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A thread on #Endometriosis a systemic, inflammatory disease which affects around #1in10 or 176 million people worldwide.

This thread covers myths, causes, symptoms, comorbidities, pregnancy/childbirth, diagnostics, treatments, & patient experiences.

Endo is essentially an extra uterine, estrogen dependent, systemic inflammatory disorder that causes abnormal endometrial-like tissue growth, similar to cancer but benign. It is mainly spread throughout the pelvic cavity but has been found in every organ – but the spleen.
As we explore cause, we will discuss how it is likely a disease that people are born with (a genetic/developmental defect) that is activated when estrogen becomes dominant, this is largely around the first period for the majority of patients, who are people with a uterus.
This ties into a myth: Endometriosis is a “Female” Disorder

Endo is not gendered because anatomy does not have inherent gender, thus neither do diseases. Whether someone is a woman, nonbinary, intersex, trans, gender non-conforming whatever gender, they can have endometriosis.
Endo also isn’t expressed along strict sex trait lines, despite Endometriosis’ supposed connection to the uterus the disorder has been RARELY found in Cis Men. This means the disease is created another way & it’s simply estrogen dependent thus rarely activates in AMAB people.
Let me be clear: This disorder is not gendered or sexed but HAS consistently been cissexistly dismissed as “female” problems. Because most patients are people who menstruate and one of the possible symptoms is also one of the only ones they noted: Dysmenorrhea, painful periods.
This is why the disorder was dismissed, as “female,” a pathology of the uterus, “a bad period.” This is why I believe it is the most damaging myth.

Because cissexism still affects every aspect of diagnosing/treating Endo — patients suffer not only medically they face oppression.
Cispatriarchy effects how patients are treated by family, friends, doctors, nurses, & total strangers daily.

Gendering led to the minimization and honestly cruel, dismissive treatment of a highly complex, invasive, and destructive disease whose primary symptom is severe pain.
Even patients can self-invalidate largely due to cismisogynist myths that its normal for people who menstruate to endure, not discomfort, but pain during periods. However, if you experience menstrual PAIN, there is SOMETHING wrong. In fact 80% of pelvic pain is Endo related.
Doctors also dismissed AFAB people because of the connected, contradictory, myth that we are “hysterical.” Born from the Greek word for uterus, this idea pathologized the uterus, as if people with uteruses somehow were driven “cr*zy” by them and imagining or exaggerating pain.
Thus, doctors refused to even listen to patients. That’s why when “Speak Endo” ran commercials that blamed patients for not telling doctors about their pain – I became furious. I have never spoken to a patient that has never brought up their pelvic pain.
In fact, UK doctors issued an OBVIOUS guidance to increase endometriosis diagnosis – “Listen to women.” Again, this “guidance” falls short as it continues to gender endo – but the problem is clear. Doctors don’t listen to AFAB, intersex, Trans patients. theguardian.com/society/2017/s…
So Cis Men aren’t victimized by Endo in the same way even when they are patients. First, because cases are extremely rare (still in the double digits compared to millions). Also, Cis Men don’t wait years, complaining of symptoms, for treatment like most patients of Endometriosis.
Cis Men were already either being treated and monitored when they developed endo, or sought treatment upon crisis & received it.

Below is a great piece exploring this contrast by a nurse who runs an Endometriosis Education FB page: Nancy’s Nook. linkedin.com/pulse/176-mill…
I say this because I know there is already a patriarchal impulse to center Cis Men, even with a disorder gendered “female.” As we saw with an Australian study that sought to understand Endometriosis’ affect on Cis Male partners’ sex lives. ncbi.nlm.nih.gov/m/pubmed/29706…
Not patient’s sex life, wellness, mental health, or satisfaction. But those without disease. So I wonder why I feel the need to preempt any attempts to center Cis Men in Endo discourse...

Also 2 pieces lambasting the bs study:

And here’s an adorable palate cleanser from that crap!

Image Description: My three cats snuggling me in a row down the length of the bed. Three cats in a row down the bed cuddling a person’s blanketed legs. The first is a brown multicolored Maine Coon, then a Ginger Short hair, and finally a Grey & white Maine Coon.
Let’s continue with another myth: Endometriosis can be cured.

