Discover and read the best of Twitter Threads about #endometriosis

Most recents (24)

I don’t do a lot of #endometriosis advocacy but I realize there are still tons of poorly informed doctors out telling scared women that their pain isn’t real and that birth control and hysterectomy cures #endo. Here is a thread of resources:
CW medical diet, surgery, reproductive health. Some of the links may be affiliate links. It means that if you buy something I may be compensated at no extra cost to you. If you want to directly compensate me for this resource 👇…
Vaginal contact, tampons, medical exams, sex are not supposed to hurt. Periods are not supposed to feel like you’re dying. If your doctors are not taking your pain seriously there are steps you can take to get better care. It might be hard but you are worth it. #EndEndo
Read 22 tweets
In honor of Endometriosis awareness month I’m shedding light on a disease that affects more than 10% of women around the world.
Not many people know but in February of 2020 I was diagnosed with stage 4 endometriosis after years of suffering and doctors dismissing my concerns. Before I was diagnosed I didn’t know anyone with this condition
This past February, I had my second laparoscopy surgery and through it all I thank God and am super appreciative of all the support I received from friends and family during my recovery process.
#endometriosis #endo #endometriosisawareness
Read 14 tweets
Me taking my meds.

13 yr old son, "Mom, dang you take a lot of pills. Why? *pinball machine subject change* Turning Red was so embarrassing. Talking about period stuff for girls and middle school drama -cringe."

Me, "Get in the van you're coming with me to run errands." 1/
Him, "Ugh, ok."

Me, "I need you to know WHY I'm going to tell you these things. I want you to 1 -be a better man, 2 - be a good partner if you marry a woman, 3 - be a good dad, and 4 - be more understanding of the world in general."

Him, "Huh?" 2/
Me, "Do you think the reason Turning Red felt awkward was that it was dealing with subjects that aren't openly talked about without embarrassment?"

Him, "Yeah, probably."

Me, "The awkward subject you mentioned is partly why I take so many pills." 3/
Read 8 tweets
In honor of #EndometriosisAwarenessMonth: This is for the #MedTwitter community - especially #OBGYNTwitter - with the hope that it will help at least 1 future endo patient have a better experience than I did. A long 🧵: 1/?
3 weeks ago, I had an 8+ hours-long endo excision surgery that resulted in a unilateral #salpingectomy, an #appendectomy, & a partial #BowelResection. The thing is, it didn’t have to be this way. 2/?
I’ve had horribly painful periods since I was a teenager. Doctor said it was normal, just start taking ibuprofen a couple days early. By 18yo, oral contraceptives were recommended to manage it. That ‘worked’ for about 10 years? 3/?
Read 14 tweets
1/ Un 🧶 sur ce nouveau #test sur l'#endométriose.

Malheureusement pour les #femmes qui en souffrent, ceci relève plus du #marketing que de la #science.

PS : Étonnant que @libe reprenne ça tel quel (@OSS117_Helsinki est moins naif). @CheckNewsfr ?…
2/ Ce #test repose sur 2 études parues dans des journaux du groupe #MDPI, souvent considéré comme #prédateur.

Si vous ne connaissez pas la biomédecine, le principal obstacle pour y publier un article est de payer (en l'occurrence, 2280 €).…
3/ Même en ignorant la médiocre réputation de l'éditeur, l'article sur lequel repose le test a 3 soucis :

A) les résultats sont très peu détaillés 🕵️‍♀️

B) les conclusions sont exagérées 🤑

C) les auteurs semblent avoir dissimulé un biais majeur 👮‍♀️…
Read 12 tweets
I spoke with @andreagilligan @LunchtimeLiveNT You can hear @MarianHarkin and I follow (1pm)
#Endometriosis is a subject I am passionate about, I have lived with it for 33 years. I am still seeing the same failures as when I fought for my own diagnosis.$d…
It is time to change this, I have seen too many people hurt, damaged, lose their fertility, their organs, their quality of life. We need to reduce the diagnostic delay. Disruptive research and technology like @CailinAI play a role to lead people to effective surgery earlier.
Appropriate education of both the public (through school level programmes) and healthcare professionals (all HCPs) is required. A massive campaign worldwide.
Read 12 tweets
#Endometriosis is now considered a systemic disease rather than a disease predominantly affecting the pelvis. Endometriosis affects metabolism in liver & adipose tissue, leads to systemic inflammation, & alters gene expression in the brain..."…
#Endometriosis affects 5–10% of women of reproductive age...Despite this high prevalence, disease recognition is inadequate & diagnosis time ranges
from 4 to 11 years, with 65% of women being initially
misdiagnosed." 65%!! /2
"Women often report having difficulty articulating their symptoms or feeling that their symptoms are INAPPROPRIATELY NORMALISED." #Endometriosis /3
Read 15 tweets
Autistic Women & medical conditions thread 🧵 RE: Common #Medical symptoms and conditions in #autisticgirls #autisticwomen
By @sbaroncohen et. al I feel this research study has implication on #autisticgirls #gender #ROGD #trans #detrans In my #Autism clinic it has
been common to hear about #puberty #Dysphoria
Menstrual problems, #PMDD #PCOS & #endometriosis What is really nice for clinicians is when we see research that backs up our clinical work. In consideration Of #gender distress #dysphoria #ROGD we should be considering this research ImageImageImage
In making clinical decisions that impact #autisticgirls #autisticwomen with #ROGD #trans #detrans This July 2021 study looked at common medical conditions in #autistic females.
For some time, researchers have been investigating #sexbias in #autism diagnosis. #Medical
Read 18 tweets
This 30ish woman of mean height has a recurrent right spontaneous #PTX 18 months after the first. She has a history of thoracic pain receiving spinal steroid injections; o/w healthy. The best way to get the #diagnosis is (poll next) Image
The best way to get the diagnosis is:
Read 12 tweets

