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?

Oh, that's strange, I will check mine.

PMs have currently been disabled by MN, due to links to illegal images having been sent by PM recently.

Edit - *to some posters

OK thanks

Dear OP. Write to both GP and consultant - same to both, stating what you have said here. It needs to be on the record so not a phone call. Hope you get these health issues resolved and live more comfortably really soon.💐

As you've already complained about the delayed diagnosis, she could well be attempting to muddy the waters, or wanting to convince herself they are muddy. Can you ask to see your medical notes to check what's written there?

'Health anxiety' is a term that can have different meanings (despite the NHS website presenting it as if it's a clearly defined term). Rather than immediately complaining and getting into a debate about whether you are / aren't anxious, I'd be tempted to push back by asking her some probing questions in writing, cc your GP, explaining that you are very concerned about the potential for someone to diminish your health problems and so would like her to clarify: On what basis has she made this assessment? You are not aware of anyone having done a psych assessment of the nature or level of any anxiety. Is she suggesting that some of your problems do not have a physiological basis? If so, which symptoms, and why does she think this? Is she suggesting that some of your physical problems are exacerbated by anxiety about them (very different interpretation and important distinction)? If so, could she suggest sources of support you could be referred to (eg NHS clinical health psychology) and whether this would be grounds to move you up the waiting list?

As a psychologist, I think it's negligent and outside the bounds of the consultant's expertise to throw around terms like this. The least you should ask is for the consultant not to use a term that is open to harmful misinterpretation again without clarifying the basis of her claim and the nature and impact of the anxiety. Depending on her response, you can then decide whether to pursue a claim.

As you indicated, your kind of health difficulties can cause a lot of anxiety. Anxiety is partly a bodily response and so it can make something like IBS much more difficult to manage. This is well known and proper anxiety management should be a core part of good care if relevant, rather than irresponsible vague references to anxiety being thrown around in a way that undermines your credibility.

@ASockofFleagulls as we've got no PM option, these are the people I recommend:

for ultrasound - Prof Jurkovic at the gynaecology ultrasound centre on Harley Street. https://ultragyn.co.uk. (it cost £490 for a scan and consultation - it's worth being aware that the endo nodules need to be a certain size before they can be seen on ultrasound, so the answer could be maybe rather than yes or no. They will only perform abdominal/rectal on a a girl who isn't sexually active but can assess ovaries/urinary tract and kidneys/bowel)

Cleveland Clinic (near Harley Street) Arvind Vashisht for endo (works at UCLH) and Dr Zarate Lopez (neuro gastro, also works at UCLH, specialises in pain management for bowel endo).

Prof Vikram Talaulikar, also at UCLH but has a private clinic, can help with menopausal management for women with endo.

NHS offering was a 19 month wait for an appointment at the wrong clinic.

Yes, it’s outrageous that she puts that on there. Definitely complain and say that she shouldn’t be stating her opinion as a diagnosed fact.

Have you looked at if you have SIBO? Small Intestinal Bowel Overgrowth. The NHS tests for this now.

It would be OK if 'HEALTH ANXIETY' was redefined as 'ALARMED AND FRUSTRATED BECAUSE SHE KEEPS GETTING MISDIAGNOSED, FOBBED OFF AND PATRONISED BY A BROKEN SYSTEM'.

YANBU. When I was pregnant with DD, they thought she might have inherited my craniosynostosis (fused skull at birth), so I requested a c section as it's the safest option for baby and mother in that case. They put it down as health anxiety and I demanded they changed it. I wasn't anxious without cause! That's like saying a cancer patient has health anxiety because they're worried about the future.

Agree the consultant is not qualified to diagnose health anxiety. I think it's fine to request in writing that this is not added to any notes or correspondence going forward. I think it's also fine to say that you have been suffering with severe symptoms for years without effective assessment or diagnosis and that anyone left to deal with these symptoms would likely feel anxious. That's a normal response and not what health anxiety is.

Maybe 'health frustration' would be more accurate for the record, if she'd rather - i.e. frustrated at being fobbed off because nobody would take your clear & present symptoms seriously!

