Moving Pictures That Show The Exhausting Reality Of Living With Endometriosis

For a condition that affects so much of a person's life, it is a disgrace that we know as little as we do about endometriosis. And yet, here we are.

It's 2021 and endometriosis, a condition which causes severe pain and disruption to a sufferer's life, which can require major surgery and lead to infertility and other complications, remains incurable. Not only that, it takes the average woman between seven and nine years even to get diagnosed, which means years of suffering and advocating for oneself while navigating a complicated medical system.

For Endometriosis Awareness Month, Swedish-British photographer Ester Keate took pictures of 18 women who've been living with the illness for her project W I T H I N.

"I watched a good friend struggling with endometriosis pushing to be taken seriously by doctors," Ester explains to R29. "She is such a strong woman and was able to fight to be heard but I just kept thinking how so many women would have just backed down after the first, second or third time they were turned away by doctors and told 'it's just period pains'."

"I wanted to do something to help inform other women about this condition and hopefully give them the confidence to fight for a diagnosis themselves, and ultimately to change the dialogue enough that people feel heard and don’t need to fight to be diagnosed."

Many of Ester's pictures focus specifically on the surgery scars of her subjects. And for good reason. Part of the explanation why endometriosis so often goes undiagnosed and is still widely unknown despite being so common is that it is an 'invisible condition'. For many sufferers, there are almost no outward signs of endometriosis. "This makes it very easy to brush off as just ‘normal’ period pain and for doctors, employers and so on to ignore," Ester explains. Scars from the surgeries, then, are often the only external indication that anything is wrong inside at all.

"It was quite a full-on shoot day, with 18 women all in the studio at the same time. I had to have quite a strict schedule to make sure I got everyone’s single images as well and a group picture," Ester remembers. Despite the busy nature of the shoot, she says the atmosphere was really positive. "While they were waiting for their turn, the women were all sitting backstage in their dressing gowns, exchanging stories and asking each other questions. It was a pretty emotional day, there were a few tears but also plenty of laughter. Hearing their stories was heartbreaking at times but also so inspiring. These amazing women had been through so much and had been ignored for so long and yet were willing to share their stories and, quite literally, bare everything in the hope that they might be able to make a difference to even one other woman out there."

She continues: "I hadn’t realised quite how much impact the shoot would have on the women in that way and I have been so pleased that quite a few of them have stayed in touch after the shoot and formed friendships and a strong support network."

Despite the portraits featuring faces, the women of W I T H I N remain anonymous, their words and bodies speaking for the thousands of women who have been prevented from finding their own voices. Ahead lie some of their powerful testimonies, which they have shared to let others know they are not alone. As Ester says: "I hope that for women out there who are suffering in silence, it might give them the confidence to speak up."

"I had never heard of endometriosis before I was diagnosed. I was overwhelmed to finally know after 15 or 16 years, but at the same time I was very angry. I was angry that nobody had found this, despite my symptoms, any earlier. I have lost partners and friends and isolated myself as nobody understood.

"It’s exhausting and emotionally draining dealing with the pain on a day-to-day basis. I now can’t take ibuprofen so co-codamol is the only thing that helps. I only take it if the pain persists all day though so I don’t get addicted. Not knowing when the pain will come is stressful. I always pray on certain days to just be pain-free.

"I found the photoshoot quite liberating. Meeting all these incredible women and sharing our story is very therapeutic. It's nice to meet other women who understand the pain we go through on a daily basis.

For people who are struggling to get diagnosed, I'd say you know your body more than anyone. If you are experiencing any symptoms, don’t suffer in silence and urge your doctor to refer you for a pelvic scan. The more we talk about it, the more awareness we raise to help women all over the world."

"Endometriosis affects my daily life a lot. I get physical pain throughout my cycle, it makes me feel very hormonal and emotional. My self-esteem has plummeted as well as my confidence. I am not the person I should be.

"I am hormonal 24/7, my mood swings are very up and down. I look at myself in the mirror and I’m disappointed. I now have hormonal acne, which is my worst nightmare.

"We need to educate young girls at schools. There needs to be more awareness, women, men, everyone needs to know! One in 10 women suffer and most in silence."

"When I was diagnosed, I felt relieved and finally understood. Then I started to feel really uncomfortable with the fact of being 21 and sick forever.

"Endo affects every second, every decision I’m making. I have to live for my body and not with it. I don’t dress as I want, I just dress comfortable. I cannot hang out with friends without being scared of falling because of the pain. I always walk with a book and close to cafés to make sure that if I feel bad, I have an excuse to have a seat. Every time I travel, I have to pack up my medication bag and check the nearest hospitals and doctors in case anything happens.

"I found the photoshoot a bit scary at the beginning but after a few minutes I felt nearly comfortable with my body. It was a beautiful experience.

"To others going through the same thing I'd say listen to your body and trust yourself. If you feel pain, then the pain is real."

