven't read the whole thread, but have read all your posts OP. My God, I hate the utter misogyny that is rampant throughout the NHS. The gaslighting is run of the mill, they don't seen know they are doing it half the time.

I only go to the GP if I really really have to - which was 3 years ago when I had excruciating ovary pain. I explained that I had endometriosis but this was different. It was hell on earth having it investigated and I ended up having to do a formal complaint about an horrific experience with the gynaecologist. I was, typically, gas lit in the response. However, my main reason for posting is that I got absolutely nowhere with the awful gynaecologist, did the formal complaint, and had to wait to be re-assigned an alternative gynaecologist. In the meantime, I ended up in sheer desperation paying for a private MRI, which confirmed, to my relief, that my ovaries were OK, but I was riddled with adenomyosis.

I will say, having reached 54, my symptoms have got soooo much better and while I still have the occasional spotting, having no periods is such a joy and no pain, no flooding, no clots. It is amazing! I couldn't care less about any peri-menopause symptoms - I have a few, but in all seriousness nothing like the brutal years of endometriosis and adenomyosis.

While, fortunately, I don't have bowel issues, I can completely empathise and would encourage you to make a formal complaint at being unhelpfully labelled as having health anxiety and insist it is taken off your notes, but also - hang on in there. You may be lucky and at least get some well deserved relief from these hellish gynae symptoms. Endometriosis and adenomyosis are sheer hell, and I am glad to see the back of the pain and the bleeding.

I hope you can get a proper diagnosis for your bowel issues - they band irritable bowel syndrome around all the time, without proper investigations. Say on your complaint, you would like a firm diagnosis which includes whether it is related to your endo with a view to a comprehensive treatment plan.

Best of luck.