I was in pain for years. After I was repeatedly told I just had ‘bad periods’, a giant cyst was found on my ovary. By Holly Bourne. The Times (London)

[JohnTheJack]

For years I was told to doubt my own body. My own pain levels. I was put to sleep and cut open, only to be told I didn’t have a disease I did have. When finally diagnosed, I had to discover this incredibly common disease is vastly under-researched. There’s still no real understanding of what causes it. It’s impossible to imagine the same for a male illness this rife and debilitating...

For so long, women’s pain has been a shameful secret, one rarely taken seriously even when we tell our doctors. Since speaking out, my inbox has been filled with similar stories from women of their pain being ignored or diminished.

When the government launched a call for evidence last year, asking women to share their experiences of health services, they received more than 100,000 responses and have now appointed a woman’s health ambassador to tackle sex-based health inequality. I urge any women reading to keep the pressure up, share their stories, share their pain and fight for better understanding and treatment. Women’s pain isn’t normal, but a sign something is wrong.

(Paywalled) https://www.thetimes.co.uk/article/...-pain-for-years-why-did-no-one-help-gt0wtltcq

 

[Hutan]

On implementation of NICE Guidelines:

I was recommended the charity Endometriosis UK and, scrolling through its Instagram page, I found many others who’d had diagnostic laparoscopies wrongly telling them they didn’t have the disease. Emma Cox, the CEO of Endometriosis UK, says this is common because, ideally, only an endometriosis specialist should perform them. “The disease can be hard to spot,” she told me. “You need someone who knows where to look.” Sadly, 80 per cent of those with endometriosis are seen in general gynaecology centres without staff with specific training. The charity is fighting for the Nice 2017 guidelines to be implemented, which recommend gynaecological centres should all have defined, trained and appointed endometriosis experts in their team.

 

[Arnie Pye]

There is an organisation called the British Society for Gynaecological Endoscopy They have a list of "Accredited Endometriosis Centres". Are they any good? I have no idea, and have had no experience of them.

I found this document describing the kind of things they are supposed to do :

https://www.bsge.org.uk/wp-content/uploads/2016/05/EndoGuidance.pdf

One massive problem I've read about is that surgeons don't recognise endometriosis when they see it. They look for black "powder-burn" lesions. But endometriosis lesions come in various forms and colours, not just black, and are not recognised.

http://www.endopaedia.info/origin33.html

Another issue I've read about is that non-expert or incompetent surgeons can go in, use the laser laparoscope to burn off the top of any lesion they happen to recognise, and then think they've done their job. But endo lesions have been described by some experts as being like an iceberg. Taking the top off leaves 90% of it behind - and not only that it now has laser burns to add to the pain.

And from the newspaper article :

I will need yearly scans to check mine hasn’t grown back and I’m terrified how the disease will affect our chances of conceiving.

I'm curious. What kind of scan shows up endometriosis? I have been told that X-Ray, CT Scan, MRI, and Ultrasound scans don't show up endometriosis. So the annual scans are just pointless, but are presumably just to shut the patient up.

Edit : Oh, and finally - once a doctor or surgeon has done whatever they are going to do to the patient - e.g. laser laparoscopy, removal of various organs etc, the woman is assumed to need no further treatment. If they still say they are in pain they are depressed , drug-seeking, and mentally ill.

 

[rvallee]

The charity is fighting for the Nice 2017 guidelines to be implemented, which recommend gynaecological centres should all have defined, trained and appointed endometriosis experts in their team.

This is ominous.

For years UK physicians said the guidelines bound them about ME. Turns out it's basically arbitrary and services just do whatever they feel like doing. It's frankly hard to find areas of healthcare that aren't massively broken.

In Canada we don't really have national guidelines, local services just do what they feel is right based on broad policies. Looks like the UK isn't any different on that front, despite having an agency for that. Weird.