Steph, 33, a civil servant and an executive member of the National Endometriosis Sisters Support (NESS). She was once asked by a date if endometriosis was caused by a sexually transmitted infection (STI). Endometriosis is a reproductive health condition and has no relation or link to sexually transmitted diseases (STDs) or sexually transmitted infections (STIs). Women with endometriosis can experience chronic pelvic pain at a young age, even before the onset of menstruation.
The constant battle
Although Steph was diagnosed with stage four endometriosis when she was 26, she tells of how she “battled to get people to listen since the age of 14.” During frequent visits to the hospital, staff were often dismissive of the pain she reported. “I used to go and they’d say “Oh we know her, she can’t handle her monthly”, telling me it was all in my head”, she recounts. The diagnosis was a relief for Steph, who describes how she “just broke down and burst into tears. It was like ‘Okay, so I know it’s not all in my head.”
Steph’s passion for swimming – which, at one point, meant she swam competitively for Leeds – was also jeopardised by the condition. “It was very, difficult because you couldn’t miss training” she explains. “When I did, I would have to explain to the coach and she was like, “Oh well, we all go through [periods], it doesn’t mean you should take time off.” This conflation of endometriosis with painful periods isn’t the only misconception Steph has encountered over the years. “I had one guy ask me “well isn’t it caused by an STI?”” she remembers. These comments aren’t the only way her symptoms cause misunderstandings. “I’m bloated constantly, and I can only live in stretchy jeans or dresses with leggings because I look 6 or 7 months pregnant” she says “I get asked ‘How long, how far are you gone?’.” This particular assumption is an emotionally-loaded one, she explains. “It’s horrible because I don’t think I’ll ever be able to have children.
“I’ve lost so many jobs before in my 20’s, I can’t even count how many jobs I had because I’d wake up and I’d have flooded and I’d be in agony.”
Endometriosis, Infertility & Work
Last week I had a scan which I battled for, for 9 months. I found out that my left ovary is completely fixed, they can’t see my fallopian tube or blood going round my ovary, so it sounds like my ovary’s died.” Although this news has cast doubt on the possibility of carrying a baby herself, Stephanie still has plans to raise children “If it all fails, I will adopt” she says.
Stephanie’s symptoms also have major repercussions for her everyday life. “I nearly passed out at work yesterday with a sharp pain that felt like someone with a hot screwdriver dipping into my like pelvic region”, she says. Despite the disruption pain like this causes to her working day, Steph’s boss has been understanding due to the fact that she has endometriosis as well. “She’s learnt how to deal with it at work, so she’s helping me” Steph explains. Steph is grateful for this, as she goes on to say that “I’ve lost so many jobs before in my 20’s, I can’t even count how many jobs I had because I’d wake up and I’d have flooded and I’d be in agony.”
“That is how I dealt with it in my 20’s because I just didn’t know what was going on, I had no idea what was happening to me.”
To manage her symptoms, Steph finds it useful to identifies her triggers.“Stress is one of the biggest things I find” she says .“I’ve tried to stay away from carbs but the love of pizza is too much, so that is one of my downfalls,” she admits. In the past, her coping mechanisms involved drinking “I’m not ashamed to admit it, I have used alcohol to numb the pain” she says “That is how I dealt with it in my 20’s because I just didn’t know what was going on, I had no idea what was happening to me.”
Wellbeing, my way
These days, Steph uses different methods to handle her endometriosis symptoms. “I have a vape lamp so I use lavender in that,” she says. “I have an acupuncture mat that I lay on because I’ve got herniated disks as well so I reline my spine and just relax for a bit.” Steph also uses technology to help her to relax, “There’s a couple of apps that are really good that, even if it just plays waves and stuff you just try and take yourself out of where you are at that time.” Her love of lavender also extends “Lavender bath salts are the best things ever!” she believes “One, you’re relaxing because you’re in a bath and two the lavender really helps you kind of relax and just unclench.”Although Steph was diagnosed with stage four endometriosis when she was 26, she tells of how she “battled to get people to listen since the age of 14.” During frequent visits to the hospital, staff were often dismissive of the pain she reported. “I used to go and they’d say “Oh we know her, she can’t handle her monthly”, telling me it was all in my head”, she recounts. The diagnosis was a relief for Steph, who describes how she “just broke down and burst into tears. It was like ‘Okay, so I know it’s not all in my head.Ensuring she gets the right vitamins is also an essential for Steph “I take vitamin D and B” she says “Especially in winter because we’ve got no sun.” “I take things like fish oils because my joints are so bad, but that’s just a by-product of the endo.” Steph is also a vegetarian: “I cut meat out completely for like the last 12 years, that does help because I can’t digest it.”
Emotional support is also important to Steph, as she says “Having the Facebook support group and realising I wasn’t alone” is key to improving her quality of life “’Because when I moved back to Leeds I had nobody. I could reach out and I could say ‘I’ve had a really crappy day and this is what’s happened’ and people are there straight away.” Steph believes the support of her partner has also been valuable. “It took me a long time to find the man that I actually want to marry and who puts up with it. He never leaves my side, if I’m in hospital, he holds my hand” she says. Steph’s partner keeps himself as informed about endometriosis as possible, as she remembers “I told him on our first date, and he went away and researched everything that he possibly could.”
“Always have your survival kit in your bag, with your pain killers, wet wipes, have your pads, tampons” she advises other sufferers. “It’s a case of having as much as I possibly can and having an emergency tenner in my wallet just in case I need to get a taxi home quick because you never know if it’s gonna come.” “For me, I’d never met anyone with Endometriosis until I started joining Facebook group and feel I can now actually talk and I’ve got a voice, instead of feeling like I’m just writing in my diary and crying. And your best friend will be your water bottle so get yourself a good one”, she laughs.