March is Endometriosis Awareness Month, and if you’re scratching your head not entirely sure what that means, you wouldn’t be the only one. But because this painful condition deserves long overdue recognition, some women who have it are taking to Instagram to share photos of their endo scars using the hashtag #ThisIsEndometriosis.
Endo is a disorder in which endometrial tissue grows outside the uterus, typically attaching to other pelvic organs. It can cause symptoms like killer menstrual cramps, pain during sex, uncomfortable bloating, and pelvic pain even when you don’t have your period. But because a lot of doctors don’t know much about it, these symptoms are played down or blown off as a normal part of having a monthly cycle, or they’re dismissed as psychological.
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#THISISENDOMETRIOSIS ? – My journey with endometriosis has been long and complicated so when @georgiewileman (see the full campaign at her page) asked me to be apart of this campaign I had to do it. This photo shows the scars from my excision surgeries with the years in which they occurred. In these surgeries I’ve had endometrial tissue removed, cysts removed, scar tissue that covered and bound my organs together removed, and more. Endometriosis is so misunderstood that treatments for pain that have been recommended to me have been: wait it out, mountains of pain pills (read: opioid epidemic), birth control, surgery, hysterectomy, and my all time favorite “you could try to have a kid and see if it will get better.” (Having a child is not and should never be suggested as a treatment to pain.) – Endometriosis only emphasizes our broken healthcare system by providing yet another space in which women have to fight to be heard and believed by their doctor, most doctors are completely unqualified to be performing excision surgery (as was my first surgeon), and almost all who specialize in endometriosis aren’t covered by insurance. This alone creates the 7-10 year average time that it takes to get a diagnosis. I was so privileged that I had both the emotional and financial support to fight long enough to receive a diagnosis and treatment. So many are not that lucky. I also want to be clear that sharing this is not easy or fun for me, but the silence is only holding us all hostage to this disease and this healthcare system. We all have to speak out, to support one another, and to keep fighting to find a cure as well as a substantial and meaningful treatment for endometriosis. – March is #endometriosisawerness month – so I hope that if this is also your journey, or if you know someone experiencing this, you can begin to talk openly and honestly about your/their struggles. If you want to talk to me- I’m here, I’ll listen, I’ll support, and I will continue to speak out to raise awareness in the hopes that I can help even one person understand this better. ?
“This photo shows the scars from my excision surgeries with the years in which they occurred,” Hillary Wright wrote on Instagram “In these surgeries I’ve had endometrial tissue removed, cysts removed, scar tissue that covered and bound my organs together removed, and more.” The #ThisIsEndometriosis campaign was started by photographer Georgie Wileman, Wright explained.
Wright went on to sum up the so-called treatments doctors suggested she try over the years: “Endometriosis is so misunderstood that treatments for pain that have been recommended to me have been: wait it out, mountains of pain pills (read: opioid epidemic), birth control, surgery, hysterectomy, and my all time favorite ‘you could try to have a kid and see if it will get better.’ (Having a child is not and should never be suggested as a treatment to pain.)”
Wright isn’t the only woman who shared her story. Casey Berna posted a photo of her incision scars with this caption: “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?”
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Today marks the beginning of #endometriosisawarenessmonth. Endometriosis is a painful condition in which tissue mimicking the lining of the womb attaches to different parts of the body . My friend, amazingly talented photographer & fellow endo sister @georgiewileman is running the #thisisendometriosis campaign. Inspired by her own breathtaking image which was exhibited in the National Portrait Gallery as part of the Taylor Wessing Portrait Prize, scroll along to see what Georgie invites #endosisters to do, please join us if you’d like to- even if you have endo and no visible scars (take a pic with a hot water bottle for eg). Dating our surgery scars and connecting them together, Georgie wanted to visually highlight the true extent of endometriosis. You can also see IV drip scars on my pic. Let’s shout loud enough to be heard . My endo story began aged 14, when I was rushed to hospital in agony after watching the Hollyoaks omnibus. Back and forth to A&E departments, it took me 9 years to get a diagnosis. I’ve had 11 endo-related operations, countless procedures and have spent 21 years in pain. I also developed adenomyosis, which is essentially endo in the womb muscle wall, meaning by 2015 I was bed bound and living on a massive cocktail of painkillers. A hysterectomy heartbreakingly followed, and that trauma as well as everything else, still causes nightmares . The impact endometriosis has on every single part of life is catastrophic. Relationships suffer, people ask why you aren’t better yet and pain sucks away each ounce of energy you have left. I was managed out of most jobs I did because of multiple sick days and lack of understanding. I felt jealous of people healthy enough to hold down a working role. Yet over years of building experience and clearing a path, I now have a freelance career as a self employed writer. Endo battles instilled a steely determination in me . Thank you Georgie for raising awareness- changes need to be made, diagnosis times cut and a cure found. G also educated me about an innovative treatment, deep excision surgery . Check out Georgie’s endo photography series, depicting the disease more accurately than anything I’ve ever seen ?
Another woman who took part in the campaign, Helen Wilson-Beevers, shared that it took 9 years for her to be diagnosed. “I’ve had 11 endo-related operations, countless procedures and have spent 21 years in pain…The impact endometriosis has on every single part of life is catastrophic. Relationships suffer, people ask why you aren’t better yet and pain sucks away each ounce of energy you have left,” she continued. “I was managed out of most jobs I did because of multiple sick days and lack of understanding.”
Endometriosis is a very real and serious condition, and hopefully this campaign will result in more women being properly diagnosed. If you think you might have endo, these steps will help you make your voice heard in your doctor’s office.
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