What Is Endometriosis?

Endometriosis is often associated with debilitating pelvic pain during menstruation, but its symptoms can span all over the body. The condition has an average diagnosis delay of seven to 10 years. So what exactly is endometriosis, and why is it so hard to diagnose?

What endometriosis is, is when you have cells that are similar to the lining of the uterus, but those similar cells are found externally, or outside of the uterus. Each cycle, endometrial cells inside the uterus react to your hormone levels by breaking down and being released through the vagina as your period. But with endometriosis, the endometrial-like tissue growing outside of the uterus is doing the same thing. Except these cells have no way to get out of the body. Symptoms of endo will vary, especially based on where the endometrial-like tissue is growing in the body, and often aren’t taken that seriously, brushed off as just a ‘bad period’.

Endometriosis is this invisible disease and the way that so many patients describe the disease is like barbed wire being wrapped around their abdomen it really can be endos found anywhere in their body. So the patient looks okay. They look healthy, but they feel miserable. The clumps of tissue that grow outside the uterus are called implants, and they can literally pull on and distort internal organs and muscles. Those degrading cells can cause inflammation that spreads to the surrounding area. In severe cases, implants may eventually scar and basically act like glue, causing organs to stick together when they shouldn’t. These all contribute to the increased risk of issues like ectopic pregnancy and infertility with endometriosis—when it’s found around the reproductive organs, rogue endometrial-like tissue can wreak havoc and prevent normal ovulation. But the lack of awareness around this disease means that many who struggle with it may not get diagnosed for a long time—on average, it takes about 7 to 10 years.

Endo wasn’t even ‘discovered’ until the 1920s, and it took decades for the condition to be regularly included in medical training. In France, for example, endometriosis was JUST added to the medical training curriculum, and in many countries education on effective treatment options is still not regularly included in training for gynecologists. As if to add insult to injury, there’s only one way to definitively diagnose endometriosis...and it’s surgery. A doctor will go in through a tiny incision and take a biopsy to make sure that there really is tissue growing outside the uterus.

#Endometriosis #bodylanguage #wellness #seeker

Resources:

Read more:
Clinical diagnosis of endometriosis: a call to action
Population-based data suggest that more than 4 million reproductive-age women have diagnosed endometriosis in the United States. As daunting as this number is, it only tells part of the story, as an estimated 6 of 10 endometriosis cases are undiagnosed. Thus more than 6 million American women may experience repercussions of endometriosis without the benefit of understanding the cause of their symptoms or appropriate management.

What are the symptoms of endometriosis?
The severity of the pain does not correspond with the number, location, or extent of endometriosis lesions. Some women with only a few small lesions experience severe pain; other women may have very large patches of endometriosis but experience little pain.

Behind the times: revisiting endometriosis and race
Early exploration into the pathophysiology of this condition identified race as a risk factor for endometriosis, with the condition predominantly identified in white women. It is still unclear whether there is a biological basis for this conviction or whether it can be explained by methodological and social bias that existed in the literature at that time. Although there is more recent literature exploring the association between endometriosis and race/ethnicity, studies have continued to focus on the prevalence of disease and have not taken into account possible variation in disease presentation among women of different ethnicities.

Editor’s Note: At Seeker, we recognize that people of many genders and identities have vaginas and uteruses, and are affected by the topics covered in Body Language: not only women. Where gendered language does appear is in reference to specific language used within the scientific studies cited.

[jaybruce]

It might seem random for a bloke to thumbs up this video, but having been in a relationship with a woman who had this condition, I cannot help but support anything that raises awareness of it.

[MsHetha]

As someone with Endo, it is so frustrating how little medical professionals know about it. Each time I get a new primary they insist on a transvaginal ultrasound, which shows they have no idea how to react or what it is. I've also asked for a hysterectomy and every single Dr insists that I should wait until after children. Most women with Endo need medical assistance to have kids. Also, I'm 41 and certainly don't want kids at this stage in my life. Getting diagnosed is so hard, but the aftermath is harder and doctors just don't care that my uterus has declared war on other organs.

[peartdahurt]

Yet another reason I am happy to be a male. Females go through so much with their bodies and don't get the credit that they truly deserve with everything that they have to deal with. I've always said that us men could never handle the pain of child birth. And to now hear that so many women can suffer from endometriosis for years and not be diagnosed/receive the necessary care just further proves how much women go through and how strong they truly are. I applaud and admire women everywhere.

[tataick]

Finally, somebody to explain it! Please, believe us when we say our periods are NOT the same as the others!