Endometriosis has no cure. There are cases where Endo becomes asymptomatic. In fact, some people never present with pain/symptoms – but this does not mean Endo was cured and potential organ damage isn’t a concern.
Hysterectomy, pregnancy/birth, and menopause have all been touted as cures to Endo. So why do they sometimes cause asymptomatic Endo? Endo is estrogen dependent, these processes radically and swiftly decrease estrogen in patient’s bodies. It can decrease symptoms for some people.
However, most patients’ symptoms come back. This because endometriosis tissue has not been removed and can produce its own estrogen. Endometrial tissue also does not have the hormone receptors of endometrium tissue; thus responds differently. scarleteen.com/article/bodies…
Proper treatment can more consistently cause asymptomatic or less symptomatic Endo. By removing as much endometrial tissue as possible through laparoscopic excision (rarely laparotomy). In cases with a skilled surgeon excising, recurrence is less frequent & may not occur.
Through surgeries by Endo Specialists - doctors who exclusively treat Endo - causes, patterns, appearance, & symptoms of Endo are also better understood. In fact, some surgeons believe Endo’s distribution reveals “tracts” & removing them fully may be curative.
Now, hysterectomy is still a treatment for endometriosis’ “sibling” disorder adenomyosis. Adenomyosis is not a progression of endometriosis, it is when endometrial tissue exists within the muscles and walls of the uterus (again Endo is markedly different from Endometrium).
Hysterectomy is an effective treatment to Adenomyosis because it is limited to the uterus.

Ablation, when excision would weaken uterine muscles too much, is also used in Adeno treatment if people want to keep their uterus. Adeno tissue is difficult to locate & can be dispersed.
So let’s turn our attention to causes and another myth: Endo is due to retrograde menstruation.

For people with uteruses, our symptoms usually begin when our menstruation does during puberty, but can begin before puberty. So when is Endo formed? This is fundamental to this myth.
Cis Male Endometriosis is important because it highlights that the disease is likely formed during embryonic development. The triggers for Cis Men, can be hormone treatments, increased fat tissue that encourages higher estrogen levels, and liver cirrhosis.
Trans Women may also experience an onset of symptoms upon being treated with estradiol and other hormone treatments just as they experience menstruation symptoms regardless of a uterus. theestablishment.co/yes-trans-wome…
So we have a good idea of when it forms but there is still no consensus on cause. Some doctors STILL dispute that it is formed during development despite a plethora of evidence. In fact, even retrograde menstruation hasn’t been “officially” dismissed as a possible cause.
So here are the hypotheses:
Sampson’s Theory of Retrograde Menstruation, Immune Dysfunction Theory, Theory of Mülleriosis, Embryonic Rest Theory, Stemcell Theory, Theories of Lymphatic or Vascular spread, and Coelomic Metaplasia Theory. Genetic/enviro factors likely contribute.
This theory is widely considered junk science by those who actually study this disease, it poses that endometrium flows backwards through fallopian tubes into the peritoneal cavity and attaches during menstruation.
Unfortunately, it remains prevalent despite the fact 90% of people experience retrograde menstruation and only 10% have endometriosis, endometrium is not able to attach to the peritoneum, the endometrial distribution patterns don’t match, & endometrial tissue is not endometrium.
Theory of Mülleriosis argues that some abnormality in fetal development causes endometrial tissue to be laid down in the embryos’ pelvic cavity. This theory explains occurrence of Endo tissue in Cis Men, Fetuses, and other developmental abnormalities discovered in Endo patients.
Embryonic Rest Theory: Claims that cells that caused embryonic development in Mülleriosis linger and can form Endometriosis later in life. It’s not known or proven; however, that these cells can actually persist beyond early life stages. Nor is there evidence Endo forms later.
Stemcell Theory: Poses that endometrial stem cells are located outside the uterus & can regenerate/produce differentiated “daughter” cells; however, this does not explain embryonic development of the cells and the patterns of disease that specialists find within patients.
Theories of Lymphatic or Vascular spread: In those very rare cases that a patient has endometriosis in locations far outside the pelvic cavity such as: lung, brain, or eye endometriosis Lymphatic or Vascular transport has been suggested.
Coelomic Metaplasia Theory: This theory explores the idea that any cell in the body can become any other cell. It argues that the genetic material of a cell or group of cells becomes expressed differently developing endometriosis.
ULTIMATELY, it is likely it is a confluence of causes beginning as embryos in our parent’s uterus. More and more evidence is demonstrating the formation and cause of endometriosis begins in the uterus during fetal development, likely due to genetic and environmental factors.
Dr. Redwine (one of the first specialists) supports embryonic development theories because Endometrial tissue contains 700+ genetic differences to endometrium, the consistent rates of Endo - 10-11% in embryos and adults, & consistency of distribution. drive.google.com/file/d/1DIW1rD…
As I’ve said Endometriosis is similar to cancer: abnormal invasive tissue growth, inflammatory & systemic, and it causes similar pain, symptoms, and fatigue.

