Am I the victim of patient profiling? - Endometriosis UK

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Am I the victim of patient profiling?

Kall27 profile image
3 Replies

Since around the age of 16 my GP's have been speculating that I may have mental health problems although I have never presented with concerns of my own (I turn up with a cold and they suggest counselling or anti-depressants - obviously I'm exaggerating but that's how it feels), it is my firm belief that this is due to my mothers medical history which includes Bipola Dissorder.

I have endometriosis and periods of vomiting during my mentsrual cycle as well as having IBS & suspected Pelvic floor dysfunction.

When the vomiting first presented (pre-endometriosis diagnosis) I had tests to "rule out anything sinister" and all came back normal which meant the cause for the vomiting was, at the time, unknown. Yesterday my GP told me that in the notes from that period, it was written that it was "a mind illness rather than a physical one".

My most recent visit to my GP was advised by a doctor who treated me at A&E for dehydration caused by the vomiting and "severe constipation", which he believed could have been the cause of the vomiting (I hadn't made a BM in almost 3 weeks). It was his belief that my IBS and vomiting should have been being managed better with the help of a gastroenterologist and he advised me to speak to my gp to get a referral although he felt this should have already been something that had been done by now & even suggested considering changing GP.

Taking his advice, when I had recovered, I attended an appointment with my GP and explained the doctors suggestion. She responded by saying she didn't have the authority to make a referral so she would speak to a more senior dr and call me in a couple of days. Today was the day she called.

"After speaking with a senior here and after looking back through your notes, I seen that you had some tests in the past and you seen a doctor about your vomiting in 2007, so as your symptoms haven't changed much since then I don't think referring you to a gastroenterologist would be the right thing to do. Would you be happy to see a mental health worker?".

I replied by telling her, when I was last seen (a decade ago) about my vomiting symptoms, I didn't have the bowel problems which I now have and which influenced the doctor at A&E's advice, nor the weight loss (which started almost two months ago). Again, in a highly patronising tone she said "like I said, I'm happy to refer you to a mental health worker and in the meantime while you're concerned you can pop in to have a chat with me. I'll make you an appointment for Friday".

Am I the victim of patient profiling, it certainly feels that way?!

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Kall27
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3 Replies
Minnskimoo profile image
Minnskimoo

Hi Kall27.

Who knows these days?! It's appalling . And I am sorry to hear about your experiences with your GP. Sadly, the response from her is not uncommon. Due to the nature of endometriosis, until it has developed to a stage where one can barely function most of the symptoms one experiences with this horrid disease are common ailments that GP's deal with daily, and therefore, not deemed important or bad enough to warrant further investigation. Annoying to the enth degree! Makes my blood boil.

I too have experienced exactly the same issues many years ago and I still am now!

I experienced severe constipation along with whole myriad of symptoms and paid numerous visits to try and find a solution.

It took me seven years to be 'heard' when I was so unwell with my 'hypochondriac' symptoms (my early diagnosis from GP)where I reached the stage of collapsing when out and about. I had to bite the bullet and go private as I felt as though I was a nuisance. I began to doubt myself, had I actually made myself ill? Had I made myself have the horrid, painful, and at times, incapacitating symptoms? After all, nothing had been uncovered - so far. As it goes, after consultation, and a laparoscopy, within a week I was booked into have a total abdominal hysterectomy. I had stage 4 endometriosis and quite frankly, my insides were a mess!

It beggars belief that we are automatically looked upon as 'malingerers' or 'clinically depressed' (although, perhaps that is as a result of knowing you are not well but not listened to! Grr.)

I am now being investigated for an autoimmune disorder and yet again, in a very similar situation. Back to square one in the 'not being listened to' stakes. I still have the label "hypochondriac' on my notes to this day - it infuriates me and obviously doesn't help my cause!

I think we know our bodies better than anyone, and sadly, the 'anxiety' 'depression' label seems to be the norm and mostly aimed at the female population. Sweeping statement I know, but that is how I view it!

Don't give up and let yourself be talked into thinking you are having mental problems. It's your body and the days when 'Dr knows best' isn't always the case . I have felt misjudged on many of my visits. And extremely patronised. However, quietly (but painfully) triumphant when I proved the GP's wrong after my operation.

Perhaps a copy of your records could enlighten you as to the way your visits are viewed.

.....Never let a stumble in the road be the end of the journey!

x

I'm so sorry you have been though all that you have. sadly it seems to be normal practice for doctors. I don't think they have the training in spotting symptoms for endometriosis. They have a Edwardian approach when it come to dealing with woman's problems.

I Have had treatment like this for the last 28 years. I developed a 6 cm cyst which burst and has re grown. I was sent for a vaginal ultrasound scan in June this year which confirmed all of this. I was diagnosed with endometriosis then. If it had not been for the cyst , chronic fatigue and chronic pain I have. I would still be struggling to deal with everything. After researching what I was dealing with. I think I have been miss diagnosed for the last 28 years. Last year I even had nasal surgery as I can not smell anything. 6 months later I was back in the same boat. I believe endometriosis can cause nasal problems.

I have been using Clary sage essential oil to balance my hormones and it also helps with the pain. I would check before you try if you are on any hormones medications as it my cause problems.

Painkillers wear off quickly in my body the doctors gave up describing them.

I hope you can find a way to get your head around all of this soon. That the doctors start listening.

Lisa199 profile image
Lisa199

Hello. That gp clearly doesn't know how to do her job. She isn't listening to you at all and even if you did have mental health problems with the bowel problems you are having you'd need to see a bowel specialist anyway!!!! it makes no sense. See a new doctor I think! Good luck x

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