Although awareness about endometriosis may be on the rise, it remains a widely misunderstood disease which affects 1.5 million people in the UK.
Endometriosis occurs when cells mimicking the lining of the uterus are found elsewhere within the body. These cells build up and bleed, but unlike during a period, have no way of escaping. Symptoms vary from person to person, and can include chronic pelvic pain, painful periods, painful bladder and bowel movements, and sometimes infertility. And endometriosis can occur all over the body, not just in the uterus — it has been identified everywhere from the pelvis to the bowel to the bladder to even the lungs.
Endometriosis can be a hugely frustrating condition: the average diagnosis takes 8 years and there is no current cure. I spent almost a decade trying to find out why I was experiencing symptoms including intense pain, fatigue, and heavy bleeding.
Finally diagnosed at 23, it has been an ongoing experience that has permeated every aspect of my life since my early teens. From collapsing in the office to keeling over during nights out to feeling too exhausted to catch up with friends and constantly wanting relief, I’ve lived with endometriosis for 20 years. Endo is the reason I’m a freelance writer, as years ago, I was unable to become established at work due to mounting sick days.
Everything you need to know about endometriosis.
But, I’ve also built up a coping strategies toolkit. Read on for a few practical things to help if you have endometriosis and please do speak to your doctor for professional help.
Treatment options for endometriosis
First of all, let's talk about the current state of affairs when it comes to treatment of endo. There is still no known “cure” for endometriosis, so most women will find themselves being presented with a series of options to help deal with their symptoms — usually, the two symptoms women seek help for are pain and infertility.
The NHS's first step will probably be to suggest pain medication. Many women are frustrated to learn that the NHS guidance is simply to offer over-the-counter pain relief.
Other options include hormone treatment, going on the combined oral contraceptive pill, and, in severe cases, surgery. Of course, these options all come with potential side effects. Plus, going on the pill may not be an option for women who are actively trying to become pregnant.
The reality is that the medical community still doesn't have a real answer for endo — but progress is being made. "We're starting to look at endometriosis more as a chronic (long-term) pain condition, rather than focusing on removing the adhesions," said Dr Andrew Horne, gynaecologist at the University of Edinburgh to GLAMOUR. "So there's research into what drugs might better help – antidepressants or anticonvulsants, for example. The Holy Grail of treatment is something that targets pain while also resolving lesions."
Unfortunately, that treatment doesn't exist yet, so women are often left managing their symptoms largely on their own. Here's what I learned about dealing with endo.
Learn to advocate for yourself
Articulating symptoms and concerns when you’re most physically and emotionally exhausted can be hugely difficult. In fact, it may feel impossible. But you are your own best advocate and know your body better than anyone. Even a medical professional. Endo sufferers report feelings of not being taken seriously, or having their symptoms diminished. Once labelled “an anxious little thing” by a doctor, I’ve also been told it’s all in my head. I spent decades learning the sheer importance of speaking up. Above all else, remember that your own experiences are completely valid.
During medical appointments, reiterate what impact endometriosis has on your life, and list questions you’d like to ask beforehand. Get a second opinion if you aren’t satisfied with the quality of care given. When lockdown eases and it becomes a possibility, take a friend, partner, or family member to your appointments. They can remember what is said, or even just accompany you there, so you can run through what you’d like to discuss or explain.
Talking of charting symptoms, Sora is a brand-new app for endometriosis, designed to be like a virtual healthcare assistant. As well as tracking user insight and potential pain triggers, it will provide community support and information about treatment and pain management.
Seek the best support
Don’t ever feel you need to absorb anyone’s unsolicited advice about supposed quick fixes or adopting a more positive attitude. Acceptance is key and if you’re finding it tough, it’s tough.
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Tell friends what you need from them during a flareup, whether that’s space or extra comfort. Look at Instagram accounts including @thisisendoglobal @georgiewileman @michellehopewell and @mummyspaininthearse, for people normalising endo talk.
Check out Bodyform’s latest taboo busting campaign exploring the reality of endometriosis pain, searching their hashtag #Painstories. I find @thisthingtheycallrecovery helpful too - Jenny articulately depicts enduring chronic illness.
Endometriosis-UK.org has a section covering seeing an endometriosis specialist. Plus, you can download a consultation questionnaire and access the NICE quality guidelines for optimum endometriosis care. Endometriosis UK are your go-to place for seeking information on specialist endometriosis treatment centres, as well as pain management clinics and physiotherapy. Vitally, the charity can provide help with asking your workplace to become an endometriosis friendly employer, and signpost you towards personal stories covering managing endometriosis at work. They also offer a supportive team to call, online community and local groups.
Prioritise self-care
Set boundaries in place when you need to take a rest day/week/month, be it within your own mind or to anyone else. You don’t have to justify yourself or apologise for taking a beat. Aside from the treatment and painkillers, heat therapy has always been my saviour. That and Epsom salts in the bath. Never without heat packs, I’ve recently discovered the YuYu bottle, which is a long hot water bottle you wrap around your body.
Endometriosis is inextricably linked with emotional implications. My own experience has included numerous operations, hormonal treatments, and invasive procedures. Due to developing excruciating sister condition adenomyosis (where the lining of the uterus breaks through its muscle wall) I needed major surgery in 2015. Unable to have any more children as a result, I was heartbroken.
Battling grief, I felt guilty, as I knew I was lucky to have two kids (despite being told this may not happen) and somehow invalidated my own struggle. Which I think again, is something endometriosis sufferers know all too well, because we are forced to continue wading through debilitating pain while life goes on around us. Feeling unable to process it all, I began having nightmares and sought help from an incredible women’s health psychologist. We unpicked the layers of loss and medical trauma endometriosis can be implicated with. I’d recommend looking for talking therapy wherever possible.
Know living with endo isn’t a one size fits all process
People with endometriosis encounter vastly different symptoms and their severity doesn’t always correlate with the amount of disease present. It’s a complicated condition, and your own experience and needs may not be the same as someone else’s.
I found going mostly gluten and dairy free helped a bit, and some swear by trying the low FODMAP diet for easing digestive issues and accompanying bloating. This includes cutting out short-chain carbohydrates such as bread and milk while focusing on foods like meat, fish, eggs, rice, fruit and veg. The premise is you may eliminate potential triggers and see which (if any) foods exacerbate symptoms. Do your own research, and seek expert nutritional advice when in doubt, though.
Remember you’re not on your own
Living with endometriosis can feel extremely isolating, and it’s crucial to know you’re not alone. Whatever the extent of your symptoms or treatment options suggested, above all else- don’t struggle in silence. Be sure to access all the help available, as you so rightfully deserve.
All stats from Endometriosis UK.