It’s differences are, it’s thankfully not malignant and it’s growth may be limited to where it developed in utero.
However, there are contradictory findings on this that should not be overlooked particularly as endometriosis is (very rarely) known to spread far beyond the pelvic cavity, bowels, or diaphragm

re: lymphatic/vascular spread. sciencedirect.com/science/articl…
The theory that Endometriosis may spread, either through tissue metaplasia or lymphatic/vascular transport is still crucial to rule out as it would play directly into whether removal of all known tracts of Endometriosis would actually be curative. bioone.org/journals/Biolo…
Alright, so we’ve covered some myths and explored the probable root cause.

Let’s take a quick break and look at some adorable puppies.

Image Description: an auburn and a black and brown cockapoo sit next to each other side eying the camera. ‪An auburn and a black and brown cockapoo sit next to each other side eying the camera. ‬
So what are the symptoms? Particularly as Endometriosis attaches to multiple organs and organ systems making symptoms wildly variable.

First, we’ll run through the most common symptoms, then we’ll explore less known and rarer symptoms and how that relates to disease expression.
Common Symptoms: Pelvic pain is a predominant symptom, either tied to menstrual cycle or constant. Pain during sex, fatigue, pain with urination or bowel movements, Infertility (about 1/3 of patients), Gastrointestinal Upset (diarrhea, constipation, nausea, vomiting), Acid Reflux
Particularly heavy and/or irregular menstruation (though this is more tied to Adeno than Endo), lower back/leg pain and cramps, bloody urine, abdominal swelling, bloating (often severe, called “Endo Belly”), cysts & endometriomas, cyclical or chronic headaches &/or migraine.
Endo also has comorbidities: frequent yeast infections, allergies, asthma, autoimmune issues, CFS (Myalgic E), Multiple Sclerosis, Lupus, underactive thyroid, Rheumatoid Arthritis, Fibromyalgia, Pelvic Floor Dysfunction, Vulvodynia, Interstitial Cystitis, Breast & Ovarian Cancer.
Lesser known symptoms include internal bleeding, sacral nerve damage, nerve or other organ involvement, immune responses.

The first brings us to our fourth myth, it’s tied to Sampson’s RM theory: Endo builds & sheds according to patient’s cycle like Endometrium in the Uterus.
Dr. Redwine demonstrated Endo does not shed like Endometrium or contain blood vessels. Endo is not complex enough to build & shed tissue. However, he did find Endo appears to cause bleeding in surrounding tissue.

In fact, he observed Endo may be not located where blood is found.
Therefore, the cause or mechanism of bleeding is not clear. Particularly as, Dr. Dan C. Martin has also shown that Endo CAN bleed directly. Additionally, this bleeding doesn’t necessarily correspond to menses.

