Endometriosis Action Month March 2023...

[TogetherWeAreStrong]

Every March, people all over the world show their support for everyone affected by endometriosis and come together for Endometriosis Action Month. And this year is no exception.

This year, we’ll be busting the myths surrounding endometriosis and highlighting the real impact of living with the disease. All too often, those with endometriosis have their symptoms dismissed. Ever heard the phrase “it’s just a bad period” or that “pelvic pain is normal”? There are lots of myths around endometriosis, including that it’s just something you have to deal with. This year, we want to help turn that around.

There will be a number of exciting ways you can engage in the month, from sharing your story to lobbying your political representatives to support our key asks and campaigns.

Watch this space as more plans are revealed...

[Lindle]

You mention that this year you’ll be busting the myths so perhaps you could start with the Endo UK website.

You highlight the phrase “it’s just a bad period” which so many get told and yet your description of what endo is supports this notion.

The website says 'each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. This can cause inflammation, pain and the formation of scar tissue.'

This very clearly suggests that endo is effectively a period outside of the uterus. There is no evidence to support this. The reason we have a period is that the endometrium dies due to the withdrawal of the hormones that the corpus luteum was producing to support it. Once the corpus luteum dies so does the endometrium which is then shed as blood and other dead debris. If it were the case with endo it would die off each month and just be an adhesive disease which is what Endo UK appear to say. There could be no such thing as deep endo as it would never progress. Endo fibrosis/adhesions is the result of chronic inflammation by active endo as it progresses over years and not just one month.

We still know little about endo in order to give any definitive description of endo but we do know it is well equipped to survive the period. It produces aromatase within its cells in order to produce its own oestrogen once the circulating levels drop and the activity of progesterone has been found to be different from that in the endometrium; there are many other factors besides that support the survival of endometriotic tissue.

I asked a prominent excision surgeon why this simplistic and almost child-like description persists and he suggested it is because women need a simple explanation as if they don't have the intelligence to process anything more complicated. This really needs to stop as those with endo are now often far more education than medical professionals on the subject.

Your website also says 'The only definitive way to diagnose endometriosis is by a laparoscopy' when this is no longer the case. The ESHRE (2022) guideline is clear that the diagnostic lap is no longer the gold standard and refers to it as 'outdated dogma'.

This really isn't written with any ill-intent but when Endo UK is promoted as such an influential organisation with reliable information, supporting those with endo, it surely has a duty to ensure that is the case.