Endometriosis and other auto-immune conditions ... - Thyroid UK

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Endometriosis and other auto-immune conditions in women: the brain-uterus axis

HowNowWhatNow profile image
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There is a high frequency of posts that mention endometriosis here, so I am posting this article for all those people affected.

The author posits a “brain-uterus axis” as a hypothesis that can explain why women suffer much more from auto-immune conditions than men do:

amp.theguardian.com/society...

So good to know, for everyone who lives with the pain and uncertainty of this condition, that a breakthrough treatment could be on the cards.

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humanbean profile image
humanbean

As someone who had very severe endometriosis that was disbelieved and dismissed over and over again for many years, I'm extremely dubious about something called a "brain-uterus axis" being involved in the condition.

It sounds like it is only a small step from there to doctors saying "Look! I told you it was all in your head! You don't need pain relief or investigation, you need CBT!"

One of the things I had done more than once was laser laporoscopic investigation of my abdomen. When they found anything dodgy they burned it with a laser. It didn't help. I just ended up with even more endo pain and burn pain. But it was, at the time, the current gold-standard treatment so, naturally, I must be just attention-seeking and drug-seeking when I said I still had pain. They had given me the benefit of their attention, so I should be better, and if I wasn't it must be my fault.

A surgeon from the US (David Redwine, now retired) had found that excision (cutting out) of any endometriosis lesions worked a lot better than burning them, because he found that such lesions were like an iceberg, with lots more damage under the surface. UK doctors are still using lasers despite this, as far as I know.

endopaedia.info/redwine.html

Then recently the Japanese found those bacteria (fusobacterium) that were far more common in people with endo. Treating the patient with antibiotics sounds like a much better idea than cutting women open and increasing their scarring. Even if it just reduces pain but doesn't cure the endometriosis it is a huge step forward.

So, no, I'm afraid I'm not excited about the brain-uterus axis. I know how doctors can twist things so that they can continue to do nothing and blame the patient's mental health.

One thing I have found amazing in recent years is that some women with endo are being treated with pain relief that helps. I never got any that helped, I was just left to rot.

Edit : Sorry for being so negative. Endometriosis had a disastrous effect on my life, my career, my fertility, and my sex life. I've been flagged as a drug-seeker since I was a teenager and it is still affecting me now when I am in my 60s, and my relationship with the medical profession has always been awful for anything invisible. This is why I do so much of my own research and treatment for my hypothyroidism - I wouldn't trust a doctor as far as I could spit. Even after having a radical hysterectomy I still had pain from dense adhesions. I got pain relief that actually helped for the first time when I was 55. It started at puberty.

HowNowWhatNow profile image
HowNowWhatNow in reply to humanbean

Apologies if my post implied anything about the treatment of endometriosis that you disagree with or suggested perceptions of the disease you have had to struggle against.

You have my utmost sympathy and respect for living with this illness for so long.

I thought the possible antibiotic route the most interesting of the avenues and changes being discussed.

I also read the reference to women’s health being perceived as (to summarise) niche in the past / to this day with a wry smile. We could all tell them a few stories of our experiences (and I know there are lots of men here!) on this score.

HowNowWhatNow profile image
HowNowWhatNow in reply to humanbean

When I read about the brain-uterus axis, I wasn’t thinking about changes to mental health being the result. I was thinking immediately of how a woman’s body adapts physically, once she is pregnant, and of all the instructions that our brain must be giving to the uterus throughout, which we are completely unaware of. Up until the very day that contractions begin.

HowNowWhatNow profile image
HowNowWhatNow in reply to HowNowWhatNow

Which may or may not be what it means!

Sneedle profile image
Sneedle

Having scan read not deep-read the whole article I think it does show promise and that scientists are trying in different ways than before. Thanks for posting it.

Star13 profile image
Star13

Excellant article and thank you for posting but respectfully I think you chose the wrong title for your post on it. The really interesting part was on the bacteria discovered and the parallels with other bacteria’s found which caused other conditions.

There is so much in this article that just pointing to a brain - uterus axis doesn’t do it justice!

HowNowWhatNow profile image
HowNowWhatNow in reply to Star13

Hi Star 13

There is so much in this article of interest, I agree.

The internet is full of TL:DR summaries.

When you’ve read a few you see that what is most interesting to one person is old hat to another.

And that’s where comments come in.

I agree that the bacteria part is fascinating. The reason I labelled the post with the brain-uterus axis - which I don’t see as a reductive sub heading, just because female in scope, but am getting the impression that maybe others reading for the first time do, which response I’m interested to know more about and unpick - is because this axis is given in the article as being a possible reason why women are more likely to experience auto-immune conditions in general. Which therefore ties the theory into hypothyroidism and indeed hyperthyroidism, so is of relevance to everyone here, not just those reading who have endometriosis or love other people who do.

My overriding wish is that endometriosis will soon be easily treatable / preventable, whether with antibiotics, vaccines or any other non-surgical approach. And diagnosed much more quickly! I found the remark in the article that the condition is “cancer-like” so fascinating, among many other fascinating gems.

Long reads forever.

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