Media articles about endometriosis

Andy

Andy

Retired committee member
"Endometriosis is excruciating. But the medical scale for pain is tragically flawed, leaving women in particular to suffer


On a scale of zero to 10, with zero being no pain at all and 10 being the worst pain imaginable, how is your pain?

Because pain is impossible to diagnose objectively, doctors often refer to a chart of emoticons to understand how their patient is feeling. At the bottom of the chart is the frowniest of frowny faces: pure, unadulterated agony. At the top is a carefree and happy smiley face: no pain at all.

It’s called the pain scale, and it is tragically flawed. I would know: I suffer from endometriosis, so I am well acquainted with all the various ways doctors try to get you to measure suffering.

This self-reporting tool is otherwise known as the Numeric Rating Scale, which dates back to the origins of the opioid epidemic, when OxyContin was first approved in the mid-1990s and the American Pain Society developed the Pain as the Fifth Vital Sign initiative."

https://www.theguardian.com/lifeandstyle/2023/mar/15/pain-scale-women-endometriosis-period
 
The article makes a good point. A pain scale has to be interpreted in the light of an individual's experience. A child, for example, may not have experienced much pain in their life and so the range of their scale may not be large, they may not be able to imagine pain much worse than what they can remember experiencing themselves. Possibly the average person who has given birth may have a higher '10' on their pain scale than the average person who hasn't given birth.

To throw another wrench into all this, Mogil says different genders may not even be operating with the same pain scale. “When you’re talking about sex differences, the problem is, well, what if women have a bigger range than men do? What if they can imagine more pain? And why would they be able to imagine more pain?

“Well, if they’ve given birth, they’ve been in more pain than most men ever have. I mean, unless the man in question had a particularly bad injury, or some sort of gunshot wound, or a kidney stone, the woman’s probably been in more pain. So maybe her scale is bigger,” says Mogil.

For so many people, chronic pain becomes a part of how we are perceived by others – and even how we perceive ourselves
“If she gives you a five and the man gives a five, it looks like they’re giving the same pain rating, but actually the woman’s five is bigger than the man’s five.”

Of course, the opposite is usually how that information is interpreted: women’s pain is considered less intense or serious than that of men. If I say my pain is a 10, and a doctor understands that to be a five, maybe I’ll go home with antidepressants instead of pain meds.
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Merged
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.
 
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The two most common surgical treatments for endometriosis are excision and ablation. Excision removes the tissue, while ablation merely burns the surface of the lesions.

Doctors agree that excision is the superior treatment because the recurrence rates plummet. Women treated with ablation are much more likely to undergo surgery again.

But surgeons are encouraged to burn the cells rather than cut them out because it’s a simpler procedure—and they can only charge insurers for the cost of ablation. If patients want excision, they almost always have to go out of network.

“The unfortunate reality is that not enough patients are offered surgery who would benefit from surgery,” Dr. Melissa McHale, a Maryland-based gynecologic surgeon specializing in endometriosis excision, said. She added that there are not enough “skilled and willing surgeons” to perform the procedure.

Sometimes patients are told they received an excision when the lesions were, in fact, burned. “The pathology report will show they merely took a biopsy to have tissue diagnoses, and then just burned everything,” Orbuch said. The doctors have “lied to the patient and said it was a true excision surgery.”

And so, women with endometriosis face two challenges: getting diagnosed, then avoiding medical malpractice.
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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.
 
RedFox said:
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.
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Wow, that's a horrifyingly ironic fact
 
I wish we knew more about "normal" periods. I'm so sick of it being thrown around that pain, nausea, cramps etc. is "normal". There is a project at a Norwegian university on periods and exercise, and one of the women interviewed about it said she believed period problems was about mindset, because she'd never had any problems and couldn't believe other had it worse than her...

I don't have endo, but I did lose my period for nearly two years. Kept being told it was normal that it was unstable for teenagers (this was late in my teens an I had had a stable cycle for years already, something that was completely ignored).
 
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.
 
New article.

‘Gaslit by doctors’: UK women with endometriosis told it is ‘all in their head’

Women with endometriosis who have endured years of excruciating pain are being “fobbed off” by doctors and told their symptoms are “all in their head”, leading them to give up seeking NHS treatment, new research has found.

A study carried out by academics at Manchester Metropolitan University found women with the disease felt “gaslit” by doctors due to their lack of understanding of the condition.