"When diagnosed, strangely I felt glad to be told I had it and a huge sense of relief because it made me think I’m not crazy or weak and my pain is real. It’s a daunting process going into surgery with the potential of being told you do or don’t have a condition.

"I have menstrual cramps most days of the month, of differing strengths. I feel constantly exhausted and lacking in energy. On the day my period comes I have severe episodes where it's as though my body is having an allergic reaction to my period. I pass out, I go from boiling hot to freezing cold. The pain is crippling.

"Emotionally it can make you feel low. You compare yourself to others and wonder why you can’t have pain-free periods. You question if you’re weak or unable to handle pain but really I think I’m stronger than anyone for the pain I’m able to endure. My biggest fear is that I’ll be unable to have children.

"If you have any endometriosis symptoms, make sure you push for further investigations. Too often doctors prescribe painkillers or the contraceptive pill. This is not good enough and can consequently delay your diagnosis. You might feel alone but you’re not, one in 10 women have this condition. And to employers: more sympathy and understanding should be given."

"When I was diagnosed I just felt relief that I was heard. It took six years.

"The emotional impact has been the worst, the feeling of isolation can drive you to despair. There's the feeling you are going mad at times. The fear of being on a stopwatch as to when it will come back is a constant hum in the background of life.

"The shoot made me feel empowered and has helped me rediscover and reclaim a body that I feel at times has been taken over by this disease.

"I want to tell other people who have endo this: girls, you are not on your own. EVER. You will feel shit, and you will cry and you will be sad. But it will be okay, and you will feel strong, and you will see it through the other side. We have one another and there is strength within that."

"I am unable to get pregnant naturally and have had surgery to remove a fallopian tube which was stuck to my bowel by adhesions. Periods are excruciating – I am frequently in so much pain that I am unable to move. Before starting fertility treatment I was taking so much ibuprofen on my period that, I am told, it stopped me from ovulating. Without the ibuprofen I miss two days' work and normal functioning each month, at least.

"Apart from the inevitable emotional implications of infertility, my overriding feeling is anger. Anger that my concerns weren’t taken seriously, that there were no warnings that taking the contraceptive pill could mask symptoms.

"On reflection I’ve had to shut myself off too frequently for so long because of the pain that I’ve become less open, more cynical, less ambitious, more prone to self-reliance and depression.

"Since discovering the condition and getting diagnosed, I can be kinder to myself, I’m better at asking for help and I find it easier to trust people.

"It feels extreme to articulate it like this but I now think that the emotional impacts, like the physical growths themselves, can cause structural changes to personality and consequently can inhibit personal growth and ambition.

"I hope that taking part in this shoot will help me to feel like I’ve done something to help. Endo makes you feel so helpless and wears you down inside so this was an opportunity to do something proactive. It was good to meet other women with the condition – I appreciated that opportunity.

"I think if I was able to help others my focus would be on educating girls and getting routine screening in place so that there can be early intervention and people can make informed life choices. GPs need to treat period symptoms as a red flag. It’s not enough to ask 'How are your periods? Regular? Normal?' and leave it at that. No woman with endo has ever had someone else’s period. We don’t know what normal feels like. Male GPs who are incapable of talking about periods without getting embarrassed should not be allowed to practise."

"It took 25 years to get a diagnosis. I was relieved to know there was a proper diagnosis. I felt betrayed and let down by everyone I had asked for help from the medical community. I felt let down by my own body too.

"My endo has led to my infertility, which has been hard to deal with. Especially knowing that if this had been caught earlier, perhaps something different could’ve been done. I could have frozen my eggs, for example. It does make me depressed from time to time.

"The shoot was scary! But liberating. Felt so good to be among other endo warriors! It was a very supportive environment.

"If you think you have endo, don’t stop pushing for the diagnosis. If you’re not happy with the help or advice you are getting, find someone else. Use support groups – I’m alarmed at how common my journey is, and that is really sad. Endo is an invisible illness; you don’t know what is going on with someone’s personal life. Respect that it is not a painful period – it’s so much more."

"It took seven or eight years to get a diagnosis. It validated my pain, suddenly it all made sense. I finally felt listened to and happy that professionals were wanting to support me but I was emotional too: concerned for my fertility, concerned for what the future holds.

"It used to be that my endometriosis had me fainting at work, vomiting constantly when I was on my period, unable to move, socialise, in constant agony. I had to make a change in lifestyle and dietary requirements. It was emotionally and mentally draining.

"At present, after having five surgeries in the last year and now living with an ileostomy bag, it has been a huge lifestyle change and I'm learning to adapt. I still experience pain regularly but it's much better than before. I'm still restricted dietary-wise. Fatigue/tiredness is what impacts me the most and having to listen to my body.

"The shoot was empowering and made me feel confident.

"I tell others, 'Always put your health first and push for answers. Listen to your body.' You can still live your best life with endo and feel empowered."