How seeing a sexologist led to my endo diagnosis.

March 16, 2023

Personal account penned by Asheda Weekes.

 

Despite waking up to an anaesthesia-induced fuzziness, hearing the words ‘we found endo’ washed over me with relief. I know, it’s strange that I wasn’t more upset with the news that I had a chronic illness. Already living with chronic illnesses, my attitude was more like, “sure, why not throw in another one?!”. 

But really, it's more complicated than that. For people like me who have long experienced symptoms related to endometriosis, PCOS, adenomyosis and more, getting a diagnosis is hard. It can be a long, expensive and painful journey. So in many ways, I felt relieved; I had an answer. And, whilst I did have many of the tell-tale symptoms, my endometriosis (a.k.a. 'endo') diagnosis all started with seeing a sexologist.

 

The 'before I had a gynaecologist's referral' bit.

I decided to see a sexologist in late 2021. Off the back of the pandemic ‘winding down’ and much like many of us, having had a lot of time to reflect on myself, I realised it was a time in my life when I wanted to unpack my relationship with sex. It led to me opening up about my issues with pain and anxiety during penetrative sex — and, this was really the starting point on this journey. 

Exploring vaginal and pelvic pain came next. I was referred to a pelvic physiotherapist, who discovered that I carried a lot of that anxiety in my pelvic muscles. I learned a lot about breathwork, identifying pain and tightness, plus I really got to know my anatomy. I was making progress. Then in April 2022, I skipped the country for three months on a glorious holiday. My journey paused. 

Before leaving, my pelvic physio and I discussed seeing a gynaecologist as part of a holistic treatment plan, a just-in-case precaution to see if something else was going on (though in my opinion, seeing a gyno should be offered the way mammograms and colon checks are). From what I knew at the time about endo, I thought it was reserved for people who suffered heavy and painful periods. I didn’t experience them and so exploring the possibility hadn’t crossed my mind.

 

The 'when I had a gynaecologist's referal' bit.

I returned home in August 2022 and pressed play again on my pelvic pain journey. I went to my GP, got a referral to a gyno that my pelvic physio had recommended, and made an appointment. It was three months until my consultation. 

Though the wait times can be lengthy, I personally really believe it’s worth seeing a gynaecologist who specialises in endometriosis and related conditions. I didn’t realise how important this was until after my surgery, but I’m grateful that seeing a pelvic physiotherapist helped land me seeing one.

When the wait was over, the journey had a kind of elastic band effect. It stretched on for months, and then suddenly everything happened quite quickly. I was booked in for an exploratory laparoscopy (colloquially it’s known as keyhole surgery, using small incisions and a laparoscope camera to inspect and operate on organs in the abdominal and pelvic area)within two months.

 

The 'when I decided to book a laparoscopy' bit.

My first consult with the gynaeocologist was a positive experience. It included the usual chat about history, symptoms and an internal exam. When pain flickered in my eyes, and nausea came thereafter, the gynaecologist suggested that I could have endometriosis. She thoroughly explained to me what it was and my options on how to move forward; which were either pain management, or an exploratory laparoscopy in order to get a diagnosis. 

Her manner offered that there was no wrong path due to the nature of getting a diagnosis. Though keyhole surgery is less invasive, it’s invasive nevertheless. There is trauma to the body.And what if they found nothing? It’s a lot of time and money (and pain) for such an outcome. Other things people faced with this decision include having fear of surgery, fertility or other health issues. But I needed a definitive answer - I had already made the decision to go ahead with the surgery before she even asked. 

There was an appointment available the following week. I was shocked. With such a lengthy wait time to see her in the first place, I anticipated the surgery would also be months away. The following week was just days before Christmas and my birthday, and, not knowing what they'd find in the surgery or what my recovery might be like, I declined - it just felt a bit too quick. Luckily, she had a free spot within a month’s time, so we locked it in.

 

The surgery bit.

One thing I hate about surgery is fasting the night before. Even more than the surgery itself. With years of an eating disorder behind me, regular eating has been an important part of keeping well. A lot of mental prep went in before this day - deciding on a satisfying last meal, endless cups of tea, a good distracting show to watch in the evening and having something to look forward to when I could eat again. Oh and most importantly, a good night’s rest. I think even without enduring such an illness, having a plan for this awkward and hungry space of time helps. Especially when you have to take a double-dose enema to empty your bowels pre-surgery as well, ha. 

The morning of I was calm and well rested. I packed a bag with a good book and dressed in comfy clothes. My fiancé dropped me off and then it was a waiting game. A few forms to sign, sitting around, changing into a ‘cute’ gown, more sitting around and some more pre-op steps. Finally, it was my turn.

 

The post-surgery bit.

“We found endo, there was lots of it.” I woke up in the post-op bay hazy, thick with drowsiness and some heavy pain on my left side. 

“Can I turn over? I want to lie on my left side. I need to turn over”. 

