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Five Badass Women Reveal What Life With Endometriosis Is Really Like

Five Badass Women Reveal What Life With Endometriosis Is Really Like

It's frequently referred to as 'the silent' disease. Because, despite the fact endometriosis affects a staggering one in ten women across the UK (along with the likes of Jessie J, Lena Dunham and Emma Bunton) its symptoms aren't always immediately visible.

Causing chronic pain, infertility, fatigue, painful sex, vomiting and bowel and bladder problems, the incurable condition occurs when tissue similar to the lining of the womb grows elsewhere in the body, with nowhere for the blood to escape when it sheds.

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For these five young women, however, endometriosis is anything but 'silent.' With hundreds of thousands of followers between them, they've chosen to give 'endo' a voice, sharing the true reality of living with the condition. From fertility issues and chronic pain to losing jobs and being forced to leave uni, here are their stories...

"I'm having my eggs frozen after being told I'll never be able to fall pregnant naturally"


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"After 11 years of being told I had irritable bowel syndrome (IBS) and bad periods, I was diagnosed with severe endometriosis and a frozen pelvis two years ago,' says Carla Cressy, 26, from Leigh-on-Sea, Essex.

"I've had five surgeries - the second caused me to almost lose my life. Since my next op could involve the removal of my fallopian tubes and possibly an ovary, I'm in the middle of three back-to-back rounds of egg preservation treatment which means I have to attend clinic every 48 hours.

"I can't work how I used to anymore and my modelling career has take a hit but I've set up a charity called Women with Endometriosis which now has parliamentary support. I want to help women get diagnosed in the early stages so I can save them going through what I have."

"I had to quit my university degree as the pain was so bad"

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Say hello to our founder Katy Johnston :wave:// Katy was diagnosed with endometriosis last year and recently underwent her first laparoscopic surgery. :muscle: She has suffered with painful periods for years. Pain which caused blackouts, nausea, vomiting and agonising cramps. Something was up ‍♀️. Despite years of denial, as her symptoms began to linger everyday: causing pain, brain fog and vomiting that led to a massive weight loss (2.5 stone :open_mouth:) Katy spoke up! After raising concerns with her Glasgow GP, Katy was referred to gynaecology where she heard the word endometriosis for the first time. :flag_black: Her MRI lit up like a Christmas tree and a following surgery confirmed 'stage 4' or 'severe' endo, several cysts, an expanded and damaged Fallopian tube and disease fusing the bowel to the womb. :sob: Katy will require a series of surgeries and long term management to control her endo and manage her symptoms. Post op? Katy is doing well and has been put on decapeptyl injections to inspire pseudo-menopause and shut the ovaries down temporarily. At 22, Katy is not loving this. Initially, she felt ashamed and her MOODS were terrible. :umbrella: She is learning to embrace her condition (although it's hard) and is positive about one thing - getting the message out! :mega::camera_with_flash: :envelope: Dear girls, speak up if you feel pain. Your story could save someone else from suffering! :heart::sparkles: . . . #endosilencescot #endometriosis #1in10 #endometriosisawareness
A post shared by Endo Silence Scotland :muscle: (@endosilencescot) on

"I was in the middle of a post-graduate degree in multimedia journalism when the vomiting and inability to walk forced me to drop out,'" says Katy, 23. "I'm now back on track to graduate but it's been a tough battle.

"I was only diagnosed last year, after a decade, despite waking up in hospital and demanding morphine every month. That was until it got to the point where I became housebound for months. I thought I was dying.

"So many women, girls, trans men and non-binary people are going through this and feel excluded from these conversations because they aren't in 'enough pain' or they don't have a diagnosis. That's what makes me want to rally for change."

"Endometriosis has cost me three jobs"


"It's not only a physical pain, it's mentally and emotionally abusive," says Sinead, 22. "I visited A&E over 200 times and have had a lot of time off work in the past, as the pain was so brutal I couldn't move for hours on end. I've even lost two jobs as a receptionist, and been forced to quit another, due to being 'unreliable.' People just assume you're a hypochondriac, dramatic or a straight-up liar. They think it's a 'bad period.'

"The 'endo belly' bloating is uncomfortable and gives you zero confidence but I try to share mine a lot on social media to try to embrace it and show others it's not a joke."

