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Photographer Asks People to Date and Connect Their Scars for #ThisIsEndometriosis Campaign

In honor of Endometriosis Awareness Month, photographer Georgie Wileman is bringing her “This Is Endometriosis” photo series to social media, asking others to participate by dating and connecting their surgical scars.

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This campaign was born out of my photographic project by the same name. I am raising awareness of endometriosis, and the multiple surgeries that are performed for it. Too often, people with this disease are subjected to repeat operations that usually cause further damage and pain. Excision surgery with an endometriosis specialist is currently the best treatment for this disease. This surgery is usually not covered by insurance plans or healthcare services across most of the world. This isn’t good enough. By dating and connecting our scars, we are showing the true extent of endometriosis, and the ultimate failings of our healthcare systems. Let’s go. ???? #thisisendometriosis ✖️link in bio ✖️ for full details. . . . . . . . . #endometriosis #endo #endometriosissupport #endometriosissurgery #endostrong #endometriose #endometriosisawareness #endometriosisawarenessmonth #calltoaction #healthcareadministration #protest #publicprotest #socialcampaign

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Wileman believes drawing attention to endometriosis-related surgeries is important because of the lack of knowledge about treatment.

Although endometriosis is estimated to affect 176 million people worldwide, the condition is still widely misunderstood – even by doctors. On average, it takes seven to 10 years for a person to be diagnosed with endometriosis, and many are mistreated because the doctor is either uninformed or misinformed about the condition.

Currently, the “gold standard” treatment for endometriosis is excision surgery, in which the endometriosis is carefully cut away from the surrounding tissue. However, finding a qualified doctor to perform this operation can be tricky, as the specialty is not recognized by the American Medical Association, and is not properly reimbursed by most insurance plans in the U.S.

“This operation is little known about,” Wileman explained, “leaving only those privileged enough to afford it, or go into debt for it, to have a chance at a better quality of life. This isn’t good enough.”

Other people with endometriosis may undergo different procedures, such as hysterectomy or ablation. Though these operations are sometimes touted as a “cure,” this is a myth. In reality, hysterectomy only removes the uterus – and since endometriosis is found outside of the uterus, a hysterectomy won’t treat the disease unless the person also had adenomyosis. Adenomyosis — which occurs tissue similar to the endometrium infiltrates the uterine muscles — can co-occur with endometriosis but considered a separate disease.

Ablation surgery involves burning the top layer of endometriosis lesions, which can leave behind disease and cause symptoms to persist.

Many of those with endometriosis undergo numerous procedures and surgeries. Some of these surgeries may be necessary while others, unfortunately, are not. These surgeries can also cause both physical and emotional trauma to scars, additional pain, complications or infertility.

Each scar – each surgery – tells a story. “By dating and connecting our scars, we are marking out our pain, and the true failings of our healthcare systems,” Wileman said.

Of course, each person’s scars and stories are unique, which is why Wileman wanted to bring her personal photo project to social media.

“I have documented myself in my work, and others with the disease, including those of different races and gender identities, to show that endometriosis does not discriminate,” she said. “I knew I couldn’t tell this story in its entirety alone. Endometriosis affects one in 10 born with a uterus, we are in huge numbers, and we need to use that to be heard.” 

Wileman hopes that this social campaign will bring more awareness to endometriosis, and inform both patients and doctors about the reality of treatment for the disease. She explained:

I hope people will be educated on the true extent of endometriosis, and the multiple surgeries that are performed for it. This is not just a disease of “painful periods” as is often described. Endometriosis can claim your organs, your fertility and mobility. I hope people with endometriosis will educate themselves on excision surgery, and not stop fighting until they get it.

If you have scars from endometriosis-related surgeries, here’s how you can get involved:

  1. Date each scar (no matter how small) from an endometriosis-related surgery with pen, with each year it was opened.
  2. Connect your scars with a single line.
  3. Take a picture on white sheets, using natural daylight.
  4. Post with the hashtag #ThisIsEndometriosis
  5. Tag @GeorgieWileman on Instagram so others can find the full project and instructions.

If you haven’t had any surgeries for your endometriosis, that’s OK! You can still participate by taking a photo of yourself with a heating pad, hot water bottle or ice pack instead. (For additional information about the project, visit Wileman’s website.)

Below, check out some of the photos people with endometriosis have posted as part of the #ThisIsEndometriosis project:

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#thisisendometriosis We are dating and connecting our scars from endometriosis related surgeries, to show years of mistreatment and the failings of our healthcare systems. Find out more details of how to get involved at ✖️link in bio ✖️or my story highlights. Thank you to these fantastic people for being a part of this campaign. @catastrophicbliss @endodancer @cori5mith @helenwilsonbeevers @lifeabove_endo @jfelbzzzz @fearlessly_defying_endo @justtia325 @more_than_endo @sorrellreilly . . . . . . . . #endometriosis #endo #endometriosissupport #endometriosissurgery #endostrong #endometriose #endometriosisawareness #endometriosisawarenessmonth #calltoaction #healthcareadministration #protest #publicprotest #socialcampaign

