There are many reasons why the National Health Service lists endometriosis as one of the most painful health conditions one can have. Because the inflammation of tissue that grows outside of a woman’s uterus reacts to her period, it is often assumed that the pain is isolated to the duration of her menstrual cycle when in fact most people living with endo experience moderate to debilitating pain most of the time.
Depending on its severity, people living with endo treat their pain with painkillers, physical therapy, home remedies and natural healing. A common complaint is that the pain is so intense, it is difficult to get out of bed or to walk down the hallway. While these people may seemingly look fine on the outside, those with chronic illnesses have become masterful at hiding their suffering out of necessity to maintain jobs, relationships and social lives.
A deeper issue of its invisibility is the inability to identify and connect with others who have the same illness. But social media, specifically Instagram, has changed the game for many endo patients who have dedicated their accounts to raising awareness and finding and providing support and resources beyond what their doctors have prescribed. This movement has paved the way for endo sufferers to take it upon themselves to invest in a cane or other mobility device to help them walk on the days where their symptoms are dire. Online, they have found the strength to use a visible aid for an invisible illness that is not only immensely helpful but empowering to them and the endo community.
We spoke with four inspiring women who have chosen to use canes or other mobility assistance devices to help them manage their endo symptoms and increase their ability to get from point a to b more comfortably. They talked with us about the pros and cons of having a “visible” disability, people’s reactions to having mobility assistance and being bold endo advocates fighting for better treatment options, awareness and a cure through sharing their very personal stories and photos.
Alexandra Cartlidge, Age 33, Solihull, England, @missalexclaire
Alex is a 33-year-old tattoo artist living in Solihull, England. After 18 years of symptoms, she was diagnosed with endometriosis in 2017. She also battles fibromyalgia, ME/chronic fatigue syndrome and idiopathic neutropenia.
Claudia Wright, Age 28, Perth, Western Australia, @me_myself_and_endometriosis
Claudia Wright is a 28 year old writer living in Perth, Western Australia. After suffering for 16 years, she was diagnosed in 2018. She also battles adenomyosis, fibromyalgia and crohn’s disease.
Hannah Purdon, Age 27, Hobart,Tasmania, Australia, @hannahpurd
Hannah Purdon is a 27-year old-psychic living in Hobart, Tasmania. In pain for three years, she was diagnosed in 2012.
Ashley Kalena, Age 34, Washington, D.C., @ashley_with_endo
Ashley is a 34-year-old YouTube manager for National Geographic living in Washington D.C. She was diagnosed in 2019 after 14 years of suffering. She also battles adenomyosis, fibromyalgia and chronic migraine.
SK: What are your most common endometriosis symptoms? How do you manage them?
Alex: Before (my) excision (surgery), and even after, my most common symptom has always been pain. Painful periods, painful ovulation, and month-long pain. There was constant pelvic pain and extreme and sudden hot stabbing pain that took the wind out of me and made me double over or collapse onto the floor. Painful sex worsened over the years; it got so bad I was scared of having sex. Arousal is painful, having an orgasm is painful, as is penetration, etc.. After intercourse, the pain can leave me bed bound for days as my pelvis flares.
Lower back pain, pain spreading into my thighs and hips makes it difficult to walk. Every step sends shooting pain through my pelvis. Extreme fatigue. Nausea so bad I could barely eat and lost over 20kgs, GI problems such as constipation and diarrhea. Painful bowel movements and bleeding/passing clots during bowel movements. Rectal pain so bad I can’t sit down. Extreme bloating where I appear to be six months pregnant. Heavy, erratic, and long periods. When I had periods, they always lasted a minimum of 10 days, I would soak through super tampons within 20 minutes, soak through the thickest pads and pass blood clots constantly.
In terms of managing (the pain), I have tried various contraceptive pills but cannot take them anymore due to a long standing headache condition. I have taken every pain killer from anti-inflammatories, Codeine, Tramadol and Oramorph and tried all sorts of alternative therapies. I was at such a loss I didn’t know what else to do. At age 32, even though I knew the risks, I went through chemical menopause.
The things I keep coming back to (sadly) are opiates and heat. I have permanent burn marks on my abdomen and thigh due to the use of hot water bottles. Before my hysterectomy, I planned my life around my periods and ovulation. I planned (to do) nothing when my period was due: no holidays, no events, nothing. And when I had my period or I’m ovulating, I am in bed on painkillers with a hot water bottle.