"It took me eight years to find a doctor who understood"

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The left photo was a photo taken by Liam in a moment... it's funny to see I was smiling in this photo because it was actually a really depressing time for me. I was out of touch with the gym, I couldn't go anywhere without being out of breath. My endometriosis was worse than ever... I was out of control. I'd eat takeaways, kebabs and McDonald's nearly everyday barely touching fruit. If anyone knows me well they know how much I love fitness and the gym, not for superficial reasons but for my mental health. The gym gives me mental clarity. There's no better than the endorphins rushing through my body after a workout, no better high :joy: the photo on the right was after a LONG transformation, it wasn't over night. There was no quick fix or fad diet. I did it gradually, and finally got my love for the gym back. I'm not saying everyone whose a bigger size needs to lose weight either but personally losing weight has helped me on my endometriosis journey. Being healthier in my life choices has had a positive impact on dealing with my endo. Remember EVERYONE is on their own path, their own journey. It just so happens that the before photo was not my happiest or healthiest. As long as you're happy and healthy that is ALL that matters. You bloody beautiful people :kissing_heart::kissing_heart::kissing_heart: • • • • • • • #weightlosstransformations #weightlossjourney #fitfam #fitnessblogger #fitness #myfitnesstransformation #fitnesstransformation #losingweight #beforeandafter #beforeandafterweightloss #gymjourney #gymgirl #7daychallenge #abchallenge #imogenrose #22kgweightloss #bestbodytransformations #weightlossmotivation #motivation #weightlosssupport #weightlossmanagement #proud
A post shared by Imogen Rose (@imogenroseig) on

"I've suffered for nearly nine years but have been diagnosed for less than two," Imogen, 26. "In 2013, I went to hospital as I could barely walk. After pleading with doctors not to send me home, they operated on me. But despite the fact I have an extensive family history of endometriosis, they still insisted I didn't have it. I was made to feel like it was all in my head but last year I finally found a specialist who understood.

"I have left one job, because the pain took over my life and the medication made me drowsy, and the issue of fertility is a big pressure on my relationship. I've had a lot of young girls message me for advice on getting diagnosed after seeing my videos which is incredible. I don't want people to feel alone like I did."

"People have mistaken me for being pregnant. I can feel my skin stretch"

"It was very hard for me to get a diagnosis,'" says 24-year-old Kayla. "It took me over 11 years. I was misdiagnosed multiple times with Irritable Bowel Syndrome (IBS), being told it was all in my head, and even had a doctor do the diagnosis surgery and missed my endometriosis.

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"Another doctor reviewed the surgery five years later and saw it in the images from surgery and wanted to know why I wasn't diagnosed sooner.

"I started modelling when I was about 16 and as I've got older, my endometriosis has affected it more and more. It makes me bloat, makes me unreliable, and kills my confidence.

"I had a photography business that was a lot of hard work, physically it's exhausting. I slowed that down a ton because my body struggled to keep up. I had an online clothing boutique during my second surgery, when I got diagnosed.

"I ended up closing the store down a few months after my diagnosis surgery because I couldn't keep up. Mentally and physically I couldn't do it anymore.

"I've not had to stop working due to endo, however it's made working difficult. It's hard to find an employer that understands and can take it into consideration.

"In 2015 my doctor told me I was on a 'time crunch' to have kids. I am not there in life, so I am not sure how my fertility will be effected.

"However it's my biggest fear that endo will steal that from me. All I want is to be a mommy and have a large family.

"My body image has suffered so bad because of endometriosis. I can bloat to look five months pregnant. It's so painful and I can feel my skin stretch. It's embarrassing, especially when trying to maintain a body image due to my modeling career.

"I've been congratulated on my pregnancy, but I'm not pregnant. I have two wardrobes- one with cute skinny jeans and blouses and one with maternity stretchy pants and oversized T-shirts.

"I struggle shopping, getting dressed in the mornings, and looking in the mirror and seeing a big belly. If there was a baby in there, I would be ecstatic to have a belly.

"But to know it's caused from a condition destroying my body, it's upsetting. I strive so hard to build up the confidence that endometriosis has taken from me.

"I talk about my condition publicly because it's my way of coping. If I don't talk about it, my pain and heartache, and loneliness is bottled up and that's not healthy.

"I love to talk about my story in hopes that it will save another woman's life, fertility, and health. I want women to know it's okay to talk about our bodies, have concerns about our bodies, and to take care of themselves.

"Endometriosis is something that's not well known yet. There are a lot of myths and lies floating around and I want to educate others about this condition.

"I want to be a voice for others and myself. I want to raise awareness, encourage a cure, and calm the anxieties that women have about endometriosis."

Topics: Life News

Amber Ascroft

Amber is a freelance beauty editor and lifestyle journalist. She's written for the likes of STYLIST, Red, Harper's Bazaar, Mail Online and Good Housekeeping and starred on ITV's This Morning.

 

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