I Wasn’t Hysterical. I Was Sick. (about endometriosis)

Endometriosis—good article.

https://www.thefp.com/p/i-wasnt-hysterical-i-was-sick


Since age 15, I have experienced exhaustion, indigestion, and recurring nausea. I was grateful when I got into Princeton, but when I arrived, I couldn’t keep my eyes open in lectures—despite sleeping over twelve hours every night.

 

Appalling. Amazing it could have spread so far without being detected.

 

The headline and plot has a nice irony. Hysteria originally meant a wandering uterus. And endometriosis is when uterine tissue begins forming where it shouldn't, the closest thing to literal hysteria you can get.

I don't know what else to say. There are so many stories of medical gaslighting it's just depressing.

 

Wow, that's a horrifyingly ironic fact

 

The fact that endometriosis doesn't show up on scans is one of the biggest problems for women trying to get a diagnosis. Over the years I had x-rays, ultrasound scans, and CT scans (no MRIs that I remember) and I was always told there was nothing wrong and it wasn't until I had an internal scan of the type mentioned in the article that I was diagnosed (after 19 years of being dismissed). But the scan wasn't done by the NHS it was done by a private IVF clinic, and the IVF Clinic refused to contact the NHS, telling me that were not legally allowed to do this. (With hindsight I think they just didn't want to do the work involved in writing letters, so I was being lied to.) So the fact that I'd been diagnosed with what was described as "aggressive and severe endometriosis" had almost no effect on the NHS and my GP records. The single word "endometriosis" appeared in the GP summary, and that was all. The diagnosis appearing on my GP records at the time came from me reporting what the IVF clinic had said, and of course I am not considered to be truthful.

Then eventually I had a hysterectomy (also done privately). This was before I had any legal right to read my own medical records. My GP at the time received a letter from the surgeon which reported that I had "very severe endometriosis". I had to ask my GP what the surgeon had written about his findings and she read his letter out to me. A couple of years later I mentioned my "very severe endometriosis" to the GP who had read the letter out to me and she rolled her eyes at me, obviously because she thought I was attention-seeking and exaggerating. The findings of my surgery never made it into my GP records.

Some years later I bought copies of my medical records from my GP and found an absolute mess. An organ removed during surgery as a teenager didn't even merit a mention in my records. According to my records it has grown back, disappeared again, grown back a second time, been removed again, and reappeared again when I was in my 40s, 30 years after it was first removed.

I've had surgeries done by the NHS that aren't even mentioned in my records. There are several omissions that have already impacted on my health. I talk to doctors and they sit there like brick walls, making no comments on what I say to them, and many doctors appear to have eye-rolling down to a fine art. I'm flagged as a drug-seeker because I tried to get help for years for the endometriosis I suffered. And once someone is labelled as a drug-seeker, the flag never gets removed even if the patient is proven to have a very severe and painful health problem. But they make doubly sure I continue to be disbelieved by not recording things that would help my reputation and my future "care".

I assume I'm flagged with other insults too - attention-seeker, hypochondriac, liar, waste of space, Do Not Treat For Anything Invisible. The only time I will willingly go to see a doctor now is when I have visible proof of something being wrong, because I don't want to go through the humiliation of being disbelieved about my own history again. It makes no difference even when I present information from my GP records that I now have copies of.

I have sent covering letters to my GP along with the letters and records that have been ignored asking for them to be included in my summary and yet my treatment from doctors has never changed, and as far as I can tell, neither have my summary records.