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?

WTAF, that's so shit.

Health anxiety is where you fear problems without evidence that you have them. You have the literal opposite, you have the evidence (ie symptoms) and they're failing to diagnose the problems. They're gaslighting you into believing that their failure to diagnose is actually your failure to accurately identify your symptoms.

Even more inexcusable given that you have literally been proved right by being fobbed off for years before the endo & other diagnoses.

Fuck that shit. Yes complain.

Medical schools churn out some poor specimens. I've met several doctors who take a view that their text book lists 12 symptoms and if you don't tick every box, you haven't got that issue - led to a week in hospital.
Largely from political correctness 'phobias' have been treated as 'irrational fears' rather than well-justified fears. Anyone suffering unresolved symptoms for a decade is not 'anxious' as much as thoroughly pissed off - though I wouldn't expect to find that on my records.

It's so annoying that women are still having this problem with their symptoms dismissed as "health anxiety".

There is an advert on the TV at the moment - I think it's for Nurofen where they say they are trying to educate Doctors and Pharmacists regarding pain experienced by women. They shouldn't need bloody educating, they should accept that women experience pain just the same as men do.

Over the years I have read so many posters saying that their symptoms were not taken seriously until they brought their husband or partner to their Dr's appointment. It's seems that because a man has backed up the women's history they then start to do their bloody job, it's so bloody annoying.

I would put in a formal complaint OP. You might have to go through PALS as well as the secretary.

You may stop her writing it but you won't stop her thinking it, unfortunately. It's infuriating. I wrote and published a book about similar experiences!

I read the first couple of lines of your post and immediately thought bowel endo. I would have suggested it if you hadn't said you've already got a diagnosis.

I have deep nodules in my rectum and bowel (I've had surgery before, including bowel surgery, and it's unfortunately come back.)

There's a few things I wanted to say;

1. Your GP is wrong. Bowel endo can cause rectal bleeding, but not always. GP's are notoriously clueless when it comes to endometriosis and most of them either don't know anything, or what they know is wrong. I had a GP dismiss endo when I suggested it because I didn't have midcycle bleeding. He was wrong. Bowel endo causes symptoms that look like IBS. And given that a diagnosis of IBS actually means that you've got bowel symptoms that they can't explain, it's meaningless anyway.
2. Yes, you can absolutely tell the gastro to stop putting that on your letters. I will hold my hand up and say that I've absolutely got anxiety related to my health, but given that I get random bouts of uncontrollable diarrhoea that are so painful it makes me cry and I've had so much incompetent care, it's hardly surprising.

I don't know if you're on any medication for it, but I ended up having to go private in the end so that I could see specific specialists. I'm currently taking a low dose of nortriptyline which has massively helped with the bowel pain and IBS symptoms (I saw a specialist neurogastro for this). You need to be at a BSGE endo centre, if you aren't already , and your GP can refer you to one though they may know nothing about it, so prepare to be pushy. I also know a specialist in London who can diagnose using ultrasound and who will see teenage girls (I took my own daughter last week). You can self refer to see him and bypass the NHS and your GP, although it's expensive. Please DM me if you want details. x.

I really do hope that you get somewhere with it all, good luck.

After I discovered that I have endo I put in a complaint via PALS. I wanted to know why they had taken so long to diagnose me despite me being under their care since 2012, going through 5 hysteroscopies and a uterine ablation (which has actually caused my adenomyosis) but all I got back was the standard 'We are sorry and we will learn by our mistakes'.

I am truly fed up (as I am sure you are too).

I would write and ask if your GP is giving you a formal diagnosis of 'health anxiety', and if so, why this hasn't been discussed with you. Ask on what basis she is making that diagnosis. Get it all in writing.

That's a specific disorder/condition. If she has diagnosed you, what treatment is she proposing for it?

www.nhs.uk/mental-health/conditions/health-anxiety/

They sound like they have been spinning you a load of bollocks for years.

When I had what turned out to be endometriosis and an endometrial cyst (I went to GP thinking I had a stomach ulcer) I had similar symptoms to ovarian cancer and my CA 125 was raised also. I was scanned and operated on within weeks - this is how it should be. The endometrial tissue was all over my bowel and bladder and I didn't have any bleeding.

So many practices seem to be very blasé about symptoms which could be cancerous and should be referring women for scans on the two week pathway at the least to be on the safe side.

You need to be very forceful about saying that yes, you are indeed worried about the fact that despite many years of suffering very real and distressing physical symptoms, pain and discomfort, you still haven’t been given a proper diagnosis or any effective treatment, however this does not mean that you have, or have ever been diagnosed with, Health Anxiety, a specific condition characterized by an excessive fear of having a serious illness, despite few or no symptoms, which is clearly not the case in this instance. You don’t think you have a serious illness, you just want to alleviate your chronic pain and discomfort. Health Anxiety is not appropriate terminology to use when a patient is merely expressing concern about debilitating physical symptoms which have not being successfully dealt with. You therefore wish all such references to Health Anxiety - a condition you do not have, and which would require a specific diagnosis - to be removed from your records forthwith, and not used in any future notes or correspondence.

