To all the doctors and nurses who disregarded me,
Over the past seven years, 19 of you completely dismissed me, my pain and my concerns. I was told that my pain didn’t exist, or that it was normal to have period pain, or that I couldn’t possibly have endometriosis and I shouldn’t diagnose myself through google. I was made to feel like a hypochondriac and that my concerns weren’t valid.
It wasn’t just that you dismissed me, but it was the way that you dismissed me. The way many of you spoke to me made it very clear that you knew better than the twenty-something girl sat in front of you, and I guess training for 6 years to get a PHD lets you believe that. The majority of you said that you were unsure why I was in pain, but that it couldn’t possibly be endometriosis – but if you had no idea and I had a suggestion, why didn’t you look into it?
While fighting for a diagnosis I was also accused by one doctor of being a drug addict because of my repeated trips to the GP and prescription pain medicines. Finally, the most horrific treatment came from the penultimate doctor I saw, after visiting an urgent care centre in absolute agony both the doctor and nurse I saw there said that they thought I had endometriosis without me even mentioning my suspicions. Unfortunately, they could not refer me to have it investigated because this has to be done by a GP that I can regularly see, so they advised I book a GP appointment and request a gynaecology referral. At this GP appointment, I described my symptoms to you and said that both the doctor and nurse had given me a preliminary diagnosis of endometriosis. I’d barely finished speaking before you told me “there was absolutely no possibility whatsoever that I could have that” then said you needed to double check what it was and googled it! You still weren’t convinced, and sent me for every test under the sun before you would consider referring me to a gynaecologist.
By a stroke of luck, you were unavailable for my follow up appointment to review my test results, and I was seen my a different GP. She took one look at my records and immediately referred me to a gynaecologist, even telling me that from my complaints it was obvious that there was a high chance of endometriosis.
Fast forward 16 months, and I am currently signed off from work recovering from my diagnostic endoscopic laparoscopy with a diagnosis of stage 4 endometriosis and adenomyosis. And all I can think about is if one of you had believed me, maybe they could have found it earlier. Maybe I could have received treatment while it was still minimal instead of severe. Maybe I wouldn’t be this 24 year old girl sat here paralysed by the fear that I may not be able to have children.
There were many times that I gave up on trying to find out what was wrong with me, there are only so many times you can be told there’s nothing wrong with you without starting to believe it yourself. If it hadn’t been for my partner, who did his own research and came to the same conclusion and supported me in pushing to be heard, and my friends who also provided me with support and a place to vent my frustrations I would almost definitely have given up. I’m sure there are many more women who have given up in the face of this repeated dismissal.
This past week, I have been very angry with the majority of medical professionals I saw over the last 6 years, and also with myself for not pushing harder and with more conviction. The most frustrating part of this is that I am not alone in having a story like this, and that this actually seems to be the norm in diagnosis. This definitely has a detrimental affect on your mental health, and I just hope that as more people speak out, stories like this become a thing of the past. Two years ago, when I mentioned endometriosis to people, the majority of them didn’t have any idea what it was, but now at least half of them do – so we’re heading in the right direction and I just hope it can continue.
Sincerely,
One very frustrated, but for the first time in a while, cautiously optimistic endo sufferer

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2 Comments

  1. An interesting read. I reckon you should name and shame the GP practices and send a private letter to each GP you can remember just so they are aware of their negligence and duty to investigate. Hopefully they will be embarrassed/enlightened and think about their future conduct and actions.
    I’ve also been through life threatening GP dismissals and subsequently very cautious of them. I collapsed one morning unable to breath- I had had a pneumothorax (collapsed lung) and managed to get an emergency appointment to which the GP said I had muscle cramps in my chest and sent me home. I later collapsed again and was rushed to A&E where after X-rays showed a 50% collapse was told I should have been admitted to hospital immediately and had a chest drain – not walking and driving a car around putting mine & other people’s lives at risk!

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    1. Thank you!
      Quite a few people have mentioned sending a letter to them, and I am quite tempted. More so that they can learn from their mistake and hopefully not do this to another patient.
      Sorry to hear that you’ve been through similar dismissals – your experience definitely sounds a lot scarier! It’s just unbelievable that you were sent home with a collapsed lung! Did you tell your GP that they missed this?

      Like

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