naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
[personal profile] naamah_darling
CW: pregnancy, miscarriage, other uterine antics.

So I've known for a while that I had Asherman Syndrome, where the inside of my uterus was covered in scar tissue.

And that answers, maybe, one of the questions I had -- why endometriosis?  Well, I read the other day that sometimes AS can cause it.  If the AS was bad enough to seal off a pocket of my uterus, isolating some endometrial tissue and preventing it from exiting through the cervix as it should, it would have flowed back out of the fallopian tube and carrying that tissue into my abdominal cavity where it could then set up shop and start ruining things.  Given that, when I tried to have the Essure implants placed, Dr. Thundercunt couldn't even see the opening to one of my tubes, this seems pretty plausible to me.

But there's a question I have that I forgot to ask the doctor about, and it's nagging at me because I've never had an answer for it.  Why did I develop Asherman Syndrome at all?

Endometriosis can cause scarring both outside and inside the uterus.  So that may answer how the scar tissue got there.  Maybe it's the opposite of my theory above.

But uterine scarring also usually causes lighter periods, which is not a problem I ever had.  I had medium to very heavy ones, often for much longer than a week and sometimes continually for months.  I initially spent something like a year and a half bleeding because I didn't want to have to go to the doctor for it, and it continued off and on for years -- right up until I got fitted with an IUD six or seven years ago.

What caused the initial heavy bleeding?  

Was the fact that I ignored it for over a year why I developed scarring?

Did I have a miscarriage that went awry somehow?  I might have been pregnant after the first time I had sex.  The likelihood of it is higher based on the fact that there was no birth control involved except for him pulling out.  But it's also lower, given that I was on my period at the time.  But I remember sometime right around then I passed . . . something.  Kind of like a blood clot -- big enough that I remember it still, after all these years.  It was the size of . . . I don't know, a largeish bantam chicken egg.  I don't remember if it was before or after.  I want to say after, but I don't remember it clearly enough.  It could well have been before.  But if that's what it was, could it have led to some sort of low-grade infection that then led to scarring?

My mother had tremendous problems, herself.  Multiple miscarriages between having my sister and I.  And every other uterus-bearing person in my immediate family has had problems.  Endometriosis, PCOS, undiagnosed horribleness, whatever, always something.  So maybe it's just an inherited inevitability. 

How does my thyroid play into all of this?  What about the recurrent nabothian cysts I was having all over the place, where did those little shits come from?

Googling for all of this is a terrible pain.  Especially the Asherman Syndrome.  Almost all the information on AS is about infertility, and is geared toward fixing it enough so that people who want to can carry babies to term.  Finding information about whether miscarriages cause AS versus the other way around has proven nigh impossible.

I'm truly grateful I'm not navigating these questions in that context.  I feel genuinely terrible for people that are in that position and I'm glad that there are so many communities out there helping share what little information there is and supporting people through their journeys.  I'm not wishing that information to be less available, but I do wish that the information I dig up on every single issue a person can have with their uterus didn't focus on its effects on fertility . . . to the point where other information is sometimes not even presented.  As if, in the absence of a negative effect on pregnancy, people won't still want answers.

If I had been told that Asherman Syndrome can lead to endometriosis, I would have looked into the issue years sooner.  Unfortunately, Dr. Thundercunt, who discovered I had it, refused to talk to me about it after she booted me out of her clinic for swearing and having a panic attack, so I never had a chance to learn this from her, and none of the information I was able to dig up online at the time mentioned it.  (See: the aforementioned focus on fertility, to the exclusion of all other effects of a condition.)

I'm going to take a close look at my records once I get them and see what they found during pathology.  Maybe that will answer a little of it.  Or maybe it will just give me more to wonder about.

I realize it's of minimal impact given that the organs in question are ashes in a landfill by now and I'm not suffering psychological upset from losing them -- quite the opposite, frankly.  I know it's not really materially important that I have these answers.  But I've had such trouble with it my whole life that I can't help but wonder.  What started it?  Could it have been prevented?  At what point could it have been diagnosed, if my doctors had been worth a damn and I hadn't been so fucking put off by their treatment of me?  (Given what I endured, I can't blame myself for not trying harder for answers.)

