Read on Twitter
[Medical BS, gyn care]
Hey so I know lots of people have super bad periods but have trouble getting a doctor to do anything about it
Wrote a short thread explaining how I got my yeeterus in the hope that it helps someone else navigate care https://twitter.com/UntoNuggan/status/1294405306299158529
Hey so I know lots of people have super bad periods but have trouble getting a doctor to do anything about it
Wrote a short thread explaining how I got my yeeterus in the hope that it helps someone else navigate care https://twitter.com/UntoNuggan/status/1294405306299158529
[Medical BS, gyn care]
Also I'm not going to pretend that this strategy will work for everyone, and obviously other factors can affect your care (like race, class, insurance status, being visibly trans, etc)
Also I'm not going to pretend that this strategy will work for everyone, and obviously other factors can affect your care (like race, class, insurance status, being visibly trans, etc)
[Medical BS, gyn care]
Also, it took me three years of basically focusing all my energy for medical stuff on figuring out what to do about my awful periods
And it was like...an additional ocean of medical trauma just from that. (The dysphoria did not help.)
Also, it took me three years of basically focusing all my energy for medical stuff on figuring out what to do about my awful periods
And it was like...an additional ocean of medical trauma just from that. (The dysphoria did not help.)
[Medical BS, gyn care]
One thing that really seemed to affect my care is that when I'm in a lot of pain, I basically dissociate and I have a "flat affect" (no expression), so a lot of doctors I saw didn't believe me when I tried to explain how much pain I was in
One thing that really seemed to affect my care is that when I'm in a lot of pain, I basically dissociate and I have a "flat affect" (no expression), so a lot of doctors I saw didn't believe me when I tried to explain how much pain I was in
[Medical BS, gyn care, PTSD, SA]
I tried to explain that I'm a trauma survivor to one (former) doctor, and I think she got upset like i was trying to tell her how to do her job and it did not go well. At all. Unfortunately.
YMMV.
I tried to explain that I'm a trauma survivor to one (former) doctor, and I think she got upset like i was trying to tell her how to do her job and it did not go well. At all. Unfortunately.
YMMV.
[Medical BS, gyn care]
I think it helped that I did pelvic floor PT and lucked into a good PT, because then I had independent corroboration that I was in a lot of pain
(Also, at this point, urinary incontinence)
I think it helped that I did pelvic floor PT and lucked into a good PT, because then I had independent corroboration that I was in a lot of pain
(Also, at this point, urinary incontinence)
[Medical BS, gyn care]
One thing I did learn from a former friend who was an EMT is that doctors look for "tripod-ing" in people with abdominal pain
i.e., not standing up straight but resting your hands on your thighs
One thing I did learn from a former friend who was an EMT is that doctors look for "tripod-ing" in people with abdominal pain
i.e., not standing up straight but resting your hands on your thighs
[Medical BS, gyn care]
I did try this once when my doctor told me to go to the ER and I could barely talk
Pros: they rushed me back pretty quickly (to a bed in a hallway)
Cons: nothing on imaging, zero pain meds or help
I did try this once when my doctor told me to go to the ER and I could barely talk
Pros: they rushed me back pretty quickly (to a bed in a hallway)
Cons: nothing on imaging, zero pain meds or help
[Medical BS, gyn care]
Honestly, I started asking for a hysterectomy when I was 20, and I probably wouldn't have fought through all the gatekeeping and trauma to get the care I needed if I hadn't hit 10/10 pain for 2-3 weeks every month
The medical system is very broken
Honestly, I started asking for a hysterectomy when I was 20, and I probably wouldn't have fought through all the gatekeeping and trauma to get the care I needed if I hadn't hit 10/10 pain for 2-3 weeks every month
The medical system is very broken
[Medical BS, gyn care]
Also, if anyone is in the DC area and wants the name of my current gyn, feel free to DM me. Her office is basically all WOC and her (a white woman who specializes in hysterectomies, among other things). Fair warning, they book up 3+ months in advance
Also, if anyone is in the DC area and wants the name of my current gyn, feel free to DM me. Her office is basically all WOC and her (a white woman who specializes in hysterectomies, among other things). Fair warning, they book up 3+ months in advance
[Medical BS, gyn care]
Also: the surgery really helped me, like, A Lot.
