Treating Endometriosis as a Women's Disease Hurts Patients of All Genders

submitted by alttrawl from (ovarit.com)

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[–]Eurowoman24 5 insightful - 1 fun5 insightful - 0 fun6 insightful - 1 fun -  (5 children)

i have endo and nearly killed myself. because of narcs like that research will be delayed even more.

[–]MarkTwainiac 8 insightful - 1 fun8 insightful - 0 fun9 insightful - 1 fun -  (4 children)

Sorry to hear that.

Also, for the record, there are other excruciating pelvic pain conditions that girls & women have that doctors will presume to be endo but which might be due to other causes - and none of those other female pain conditions are being researched either.

I've had severe pelvic pain since age 11 that initially occurred only when/around the time I menstruated, but later became more chronic and occurred all month long. Nobody in medicine took my complaints seriously until I had what doctors considered a very bad labor and birth and I told them that my periods were actually much worse than that.

Turns out I have a primary immune deficiency disease that causes me not to form antibodies to viruses - and as a result, I have continual bouts of shingles (varicella zoster virus) in the nerves of the lower spine connected to my ovaries, uterus, vagina, bladder, urethra and pudendal area. These bouts of shingles seemed to be set off by the fluctuations in female hormones that occurred during the ovulation-menstrual cycle when I was in my "reproductive years," and now are set off by the natural decline in/absence of hormones and diminished immunity that occurs with advanced age.

My condition might be rare, one in 10 million, or it might be common. (Since pretty much everyone has the varicella - or chicken pox - virus in their nervous systems, and so many adults have lower back, hip and pelvis pain problems especially as we age, I suspect it might be fairly common.) But we'll never know in my lifetime, coz no doctors give enough of a shit to research it.

[–]Eurowoman24 4 insightful - 1 fun4 insightful - 0 fun5 insightful - 1 fun -  (1 child)

I'm really sorry, that sounds horrifying to live with. Yes I know that no research is being done into other conditions either, which is why it makes me so mad when the focus is all on pronouns and not calling it a women's disease.

[–]MarkTwainiac 6 insightful - 1 fun6 insightful - 0 fun7 insightful - 1 fun -  (0 children)

A significant number of the female population lives with chronic or recurrent pelvic pain that is life-altering or life-ruining from endo or other causes. Yet none of it gets researched. Lots of doctors still are taught, and believe, the nonsensical "reverse menstruation" explanation for endo that some crackpot came up with 100 years ago. In the years I was being sent to endo "specialists" I was shocked at how cavalier and casual most of them were about it.

I too resent how the pronoun people are being prioritized and slavishly catered to in medicine. Hope you've found a good physician, and best wishes to you.

[–]Silverhatband 2 insightful - 1 fun2 insightful - 0 fun3 insightful - 1 fun -  (1 child)

My, my sincerest sympathies for you regarding your medical condition! OMG. Intellectually, I understand your condition, though I'm not strong enough myself to imagine/empathize for more than a minute. Truly, you have had travails!

[–]MarkTwainiac 4 insightful - 1 fun4 insightful - 0 fun5 insightful - 1 fun -  (0 children)

Thank you kindly. Yeah, I've had travails. But so have a lot of other people. On the upside, I was blessed by being given a very good brain, a sharp memory, a pretty good way with words, and an excellent sense of humor. So overall, I feel I did okay in the crap shoot of life.

I only divulge the root cause of my pelvic pain is coz I think other people might be afflicted with it. Shingles affects a huge number of the population, particularly over 50, but I've also known a number of young people who've had shingles, including recurrent forms of it. Varicella zoster virus is pretty much ubiquitous in the human population, but given this surprisingly very little research has been done on it.

The other reason I share this info is coz the medical profession tend to say and assume all female pelvic pain is due to endo, when that might not be the case. So many women who've had surgeries for end still find no relief from the pain. Part of the reason might be the faulty methods the surgeons are customarily using - my guess is that cauterization of endo is far less successful than excision with a surgical knife, as David Redwine postulated in the 1990s. But another reason might be that there is something else going on in addition to endo or entirely apart from it in some or many women with chronic pelvic pain.

A highly-credentialed urologist I've gone to believes that a lot of women with chronic UTIs/cystitis are suffering from shingles of the urinary tract, but that's just a hunch he has - he can't get any funds to test his theory. But he's started prescribing anti-VZV drugs like acyclovir and Valtrex to women he sees who still have bladder and urinary pain after their acute bacterial UTIs have cleared up. His theory is that the bacterial infections in the female urinary tract, and the antibiotics used to treat them, open up the way for an outbreak of VZV. In much the same way that antibiotics use often result in an overgrowth of candida, aka "yeast infections."

Again, thank you for your kind words.