May 12th 2024.
Do you remember your first time having sex? Whether it was a good or bad experience, it's something that sticks with us forever. For me, it was truly unforgettable. I was filled with uncertainty, not knowing if I would even be able to have "normal" sex. It was a monumental moment for me.
No, it wasn't because my partner was particularly good or bad. It's a bit more complicated than that. You see, at 14 years old, I was diagnosed with alveolar rhabdomyosarcoma, a type of soft tissue cancer. It all started with a small lump on my left butt cheek. At first, I ignored it, but as it continued to grow and I developed other symptoms like constipation and a stabbing pain in my left leg, I decided to see a doctor.
The doctors initially thought it was an abscess and prescribed antibiotics, but they didn't do anything to help. Eventually, I was admitted to the hospital and had surgery to remove the lump. Little did I know, it was actually a tumor. After that, I underwent chemotherapy and pelvic radiotherapy, and at 16 years old, I was relieved to finally be cancer-free.
But, both treatments had a major impact on my sexual health. They 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, leading to scarring and tightness. And to make matters worse, my ovaries were also affected, sending me into menopause and causing dryness and tightening. Yet, at the time of my diagnosis, I don't think the doctors ever considered the impact on my sexual wellbeing or prepared me for it.
Of course, I was grateful that the treatments had given me a chance to live, but I also wanted a nice, normal life – one that included sex. So, I was determined to not die a virgin. I did my own research and ordered vaginal dilators to stretch my vagina open. Every night, I would sneak off to my room and follow a 30-minute routine, starting with the smallest dilator and slowly working my way up to the larger sizes. It was a slow, frustrating, and often painful process, but I was determined to see it through.
After about six months, I finally reached the biggest size and was amazed at the progress I had made all on my own. When I had sex for the first time, it was pain-free and enjoyable. Admittedly, it wasn't the most romantic experience – I saw it more as a check-list item than a sentimental moment – but we had a lot of fun. And, because I had gotten to know my body so well through using the dilators, I wasn't nervous at all. I felt comfortable and my vagina felt brand new. Things were really looking up for me.
Unfortunately, the good news ends there. Just six months after becoming sexually active, I started experiencing pain and swelling of my labia and vulva after sex. At first, I tried to ignore it, not wanting to lose the newfound enjoyment of sex. But eventually, the pain became unbearable and I couldn't pretend it wasn't bothering me anymore.
Luckily, my boyfriend at the time was incredibly supportive and never made me feel bad for being unable to have sex. But, I still struggled to cope with the pain and the thought of losing sex again. It was a major blow to my self-esteem and caused me a lot of internal turmoil. I hated how it was stopping me from having a fulfilling sex life and I didn't even know what was causing it. I even noticed blister-like lesions on my labia that leaked clear fluid. I turned to Dr. Google, and the fear of having genital warts sent me to an STI clinic, only to be told by a concerned doctor that they had never seen anything like it and recommended I see a specialist.
Over the course of six months, I saw multiple doctors, from GPs to oncologists to gynecologists, but still had no answers. In the meantime, the swelling worsened, and I even developed cellulitis. It got to the point where I struggled to sit in lectures or ride my bike. Finally, I saw a specialist in vulvas, known as a vulva dermatologist, who took one look and made the diagnosis – vulval lymphangiectasia, a rare skin condition caused by the pelvic radiotherapy I had undergone.
Essentially, the damage to my lymphatic system was causing lymph fluid to build up under the skin, leading to swelling and other symptoms. I was relieved to finally have a diagnosis, but frustrated to have yet another medical condition to deal with. The doctor explained that it was a chronic condition that would likely get worse unless I had treatment for it. But, I was determined to gain control over my life again and hopefully get back to having sex.
The treatment involved getting injections to my vulva every three months to "close-off" the damaged lymphatic vessels and reduce the swelling and leakage. It wasn't a pleasant experience – in fact, it was as bad as it sounds. The first few injections were excruciatingly painful, making my whole body shake with burning pain. But, it did provide much-needed relief from my symptoms, and subsequent injections were not as bad.
I thought that would be the end of my struggles and that I could finally gain control over this condition and get back to having sex. But, I was wrong. At the time of writing this, I am 22 years old and haven't had penetrative sex in two years. The recurrent cellulitis and swelling of my vulva have caused my vagina to close up once again, making any form of penetration extremely painful and nearly impossible.
It was a tough process for me to accept the loss of sex once again. I felt guilty that I couldn't have sex with my boyfriend at the time, and it even led to us breaking up. I was so anguished that I felt like life wasn't worth living anymore. I struggled to cope with the impact it had on my mental health, and even the mention of sex or hearing my neighbors having it sent me into a panic.
But over time, I have learned to focus on what I can do rather than what I can't. I've accepted that I will likely never be able to have penetrative sex again. It's been a healing process, and I've learned that sex is not everything and that my worth is not defined by my ability to have it. I still miss sex and long to experience it again, but I've shifted my focus to living a fulfilling life without it.
Recently, I proudly participated in a campaign by Macmillan and Lovehoney called "Sex and Cancer," where I was able to share my story and raise awareness for sexual dysfunction among cancer survivors. I've been waiting for the opportunity to speak out about sex and cancer, and I want to help normalize the conversation and empower other survivors to take control of their sexual health. It's also important for doctors to be more open about discussing sexual health with their patients, as it can have a major impact on their quality of life and relationships.
So, let's open up the conversation about sex after cancer, let's make it normal, and let's support each other in speaking up. If you have a story to share, reach out and share it. And, let's remember that sex is not everything – we can still live fulfilling lives without it.
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