First, read @ShawnteJamesMD’s whole thread.

It’s informative and moving…

Second, this thread especially grabbed my attention coming on the heels of yesterday’s @NIH_ORWH virtual conference on gaps in research about the health needs most particular to women…
🧵3/ One of the most stunning (and maddening?!) slides was a #dataviz that used analysis from this paper:…
Read 9 tweets
The real reason accepting my #ADHD diagnosis was so difficult is because I already have very severe #endometriosis causing nerve issues eg mobility is affected, and also depression and anxiety. I guess I pushed it aside because I don't want to be seen as even more disabled.
And that's a product of living in an ableist society. People make it hard for us because they stigmatise us. Because of my severe endometriosis and nerve issues, my last employer tried to declare me "incapacitated" and tried to keep others from hiring me based on my health.
People push disabled people out of society because they don't see us as valuable when societies main thing is being a capitalist society. Disabled people to the world seem like liabilities. Like we can't provide the same kinda labour to the world. And that's ridiculous.
Read 5 tweets
I sometimes don't know how many are aware of the scope of the situation of "cash pay" surgeons in the US. It's not just gender. It's orthopedics. It's general surgery. It's #endometriosis. Peripheral nerve & even neurosurgeons. An industry of surgeons who don't take insurance.
It's not just gender communities online, there are communities (cough...endo...cough rare spinal cord issues no local doctors will verify...are they even there?) that encourage & pressure people to travel for surgeries that cost upwards of $40k. Sometimes more.
I don't bring this up here much as I want this brought to an end and best to not mix it with gender rants, but it's a problem.

Also: the same almost religious reverence for the surgeons and procedures is present in most of these groups. Bad outcomes? Heresy.
Read 6 tweets
10 common causes of heavy menstrual flow you should know

1. Fibroids
2. Pelvic infections
3. Some drugs
4. Polyps
5. IUCDs
6. Endometriosis
7. Adenomyosis
8. Blood clotting problems
9. Cancers of the womb or cervix
10. Thyroid disease

A thread 🧵

{Share to who needs this!}
If a woman loses more than 80ml of blood in one period, the bleeding is heavy. Heavy periods usually often come with blood clots.

Although methods of quantifying the exact amount of blood loss are not usually accurate, most women know when their period is heavy.
Nearly 20% of women over 30 years have #fibroids.They are of different types & may cause heavy menstrual bleeding.

Treatment of fibroids depends on the many factors so see your doctor.
Read 15 tweets
Addressing #stigma: If you are my friend or colleague, regardless of gender, you get to know my ovaries whether you want to or not. I’m a woman with #endometriosis & #fibroid #menstrualhealth pain. Instead of seeming “flaky” I will tell you my #womenshealth reason I must cancel.
This is also a generational thing. Boomers and some GenX were “I am as tough as a guy... ovaries.. what ovaries?”

Me: “I have ovaries. They are complicated suckers. We’ll have to work around them.”

#endometriosis #fibroid #womenshealth #menstrualhealth…
One of the things that made me 🥰is when a MAN reached out to me, because I tweet on this, for his female significant other to ask if I had resources to help her

If you hear of me being “anti-woman” I am anti-#professionalism (women) who suppress open uncomfortable communication
Read 9 tweets
Uteri owners have it hard.
Ouch. Ouch. Ouch.
#endometriosis #fibroids #womenshealth #menstrualhealth
On a positive note. I did not pass out or almost pass out this month. 👍Last two months my mom was newly in the ICU then she had newly passed away and I could not get out of bed without syncope or near syncope. And I had just had my 2nd vaccine so was already not well.
There are all these wise people who say things about suffering but it’s honestly true..

..that the more suffering you experience the more gratitude you can have..

..because when something is not as bad as it used to be do you feel immense relief, #gratitude
Read 4 tweets
I state, highlight, mark up, not insinuate
Why is someone who likely does not menstruate a sudden expert on #womenshealth to identify a WOC seeking #data #quality & #integrity as the women?
"Respecting" social science = using respectable methods, not online surveys.
What you see in the tweet and the "study" is ego, defensiveness & flagrant Dunning-Kruger effect for #womenshealth, #menstrualhealth, #COVID19, #vaccine #research.