(Details below in case anyone needs to skip it because feels)
Also: the surgery really helped me, like, A Lot.
(Details below in case anyone needs to skip it because feels)
[Medical BS, gyn care, thoughts of suicide]
Firstly, I used to know when my period was coming because I got basically instant intrusive suicidal thoughts, which would end once my period started
At the time, I was diagnosed with PMDD
CN: cissexism https://womensmentalhealth.org/
Firstly, I used to know when my period was coming because I got basically instant intrusive suicidal thoughts, which would end once my period started
At the time, I was diagnosed with PMDD
CN: cissexism https://womensmentalhealth.org/
[Medical BS, gyn care]
Taking progesterone during my luteal phase helped, but also I'm pretty sure contributed to joint laxity
(Note: Mirena is less likely to do this because the hormones are localized)
Note: there is not enough research on this https://www.hypermobility.org/hormones-and-hypermobility
Taking progesterone during my luteal phase helped, but also I'm pretty sure contributed to joint laxity
(Note: Mirena is less likely to do this because the hormones are localized)
Note: there is not enough research on this https://www.hypermobility.org/hormones-and-hypermobility
[Medical BS, gyn care]
Additionally, I later learned that pharmaceutical companies helped create the diagnostic criteria for PMDD, and influenced the whole "SSRIs are the first line of treatment" thing
TBH I still don't know what I feel about this https://www.minnpost.com/second-opinion/2016/11/how-premenstrual-dysphoric-disorder-was-defined-and-marketed-drug-makers/
Additionally, I later learned that pharmaceutical companies helped create the diagnostic criteria for PMDD, and influenced the whole "SSRIs are the first line of treatment" thing
TBH I still don't know what I feel about this https://www.minnpost.com/second-opinion/2016/11/how-premenstrual-dysphoric-disorder-was-defined-and-marketed-drug-makers/
[Medical BS, gyn care]
Other patients (maybe @Asher_Wolf ?) have suggested that in some cases, PMDD is a psychiatric manifestation of MCAS
I also read a study (which I can't find) that suggests PMDD is basically having withdrawal symptoms from a drop in hormones
I don't know
Other patients (maybe @Asher_Wolf ?) have suggested that in some cases, PMDD is a psychiatric manifestation of MCAS
I also read a study (which I can't find) that suggests PMDD is basically having withdrawal symptoms from a drop in hormones
I don't know
[Medical BS, gyn care]
All I know is, removing my ovaries and taking a consistent dose of oral estrogen really helped me personally
Additionally, not having excruciating abdominal pain for over half my life helped too
All I know is, removing my ovaries and taking a consistent dose of oral estrogen really helped me personally
Additionally, not having excruciating abdominal pain for over half my life helped too
[Medical BS, gyn care, pain]
In particular, it really helped with two symptoms some Drs said could not possibly be related to my period:
- period shits so painful that I wanted to scream every time (I *think* this was stool pressing on a fibroid but
)
In particular, it really helped with two symptoms some Drs said could not possibly be related to my period:
- period shits so painful that I wanted to scream every time (I *think* this was stool pressing on a fibroid but
)
[Medical BS, gyn care, pain]
- this thing where I would get numbness, tingling, and pain radiating along my outer thigh from my hips to my knees.
Another friend also experienced this around Menstruation, and it stopped after my surgery.
- this thing where I would get numbness, tingling, and pain radiating along my outer thigh from my hips to my knees.
Another friend also experienced this around Menstruation, and it stopped after my surgery.
[Medical BS, gyn care]
Note that after my surgery, I still have lower back and abdominal pain
However, it was actually possible to diagnose them when I wasn't also dealing with adenomyosis
(For me, they were SI joint instability and MCAS, respectively)
Note that after my surgery, I still have lower back and abdominal pain
However, it was actually possible to diagnose them when I wasn't also dealing with adenomyosis
(For me, they were SI joint instability and MCAS, respectively)
[Medical BS, gyn care]
I also have a hypothesis that adenomyosis and EDS may be connected, but I don't have any research to back it up.
Here's why:
I also have a hypothesis that adenomyosis and EDS may be connected, but I don't have any research to back it up.