I'm sorry to hear your going through this, I haven't had chance to read all your posts but I just wanted to add that I had a similar experience to you in being fobbed off by the NHS, I was diagnosed at 14 yo with endo surgically (during removal of large endometrioma). My experience at the time (20 odd years ago) was that most gynae consultants didn't really understand endo and like you sent me down various dead ends suggesting I might have IBS etc and as I was so young I don't think they really believed my pain was that bad. You mention support groups which is good,the one thing that really helped me was asking the local endo support group I attended for suggestions of good consultants locally and the one I found was like a breath of fresh air, he actually took time to listen to me and understood the condition, and really changed my life. So at the age of 18 after 4 surgeries for cysts and dozens of admissions to hospital with severe pain, he got my endo under control and I was able re-take my A levels and go to uni.

You have a GP that is gaslighting you.

You are experiencing these issues. They are not made up. This smacks so much of a GP getting through medical school and refusing to carry on learning about the human body and particularly the female body and all of the issues that women go through.

If I were you I'd be trying to find a different GP or consultant (whichever the 'Health Anxiety' is being written by), and I would give strong consideration to reporting them to their governing body as they are gaslighting your condition.

I'm so sorry that you're going through the issues that you are.

All of my letters call me 'lovely, very obese lady' I complained. I am obese but it has no bearing on anything and just means they blame all my problems on that .

This.

Definitely raise as complaint.
i too have endo and multiple gynae issues together with ibs. I recently saw a Gastro consultant and discovered my ibs (last 20yrs of suffering) was actually BAM - Bile Acid Malabsorption, started on binder meds and so much better now

Wow that would really piss me off. I would definitely ask for it to be removed from your record and it not to be used going forwards. It’s like a big flashing sign to anyone involved in your care that your issue is psychological and doesn’t warrent proper investigation. I doubt it would be put on a man’s medical notes and letters, it’s really infantilising. Another example of women’s healthcare issues being seen as not real.

Thank you, that's very helpful.

I will see if I can look at my health records to see if she has written this on my notes each time.

Thank you. I did pay for DD to have a us but nothing flared up but as you say, endo very rarely shows on these kind of scans. I have lost count how many I've actually had but only my thickened lining and polyps showed up. I had an US in October '23 which came back as normal yet the MRI just two months later came back with diffuse adenomyosis and deep endometriosis!

I will keep a note of the consultants you have recommended.

I am under the UCLH neuro-gastro team for the pain management/gut issues, my neuro-gastro is Dr Fikree.

I am in the complain camp 100%.

However, what ever you do, do not say you are “anxious” or use the word anxious in any way other than when you are referring to their characterisations of what they deem to be your anxiety eg I am anxious because I am living with daily pain, bloating, etc.

Try to find another way of referring to it from your perspective. Something like appropriately concerned given your daily symptoms, particularly as previous medical interventions were unsuccessful.

or something!

If you say you are anxious, they go yup, health anxiety.

This is a bit of a sore subject atm.

I tested positive for hydrogen SIBO and was fortunate enough to get a two week supply of rifaximin via the NHS but it didn't help. I have since found out (as I am now on lots of support groups), that antibiotics alone are not enough to kill the bacteria, you need motility agents etc then lots of probiotics to repopulate, gastros don't seem to have much knowledge on the subject. Unfortunately, my gastro isn't too interested in SIBO, she says I'd need to suffer from a significant health problem such as diabetes for it to be an issue, not sure what she thinks endometriosis is, it's certainly no walk in the park.

I'm working with a functional practitioner on this atm. It's not an easy thing to kill off.

There's a wonderful gp at our surgery who was so helpful when I saw her last year but I keep ending up with appointments with this unhelpful one even though the lovely one is down as my nominated GP. We have to do everything via the Anima app now so I can even speak with someone. Next time I make an appointment I'm going to have to state on the app that I only want to see her.

Bloody hell, that's awful.

That's exactly how it feels, as though. forever more I've been branded as a pain in the arse. I'm certainly not, I never make a fuss about anything which has probably been my downfall.