This Is What It’s Really Like To Live With Endometriosis
Endometriosis occurs when the internal tissue of the uterus is found in other areas of the body – this may be the ovaries, around your tubes, or even on the bowel. Those affected – one woman in 10 of reproductive age – will experience some, or all, of the following: painful periods and sex, fatigue, irregular and heavy bleeding, and even, infertility.
These symptoms vary in severity. Padma Lakshmi sidelined her acting career because of it. Susan Sarandon says she missed out on many things because of the way in which it seized her body. Lena Dunham had a hysterectomy to end the complications the condition brought about. And Halsey has been vocal about her struggles with the affliction.
Despite this, though, endometriosis is critically unreported and there’s a serious lack of awareness surrounding the condition. In part, this is because it’s often misdiagnosed (there’s no definitive cause or cure and pain is difficult to quantify). But, sadly, after years of being bypassed and referred to euphemistically as “women’s troubles”, many people still do not recognise the long-term effects this condition can have.
After experiencing “extreme pain” in 2015 and “sitting on the toilet for days passing blood clots”, Ellie Kammer sought medical advice. In 2015, after a lifetime of heavy, painful and long-lasting periods, Ellie was finally diagnosed with Stage 2 endometriosis. “It’s not a disease where you simply have painful or heavy periods”, explains Ellie. “It’s where cells and tissue grow where they should not. It can cause serious issues especially when the cells start to form lesions and strangle your organs”.
Ellie, an Australian-based artist, now channels her own experiences into an ongoing art project, which she describes as “a personal documentation of my experience living with endometriosis. I want to try to put into images what the reality of this disease can look like”.
Below, Ellie talks to us about her chronic pain and the effect it has had on her life.
Tell us about your experience with endometriosis
“I was diagnosed in 2015 via single incision laparoscopy through my belly button. I had excision surgery at the same time and this took a long time to recover from. Endometriosis is not an autoimmune disease, but it does have an autoimmune component and this was making me very susceptible to infections. I’ve spent many nights in emergency rooms with urine tract infections. In fact, it’s been years since I didn’t have an infection.
“In 2017, I started to experience new symptoms. My urine was brown, but I had infections all the time so this wasn’t something I thought about too much. I had a crazy fever too, and I was in some pain. I put it down to an endo flare up maybe coinciding with flu so I slept for a day. I woke the next morning in a pool of sweat and couldn’t move an inch. I decided to go to the hospital. As I was in the emergency room, the pain became increasingly more and more severe.
“It turned out I’d had a bladder infection, that had gone unnoticed because I was so accustomed to pain. The infection had spread to my kidney and into my blood. I was treated for sepsis and had my vitals monitored closely. A couple of weeks after this had happened and I had taken so many antibiotics, my bloody urine hadn’t cleared up and I was still in pain. I saw my gynecologist who booked me in for urgent surgery. She excised my endometriosis – which had riddled my body again in just two years – dilated my urethra to give me a narrower chance of contracting bladder infections, inserted a Mirena to treat the endometriosis symptoms and diagnosed me with Adenomyosis, endo’s cousin.
“This saga is a window into life with endometriosis. It’s always like this for me. One health drama after another – it’s exhausting”.
It’s so hard to quantify pain, but when did you realise it was too much?
“I realised something was seriously wrong when I was travelling in 2014. I’d had problems with heavy, painful and long-lasting periods for years prior and having been told by a number of GPs that this was ‘normal’, I just accepted that this was how life would be for me.
“But, in 2014, I found myself in extreme pain in a hotel room in France. The kind of pain I had never felt before – I was having to sit on the toilet for days passing blood clots. For three week after this incident, I felt extremely emotional, I looked like I was about six-months pregnant and the bleeding just would not settle. When I got back to Australia, I started to investigate with my GP, then the gynaecologist and about six months later, I had surgery for the first time and was then diagnosed with Stage 2 endometriosis”.
What are some of the misconceptions attached to endometriosis?
“It’s not a disease where you simply have painful or heavy periods. It’s where cells and tissue grow where they shouldn’t. It can cause serious issues especially when the cells start to form lesions and strangle your organs.
“I know plenty of women who’ve had bowel resections, hysterectomies, oophorectomies and cervical removals. It can be absolutely devastating and because of its association with menses, not enough people care to consider it’s true impact. It’s a life-long condition with limited treatment options, the treatment options aren’t available to everyone and they’re insanely expensive for both the sufferer and the government.
How would you describe the pain you experience?
“The pain is different for everyone, but for me it’s as if there is an elastic band between my knees and my uterus. It’s there on a daily basis. It feels as though my organs are being pulled down, and it creates a radiating heat and a dull ache through my torso. Sometimes I experience dragging sharp pains in my legs too.
“My adenomyosis causes musculoskeletal pain, which I feel mostly in my hips and thighs. It’s a deep, sharp pain and it can be debilitating. The adenomyosis also puts pressure on my bladder, it can feel like you have a urine tract infection every day. I also get referred pain in different areas from time-to-time.
“One of the most frustrating pains adeno and endo causes is painful sex. I once read a comment in a forum by a woman with adeno who likened that pain to being raped with a hot fire poker. At first I thought it was an outrageous thing to say, but then I thought about it for a minute and she’s quite right. The pain is hot and hurts like hell and when you’re doing something that is supposed to be pleasurable, and you suddenly find that it feels like you’re being torn in two, it starts to feel like violation. I find this to be one of the most difficult symptoms to deal with physically and emotionally”.
Is there anything that helps to soothe it?
“The Mirena has changed my life. It’s a controversial contraceptive approach and it really only works for about half the women who try it. For other women, it can wreak absolute havoc on their bodies. Personally, I don’t really know how I lived before I got it. I rarely have periods at all and the pain has significantly decreased.
“I would also recommend the Mona Lisa Touch to any woman who is struggling with painful sex. Being on contraceptives for a long time can sometimes cause vaginal atrophy which makes sex even more painful. The laser therapy stimulates new cell growth and it makes a huge difference.
“Removing soy, cow products and reducing sugar intake in my diet has helped enormously too, especially with the bloating”.
How has your art helped your endometriosis?
“It’s interesting, because you see an array of doctors and gynaecologists and their advice is always slightly varied, but one thing I’ve heard them consistently say is ‘try and meditate’. I’m not really one for your typical crossed-legged, hum-style of meditation, but painting works a dream for me. It takes me out of my body and into a pain and worry-free space. In my opinion, it is essential for endo sufferers to figure out how to make meditation work for them. Art and painting works for me”.
Do women suffering from endometriosis outreach to you as a direct response to your project?
“I get messages, emails, comments from women with endo all the time. Every day. I’m really touched that my work resonates with them and encourages them to speak out. Of course, not everyone feels the same way about my pieces, and not all women with endometriosis struggle with living their secret endo life… but for the ones that do, I think my work serves as a sort of an invitation to speak about it.
“I feel that Australia is probably a front runner in understanding and conversing about endometriosis and a lot of women worldwide are not as lucky as I am. I talk about it all the time, but they don’t really have the opportunity to and I love that they’re starting to open up about it and become enlightened to the fact that it’s neither fair nor acceptable to suffer in silence”.
What do you hope anyone viewing your paintings will take from them?
“I’d just hope that the images evoke any sort of feeling. For women with endo or people who know of endometriosis. Maybe it’s comfort or empowerment. For others maybe it’s disgust. All reactions are important, they make us ask a follow-up question. I guess that’s what I hope for, that follow up question”.