Here's why:
[gyn care]
Adenomyosis is when some of your uterine lining grows inside the muscle of your uterus wall, and then during your period your body tries to shed it but obviously there's nowhere to go because it's inside a muscle
Adenomyosis is when some of your uterine lining grows inside the muscle of your uterus wall, and then during your period your body tries to shed it but obviously there's nowhere to go because it's inside a muscle
[gyn care]
There is speculation that adenomyosis is basically advanced endometriosis
(Endometriosis = uterine lining grows elsewhere in your body and tries to shed, such as on non-reproductive organs)
There is speculation that adenomyosis is basically advanced endometriosis
(Endometriosis = uterine lining grows elsewhere in your body and tries to shed, such as on non-reproductive organs)
[Medical BS, gyn care]
Side note: I call adenomyosis Schrodinger's uterus, because last I checked there's no conclusive test other than removing one's uterus and basically dissecting it
This is (last I checked) also the only treatment
Side note: I call adenomyosis Schrodinger's uterus, because last I checked there's no conclusive test other than removing one's uterus and basically dissecting it
This is (last I checked) also the only treatment
[Medical BS, gyn care]
Sometimes adenomyosis will show up on a transvaginal ultrasound. In my case, it did not. My lab report also categorized it as "mild adenomyosis", which lolsob. But they also didn't think all the tiny cysts in my fallopian tubes were clinically significant
Sometimes adenomyosis will show up on a transvaginal ultrasound. In my case, it did not. My lab report also categorized it as "mild adenomyosis", which lolsob. But they also didn't think all the tiny cysts in my fallopian tubes were clinically significant
[gyn care]
Anyway, EDS causes fragile tissue. One way that can manifest is things like piezogenic papules, which are basically little balls of fat in your heels that poke through layers of tissue til they're visible when you put pressure on your feet.
Anyway, EDS causes fragile tissue. One way that can manifest is things like piezogenic papules, which are basically little balls of fat in your heels that poke through layers of tissue til they're visible when you put pressure on your feet.
[gyn care]
I can't remember the name, but IIRC there are some other benign cysts that can happen with EDS where fatty tissue ends up where it's not supposed to
I can't remember the name, but IIRC there are some other benign cysts that can happen with EDS where fatty tissue ends up where it's not supposed to
[gyn care]
So here's my (totally unproven) hypothesis: why can't adenomyosis in EDSers be because the tissue of our uterine wall is fragile, and endometrial tissue basically pokes through into the muscle, which heals around it
A la piezogenic papules
#EDS
So here's my (totally unproven) hypothesis: why can't adenomyosis in EDSers be because the tissue of our uterine wall is fragile, and endometrial tissue basically pokes through into the muscle, which heals around it
A la piezogenic papules
#EDS
[Medical BS, gyn care]
Additional EDS related note:
The surgeon who did my exploratory laproscopy was very confused, because there was a lot of damage to my peritoneal cavity that looked like endometriosis
But the biopsies were all negative for endometriosis
Additional EDS related note:
The surgeon who did my exploratory laproscopy was very confused, because there was a lot of damage to my peritoneal cavity that looked like endometriosis
But the biopsies were all negative for endometriosis
[Medical BS, gyn care]
This is another thing I don't have proof for, but I highly suspect that the damage he found was just "what happens to your peritoneal cavity when you have a connective tissue disorder"
I can't remember the exact wording, gonna look up the report
This is another thing I don't have proof for, but I highly suspect that the damage he found was just "what happens to your peritoneal cavity when you have a connective tissue disorder"
I can't remember the exact wording, gonna look up the report
[Medical BS, gyn care]
So the report for my exploratory laproscopy notes:
- powder burns on my peritoneal wall (basically, lesions that look like gunpowder residue typical in endometriosis)
- an Allen-Master's window (pockets/infoldings of the peritoneal wall)
So the report for my exploratory laproscopy notes:
- powder burns on my peritoneal wall (basically, lesions that look like gunpowder residue typical in endometriosis)
- an Allen-Master's window (pockets/infoldings of the peritoneal wall)
[Medical BS, gyn care]
- "white areas" on various organs (I asked for clarification on this and the surgeon told me to read the report, so)
- "white areas" on various organs (I asked for clarification on this and the surgeon told me to read the report, so
)
[Medical BS, gyn care]
Additionally, in the surgical report for my hysterectomy, my dr notes:
- I had a "boggy uterus" (i.e. flaccid, floppy, reduced muscle tone)
- "the peritoneum kind of bled easily with manipulation"
Additionally, in the surgical report for my hysterectomy, my dr notes:
- I had a "boggy uterus" (i.e. flaccid, floppy, reduced muscle tone)
- "the peritoneum kind of bled easily with manipulation"
[Medical BS, gyn care]
Now, a boggy uterus is consistent with adenomyosis, but I wonder if it could also be a symptom of a connective tissue disorder?
