Endo has tortured me over the last 10+ years. Affecting my bowel, bladder, ovaries, fallopian tubes, uterus … oh and it’s stolen my appendix too.
By 24, doctors were telling me I should be getting pregnant before endo takes over, in amongst explaining I was getting bladder issues because I was maybe ‘having too much sex and/ or have chlamydia;’ and there’s not much else they can do apart from ‘popping a paracetamol’ or having a hysterectomy.
I’ve had 4 laparoscopies in 4 years, sometimes graced with over 5 UTI’s within an 8-week period and spent most days since my diagnosis excessively googling.
Despite this, I thank my endometriosis.
I’m not fobbing endo off as easy. But I question who I’d be without the people I’ve met and the hardship the diagnosis has brought.
Looking on endo forums is overwhelming. Floods of information about the incurability of the condition can take its toll on mental health. Instead, I’ve compiled a list of strengths found within, in the hope that positive light can be shed on the destructive impacts of chronic illness.
Praise one: communication
Having an ‘invisible’ condition means that communicating verbally is almost the only way to get proper help.
People won’t always be there for you and that’s okay, people have stuff going on too. The more you talk the more you will build a network with more options of support. Most people genuinely want to help; it’s surprising how much people are willing to go out of their way once you do voice things.
If you’re worrying about ‘what ifs’, remember: they might never happen…but if they do- you’ll have worried twice.
Praise two: community
Without endo I wouldn’t have met so many incredible people or had such in-depth conversations. It’s made me appreciate the bravery of others to express their thoughts too; I never realised the power in that until I started being more open.
Off the back of writing/reading, I’ve bonded with people for life who know exactly what chronic pain is like; each of us passing on snippets of gold-nugget-esque advice.
Praise three: resourcefulness
Over-researching, reading articles about infertility, colostomy bags and suicide is devastating. Whilst critical to discuss, I’ve found the negativity impossible to process and have stopped reading forums. Instead, I’ve tried to tailor where I find learning resources- filtering the helpful from the destructive.
-Writing down questions to ask my gynaecologist.
-Speaking to others with endo.
-Googling words from hospital letters.
Praise four: self-care.
I don’t mean, facemasks, eating ice cream and binge watching the whole of Love is Blind in a day. Although this is the definition of a perfect day, having endo has taught me to learn better self-care.
Sometimes illness doesn’t make routine possible. But this is what has helped me:
-Asking to be referred to a urologist, who has now put me on 1 antibiotic after sex and prescribed an emergency supply of antibiotics.
-Urine analysis strips so I can dip test at home.
-Cutting out high acidity, bladder-irritating foods.
I used to push my body- embarrassed that it didn’t ‘work’ in ways I felt was normal; or worried someone run a mile as soon as I mentioned a ‘condition’. Certain positions were painful, I’d get dry, re-occurring UTIs and friction burn from condoms.
It can be as casual as a ‘hey, I have endo and certain positions can kinda hurt- we might need to switch’.
In having these conversations, you are giving yourself the ultimate self-love. It’s a base level boundary for me now and has saved a lot of relationship toxicity.
Praise five: resilience
Spending nights on drips then working a 16-hour day with a heat pack strapped to my stomach. Spending a sleepless night on the floor in pain but still making that job interview. Laughing off the fact I’ve just bled through my clothes onto a café chair whilst dying of embarrassment inside? I’m gonna call the resilience too. I think people underestimate their own resilience all too often. Endo has made me reflect on times I’ve managed to push through despite feeling unable to at the time.
Whilst this might not be a shining essay on endo’s many wonders, I hope it’s made you see your own strength and resilience. It’s hard to see that when you’re going through something. Sometimes the tiniest of tweaks can make huge changes. There are always opportunities to grow from where you are now, and for teaching me that; endo I thank you.