Otherwise, I'm doing well.  Hormone replacement seems to be working just as it should.  No pain for days now, though I'm still sticking to my lift limit when I can.  I just want to be sure, you know?

I'm happy with where this has gone.  Really happy.  But I'm always going to wonder what the fuck was wrong with the goddamn thing.

Date: 2016-12-03 10:20 am (UTC)
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
From: [personal profile] kaberett
(Retrograde menstrual flow is noooooooooot a generally-accepted theory for the epidemiology of endometriosis; causative factors are Really Not Well Understood.) but HURRAH for treatment that seems to be working.

Date: 2016-12-03 10:41 am (UTC)
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
From: [personal profile] kaberett
It's been around since the eighties but nobody really believes in it, as far as I can tell -- it's one of those things where people go "ehhhh maybe probably best to not use menstrual cups Just In Case" but as far as I can tell there's no solid evidence that it's actually implicated, not least because (a) people who use sanitary towels while sleeping will also exhibit retrograde menstruation, and that's very large population that doesn't have endometriosis; (b) endometriosis can arise in cis men being treated for prostate cancer with oestrogens; (c) it can also occasionally show up IN THE LUNGS, for crying out loud, which "retrograde menstruation" definitely doesn't explain.

So yeah, you don't see much about it because it's... not really got anything remotely resembling a solid evidence base, it's just nobody's come up with a better idea yet.

(Context: I have severe endometriosis and I'm an expert patient with occasional bouts of Autistic Special Interest in my various conditions; I'm also a PhD student in the physical sciences, which is not biology or pathology or medicine but I've read a hell of a lot of the literature for fun.)

Date: 2016-12-03 10:45 am (UTC)
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
From: [personal profile] kaberett
http://www.fertstert.org/article/S0015-0282%2812%2900682-6/fulltext looks like a good recent free review, on skimming

Date: 2016-12-03 10:47 am (UTC)
kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)
From: [personal profile] kaberett
okay wow no it's actually been a theory since the 1920s

Date: 2016-12-03 02:49 am (UTC)
ashbet: (Abigor)
From: [personal profile] ashbet
Interesting -- I was full of scar tissue (endometriosis, adenomyosis, scarring of the uterine lining), but no doctor ever mentioned Asherman's to me.

(FWIW, I bled all the goddamn time, too, and sometimes passed large clots with no possibility of pregnancy -- and I had tons of medical interventions, good insurance, and no GYN-specific medical trauma to deal with... and none of it made the slightest bit of difference.)

Obviously, we don't have the exact same medical history, but maybe this will take a little bit of sting out of wondering whether seeing a doctor earlier might have slowed down/prevented the progression and need for surgery.

It's possible that you passed a fibroid -- they aren't always anchored very deeply.

But, yeah. It really sucks that you're seeking important medical info, and all you can find is how this affects pregnancy :/

*hugs*

-- A <3

Date: 2016-12-03 02:55 am (UTC)
From: [identity profile] naamah-darling.livejournal.com
I would have gotten the surgery eventually anyway, I know that much, and as it was pretty much effortless (thank god) I feel good about having had it done. So there's that at least. It would have ended like this even with effective and early treatment. In a way I guess I'm KIND of glad they weren't more aggressive about that . . . I haven't had to put up with doctor after doctor trying to preserve my fertility, which would have made me very, very angry.

It just might have ended *sooner* and saved me a few years of frustration.

Although honestly I don't think I would psychologically have been in a good enough place to do it until this year. I'm in a much better place now and have been able to work on old trauma issues, and that's made me able to do this.

Thank you again for the belly bands and the binder. That made the first few nights sleeping way more comfortable!

Date: 2016-12-03 03:03 am (UTC)
From: [identity profile] naamah-darling.livejournal.com
TW DISGUSTING

Fibroid. Interesting! That hadn't occurred to me. I was VERY young, just 14, but I guess there's no age limit on that shit. I was old enough to have periods, I was old enough to have shit go wrong. It looked . . . not like a clot. It looked like red meat AND clotted blood, all wadded up, and was quite compact/solid. I really should have picked it apart -- and would gleefully do so now -- but I was so revolted and so afraid of what I might find (visions of teeth and human hair flashed through my head) I flushed it down the toilet AT ONCE.

