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.
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.
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.