Listen to your lady landscape

Bravely contributed by Morgan M.

I was 14. My doctor said, “you probably have mild endometriosis” and put me on the pill to help me manage my dysmenorrhea (very painful periods). With the debilitating period pain out of the way, hopefully the systemic thrush and recurring UTIs would be more manageable. Ok, I remember thinking, this will fix it for me.

And it seemingly did for many years. I continued to skip my period and enjoyed a relatively pain free life, aside from the occasional planned bleed where I’d be in bed for a couple of days, and one visit to ER when I felt like something had ruptured inside of me… I never thought twice about medicating my cycle.

I continued on to have my cervical cancer shots in grade 10 and then never thought about it again. I’m cool.

At 17 I found myself in an abusive relationship which lasted 4 years. Throughout that time, I was manipulated, belittled, and made to feel like I belonged to someone – I was never my own woman. When I finally got myself out of that situation, I was scared because I’d never been alone before. I was damaged because of what I’d been through. I was naïve because I’d never had the space before to know who I really was.

So, I tested the waters, and for a smart girl I made some not-so intelligent choices. After a year or so, I found myself suffering from both thrush and bacterial vaginosis and I just could not kick the infections. By this time, I’d started dating my now partner, and after some uncomfortable swabs and hysterical blood tests I had to break the news to him that I was carrying an STD. At the time I was so embarrassed, how disgusting, I cried, how un-clean. I’m too smart for this to have happened! Of course, being the gem he is, he supporting me through it and made me feel loved – something I wasn’t used to.

We got over that hurdle.

Then the next one came barrelling towards us. I’d been having little red wart-like bumps burned off the inside of my legs for a little while and was getting so frustrated by their appearance. Around this same time, I got the pap smear letter – I was 23 and it had been 5 years since my previous smear. No problems. The appointment went fine, if not just slightly uncomfortable, and that was that.

A few days later I got a call about my results. I don’t remember much about that conversation as it was muffled by my tears, but my doctor told me I had HPV. But I had the shots in high school? At this stage of my life, I didn’t really know what that meant but somehow, everything started to make sense. I asked a lot of questions and read a lot of articles and found out that this wasn’t too uncommon - it’s estimated that around 80% of Australians will be exposed to it at some stage during their lives (https://www.fpnsw.org.au/factsheets/individuals/cervical-screening/human-papillomavirus-hpv-vaccination). Despite the anxiety I felt around this, my doctor said not to worry as I didn’t have the “dangerous strains” (neither 16 nor 18) and that I would just need to go for a follow up smear in another 6 months’ time. If there was no change, all good, I just had to keep up with this bi-annual schedule. So, I did, and everything was tracking ok – the red bumps were going away and I was starting to get the thrush under control.

A couple of years later, the painful periods were getting worse.

Being intimate was getting tricky (pretty much impossible). I was insanely bloated ALL the time. The smears were unbearable. I was getting breakthroughs and pain was creeping into my everyday life again. I hated my body and I hated the fact that my womanhood was pretty much taken from me. I talked to my doctor about the possibility of endo and that my childhood doctor had suggested it. I was referred to see a private surgeon.

The day of that appointment I was so anxious – I knew the examination was going to be painful and I was nervous about what she was going to find. I sat in the waiting room for over 2 hours and when I was finally called in, I was rushed onto the bed and had what felt like her fist wrapped in barbed wire inserted right up to my uterus. I was inconsolable and the pain was off the charts. She gave me a nonchalant “it’s definitely endo, you need surgery, it will be $5000,” and then pushed me out the door. Still crying, I paid the huge fee for the appointment and went back to my car sobbing. As it was considered a ‘pre-existing’ condition, I also soon found out that my health insurance would not cover the surgery. So back to my doctor I went.

I was put onto the public system waiting list and told to prepare myself for around a years’ wait. But I was persistent. I went back to my doctor almost on a weekly basis complaining about the pain. She was very supportive and continued to apply to have my category upped, and I was lucky enough to then be seen by a public gynaecologist within a couple of months.

Based on my previous gynaecological experience, it’s safe to say I was petrified for this appointment, but I was pleasantly surprised when he said based on my history, he didn’t need to complete an exam and scheduled me in for my laparoscopy straight away.

A few weeks later, I was in yet another waiting room preparing for my surgery.

… Pre-cancerous cells caused by the HPV.

Following my recovery from surgery, I was booked in for appointment after appointment at the hospital – endo related follow ups, CIN2/3 discussions… At one point, the original male gyno I’d seen at the hospital made jokes about me not being able to have kids because I couldn’t even have sex due to the pain.