I had one doctor tell me she could feel a fibroid in there six or eight years back, but no follow up ever mentioned it, not once, and it wasn't caught on the TWO ultrasounds I had, so I guess it broke down or went away or . . . whatever it is they do. OR maybe subsequent exams just missed it and that was the benign mass they found in there during pathology. I am looking forward to getting my records to learn more about that.

Date: 2016-12-03 06:09 am (UTC)
From: [identity profile] bat-cheva.livejournal.com
Do you remember how long after you first had sex that you passed the clot? Because even at four week I don't think you would have noticed anything out of the ordinary. Millions of women a year don't notice it.

Date: 2016-12-03 07:04 am (UTC)
From: [identity profile] naamah-darling.livejournal.com
I don't. But I think it was before school started back up, which would be ~1-2 months. It was SO long ago and I destroyed the only journal I kept at that time.

Looking at pictures of 1 month miscarriages, that's too small, but 2 months looks plausible.

I don't necessarily think that's what it was? I feel like I'm reaching? But it COULD have been? I don't know. It's just frustrating in an abstract sort of way not knowing. You know?

Date: 2016-12-03 07:22 am (UTC)
From: [identity profile] bat-cheva.livejournal.com
Oooooh yeah, I totally understand about the not knowing. I'd so love to know what caused my own uterine fuck-uppery. I'm right there with you. *hugs*

Date: 2016-12-03 11:38 am (UTC)
From: [identity profile] songblaze.livejournal.com
So I did some poking about on the causes of Asherman Syndrome for you.

It seems there is a theoretical chance that IF you had a miscarriage and happened to have a particularly deeply rooted placenta, and it caused an injury to the wall of the womb, then there is some minute chance that could have been the cause. However, it's all theoretical and no one has definitely seen that as a cause as far as I can find. Generally speaking, it's caused by one of two things: an injury to the uterus (typically caused by D&C or other surgery) or an infection in the uterus.

I can't help but wonder if the big clot thingie was a sign of an infection rather than a miscarriage. If that's the case, that could be your cause right there. Pelvic Inflammatory Disease is a known cause of Asherman's and is known to be sexually transmitted.

If you want my guess, you got an infection at some point and managed to clear it before you got STD testing but not until it had injured your uterus. Injured uterus developed Asherman Syndrome. Asherman Syndrome caused retrograde menstruation, backed your menstrual materials up your fallopian tube(s?), and that caused the endo. Alternatively, the injury to the uterus caused both the Asherman and the endo as your body's attempts at healing just went haywire.

Date: 2016-12-03 11:40 am (UTC)
From: [identity profile] songblaze.livejournal.com
...I should note, I'm pulling this together after reading over a dozen websites for info, so I can't point you at exactly where I picked those bits up at this point. I can try to retrace my steps tomorrow, but for right now I'm finishing reading people's LJs and going to bed, because I have an optometrist's appointment tomorrow.

Date: 2016-12-04 01:29 am (UTC)
From: [identity profile] naamah-darling.livejournal.com
Yeah, I've never had a D&C or any other surgery that might have caused it, and if it was an infection, I cleared it with essentially no sign of it ever having been there. It seems like a plausible theory, just mystifying that I would have missed it entirely.

Date: 2016-12-05 09:10 am (UTC)
From: [identity profile] songblaze.livejournal.com
I assumed you would have mentioned it if you had.

Incidentally, Pelvic Inflammatory Disease could have caused the extreme periods, too. It can be caused by a number of STDS, some of which can be cleared by the immune system on its own (though of course it is a risky course to take and much safer to get treatment). I think that is the simplest answer for your collection of data, but hell if I know whether it's the right one or even statistically likely.

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naamah_darling: The right-side canines of a wolf's skull; the upper canine is made of gold. (Default)
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