Living with Endometriosis, Interstitial Cystitis & Vaginismus | Ashley’s Story
By Ashley
Hi, my name is Ashley. I’m beautiful, sexy, and a lil chronically ill.
I’m 24 this year, AuDHD, a Registered Nurse, and a proud Lesbian. Some days my life feels like it should be scored to ‘Tubthumping’ by Chumbawamba – because I get knocked down, but I get up again (usually after a heat pack and some meds). But between hospital gowns, catheters, surgeries, and more pelvic floor Botox than I'd like to admit, I've found strength, humour, and some lessons I wish I knew earlier.
Where It All Began
I was 15 when my body started giving me signs that something wasn’t quite right. Heavy, painful periods. The kind of pain that makes you wonder if everyone else feels this way or if you're weak. (Spoiler alert: it wasn’t weakness).
For years I played hormonal roulette with different contraceptive pills, hoping for relief. But at 19, after my GP finally referred me to Dr Tina Fleming, I had my first laparoscopy and was diagnosed with Stage 4 Endometriosis. Not exactly the badge of honour a teenager wants, but it gave me validation, answers, and a plan.
Surgeries, Scar Tissue & Setbacks
My twenties so far have basically been sponsored by laparoscopies. After my first surgery, I pushed myself back into work and exercise too soon and ended up with severe scar tissue wrapped around my reproductive organs – honestly and arguably, more painful than the endo itself at times. A second lap in 2022, then another in 2023, and then another in 2024. Add in a lap for ovarian torsion and haemorrhagic cysts that ruptured monthly like clockwork; let’s just say that my pelvis has seen more surgeons than most people see dentists in a lifetime... lol.
Alongside the surgeries, I tried everything people recommended. Every diet going (low FODMAP, anti-inflammatory, gluten-free, dairy-free, you name it – ngl they do help!). Different exercise plans. Other forms of contraception. Naturopaths. Acupuncturists. And to be totally candid, there were also times I ditched all the strategies, meds, and methods completely – just to see if doing nothing worked. (It didn’t, but desperate times, right?).
Each recovery felt like two steps forward, one step (or five) back.
Interstitial Cystitis & Catheter Moments
2022 brought a new curveball: Interstitial Cystitis. I’ll never forget being admitted to hospital with urinary retention, my bladder screaming but nothing coming out. At times I have to self catheterise to empty my bladder. It’s as unglamorous as it sounds – I had to quite literally get up close and personal with myself, use a mirror, and learn the ins and outs of my vulva.
Add in bladder steroids, cystoscopies, and yet more pelvic floor Botox, and my pelvic floor physio basically becoming my unofficial bestie.
Vaginismus, Sex & Finally Coming out
For years, vaginismus made penetrative sex an absolute nightmare. When I was younger and dating men (I didn’t come out until three years ago), sex was something I dreaded. The pain was so severe it left me hospitalised more than once (shamefully) - I would pass out afterwards from the pain. That kind of experience doesn’t exactly set you up with a healthy relationship to intimacy.
So, when I finally came out as a lesbian, I swore off penetration altogether. My body and my brain just said, 'Nope, not going there again.' I stuck to what felt the same because protecting myself mattered more than anything else... even though I’d listen to my friends enjoying their sexual experiences, pain-free and pleasurable, things I didn't even think were a possibility for me.
But here's the plot twist: recently with the right person and the right kind of connection (and I shouldn’t discount years of work with my pelvic floor physio and psychologist), I discovered that penetration doesn’t = pain. In fact... my mind was BLOWN. Who knew (not me, clearly) that it could actually feel that good? It was like my body finally whispered, “See? It’s not you.
You are capable of positive and enjoyable sexual experiences. You were never broken.”
Chemical Menopause & Ryeqo
By late 2024, I was begging doctors for an oophorectomy just to end the pain. Because of my age, and you know, ‘Ethics’ and what not, this didn’t happen, but I instead trialled Zoladex – essentially a reversible chemical menopause. For the first time in literally YEARS, I felt relief. No pain, no hospital admissions. But of course, it can’t be long-term. Now I am on Ryeqo, which has given me a fairly decent quality of life, except for my right ovary being fused to everything surrounding it. When it flares, the pain is so bad I pass out – at work, at home, wherever. So later this year, after hospital board meetings, psychological assessments, and getting on my knees to beg (literally), I will be having that ovary and fallopian tube removed. A bittersweet choice, but one that feels necessary if I want to keep living rather than just surviving.
Finding Light Among the Chaos
It hasn't been all doom and gloom. I've met incredible people – from specialists to fellow chronically ill spoonies – who reminded me that humour is medicine too. Like laughing with a nurse about how Botox isn’t just for foreheads anymore or joking with friends that I’ve had more catheters than birthdays. (Half true).
Words of Wisdom
If you’re reading this and you’re just starting your journey, here’s what I'd tell you:
• You’re not weak. Your pain is REAL, and you don’t need to justify it.
• Find your team. A good GP, a specialist you trust, a physio who gets it – they make all the difference.
• Advocate for yourself. No one knows your body better than you! Keep pushing until you’re heard.
• You’re not broken. Whether it’s endo, adeno, PCOS, IC, vaginismus, or all of the above, you are still whole, still worthy, and still capable of love and joy.
• Dance it out. My motto in life. No matter the emotion, pop on your favourite song and DANCE!!! It helps :)
Living with chronic pelvic pain conditions is messy. It's hospitals and heating pads, cancelled plans, and tough conversations. But it’s also resilience, creativity, and learning to love yourself even when your body feels like the enemy.
If my story helps even one person feel a little less alone in theirs, then every word here was worth it.
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