The pain during sex was unbearable (Picture: Ellie Waters)
We all remember our ‘first time’, right?Â
Good or bad, it will forever be ingrained in our memory.Â
For me, it was truly unforgettable.
Given that I wasn’t sure if I’d even be able to have ‘normal’ sex, it was monumental.
No, my partner wasn’t that good. Or bad. It’s… complicated.
I was diagnosed with alveolar rhabdomyosarcoma (ARMS) – a type of soft tissue cancer – at 14 years old.Â
It all began with a small lump in my left butt cheek. I ignored it at first, but when it continued to grow and I developed other symptoms, such as constipation and a stabbing pain in my left leg, I went to the GP.
They believed I was suffering from an abscess and prescribed course after course of antibiotics, which did nothing.
I was eventually admitted to hospital and had surgery to remove the lump, which as I now know, turned out to be a tumour.
Ellie was diagnosed with cancer at 14 years old (Picture: Ellie Waters)
I required chemotherapy and pelvic radiotherapy – and at 16 years old, I was relieved to be finally cancer-free.Â
But, both treatments caused my vagina to essentially close-up and become as dry as the Sahara Desert.
The pelvic radiotherapy had caused burns to my vulva and vagina, which led to scarring and tightness. And my ovaries were also affected, which sent me into the menopause and, as any woman will tell you, caused dryness and tightening.Â
Yet as I was only 14 at the time of diagnosis, I don’t think the doctors ever thought to consider my sexual wellbeing or prepare me for this.
Of course I was grateful that they’d given me a chance to live, but I wanted a nice, normal life – one that included sex.
Determined to not die a virgin, I had to go through the arduous process of re-opening my vagina. I conducted my own research and ordered vaginal dilators to stretch it open. Â
Each night I would sneak off to my room to follow a 30 minute routine. I started with the smallest dilator and slowly worked my way up through the sizes (there were five in total).
It was a slow, frustrating and often painful process. But I was determined to see it through.
After around six months I finally reached the biggest size. I was amazed at the progress I made, all by myself with no guidance.Â
When I had sex for the first time, it was pain-free and enjoyable.
Pelvic radiotherapy had caused burns, which led to scarring and tightness (Picture: Ellie Waters)
Admittedly, it wasn’t particularly romantic – I treated it more like a check-list item rather than being sentimental about it – but we did have lots of fun.Â
Importantly though, having already got to know my body very well by using the dilators, I wasn’t nervous at all. I felt comfortable.
My vagina felt brand new and I was sexually active. Things were really looking up for me.
Sadly, the good news ends there – only six months after being sexually active, I began experiencing pain and swelling of my labia and vulva after sex.
Sex still felt very new and exciting and I wasn’t prepared to lose it so, at first, I tried to ignore it. But eventually it got to a point where the pain was so bad I simply couldn’t pretend it wasn’t bothering me anymore.
Luckily, my boyfriend at the time was always very supportive and he never made me feel bad for being unable to have sex. Still I struggled to cope.
I hated how it was stopping me from having sex. And worse, I didn’t know what was causing it.Â
Even more concerning, I noticed blister-like lesions on my labia that leaked clear fluid.Â
Dr Google petrified me into thinking I had genital warts, so I went to an STI clinic, only to be told by a concerned-looking doctor that they had never seen anything like this before and to go see a specialist.
Over the course of six months, I got sent from GP to oncologist to gynaecologist – yet I still had no answers.
Ellie was diagnosed with vulval lymphangiectasia (Picture: Ellie Waters)
During this time, the swelling worsened, I developed cellulitis (a nasty skin infection that caused pus filled lesions on my vulva), and I was even struggling to sit down in lectures or ride my bike.Â
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Eventually I saw a super specialist in vulvas, known as a vulva dermatologist; she took one look and made the diagnosis straight away – finally!Â
I was diagnosed with vulval lymphangiectasia, a rare skin condition caused by the pelvic radiotherapy I’d had.
Essentially, it occurs due to damage of the lymphatic system draining the genitalia and pelvis, which causes the lymph fluid to build up under the skin and cause the symptoms I had been experiencing.Â
She explained to me that it is a chronic condition that would likely get worse unless I had treatment for it.Â
Naturally I felt very relieved to have a diagnosis, but I was annoyed to have yet another medical condition to deal with. I just hoped that, with treatment, I could successfully manage it and get back to having sex.
The treatment in question involves three monthly injections to my vulva to ‘close-off’ the dodgy lymphatic vessels, reducing the swelling and leakage.Â
Ellie just wanted control over her life again (Picture: Ellie Waters)
For the record, having multiple injections to your vulva is as bad as it sounds.
After the first few, my whole labia felt like it was on fire. The burning pain was so bad it made my whole body shake.Â
It’s a very unpleasant procedure, but it does relieve my symptoms massively. And thankfully the injections I’ve had since have never hurt as bad.
I hoped this would be the last thing I’d have to deal with now and that I could finally gain control of this condition and get back to having sex.Â
I was wrong.
At the time of writing this, I am 22 years old and I haven’t had penetrative sex in two years.Â
It seems that the recurrent cellulitis and swelling of my vulva has caused my vagina to shut-up-shop once again, with any form of penetration being extremely painful and virtually impossible.Â
Accepting the loss of sex has been a tough process for me.Â
I felt so guilty that I couldn’t have sex with my boyfriend that I broke up with him. I felt so anguished that I felt that life was not worth living anymore.Â
It caused me that much internal turmoil that even the mention of sex or hearing my neighbours doing it sent me into a panic.Â
Ellie felt so guilty, she broke up with her boyfriend (Picture: Ellie Waters)
It took me a long time to properly overcome the loss – the mental impact it had on me was huge.Â
I know I sound crazy talking about sex as if I had experienced the death of a loved one, but it honestly felt like that. I struggled to think of a future without sex and I vowed that I would never date anyone again because of it.
Thankfully, I am much more positive now and I have accepted that I will likely never be able to have penetrative sex ever again.Â
Time is a healer, and it has taught me to focus on what I can do, not what I can’t do.Â
I have learned that sex is not everything and that you should not define your worth on your ability to have it. I will always miss sex and I long to re-experience it, but I am focusing on fulfilling my life without it.
Recently, I have proudly taken part in the Macmillan and Lovehoney ‘Sex and Cancer’ campaign, allowing me to spread awareness and unite others experiencing sexual dysfunction.Â
I can’t tell you how long I have been waiting to shout from the rooftops about sex and cancer.Â
I want talking about sex to be comfortable, I want survivors to take autonomy over their sexual health and to not accept an unfulfilling or absent sex life after cancer – survivors deserve good sex too!Â
Doctors also need to be more open about discussing sexual health with their patients. It’s so important and can have a massive impact on a person’s quality of life and relationship – I know it has on mine.
So let’s open up the conversation about sex after cancer, let’s normalise it and let’s support each other to speak up.