Endometriosis, producing its own estrogen, may have its own cycles.
The pain is akin to “having tens or hundreds of excruciatingly painful blisters,” the fatigue is comparable to advanced cancer in most cases, and doctors refer to it as a sort of “pain cancer.” Descriptions of pain include stabbing, shooting, & scraping. vitalhealth.com/endo-blog/what…
Endo may also be more painful due to “how sensory and autonomic nerve activity from nerves that have sprouted from nearby tissues to innervate the growths affect activity of neurons in the spinal cord and brain.” However, this study may be outdated. academic.oup.com/humupd/article…
MRI-DTI (Diffusion Tensor Imaging) has also been used to image the sacral nerve in two different studies; in both, sacral damage was found, largely in patients presenting with advanced stages of Endo & chronic, rather than largely cyclical, pelvic pain.
Endo can also be in any organ (but the spleen) so its possible symptoms are vast and complex. However, there are specific symptoms based on where Endo is located and the extent of organ, even nerve, infiltration. We’ll explore some of these including very rare locations.
To be clear, Endometriosis is largely contained in the pelvic cavity. It also does not advance in spread with age or time. However, it is increasingly more common to find extra pelvic cases - likely because doctors look now. Therefore, it is important to know potential issues.
Ovarian Endo is considered most common, likely the first place OBGYNS look to diagnose; however, Ovarian Endo is actually the 7th or 9th most common location. In fact, patients with Ovarian Endo likely have more extensive pelvic & intestinal involvement. endopaedia.info/subtype7.html
Only 1.06% of patients studied with Ovarian Endo, only had it present on their ovaries. Thus, the symptoms of Ovarian Endo are difficult to narrow down as Ovarian Endo itself is indicative of further (usually more extensive) disease. endopaedia.info/subtype9.html
Additionally patients with Ovarian & Intestinal Endo were more likely to require full- thickness or segmental bowel resections to remove intestinal disease. So what are Intestinal Endo’s symptoms?

Well, most Endo patients experience some bowel symptoms regardless of involvement.
However, involvement may also be more common than thought – again likely because we’re looking. “In specialized practices it can be up to 30% of endometriosis patients.”

