Discover and read the best of Twitter Threads about #endometriosis

Most recents (24)

For almost 15 years #endo compromised my social, professional, personal life and mental health. I’m more than lucky to have found great professionals along my way, but it’s never over. It’s a daily struggle that has no cure #MoreThan1in10 @Endofound @SWHR #EndometriosisAwareness
In my case, #endo represents almost 15 years of fatigue, excessive bleeding, visits to the ER in the middle of the night, tons of painkillers, multiple failed treatments, thousands of $ spent and endless sleepless nights in pain #morethan1in10 @Endofound @SWHR
2022 was the year I went to my doctor’s office and told him I couldn’t it anymore, I needed stronger painkillers. His answer: “you’re already taking the strongest pain relievers, the next thing would be opioids and I won’t let you go there”. @SWHR @Endofound #morethan1in10
Read 12 tweets
I started am now in #perimenopause after losing both my ovaries to #Endometriosis

There is nothing that breaks me more than the thought of not being able to conceive and carry a child of my own in my uterus 👶🏽

This🧵is about navigating the new season which is a neglected topic
Our ovaries produce eggs for fertilization and also make the hormones (estrogen and progesterone) that play an important role in reproductive development and menstruation.

If, like me, you lose your ovaries early it increases our risk of osteoporosis and heart disease.
I now appreciate the role my ovaries played in contributing to the good quality of life. I didn’t have to worry about mood changes, vaginal and bladder problems, sexual function, fertility, hot flashes, sleep problems etc.
Read 10 tweets
#women with #endometriosis have a higher risk of #stroke

1. Endometriosis is a common cause of #pelvic #pain and is known to increase the risk of #coronary artery disease (CAD). A recent study looked at the association of endometriosis and stroke.
#MedTwitter #gynecologist
2. Women with laparoscopically confirmed endometriosis had a 34% greater risk of stroke as compared to those without a history of endometriosis.
3. Of the total association of endometriosis
with risk of stroke, the largest proportion was attributed to hysterectomy/oophorectomy (39% mediated) and hormone therapy (16% mediated).
Read 5 tweets
I can relate with the women sharing their stories #BelowTheBelt so many visits to the ER that I remember the number of times I felt dismissed because "it was normal" bring tears to my eyes...
I wonder whether an earlier diagnosis and treatment would have saved my ovaries...?
4 surgeries later and having lost my ovaries and any chance of conceiving naturally crushes me every day

The whole system is broken
Read 17 tweets
1/4
Q’s for your #endometriosis surgeon:
- Is Endo your primary specialism?
- Do you excise or ablate?
- How many surgeries do you do per year?
- How many complex surgeries do you do per year (incl bowel resection, thoracic etc)
- What are your complication rates?
2/4
- Do you have a multidisciplinary team?
-Do you record/take photos & can I have copies?
- What areas of the body do you check?
- Will you take tissue for biopsy?
- Is there any case where you wouldn’t remove Endo?
- If so do you refer to a surgeon with the right skill set?
3/4
- What is the after care & pain management plan?
- When will I have a follow up appointment?
Things to note. Expert excision is 🔑, ablation means no samples for pathology & is a poor technique (high recurrence), no surgery is better than bad surgery.
Read 4 tweets
🗣 “Why am I in so much pain? Why is no one listening to me?”

It took nearly two decades for Chetna Mistry to be diagnosed with #endometriosis. Charities are calling for more research into women’s health so others don’t suffer a similar experience.

nationalworld.com/health/woman-1…
When Chetna Mistry was in her early 20s, she started suffering from extremely painful periods.

She visited her GP, who told her it was normal. But the pain was so bad that she couldn’t go out with friends, struggled to survive a day at work, and frequently ended up bed-bound. Image
“I just wanted to know what was happening to me,” Chetna told @NationalWorld. “Why am I in so much pain? Why is no one else experiencing this? Why is no one listening to me?”