It’s outrageous that they have slapped this completely unfounded label on you. I hope you get it removed.

Take it to your MP and make a General Medical Council complaint if you have to. The GP needs further training before she misses another diagnosis and leaves that woman with long term pain & infertility.

I am so sorry Theteachesoffleeches that is truly awful.

DefiantJazzMoves awful, bad enough you were so young and going through that but to be dismissed like that must have caused you so much anguish.

Kab89 When I had requested the pelvic MRI I got a letter a few weeks later to come in and discuss the results with my gynae. I took my DH with me. When we got into the consulting room (after an hours wait) he said to me the results weren't yet on the computer so I would have to rebook, he then turned to my husband, without getting my reaction first and said to him "I'm sorry, how do you feel about that?' WTAF?!

Diningtableornot this is my concern, now she thinks this I fear she will never take my symptoms or how they affect my day to day living seriously.

Dreadful OP, doctor speak for - is anxious, but is fine. As you say every other doctor that looks at your notes will form their conclusion before consulting with you.

sorry to hear this, OP and i would try to get them to stop doing it. Ask them why, when you finally got a diagnosis after "pestering" for 20 years, your very real concerns and issues are written off as "health anxiety" and would they do the same if it was a man with a similar issue, or is it just because you are a menopausal woman.

Sympathies for the extra gut issues by the way, i have them too (menopause induced) and it is really impacting my life.

I was 23-24 and thought I had IBS. It was endometriosis - at one point one ovary was adhered to the bowel wall. No wonder my digestion was completely messed up.

Sounds like you need a laparoscopy not being told you have health anxiety. What a complete CROCK - so sorry

Sorry OP. It's really frustrating and damaging. Voice your concerns and escalate as need be.

That’s really awful after you’ve gone undiagnosed for decades.

Have stage 4 endo and adenomyosis including bowel endo
I've never had rectal bleeding

Your symptoms sound very much like mine, I am so sorry you are also going through this.
The MRI results stated that I have a nodule in the pouch of douglas, I also have a very retroverted uterus which also tilts very much to the right (gynae had trouble performing my ablation due to this). I keep asking my GP (and gastro) if this could be the reason why I have such a horrible feeling of pressure on my rectal area which makes me feel like I need the loo all the time, they both say no (well, gastro says maybe but is very non-committal).

And I completely agree with you on the bowel/anxiety issues. How can one not develop anxiety when our bowels are so unpredictable?

I am lucky that our local hospital is a BSGE endo centre, sadly though I don't warm to my endo gynae, he has been so dismissive of my gut issues, he waved his hand in front of my face when I tried to ask if there was a connection. We have a fab endo gynae there and I have seen him privately, everyone wants to see him on the NHS but his list is so long. I would have loved to have continued seeing him privately but he wanted £7500 for a lap and I simply can not afford that. I will take dd to see him though. I would be happy to have the details of the London specialist, we live in Essex so not too far away.

Do tell her, she will stop putting it on letters. I am sorry you are going through this, hopefully when you reach menopause things will be much better. x

I would definitely contact PALS and pursue an official complaint against your specialist. I completely understand how frustrating it is to be medically gaslighted.

I had a full hysterectomy after years of gynae/bowel hell. My specialist (who specialises in endo/adenomyosis) said that he only has the worst cases referred to him, and of those cases my uterus was the worst he’d ever seen. He didn’t know how I’d managed to live day-to-day. I immediately burst into tears of relief/anger. I’d suffered completely agony and exhaustion for almost four decades while doctors told me that I was making a fuss.

I would also push for surgery. My bleeding continued post-menopause and HRT was problematic. Since the hysterectomy I feel amazing, and it’s made me realise the life I could have had. No bleeding. No excruciating back and hip ache/leg pain every single day and normal iron levels. Good luck! x

Absolutely get that removed, it will impact how other dr's treat you, it's bad enough for women to get taken seriously at it is,and will be even harder with that label.

It’s actually on the BBC this morning too https://www.bbc.co.uk/news/articles/cgq91e88lepo.

Im certain it’s an embedded issue in the medical profession. It needs to be taught at medical school. Likely too lake to change the thinking in the ones currently practicing.

I don't know why but mn won't let me message you (I've checked my settings)

That is very similar to what happened to my sister.

They told her they suspected OC as her CA125 was raised and she had a mass on her ovary. She had been told for years that she had ibs-c. Turned out to be bowel endo and a huge endometrioma which they took away along with her ovary. She was 45 when they discovered this.

My mother was told by her GP (same one as mine!) that her stomach pain at the age of 74 was IBS. She had never suffered with gut issues up to this point in her life. A year on, she discovered that she actually had a small bowel endocrine tumour. I hate that so many people are dismissed over very serious health issues.

I will watch that, thanks.