Additionally, my drs were puzzled by everything else I mentioned from the reports, particularly the easy bleeding
Now, a boggy uterus is consistent with adenomyosis, but I wonder if it could also be a symptom of a connective tissue disorder?
Additionally, my drs were puzzled by everything else I mentioned from the reports, particularly the easy bleeding
[Medical BS, gyn care]
So, MCAS is common with EDS, and mast cells can release heparin...which causes bleeding
So my (again unproven) hypothesis is that the surgery was a giant mast cell trigger, and that caused the unexpected bleeding
So, MCAS is common with EDS, and mast cells can release heparin...which causes bleeding
So my (again unproven) hypothesis is that the surgery was a giant mast cell trigger, and that caused the unexpected bleeding
[Medical BS, gyn care]
Additionally, all the other weird unexplained stuff from my report that looked like endo but wasn't
Could theoretically, IMHO, be explained by having a connective tissue disorder
Additionally, all the other weird unexplained stuff from my report that looked like endo but wasn't
Could theoretically, IMHO, be explained by having a connective tissue disorder
[Medical BS, gyn care]
But because these are all scientifically unproven, it meant that
1) my doctors didn't immediately refer me to a specialist in EDS
2) the geneticist I saw, AFAIK, didn't consider them in her diagnosis because they aren't an Official Symptom
But because these are all scientifically unproven, it meant that
1) my doctors didn't immediately refer me to a specialist in EDS
2) the geneticist I saw, AFAIK, didn't consider them in her diagnosis because they aren't an Official Symptom
[Medical BS, gyn care]
So I still don't have an Official EDS diagnosis, because I don't meet the 2017 diagnostic criteria
Not gonna get on my soapbox about the problems with those criteria, but. They have problems.
So I still don't have an Official EDS diagnosis, because I don't meet the 2017 diagnostic criteria
Not gonna get on my soapbox about the problems with those criteria, but. They have problems.
If you're reading this and don't know what MCAS is or mast cells or how they relate to EDS, here's a 101 https://twitter.com/UntoNuggan/status/1193288337022423040?s=19
If you want to know more about getting diagnosed with MCAS, here's a thread https://twitter.com/UntoNuggan/status/1228056628316057600?s=19
If you want to know more about getting a diagnosis for EDS, here's a post about that https://liminalnest.wordpress.com/2018/12/30/is-it-easy-to-get-diagnosed-with-eds/
Note: my plan is to make this into a blog post soon, so I humbly request that people not use those thread compilers that basically steal content
[Medical BS, gyn care]
Note: clarification about PMDD from @Asher_Wolf
(This is not medical advice, I am not a doctor, blah blah blah) https://twitter.com/Asher_Wolf/status/1294424027591663616?s=19
Note: clarification about PMDD from @Asher_Wolf
(This is not medical advice, I am not a doctor, blah blah blah) https://twitter.com/Asher_Wolf/status/1294424027591663616?s=19
[Medical BS, gyn care, sterilization]
Also, belated apologies for not including a TW for sterilization
I know that can be a fraught topic, particularly in Indigenous and Black communities (and also disabled communities) where forced sterilization is unfortunately still a thing
Also, belated apologies for not including a TW for sterilization
I know that can be a fraught topic, particularly in Indigenous and Black communities (and also disabled communities) where forced sterilization is unfortunately still a thing
[Medical BS, gyn care, sterilization]
I know that in my case, I absolutely wanted my reproductive organs gone
But there should absolutely be other alternatives for people who want to preserve fertility
And it *should* be my body, my choice, but so often...is not
I know that in my case, I absolutely wanted my reproductive organs gone
But there should absolutely be other alternatives for people who want to preserve fertility
And it *should* be my body, my choice, but so often...is not
Gonna go bury myself in Animal Crossing because this stuff is still hard to talk about