In those patients superficial v. deep infiltrating produce different symptoms. pacificendometriosis.com/bowel-disease/
Deeper lesions cause pain during &/or before BM as they may create sharp colon kinks. Relief after BM is often immediate. Patients describe pain as sharp, cutting & accompanied by deep “gut cramps.” Nausea & vomiting also present. Rectal bleeding rarely occurs & is concerning.
More superficial lesions will typically cause bowel pain cyclically during or just before patient's menses. They can cause a similarly sharp pain. However, because they usually do not cause kinks or strictures they cause less bloating and “gut cramps.” pacificendometriosis.com/bowel-disease/
Lesions along the small bowel include the appendix, another common site of Endo. SB & Appendiceal Endo tend to cause nausea, bloating, diffuse GI cramping, and at times vomiting. Sometimes obstructions can form causing severe vomiting and require acute surgical intervention.
Because Endo itself cannot be seen, unless Endo penetrates fully through the bowel GI X- Rays and Colonoscopy are not useful. Most GI Endo requires diagnostic surgery. Additionally, Bowel Endo usually appears white, often requiring a specialist to find. endopaedia.info/subtype2.html
Rectovaginal Endo, which some consider the “greatest gynecological surgical challenge" even stating "if such disease represented cancer, it would be deemed inoperable.” However, excision remains the only effective treatment. So surgeons soldier on, hoping to offer relief.
When the rectum is involved, it “frequently scars forward to the back of the uterus, causing [...] obliteration of the cul de sac.” This is deeply invasive Endo. People frequently present with severe backache, lower abdominal pain, dyspareunia, dyschezia, constipation, & diarrhea
Diarrhea is more likely during menses. They may also experience pain with flatulence, BM, or sitting. These symptoms often occur constantly throughout the month, not dependent on menses, and some patients “may also report a light temperature elevation.” endopaedia.info/subtype14.html
Vaginal Endo is often missed upon examination as it lies behind the cervix and few OBGYNS explore beyond it. However, doctors may be able to feel nodules behind the cervix, if looking. This can be extremely painful and understandably most Endo patients shy from pelvic exam.
Urinary Tract Endo includes the bladder and ureters. Bladder Endo may be superficial or deep, and will not be visible on scans such as cystoscopy or MRI unless it is has penetrated the muscular wall (very rare). Superficial Endo on the bladder is common and usually asymptomatic.
Deeper implants may result in urgency, frequency, Nocturia (waking up to void bladder), painful bladder spasm while urinating, & hematuria (blood in urine). Interstitial Cystitis should also be considered, particularly if treatment does not resolve pain. endopaedia.info/subtype10.html
Ureteral Endo is even rarer & “results from extension of locally invasive disease from an adjacent uterosacral ligament nodule.” Usually the ureter is surrounded, not infiltrated, by Endo. Still, proper treatment is crucial as it can lead to Kidney loss.
Each manifestation discussed is increasingly rarer, so don’t fret too much just be mindful if symptoms present. Another possibility is Thoracic Endo, 95% of these cases occur on the right diaphragm only – likely due to how tissue is developed as embryos. endopaedia.info/subtype16.html
Symptoms are mainly right chest/shoulder pain around menses, or consistently. It is often deep chest pain radiating to the shoulder, side of the neck, or arm. The symptoms are identical regardless of location. Pain may make it difficult to breath or lay down. Hiccups are unusual.
In most cases diaphragmatic Endo is not associated with catamenial pneumothorax (lung collapse during menses). They symptoms can be similar; however, catamenial pneumothorax comes with an element of breathlessness not found in Thoracic Endo. endopaedia.info/subtype16.html
As previously mentioned, other developmental abnormalities have also been associated with Endo – including peritoneal pockets. Endo does not cause these pockets but is found in or around these pockets in about 66% of patients so should be checked. endopaedia.info/subtype5.html
Urinary Endo, very rarely, includes the kidney often causing back pain or hematuria. Cutaneous Endo is consistently found at surgical sites. Meanwhile, most Musculoskeletal Endo exists without Pelvic disease. Here is a broad overview of farther endo sites. endopaedia.info/subtype12.html
Rarer still, cases also include pancreas, liver, gall bladder, lungs, nerves – such sciatic, and brain Endo (exceedingly rare – single digits). This info should not increase anxiety due to rarity. Simply be aware and keep Endo as a possibility with unusual/unexplained symptoms.
An exploration of Sciatic Endometriosis: blog.possover.com/en/burning-pai…
Lung Endo: eurjmedres.biomedcentral.com/articles/10.11…
Cerebellar Endo presents with brain function symptoms/headache, is found relatively easily on scans, can be effectively treated, & the danger removed. ajronline.org/doi/full/10.22…
Endo is systemic regardless of spread. Doctors find alterations of “endocrine and immune systems...endometriosis is embodied by a complexity of multiple immunologic
abnormalities, endocrine alterations and unusual expression of adhesion molecules.” centerforendo.com/endometriosis-…
Unusual immune responses, like recurrent low grade fevers, occur in Endo patients too. Endo is a comorbidity of many autoimmune disorders. For many patients this may be due to cascade immune responses triggering predisposed autoimmune diseases or developing autoimmune issues.
Depression, suicidal idealization, and anxiety are also common symptoms; not just from pain/symptoms/fear of Endo itself but also due to the isolation, ableism, and cismisogyny
that patients face. Frustratingly, pain is erroneously blamed on mental health. endometriosisnews.com/2017/09/11/fac…
An interesting note concerning the Italian study cited above: it excluded women with prior histories of Mental Illness. This is likely to be sure Endo was “the cause” of mental health issues – regardless Endo’s effects on patients with Mental Illness is absolutely contributive.
Now, many Endo patients are frequently told to “just have a baby” to either “cure” or “treat” these symptoms.

However, pregnancy/childbirth actually have their own complications and symptoms most patients aren’t aware of and pregnancy/vaginal birth ultimately is not a cure.
Endometriosis increases risks of ruptured endometriotic cysts during pregnancy, miscarriage, ectopic pregnancy, dystocia (obstructed labor), placenta displacement, placenta previa, unexplained antepartum hemorrhage, preterm birth, cesarean delivery, and postpartum hemorrhage.
Basically “Endometriosis is known to alter a [person’s] physiology in a way that could interfere with a number of stages of pregnancy.” Thus, pregnancy not only doesn’t help – patients & fetuses are instead at risk of different symptoms & complications.
Pregnancy with Adenomyosis is higher risk too. “Severe complications such as spontaneous rupture of the uterus, postpartum hemorrhage, and obstructed labor occurred in [people] who had Adenomyosis.”
This is not to discourage pregnancy but to inform patients of possible risks.
Many people have been able to have children even when risks were higher. Patients and their doctors can discern together how at risk of complications a person is by stages and treatment of Endometriosis.