The nurse didn’t want me to, but I had already made a start. The air of nausea was coming, and I wanted to bury my head under the pillow from the sterile bright lights. She was a delight - she even asked if I wanted to take a post-op selfie. I laughed in surprise. But she was the one who gave me that sense of relief with those words. 

I was wheeled into a room where I rested and waited for the anaesthesia to wear off. While reading a book I sipped on plenty of water and ate a sandwich. I pee - the tick of being discharged. My fiancé arrived with a croissant and iced coffee which I devoured in delight, soaking in the comfort of his presence and good pastry. 

One thing I would not recommend after laparoscopy is living in a four-storey townhouse with a bedroom on the top loft. Going up and down those stairs for the next week(s) was an exhausting and painful feat. I moved between the bed and couch with a heat pack in tow, working my way through books between sleep. The first one I grabbed was How to Endo by Bridget Hustwaite. 

I wish I had read this book before my surgery. There were so many questions I hadn’t asked my specialists or even considered (a standout was that I should've hacked my recovery by doing meal prep prior). As I read, I realised I'd had a relatively smooth experience with my endo diagnosis and in working with doctors in this short period. 

Despite not asking more questions, I managed to get a great team of specialists and the luck of timing on my side. I also had the financial means and (amazing) support from my boss to be able to make this happen. 

I recognise that many others are sadly not in the same position as me. Many don't have the support, resources or awareness to seek treatment or a diagnosis. Endo affects 1 in 9 Aussie women, girls and those who are gender diverse yet it remains one of the most difficult to diagnose, often misdiagnosed and misunderstood diseases. 

Reading 'How to Endo' really opened my eyes and boot-strapped my education around this disease. For that first week and beyond, I've started educating myself more.

 

The recovery bit.

The pain transitioned for two weeks post-surgery. First, it was surgical pain from the incisions, next came the general period and abdominal pain, followed by this sharp and tender pain on my left side.

I slowly regained my energy and returned to work (from home). Even for what’s considered a minor surgery, you don’t realise how much it really takes it out of you. Making a cup of tea was hard. Doing chores was a no. As an antsy person who loves to potter around the house, I was also learning how to rest during recovery. 

When I posted about having my surgery on Instagram, I was inundated with love and support; so many women I know reached out and shared they also have endometriosis. Some were diagnosed in their teens, others in their thirties, some have had two excision surgeries, and others have had a tumultuous journey getting a diagnosis. It was heartwarming to find this connection and community, yet saddening that it’s not something so many of us hadn’t learnt about when we were learning about periods in school.

 

Where I am now.

It’s been almost six weeks. The pain has subsided. I can go on my long walks to work. I’ve even been cleared to exercise. I had my period which was lighter and less painful. I’m doing well. 

I felt like this time has been all about connecting the dots of my symptoms; not only in the last few months or years, but for the last decade. I’ve had abdominal flare-ups and pain since my early 20s, including a couple of pelvic ultrasounds and a trip to the ED. I’ve even fainted from putting tampons in and learnt I stopped putting them in far enough to avoid the pain (this one is embarrassing, they kept falling out of me every time I peed!). Endometriosis was never mentioned, and the results were always inconclusive. I wish I pushed harder, but we shouldn’t have to, right? 

When I learned about endo a couple of years ago, I dismissed it because I thought my pain was never severe enough. I also didn’t know that my digestive issues were endo-related symptoms, but I now see how the bloating just played into my body dysmorphia. I now better understand how the pain interconnects with my pelvic and vaginal pain, and how it’s all hindered my sexual wellness. 

My post-op appointment is at the end of the month. I don’t understand why it’s two months after the surgery or why I was given the surgical images to take to my appointment — should it be my responsibility to have these on hand? These are questions I should have been asking prior to surgery because I expected my gynaecologist to see me straight after with an update. So my piece of advice? Advocate for yourself, prep questions and don't be afraid to ask them! 

So whilst I know I have endo, I’m actually waiting for my results; what stage of endo I have, where exactly they found it, what else is going on with my reproductive organs, and what the next steps are based on that information. So I’ll check back in soon, and let you know how it goes.

 

Images reproduced with permission via @asheda_ on Instagram.

 

Please note: This piece is the personal account of the writer and does not constitute, nor should it substitute, a personalised medical diagnosis. If you are experiencing any of what has been discussed in this piece, or if you have any specific questions or concerns about your own health and wellbeing, we strongly encourage you to check in with your GP or a trusted health practitioner.

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About the writer

Asheda Weekes (she/her) is a Malaysian/Chinese-Australian writer based in Naarm (Melbourne).  Her essays and poetry centre around mental health, relationships and culture. She also works as a copywriter and studio manager, specialising in website and social media content for various industries, including weddings, fashion, and beauty/health. She's recently published her first poetry anthology ‘I Subside By The Seaside’.



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