Chetna returned to her GP, and the solution was to trial her on contraceptive pills and painkillers. Image
Read 12 tweets
With all the recent media coverage of #endometriosis (which is much appreciated) there is a lot of misinformation which has potential for harm. My inbox is filling with dispair and hopelessness. While #endometriosis is a chronic condition, there is hope. Another 🧵 ImageImage
Excision surgery can remove the disease and improve quality of life and in some cases fertility. There is always a chance of recurrence (not quantified in the scientific literature) but it is lower than with ablation due to the meticulous removal of *all* disease.
Over 70% of women with #endometriosis will conceive. This figure may be higher with disease removal and assisted techniques such as IVF, donor egg, donor embryo etc.
Read 10 tweets
I've seen a few people ask why is #endometriosis on @rteliveline such a big deal?
Why has the conversation stirred up such emotion?
Why do we bother?
A wee thread 🧵
In Ireland, like the rest of the world, #endometriosis takes an average of 9 years to diagnose. Longer if you present under the age of 25 and if fertility is not an immediate concern. I've met many women who have been misdiagnosed for over 20 years.
During this time many are misdiagnosed with mental health issues, attention seeking, IBS, painful periods, cystitis etc
This costs both the individual and the health system time and money.
The healthcare deterioration in this time can be devastating to the woman.
Read 23 tweets
Some resources for #Endometriosis as have been asked a few times following @rteliveline coverage.

List of resources in this thread here threadreaderapp.com/thread/1490764…
Additional information on linktr.ee/Kathleen_m_king
Read 9 tweets
Lots of discussion about lack of advancement in women's health

Here is the thing. We will NOT advance reproductive/pregnancy/women's health science by continuing to do clinical trials that are NOT based on fundamental mechanisms that drive health & disease

hang on...🧵🧵🧵
1/
Let me explain:

Millions (millions)💲 have been spent to perform clinical trials to decrease adverse pregnancy outcomes such as #preeclampsia

Trials on Vitamin C, E, magnesium, aspirin, calcium

Perhaps, you might be thinking--those are pretty generic interventions 👀

2/
And you would be right. They are.

Vit C & E clinical trial was based on concept that there is evidence of oxidative stress in placentas from preeclamptic individuals

OK. Yes, but oxidative stress is a pretty ubiquitous biological event
3/
Read 11 tweets
I’m working on a piece that will expose an invisible epidemic that regular working class people know all to well. Media and society ignore it, because they don’t want to address the complex, often absurd inequities of the US medical system. I had recently had surgery (1/3)
abdominal wall #endometriosis excision (a procedure done by only 7 Drs in USA & NONE take insurance!) I’m #disabled on Medicare but they won’t cover this, they’ll only pay to remove my uterus! But they’ll pay for men to get boner pills! I’m rejecting the #mesh they placed. (2/3)
35yrs of chronic illness & pain I’ve seen the classism racism sexism capitalism ableism & patriarchy in the US med system is literally & figuratively crippling us. It’s gross that we have to do this for basic #HumanRights but if you’re able please help at my links in 4 (3/3)
Read 5 tweets
Using PEMF therapy to treat pain is recognised as being very effective. There are many studies out there treating pain from multiple causes. Here we see its uses in managing pelvic pain

pubmed.ncbi.nlm.nih.gov/7531030/
#Endometriosis is considered a chronic condition with surgery being the only real possibility. PEMF therapy is good at managing chronic conditions. We’ve seen it with tinnitus and osteoporosis
nicecare.uk/endometriosis/
PEMF therapy works to normalise the immune system and bring the disease under control. The affected area becomes smaller, and symptoms reduced. This is also true in the case of injury and recovery from surgery.
pubmed.ncbi.nlm.nih.gov/29632855/
Read 5 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
#endometriosisawarenessmonth
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 ?

liberation.fr/societe/sante/…
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 €).

redactionmedicale.fr/2021/04/des-ed…
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 👮‍♀️

mdpi.com/2077-0383/11/3…
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.

pd5i4.app.link/DlwOWMDKSeb?$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..."

sciencedirect.com/science/articl…
#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
🧵1/

First, read @ShawnteJamesMD’s whole thread.

It’s informative and moving…
🧵2/

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 orwh.od.nih.gov/research/2021-…
🧵3/ One of the most stunning (and maddening?!) slides was a #dataviz that used analysis from this paper: liebertpub.com/doi/full/10.10…
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
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

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