Claudia: Chronic pelvic pain, severe contractions like cramping with and without my period, irregular bleeding, heavy bleeding with clots, fatigue, constipation, pain with ovulation, nausea/vomiting, pain with sex, trouble urinating, migraines — the list goes on!
Hannah: My most common symptoms are constant pelvic pain (I’m always in pain now), flares which make me unable to walk and I have to crawl around my house, severe bloating that makes me look like I did when I was 25-27 weeks pregnant and intense nausea. Also, I can’t have too much physical intimacy because it’s so painful and triggering to my endo and organs.
I manage these symptoms by not wearing tight clothing which means no jeans anymore. I use heat packs and hot water bottles, take contraceptives constantly to skip my periods because period pain and ovulation is debilitating to me. I do pelvic floor exercises daily to help with my pelvic floor dysfunction and to help make any type of physical intimacy/sex not so painful and avoid feeling like I am being jabbed in my private area with a hot knife. I also take slow release pain meds to keep the pain at bay. These help but do not cure my pain, they only help manage it slightly.
Ashley: I have many symptoms related to my chronic illnesses: endometriosis, adenomyosis, fibromyalgia and chronic migraines. Endometriosis is a full body disease, which connects to the rest of these other chronic illnesses. I have pelvic pain every day that varies in intensity. I also have intense back pain, which sometimes leaves me bed bound, as does the pelvic pain. There are other pain issues such as joint pain that can be unbearable and can seemingly come out of nowhere. It hurts to sleep.
I try many things to help manage (the pain). Not only do I take many medications daily, but I have a strict regime of vitamins and supplements to include natural elements as well. I am a true believer in medical marijuana and CBD, and use it in many forms. Lotions and balms are incredible for joint pain, whereas tinctures and smoke are good for nighttime pain. I also think massage and physical therapy are key to helping an aching body. I regularly get massages to work out my always sore muscles. I do cupping, dry needling and chiropractic work as well to help release other tension and toxins from my body.
I knew that I needed a mobility aid long term which is when I bought a cane. Nobody recommended it to me, I just realized I couldn’t do life without help anymore.
SK: When did you first get a cane? Was it recommended to you?
Alex: I first got a mobility aid when I was waiting for my hysterectomy. After excision surgery, I was still in a significant amount of pain and was (also) diagnosed with adenomyosis. I was relying more and more on heavier pain medication to get by and was bed bound a lot of the time. The pain was deep and spreading into my hips and lower back to the point where I could barely walk. While shopping one day, I was literally stuck in a shop because I couldn’t move and realized I needed help. I would have had a wheelchair if someone had suggested it to me. So I bought myself a crutch, only planning to use them until my operation. Post-op, I was (additionally) diagnosed with fibromyalgia and chronic fatigue syndrome. I knew that I needed a mobility aid long term which is when I bought a cane. Nobody recommended it to me, I just realized I couldn’t do life without help anymore.
Claudia: I first got a cane last August after I was physically deteriorating a little more than expected. I also suffer from adenomyosis, fibromyalgia, hypermobility and pelvic floor dysfunction as well as endometriosis, so the combination can be incredibly painful and difficult to manage. I had spoken about it (a cane) with my doctor and my physiotherapist but ultimately it was those (women with endometriosis) brave enough to share their stories online who helped me make the choice.
I read on a post, ‘If you’re thinking about buying a mobility aid, you should already have one,’ and that sentence really struck a chord (with me). I realized not all people are contemplating whether or not they need a cane, so if I was, I was clearly struggling. A few endo friends of mine who use canes also gave me the little push I needed and I’m glad they did.
Hannah: I first bought a mobility assistance car wedge for my driver’s seat when I realized that sitting in a car for over twenty minutes at a time was very painful for my lower back and pelvic area. It would send me into severe flares and I would avoid driving anywhere that took longer than 20-25 minutes. It was the best purchase I have made!
It was never recommended to me but from reading her posts, Claudia (@me_myself_and_endometriosis) made me feel a lot more comfortable about seeking mobility assistance! She made me feel like I wasn’t crazy for getting that kind of thing to help myself. Initially, I felt a little crazy to be honest like maybe I was being dramatic but it has helped (me) so much that I no longer feel that way anymore. I now really support the idea of mobility assistance and endo.
Ashley: A cane was not recommended to me. In fact, several of my doctors questioned why I was using one even though they’ve been treating me for pain. Sometimes, this is more about empowerment than an actual medical recommendation. I was having issues walking from pain and this makes me feel more confident.
SK: What was your first reaction to the idea of using a cane? Describe your first outing with mobility assistance. What kinds of reactions do you receive?
