Terror Camp; Body Horror

[threemeninaboat]

This weekend I am on the Zoom conference about tall ship polar exploration, Terror Camp. Terror Camp is by and for young homos and to quote the author of Madness at the End of the World, "I thought my audience was old beardy guys who like the Civil War, yet there's 400 of you here, my largest audience ever, who are...not that... Why do you like me?"

I did not pipe in with, "I have the landlocked blues and I need to know that being on a ship is miserable."

-----------

When I had endometriosis surgery at 22 they gave me 1 year before I'd need surgery again. 2 if I took my meds. I got 21 years.

21 years.

The endometriosis is burrowing into my lower intestine.
I thought, Hm 21 years. Surely we have had some medical break throughs in treatment? Studies? Developments?
No.
Jack shit.

I looked at my collection of what sort of helped in the past:
Diet? Nope.
NSAIDs: Nope.
Gabapentin: Nope
Booze: Bingo


I had 3 drinks at the Gaybors Buc-ee's themed Christmas Party last night. I took 2nd in the costume contest. #1 had a texas flag bikini and stripped, she deserved it. I had a Buc-ee's onesie. We got LEGOs in the White Elephant. I ate lots of garbage. I slept well, not completely pain free, but better than I had in weeks.

I'm normally a 3 drinks a month person ish. So there's now booze with dinner. Tonight is Schilling Cider House Mango 9.1% We'll see how long it holds.
Next step is opiates and finding a surgeon.

Comments

[chasing_silver]

Yeah, it grinds my gears hardcore that there has been really nothing to help endo at all, in years and years of knowing about it. We get nothing, because uterus.

[elusis]

Yeah everybody's all worried about the uteri of young trans guys and nonbinary folks, but get a little older and they're all "just junk it!" The NYT's long-form article on how much confusion there even is around "what do they remove when they do a hysterectomy" was instructive for me, and I'm 51 and have a PhD and am a certified sex therapist.

[threemeninaboat]

Hysterectomy does not even stop endo.

[elusis]

So gruesome. I'm sorry.

[twoeleven]

I have the landlocked blues and I need to know that being on a ship is miserable.

I have a few books on tall ships.¹ Even being the captain sucked, and the crew were little more than slaves. Pretty much any time during the few thousand years between when ships had to put in for the night because they hadn't figure out how to sail out of sight of land, and the development of diesel engines, being aboard ship was awful. But you knew that.

1: I recommend Last of the Cape Horners, assuming you haven't read it already.

Surely we have had some medical break throughs in treatment? Studies? Developments?
No.

Where did you check?

[elusis]

Being on them with diesel is apparently awful as well, as per the many southeast Asian crew held on them for months or years by Chinese corporations.

[threemeninaboat]

Some acquaintances of mine were stuck on a cruise ship for weeks during COVID and had to be helicoptered off the ship.

[threemeninaboat]

EBSCO

[twoeleven]

PubMed has this 2018 paper, which mentions a few interesting medications. Elagolix is available here for endometrial pain management. Esmya is approved only in Europe, but I'm sure you can get some. It's also for pain.

One potential treatment, Proellex, crapped out in trials, but it may be back under a new name with vaginal administration. I didn't search further.

Resveratrol seems to stop the progression of endometriosis in animal models. I expect that those studies have progressed since, but I didn't check. If nothing else, drinking lots of red wine for pain couldn't hurt. :)

[threemeninaboat]

Elagolix is $10k per year and you have to take 3 other medications with it so you don't get osteoporosis.
Not actually an upgrade from 2 naproxen and shot of whiskey, and $9.5k per year more expensive.

Esmya is only used short term because it causes liver failure. Again, still less effective and expensive and even more damaging than booze and NSAIDS.

That's not progress.

[twoeleven]

I'm really sorry that you're in pain. I'm sorry the best we've been able to come up with for pain management treatment on the market is so expensive. That's the American "medical system" for you. Getting drugs developed, tested, and on the market is a huge, complicated undertaking. It shouldn't be dismissed because some Chief Greedy Officer decided they needed a bigger paycheck.

Whether it's "progress" over an OTC pain-relief combination that occasionally kills people is another question, but I'm waiting for a professional opinion on the drugs' benefits vs their side effect profiles, so I'm not gonna say anything about it.

Those are just two on-the-market drugs from one paper, not all the papers I found. There's over 8,700 papers on endometriosis treatment in the last ten years, of which 1,800 are review articles of one sort or another. It seems people are very actively trying to study and treat your disease.

For some reason, I've become very sensitive to people who just make up facts. So the difference between 8,700 papers and two drugs, however flawed, and jack shit, no studies, and no developments gets on my nerves. Your misrepresentation of all that effort has set off another round of misguided misandry. That's just pissing me off.

So, could you try something like the truth: the drugs have too many drawbacks for you to take them, but it's not for want of trying? Thanks!

[threemeninaboat]

Dude. This is my blog. Like I care if I get on your nerves or your "idea" of the truth. Fuck off. You have NEVER been treated by an OBGYN and make flippant statements like I could obtain European drugs. Or that I could obtain any of these drugs. Look at the other women in this thread who have also experienced NO PROGRESS IN THE TREATMENT OF THIS DISEASE for 20 years.

You are being disrespectful.

[twoeleven]

It was as respectful as I could make it while raising an objection. Since I seem to have failed, sorry.

[twoeleven]

Heh, that's probably backwards: I thought it was respectful, and I'd rewritten the objection repeatedly to make it so. Doesn't matter, I suppose. I wrote it, it didn't succeed at my intent, so it's my bad.

[rebeccmeister]

Sympathies for the recurrence of the atrocious pain; glad to know that alcohol can help at least somewhat.

I hate how medical research and progress are biased by profit and sexism.

[threemeninaboat]

And we lose so much in the country as OBGYNs are not allowed to practice.

[malterre]

So sorry you are in pain and that Doctors and that some things seem stuck in time because they don't inconvenience white men.

[favoritebean]

Mine is scarring my colon, but my doctor just shrugged and told me to continue bcp. My gyn retired unexpectedly, and I still don’t have answers.

Can you share what you know?

Also, I do a cocktail about five days a week, because I`m in a lot of pain otherwise. Manhattans are good.

[threemeninaboat]

JFC. You need an endometriosis surgeon. Mine is somehow still alive and practicing! He has some links to affiliated organizations so you can find one in your area.
https://www.denverfertilitycare.com/services/endometriosis/

Manhattans are good!

[mellowtigger]

I'm sorry, for all of it. (I still wear my rose-tinted glasses for an AI-heavy future, where research is rationally decided based on how great an improvement it can make in human lives, not how much profit is in it or how it supports the existing power structure.) I hope you find some relief soon.

[andrewducker]

I'm so sorry. I hope that at some point it gets the attention it deserves!

[ivy]

Come visit me to get your ship fix (even if it's temporary)!

UGH, to endo bullshit. Best of luck finding a good surgeon.

[fbhjr]

I hope they can get your another 21 or more.

[sistawendy]

Next step is opiates and finding a surgeon.

Oy!