The best way to demonstrate the value of a field is to be consistent on #quality not…
Academic language on #online #survey #data:
"systematically assess carelessness in a crowdsourced sample" Denial that quick & dirty is poor #quality is an odd use of time & ineffective. One could better defend one's merit, by delivering #quality per best practices and standards.
Read 35 tweets
If you study #vaccine + #sideeffect... you automatically cross into #healthcare & #medicine regardless of what other label applied

I'm a #vaccineswork #vaccinessavelives #pediatrician & #tweetiatrician careful on #data #quality particularly for women, WOC, POC

This is my lane
Every seeming kind of "not a big deal" thing related to #vaccineswork blows up in our faces like death threats via online mobs against #pediatrician #SciComm

May seem extreme but take a look at the escalation of responses to my identifying "bad #data"…
We can't wait for yet more false "vaccines affect (THEY DO NOT) fertility" trope to circulate

anyone who is generating data on #vaccine "#sideeffects" needs to think about clean, quality, meaningful data. Junk data: common, but this actually matters…
Read 9 tweets
Peak Twitter. Woman w/ stage 4 #endometriosis, #fibroids, latter condition more common in WOC, post 2 gyn surgeries

identifies online #womenshealth #vaccine #survey as poor #data #quality

instead of improving, response ~ "not to attack... but am glad you are not my doctor"
Indeed, I engage patients & families 1:1 without forcing them into fields I've pre-created for my #data collection, based on assumptions I have from personal experience

Respecting women & WOC allows people to not be forced into leading questions or pre-created fields
Measuring needs to be #quality to deliver quality. Your #results will never be better than your #studydesign or collection methods. Wrote this cuz we need less measurement & more humanity. I'm in b-school & everyone sends a new survey every 30 sec..…
Read 7 tweets
New bill alert! @SuzeMorrison & I just tabled a bill in the Legislature to formally recognize March as #EndometriosisAwarenessMonth in Ontario.
Read on to learn why it's so important. 🧵1/4 Image
Endometriosis is very common but rarely discussed.
1 in 10 women, Trans, non-binary and gender diverse menstruators of reproductive age have endometriosis.
It causes terrible symptoms such as extreme pelvic pain and nausea. 2/4
But because of stigma associated with talking about what is a normal period and what is not, many menstruators suffer for years without diagnosis or treatment. And even if they do seek help, they can find their concerns ignored. We need this to change, now! 3/4
Read 4 tweets
Q: What is endometriosis?

A: #Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus, causing pain and/or infertility

More: Image
Symptoms associated with #endometriosis vary - including a combination of:
🚺 painful periods
🚺 chronic pelvic pain
🚺 pain during and/or after sex
🚺 painful bowel movements
🚺 painful urination
🚺 fatigue
🚺 depression or anxiety
🚺 abdominal bloating & nausea Image
Read 9 tweets
Am grateful my #endometriosis and #fibroids only affects me severely one day a cycle and is not severe every cycle. Still that one day can make me unable to get out of bed or sit up without passing out. Severity worsens with stress.

Today I feel have my life back. Thank God.
Mind you, my definition of severe is “I pass out from pain.” I don’t know if it is really a good thing I self suppress so well that I don’t even feel or react to pain until it threatens my ability to stay conscious. I don’t glamorize “grit” that is a lack of self compassion
It is an accommodation to the pathology in the world we live that was apparent with the events this week. 6 Asian women killed but the compassion was for the killer who “had a bad day” by authorities while the women were mislabeled as sex workers to validate their deaths.
Read 31 tweets
Hoy 14 de marzo es el #DiaMundialdelaEnfometriosis, una enfermedad que sufren en silencio el 10-15% de las mujeres y que afecta no solo a su salud física, sino también a su salud mental.
Pero, ¿por qué apenas se sabe nada de esta enfermedad? Dentro 🧶👇🏻…
1️⃣Afecta exclusivamente a mujeres, ya que está relacionada con el aparato reproductor. De hecho, ha estado ligada a los dolores menstruales, provocando que tanto pacientes como especialistas hayan llegado a normalizar el dolor, a veces incapacitante, que sufren estás pacientes.
2️⃣Es una enfermedad sistemáticamente ignorada por nuestro sistema de salud. Las pacientes de #endometriosis tardan una media de 7 años en ser diagnosticadas, aunque en muchas CCAA el diagnóstico se queda en eso, ya que no se les hace seguimiento alguno.
@sanidadgob @SanidadCLM
Read 14 tweets
I know some women with #Endometriosis have had bad experiences with male OB-GYNs, but it was a male physician who finally suspected endometriosis when I ended up in the emergency room in so much pain. The several women OB-GYNs I had seen prior did not take my pain seriously. /1
I saw my first female OB-GYN not long after I started menstruating, because I was in enormous amounts of pain every time I had my period, curled up in the fetal position, unable to function, missing school. I was told this was "normal" and given anaprox. /2
Anaprox didn't help much. I'd end up spending hours in a hot bath in a vain attempt to control the pain. My periods were also extremely heavy and very irregular. I was told that was "normal" - things would settle down in time. The first OB-GYN I had seen then retired. /3
Read 14 tweets

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