The paper, due to be published in the Journal of Health Communication later this month, also found that treatment was subject to a postcode lottery. Patients in rural areas reported travelling for hours to access a specialist with full training in the complex gynaecological condition.

https://www.theguardian.com/society...th-endometriosis-told-it-is-all-in-their-head
 
I can give men some idea of what gynaecological pain and treatment might be like.

Imagine being 13 years old and the blood supply gets cut off to one of your testicles because it gets twisted. It would start to die immediately, and it wouldn't take long to start becoming necrotic. Now imagine that everyone - parents and doctors - thinks you are attention-seeking. So they ignore you and ignore your pain and don't treat it because - to them - there is nothing to treat except a hysterical, attention-seeking child. When your parents eventually take you to the doctor he asks how things are at school, and then tells you to lose weight because that testicle of yours has ballooned up to many times its normal size, so you must be fat.

Over the next month the testicle twists further until it is completely twisted all the way round twice.

Parents take you to the doctor multiple times over the month after the pain started but you get fobbed off every time. The parents still aren't convinced that your problem is real, and nor are the doctors.

Eventually you are admitted to hospital. You get your dead or dying testicle manipulated by a doctor who gets angry when you scream and refuse to let them do it again.

This story keeps going on and on and on - but I am describing what happened to me and it was an ovary involved not a testicle.

If you have ever wondered what it is like to have one of your internal organs dying and rotting I can assure you from personal experience that it is pain of the type that most people are never likely to experience.
 
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Endometriosis needs to be treated by NHS as chronic condition, experts say

"Endometriosis should be treated as a chronic condition by the NHS and taken as seriously as illnesses such as diabetes and bowel disease, experts have said.

A study looking at the quality of care provided to adult patients who had been diagnosed with endometriosis found that within healthcare, the condition is often treated as multiple isolated episodes of acute care, instead of being seen as a continuum of symptoms in the same way conditions such as diabetes are recognised."

"The report, published by the National Confidential Enquiry into Patient Outcome and Death, an independent healthcare charity, also recommended that training for healthcare professionals should be improved to recognise the symptoms of endometriosis such as pelvic pain and heavy periods, and that patients experiencing endometriosis should be asked about how the condition affects them beyond just the physical symptoms.

Endometriosis care has long been recognised as substandard, with a previous report finding that on average women are waiting nearly nine years for a diagnosis in the UK."

https://www.theguardian.com/society...eated-by-nhs-as-chronic-condition-experts-say
 
Andy said:
Endometriosis care has long been recognised as substandard, with a previous report finding that on average women are waiting nearly nine years for a diagnosis in the UK."
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I waited 19 years, but it made no difference. There was no belief that the pain was as severe as I said it was.

I have seen women saying that they waited 30 years or even more, so 19 years is bad, but there are plenty of women who wait longer.
 
Merged thread

Colleagues thought I was faking endometriosis pain - BBC article

For women living with endometriosis, debilitating pain, fatigue and heavy periods can make it feel almost impossible to sustain a career or social life.

The only way formally to diagnose endometriosis is through invasive surgery, but getting to that stage can take on average eight to 10 years, from a patient's first GP appointment.

For women like Dee Montague-Coast, 41, the lack of evidence of disease during the diagnostic delay can lead to people not believing they are unwell, and even force them to change careers.

Now an evidence-based "symptom reporting tool" has been developed by Cardiff academics aimed at highlighting patterns that will raise healthcare providers' attention.
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She said this diagnostic delay caused further health issues, including myalgic encephalomyelitis, external or ME, which is also called chronic fatigue syndrome, and fibromyalgia, external.
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Endometriosis: Woman with years of pain says symptoms cost her job - BBC News
 
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She said the symptoms such as intense pain, bowel and bladder issues, and low mood can often lead to confusion at the point of referral, and ultimately delayed their diagnosis.
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Gee, I wonder what could be responsible for this? Oh well, no way to ever figure this out. :whistle:

Although there is something absurd in that the 'tool' is simply a symptom tracker. Symptoms most patients will report. Which all could be avoided if they weren't dismissed. And they are dismissed because of the weird creep of psychobehavioral pseudoscience, whereas they used to simply be dismissed without a reason. Which is just about the opposite of progress.

Still the obsession with being cheated. I really wonder what is the true ratio of cheaters:misdiagnoses. I would be shocked if it's better than 1:10.
 
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