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What if my gynecologist had referred me to an #endometriosis specialist as a teenager when I had clear #endometriosis symptoms? What if the general surgeon who took out my appendix at 23 could have recognized the disease that was clearly covering my entire pelvis, impacting multiple vital organs? What if my reproductive endocrinologist sent me to an #endometriosis specialist instead of just ablating my disease? How much less suffering? How many less surgeries? How much more health, joy, opportunities would have come my way? While the amount of scars and surgeries may be unsettling what is more shocking is the unwillingness of @acog_org to work with advocates to fix this and help amplify the voices of those who have suffered to transform care. Thank you to @georgiewileman for creating this powerful campaign. #thisisendometriosis #wematteracog #endometriosis #infertility #endometriosisawarenessmonth #enoughisenough #wedeservebetter #5monthspostop #reproductivejustice

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As a contribution to the endometriosis awareness month, this March I'm joining the #thisisendometriosis campaign launched by @georgiewileman [swipe for more info] Portrait with a hot-water bottle – still waiting for my excision surgery with an endo expert… Awareness, education, support ????️???????????? ▫️ ▫️ ▫️ About the project "An important reason why I do this work is to raise awareness of endometriosis, and the multiple surgeries that are performed for it. Too often, people with endometriosis are subjected to repeat operations that usually cause further damage and pain. Excision surgery with an endometriosis specialist is currently the best treatment for this disease. Spreading this message is incredibly important to me. Without a fellow Endo friend telling me about excision, I would still be in a wheelchair due to pain from the disease. By asking people to date and connect their own scars, or lay with their heat pads, we can show the true extent of endometriosis, and the ultimate failings of our healthcare systems." [Georgie Wileman] Foto di Sara Bazinga ????️ @electrolite1982 #endometriosi #endometriosis #endostrong #endosister #endosisters #endoawareness #endometriosisawareness #endowarrior #endobelly #endopain #chronicillness #chronicpain #spoonie #spoonielife #spoonies #invisibleillnessawareness #invisibleillness #butyoudontlooksick #1in10 #womenshealth #endosucks #endometriosisawarenessmonth #periodpain

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#thisisendometriosis and this my swollen, surgical soap covered belly a few hours post-op in the hospital yesterday. In 1998, as a 19 year old newlywed college student, I had a laparoscopy with cauterization. Afterwards, my gynecologist told me that one of my ovaries was covered in endo and she wasn’t able to do a lot there for fear of damaging my ovary. She told me that if I wanted kids I should think about trying to get pregnant now because she didn’t know whether I’d be able to conceive at all, but this surgery could have opened up a fertility window for me. Yada yada yada—this is my belly after nine pregnancies (6 live full term births, 2 second trimester losses, and 1 early 1st trimester loss). Yesterday’s procedure was robotic assisted excision surgery with rectocele repair and salpingectomy. I elected to keep my uterus, but I do have adenomyosis. Most of my lesions were underneath my uterus, and the after pics look like a bombed out war zone back there. My surgeon, Dr. Brian Nelson, removed lesions on my uterus, my ovaries, the ligaments around my uterus, and up on my diaphragm. I am home now and medicating with cannabis (1:1 CBD to THC) instead of taking the narcotics they wanted me to take. It took me quite awhile to fully come out of anesthesia, and I remember the nurse repeatedly reminding me to breathe. I felt like I didn’t need to though, so I was confused about why she was asking me to. I kept asking for my husband, but she said she couldn’t leave me alone to get him because I wasn’t breathing enough. Finally another nurse came by and sat with me so my nurse could go get him. I had a male nurse when they moved me into a room, and I was probably giving him major side eye, but he turned out to be a really great nurse with a compassionate heart. My doctor is as empathetic as a man can possibly be about endo pain, and he held my arm and hand in such a sweet way as I read a prayer I had written after we got into the OR. I know this story is jumbled up, but I am still processing the whole experience as I type. I’m glad to be home in my own bed, and I am very hopeful that I will be in a lot less pain after I recover from this surgery. #endometriosis

A post shared by Amanda Moon ???????????? (@highpriestessapothecary) on

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If you aren’t already following the lovely @georgiewileman this is the perfect time to do so. I had the chance to meet her and be photographed by her last spring during my book tour and she’s one of the most extraordinary people I’ve ever met. For #EndometriosisAwarenessMonth she’s started a social campaign that sprung from her portrait series: #thisisendometriosis. This photo is my contribution. Swipe over to see how you can get involved. Here’s what Georgie had to say in her original post: “Too often, people with this disease are subjected to repeat operations that usually cause further damage and pain. Excision surgery with an endometriosis specialist is currently the best treatment for this disease. This surgery is usually not covered by insurance plans or healthcare services across most of the world. This isn’t good enough. By dating and connecting our scars, we are showing the true extent of endometriosis, and the ultimate failings of our healthcare systems.” ⁣ .⁣ .⁣ .⁣ .⁣ .⁣ .⁣ .⁣ #endosibs #endometriosis #endo #endometriosissupport #endometriosissurgery #endostrong #endometriose #endometriosisawareness #endowareness #calltoaction #healthcareadministration #protest #publicprotest #socialcampaign #askmeaboutmyuterus #endowarriors #endowarrior #endofound #efa #endocommunity #thisisendo

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Lead image via Georgie Wileman’s Instagram