[jmsansomascaro]

I was 36 when I was diagnosed with deeply infiltrative endometriosis and it was too late. I lost some organs in a surgery that were completely wrapped in endometrial tissue and cysts. I had been complaining about painful periods since I was a teenager.

It is the worst thing that has happened to me so far.

[lb]

Sad part is my white friend had the same thing and we went to the same clinic. I saw first hand how her situation was treated more dire. So yes, discrimination in getting proper Healthcare for black is no equal.

[CyrynDragoon]

Thank you. I've suffered for 20+ years from this disease and finding accurate information is so difficult. Thank you for making such an accurate video. I'm crying at the acknowledgement of how bad this disease is. Thank you.

[one_storm]

Finally this is getting mainstream attention. When told my about the debilitating pain I was experiencing, he told me I just needed to do some stretching and to take some Tylenol. Wasn’t until my bf (not black) started explaining my symptoms and how much pain I was in to a W nurse. Then the nurse told the w doctor and I started getting help. This was after my 3-4th trip to the ER for pain.

[hindsightpov]

Dismissiveness from the people around you and from doctors really is the last thing anyone should do. It’s why so many people suffer for years before finding out what legitimate affliction is affecting them and causing them pain. They should have been able to get treatment much earlier to ease their suffering.

[anna]

Well, a gynecologist told me that I had endometriosis, he put me on hormonal treatment for 6 months and it did not solve anything. He didn't talk about surgery.
As the pain continued, I followed a person's suggestion and went to acupuncture. In a matter of 3 months I was no longer in pain.
It has been over 10 years since I last went to acupuncture and I am still pain free. 🤷🏻‍♀️

[deisisase]

I hope this helps with education. I've heard horror stories, the worst I've heard was someone gave birth with no pain meds said that that was easier than a period. She'd never had a normal period! Needless to say she was asked to come back when her period returned.

[garykubodera]

Great segment and more men should watch this! As a husband and someone that worked in the medical field, it's not shocking it can take many years to get a diagnosis...that and the fact that medical care for this type of condition can be difficult with many different types insurance..if you can afford it!! At least most doctors now days will admit they don't know what is causing a problem..a far cry from them never admitting to a patient they did not know.

[marydlutes]

I spent 30 years sleeping on the bathroom floor with menstrual cramps. This was before endometriosis was even on docs radar. I started reading about endometriosis in college in the 1980's and asked PLENTY of docs about it. They all said it wasn't a thing. My undergrad anatomy professor told all the women in her class she wouldn't take menstrual cramps as a excuse for late assignments because she didn't have cramps, her daughter didn't have cramps, there was no physiological condition that would result in cramps, and if you did have menstrual cramps you needed to see a psychiatrist. It's too late for me, but at least now young women can be treated and find some relief for a life long debilitating condition.

[iPodFayne]

So glad endo awareness has been increasing, probably the biggest obstacle for diagnosing, treating, and handling it is people’s ignorance.

[loiswright]

This was so informative.

Please do a video on Premenstrual Dysphoric Disorder. I think people will benefit from that. I was diagnosed with it earlier this year and I’m shocked how little people know about it .

[boasgar]

i was around a care worker when she was working in the house i was living who has endo. she was in so much pain during her shifts, and she really tried to cope with it too which is what made it so heartbreaking when others tried to dismiss her

[aprildawnsunshine]

How can you talk about endometriosis and not bring up hysterectomies!?! Many of us decide to have a total or partial hysterectomy once we decide we don't wish to be pregnant, either ever or again. There's risks of course, it's basically early and sudden menopause, but it's very effective in stopping further spread. Yet everyone discourages it. My friend was pressured into waiting so long the endo collapsed her lung! I had all mine removed at 32 and I've never regretted it, well not for more than a minute when I see a baby but 😉

[kholozondi]

I remember going down several rabbit holes of reading about endometriosis from several years ago to several weeks.

Reason being, it just confused me so much as to how it could possibly happen and why so few treatments and diagnoses methods are available. I'm so happy more comprehensive studies are being done!!

[knockeledup]

My gynecologist performed a lap on me and ablated the endometrial tissue. Then he had me get Lupron injections which worked like a miracle but you can’t take it for longer than 2 years. So since then I’ve taken 20mg of medroxyprogesterone daily and I haven’t had a period in years. Not only is it awesome for convenience but as long as I’m not going through that hormonal cycle, then there’s no way for more endometrial tissue to form.

[orestria]

Thanks for this; I have endo. I wish I could convince a doctor I don't want kids and get a hysterctomy.
It took me a long time to get diagnosed, people just dismissing my pain even though multiple times I had passed out from the pain