Alex: At first, I was really depressed at the idea of having to use a cane. When I first started using it, I was highly embarrassed. Because of my age and not having anything visibly wrong with me, I felt like I had a giant target painted on me. I got stared at A LOT and still do. I was also asked a lot why I needed it and what was wrong with me by complete strangers which embarrassed me even further because I wasn’t prepared for that.
I’ve been using it now for a couple of years and I still get stared at. I get a lot of ‘You’re too young to be needing that,’ and people always assume I’ve twisted my ankle. I don’t mind it so much now; I know it helps me and I know I need it. But there are still days I hate it and am really resentful.
I know it helps me and I know I need it. But there are still days I hate it and am really resentful.
Claudia: My first outing was difficult and very eye opening. I was expecting the stares…and they came. What I was not expecting was the amount of strangers who felt it was appropriate to ask me bluntly about the cane before even saying ‘hello.’
Hannah: I haven’t had any bad reactions so far, to be honest. Most people see how much pain I am in, how regular it is and have never judged my decisions when it comes to my health.
Ashley: In August 2019, I realized using a cane would help me walk with more confidence while experiencing pain flares and severe back pain. The first people to see me with it were my co-workers. That day, and still to this day, I get questions like, ‘How did you injure yourself?’ Everyone assumes I physically, outwardly injured myself. Then I explain that I have multiple chronic illnesses and the cane helps me walk with more strength. My cane is leopard print. If I’m going to use a cane nearly everyday, I’m going to make it fashion.
A lot of people won’t even acknowledge my cane, which is honestly easier for both of us. Some people think I have a physically outward injury and will ask how I hurt myself. Once I tell them I have chronic illnesses and this (a cane) helps me walk better, most will nod their heads and say ‘whatever helps,’ but there are the rare few who ask me to explain my illnesses to them so they can be better informed.
SK: Do you think it helps people understand the severity of an invisible illness?
Alex: Yes, it absolutely helps people understand the severity of the disease. Endometriosis is invisible to outsiders. You have this war raging inside your body that nobody else can see, so having something visual that shows that you are struggling definitely makes others think twice.
Claudia: I quickly realized the hard(est) part about using the cane is not that it takes my invisible illness and makes it visible, but that my illness is still invisible, just now joined by an unexplained visible aspect strangers seem to need an explanation for. (I get) stares, a lot of stares. And way more questions than I would ever feel comfortable with.
What I have gathered from my public outings is that it seems short-term injuries are more acceptable, entertaining and worthy of further attention than long-term impairment. People seem much more excited to hear that I had a surfing accident and broke my ankle rather than me suffering from a number of invisible and incurable conditions that causes me some sort of physical pain every single day.
Disability looks and feels different for everyone. No, I don’t need to use the cane every single day and that’s fine because there is no ‘one disabled look.’
Sometimes I think I still look completely healthy and well, just now using a cane and that can be even more confusing for people. But despite the misunderstanding from the outside world, I am worthy of using the tools I need to help me cope with the life I have been given. I am worthy of the freedom the cane provides for me on days it may feel impossible to get out of bed. My pain, fatigue and level of physical impairment are all very valid.
Disability looks and feels different for everyone. No, I don’t need to use the cane every single day and that’s fine because there is no ‘one disabled look.’
Hannah: I do! My partner was really supportive of the idea. Seeing me in pain, he knew that if it helped then it was worth it! My mum experienced pain when she was younger, and even now with the same type of issues, she has said that she wished she’d done the same (for herself) when she was my age.
Ashley: I think my use of a cane has made people hear the word ‘endometriosis’ for the first time. Many people that I work with have said they’ve never heard the word until they met me. When 1 in 10 women suffer from this horrific illness, that should not be the case.
I also think when people hear fibromyalgia, they think of just generalized pain but don’t know what it is. It’s at least the name is more well known. So, when I’m seen with my cane and I say it’s for chronic pain, it’s more of a shock. I do get the ‘but you’re so young.’ And sure, that may be right, but chronic illness, especially endometriosis, has no age requirements for membership.” (note to Ashleigh: there is an age requirement — you have to be of reproductive age)
SK: Do you recommend a cane to other endo sufferers? If so, what advice would you give them?
Alex: I would definitely recommend a cane (to other endo sufferers). It has helped me A LOT on days where the pain is too much or the fatigue suddenly hits me. It’s really scary going from having an invisible illness to suddenly having something that lets people see that there is something wrong with you. It puts you in a very vulnerable place. But ultimately, you have to see it as something that is helping you. We struggle so much already with endo, to be taken seriously, to be heard, to get by day to day that if something like a cane can help you even just a little bit, accept the help.