Proper excision may decrease risks, particularly from endometrial tissue.
So after that barrage of symptoms who wants another cute picture of some fur babies!

Image Description: A Ginger short hair and white/grey Maine Coon snuggling with their faces pressed against each other. ‪A Ginger short hair and white/grey Maine Coon snuggling with their faces pressed against each other.‬
Now even when docs recognize symptoms, Endo is still difficult to diagnose. Endo cannot be seen on imaging, nor does bloodwork confirm or deny. The effects of the disease can be seen, often with Intravaginal Ultrasound, but only when it produces visible Endometriomas/adhesions.
During physical exam some Nodules can be felt. MRI & CT scans are effective in some cases of DIE; however, DIE still requires surgery to confirm & treat. In some cases entire intestinal segments are infiltrated & bowel dissection can prevent further harm & relieve pain/symptoms.
CA-125 tests for multiple issues besides Endo including ovarian cancer & can increase the anxiety of Endometriosis patients. This test can indicate more advanced endometriosis if it is positive, the levels higher than 32, and around 50-500 usually. womenshealthmatters.ca/health-centres…
Levels indicative of cancer are higher, around 1,000 to differentiate. However, a positive test does not mean you definitely have Endo and if you test negative this does not rule out Endometriosis – or advanced endometriosis. It is an investigative tool, not a diagnostic tool.
Laproscopic surgery is the only method to confirm. I would encourage (if possible) an excision specialist to do any diagnostic surgery so they can remove endometrial tissue effectively in one surgery. Particularly as cases of endometriosis are frequently missed by non experts.
Thus, a diagnostic surgery with a non specialist isn’t enough to completely rule out Endo either. This is largely due to coloring and location of Endo tissue. This brings us to another myth: Endometriosis is largely on the ovaries/uterus and is black/brown/red in color.
According to some estimates if a surgical team is looking mainly for black Endo on the ovary they’ll likely miss about 75% of Endo in the body!

Remember, Ovarian Endo is also actually the 7th or 9th location usually involved. Yet, most OBGYNS exclude the most frequented areas.
Particularly excluding the common lower pelvis & retroperitoneal spaces. Additionally, looking for darker colored disease is easier, hence the allure. However, this method also precludes finding the majority of Endo which is largely clear or white. Most OBGYNS don’t know this.
Dr. Jansen & Dr. Redwine suggest that color may also evolve with age. Some patients have all color variations present at excision. Surgeons must be able to identify the full spectrum of color.

This includes: clear papule, white, red, yellow, orange, blueberry, and black.
In fact, around half of black lesions aren’t actual Endo. They are iron staining from bleeding in surrounding tissue.

Also if a doctor claims “invisible lesions” be suspicious. The smallest Endo lesions are about the size of a human hair & visible. endopaedia.info/subtype4.html
When you are diagnosed Endo is “staged.” The majority of Endo cases are Stage I & II – superficial implants with mild scarring & possibly some cysts. Stage III & Stage IV have deeper implants, more severe scarring, endometriomas and cysts, and IV is likely Deep Infiltrating Endo.
It’s important to note that stage does not correlate to pain and symptoms. A Stage I patient can have debilitating symptoms while a person with Stage IV may be pain free. Infertility is most common in Stage IV, DIE patients & only 1/3 of Endo patients experience fertility issues.
So what about treatment? Hysterectomy, pregnancy, menopause (including surgically/medicinally induced) are not cures or effective treatment for Endo.