I cried. And then I complained…

After this I saw the female surgeon I’d spoken to in my recovery bed. I was also referred to see the head of the clinic at the hospital for my associated pelvic pain. They each said that as well as my other various diagnoses, I probably also had vaginismus. After suffering from extraordinary pain during intercourse and trying to use tampons for a couple of years now, I was so relieved to finally have a doctor listen to my complaints and provide me with an answer. I was handed yet another referral to see a pelvic floor physiotherapist and a pain specialist.

My physio appointments at the hospital were pretty confronting. From the very first session she did internal examinations and exercises which were absolutely excruciating. I actually felt like I was getting worse while going through this invasive treatment.

At the same time, I was also being treated for those pesky CIN2/3 cells by yet another specialist. Being told I had to have a cervical biopsy whilst knowing I had vaginismus was pretty scary. I wasn’t sure how my body was going to take it, but then I’d already been through so much that I was sure I could make it through. While it was very painful, I knew the worst was still to come once I got my results back. The specialist didn’t like the look of the cells, so told me I would need to be scheduled in for a LLETZ procedure.

You’re kidding…

I paused physio for a few weeks before and after this procedure because I knew it was going to take a while for me to recover from it. I was offered to go to the day hospital so that it could be completed under twilight anaesthetic but knowing how my body responds to being put under I opted to stay awake and be administered with local anaesthetic. My mum came with me for the appointment for support and I decided to take a Valium beforehand.

Still recovering from endo surgery + dealing with vaginismus + anxious about the possibility of cervical cancer + terrified of having my cervix burnt and shortened and affecting my fertility…

I’ll save you from the gore, but it was NOT a pleasant experience. Though, it was over very quickly, and the hospital staff were amazing and as gentle as possible. I’m so glad I was onto it with my pap smears early, because if I had left it there was a pretty high chance these cells would have developed into something much more sinister later in my life. After the procedure, my recovery wasn’t too bad and I only have to have a smear done once every 12 months for the next few years, and providing everything checks out, I can go back to regular scheduling.

So, by this stage I’d had my endo removed (tick!) and my CIN2/3 cells taken care of (tick!). Now all that remained was vaginismus.

It hasn’t been a year yet since my LLETZ procedure, and the smear prior to that was under general anaesthetic during my surgery. I actually haven’t had to do a smear whilst at the height of my vaginismus issues. However, there are a few things that have helped me get to the point of being ok with what’s to come…

1. Pelvic floor physio. No, not the one at the hospital. I complained about what she’d been putting me through and to my surprise, the pain specialist I’d been seeing said that that was a pretty common experience (huh?!). I discharged myself from that physio clinic and sought out my own private physiotherapist. I’m so glad I did. Girls – if you find yourself in my situation, I cannot recommend getting proper therapy for vaginismus. She has changed the way I think about ‘down there’ and has provided me with so many tools for both managing the pain and minimising it in the first place. She’s even potentially prevented me from having to undergo the Botox therapy (yep, in the cervix!) my pain specialist has been looking into for vaginismus treatment. Fingers crossed he agrees when I see him in the new year.
2. Counselling. I’ve been in and out of psychology practices my entire life, so this came easily to me and it just made sense. During this time of my life it helped to clarify all the things that linked up and brought me to this point. It helped me to create a deeper connection with my body and to appreciate all of the amazing things she can do.
3. Don’t take no for an answer. Seriously. If you think something is wrong, speak up. While it took me some time to have the confidence to do this, and it did mean that everything I’ve spoken about here happened in the space of about two years, it also meant that I potentially saved my own life. I’ve now built up a bit of a ‘team’ of people who I know I can count on. My nutritionist, physio, chiro and gyno have helped me get through and heal so much already.
4. Get papped. I’ll say it louder for those in the back… GET PAPPED! Tell your friends, your sister, your mums and aunties too. And if you think you might have vaginismus like me? Practice deep breathing, learn some yoga techniques and stretches which are friendly on your pelvis, don’t be afraid to ask for a muscle relaxant if you need it, and make sure you tell your doctor ahead of time that you’re concerned about the pain the smear might cause. I’ve now opted to have my future smears done at the hospital where they know me and my case and are able to use the smallest speculum possible.

It’s hard for me to talk about getting your pap smears done without talking about the raft of other challenges I’ve faced with this body. I want you to know that if you’re also experiencing pain and discomfort, it’s not normal and you have permission to seek help.

You’re never alone.

You’re worth the effort.

Your body is amazing, no matter the pain it causes and the challenges it creates.

I’m so grateful for our healthcare system here in Australia. Whilst I’ve had my fair share of negative experiences with medical professionals who I thought were supposed to help me, it’s been outweighed by the fact that everything I needed for my range of issues and complications was taken care of for me.

Yet another reason to get papped and protect your future.

Morgan xx

** Love Your Lady Landscape by Lisa Lister- a highly recommended read for every person with a vagina.