Claudia: I recommend a cane to anyone who feels like they need a little more assistance when struggling with the realities of this disease. My first mobility aid purchase was a shower chair and the cane was second. Both have been fundamental in me coping during my hardest days.
You know your body better than anyone. If you feel like you need help, seek it out.
Your pain and your symptoms are valid. Try not to let the thoughts of others affect your decision to help yourself. They don’t have to walk in your painful, fatigued shoes every day.
Try not to let the thoughts of others affect your decision to help yourself. They don’t have to walk in your painful, fatigued shoes every day.
Hannah: I 100% recommend mobility assistance! I think the taboo needs to be lifted. It (endometriosis) needs to be seen as a common thing, as normal for those who suffer chronic pain issues no matter if it’s endo or any other illness!
My advice (for endo women) is listen to yourself. If you feel like you need mobility assistance and your doctor isn’t listening, then keep searching until you find someone who does! Kmart now has mobility assistance items, so even knowing that we have more access to mobility assistance equipment without a big price (tag) is amazing!! I think that you can’t be afraid to break the stigma; the more people who jump on this bandwagon of pushing past the stigma and beliefs around chronic illness, the better!! You know you better than anyone else does!
Ashley: Using a mobility aid is a deeply personal experience and decision. It’s up to the individual whether or not they want to use one or not. For me, I do not regret my decision. If you find you are in pain, and that pain causes you to physically hold on to others or objects so you don’t fall, or you have lost confidence to walk because of pain, I’d recommend trying a cane. At first, it could be used around those you trust or to a doctor just to get used to it. For me, I gained confidence. I hope it could do the same for others.
SK: Your Instagram feed acts as an endo awareness blog and community for endo warriors. What’s the best part of having visibility on social media?
Alex: The wave of awareness we are creating. It is so empowering to see so many women take the situation into their hands, to share the mistreatment they have been on the receiving end of, the gaslighting and to say ‘enough is enough.’ You will hear us, you will see us and you WILL do better for the next generation of women with endo. We are trying to spread the correct information, the correct and best treatment options and share our knowledge of the best doctors around because there are SO few. It (social media) has created this incredible network of insanely strong and compassionate humans that I am lucky to now call some of my closest friends. More than anything, it makes us feel less alone.
We are told, sometimes for years, that there is nothing wrong with us, that we are making a big deal out of nothing, that we just need to get on with it, to the point that we started doubting ourselves. On social media, there is this tribe of women who are all going through the same thing, ready to jump to each other’s defense and support each other along the way. It’s an incredibly special thing to be a part of.
There is no cure for endometriosis, and that alone is terrifying, but to have to overcome the lack of empathy from medical professionals is just heartbreaking. Can we please get more support for our mental health?
You will hear us, you will see us and you WILL do better for the next generation of women with endo.
Claudia:The awareness, the connection, the community. Collectively, we are all doing so much in our hometowns and across the globe. It’s amazing to see. The movement and change for endometriosis treatment will absolutely be pushed along by the grassroots efforts of us all and that makes me really proud. But my favourite part of all is all the connections I have made with other endo warriors. I spent all of my adolescence and young adult life not knowing what was wrong with me and not knowing a single person who understood what I was going through. Now I have thousands of people who ‘get it.’ We are all in this together.
I hope that me sharing my story helps others navigate theirs. I want endometriosis and its severe impact on a sufferer’s life to be recognized. I want others to feel comfortable talking about their pain and what they are going through. I want people to know that this illness can steal all basic bodily functions from you, all the while you look completely normal and healthy on the outside. I want my page to raise awareness, connect other warriors, provide hope and to make those with endometriosis feel beautiful.
By showing my cane publicly, I wanted others to see (know that) their pain is valid and they are worthy of using the tools they need to get by.
Ashley: Social media helped me wade the waters of endometriosis when everything felt dark and scary. When I first heard the word ‘endometriosis,’ I didn’t know how to react or change my life to accommodate my newly named illness. Should I change my diet? Take supplements? What doctors should I go to? What brands are best to seek out for loose clothes, CBD, organic food, etc.? Everything felt overwhelming. Then I discovered this huge, connected, honest and supportive network on Instagram and things felt less scary. That’s why I changed my account into an educational and awareness one for all my illnesses, because if I can help even just one person feel less scared or alone, then I’ve accomplished something. They call us ‘Endo Warriors’ for a reason because we are all in a fight but it is something we are in together.
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