The Gold Standard Treatment for Endometriosis is excision surgery by an Endometriosis specialist, not a general OBGYN.
Endometriosis Excision surgery is as complex as many Gynecological cancer surgeries. It cannot be done by someone without a firm understanding of multiple organ systems, Endometriosis, and experience in excision – not ablation or cauterization. contemporaryobgyn.net/endometriosis/…
To find a surgeon in your area you can join Nancy’s Nook, an EDUCATIONAL Endometriosis FB group, NOT a patient support group. They have a list of international surgeons vetted on endo excision skills/treatment approach. As well as a list of questions for non-Nook surgeons.
Most OBGYNS push medical bandaids: hormone treatments (birth control) or GNRH inhibitors (Lupron or Orilissa), first and foremost. While these lower/eliminate estrogen or raise progesterone; that won’t treat the existence of abnormal tissue. It’s a bandaid.
Additionally, GNRH inhibitors (Orilissa/Lupron) put patients at risk of further harm and can stunt ovaries’ fertility. This exemplifies why retrograde menstruation “theory” is dangerous: it puts an overemphasis on menstruation.
Lupron and, near copy Orilissa, are ultimately not succesful either. They and estrogen suppresion (innefective, Endo produces its own) can cause bone damage, heart disease, atrophic vaginal tissue, & in some neurological symptoms similar to those of MS. nwhn.org/lupron-what-do…
These side effects often do not reverse after ceasing meds. Particularly, bone loss. Considering this is not effective treatments it’s cismisogynistic to push these as patient’s main or only treatment options.

(If it works for some patients good, this isn’t criticism of them.)
Some commonly used birth control options for Endometriosis include Mirena IUD, Nuvaring Vaginal Ring (often used without “period” week). Progesterone only BC pills are encouraged; however, there are some concerns about blood clots with pills like Yaz. endofound.org/all-birth-cont…
One possible route for further medical treatment lies in understanding inflammatory & immune responses in Endo. Research & debate around endometriosis continue to increase so hope exists for clearer answers which will lead to more efficient treatment. endofound.org/medicalconfere…?
As for treatments for Endo pain & symptoms they are as varied as us patients are! Often it’s best to throw a wide, multidisciplinary net over time, the more tools in our toolbox the better. Whatever works for a patient is what works for them and no one should infringe on that.
Endo diets, heating pads, ice packs, watching allergens, gut healing regimens like FODMAP can help with dreaded Endo Belly. Gentle and low impact exercise such as stretching, swimming, biking - especially on reclining bikes. Anti inflammatory diet...
& supplements, acupuncture, chiropractic care, physical therapy, massage, trigger point injections, supplements for nutrient deficiencies, TENS machines - specifically Livia and Endo Ease created for pelvic and Endo pain. Pelvic seat cushions to alleviate pressure.
Even exposure to nature, therapy, & antidepressants helps. Mental health is an important component of Endo, really all, treatment.

Also most patients rely on prescription pain meds, narcotics, and/or cannabis to treat pain, often daily.

But this is not an exhaustive list.
Nor are most stories and perspectives around Endo that are dredged up every Awareness Month very thorough in exploring how this disease affects people.

The face of this disease is white cis women, but that single perspective is not remotely the extent of the experience.
What about the experiences of racially and ethnically oppressed patients? Especially in increasingly specialized fields with predominantly white doctors?

• EndoBlack is a great org on Instagram
What about Trans men? Intersex people? Trans women? Non Binary people? Gender oppressed people across the spectrum face different experiences of Endo & Cispatriarchy.
You can follow Cori Louis Eli Smith on Instagram @cori5mith
The point is, when raising awareness of this disease we have to try to be thorough, expansive, and inclusive. This thread is thorough as I can make it atm because correcting harmful mass misinformation and advancing understanding is crucial to actually bettering treatment.
As for my fellow #EndoWarriors I am truly hoping for the best for all of you. I really want us to come together in solidarity by understanding the differences that divide our experiences and celebrating all our perspectives, making space for each other’s stories.
I am #1in10 who has self educated. I'm not a practitioner, nor do I know you well enough, and can't give you certain answers. However, ask away and I'll try to help you find the information you need. Endo research is also still growing, remember some info could prove to be wrong.
Here are further resources to help guide self education. The majority of my education was unguided, these ease the process: Nancy’s Nook Endometriosis Education, Endopaedia, Pacific Endometriosis, Center for Endometriosis Care.

End-o thread!

And if you’ve made it this far! Thank you!

Image description: A woman (me) and three cats laying on a bed, two are beside the woman and one is lying on top. The woman smiles up at the camera. ‪A woman (me) and three cats laying on a bed, two are beside the woman and one is lying on top. The woman smiles up at the camera.‬
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