Does vulvodynia last forever? Tyra Banks: me, myself, and my vagina

Does vulvodynia last forever? How long does vulvodynia last? How long does vulvodynia pain last? Will I ever be able to have sex again? 

Years after watching Tyra Banks talk about sex, the vulva, and the vagina, I took a trip with my cousins to Edmonton to visit my grandmother. I was nineteen years old at the time. We had all decided to bring our swimsuits so that we could go into the wave pool at West Edmonton Mall. But then my period arrived.

“Fuck my period,” I remember saying to myself.

Panicked, I went to Edmonton anyways and decided to bring some tampons. After struggling quite a bit in the hotel bathroom, I managed to insert the tampon into my vagina. At least, I thought I did.

In the wave pool, I was fine. I was splashing about with my cousins, laughing even, and having a good time. It was my cousin’s idea to try out one of the red slides. When it was my turn to go down the slide, I enjoyed every moment until the very last second. The inertia of the water was so fast that suddenly, the half-inserted tampon slid right out of me. I coughed up some chlorine, as some of it had gone up to my nose. My sister and cousins were applauding and had no idea that I had a bloody tampon grappled in my hand under the water. I quickly grabbed the side of the pool and looked at my sister.

“Please get me my towel now; my tampon fell out in the pool.”

I hobbled out of the pool, mortified that my tampon had fallen out. I ran to the locker room as quickly as possible with the towel wrapped around my waste. I couldn’t believe what had just happened.

Throughout university, most of my friends had active sex lives. The hook-up culture was definitely surrounding me everywhere. I had a sex drive; I did, but I knew it would be tricky. I knew that hook-up culture would never be for me because of my situation. I knew that whoever was going to be with me would have to confront something with me that was extremely embarrassing for me to talk about: my vagina. And that’s when the inevitable happened.

At 23, I met my current partner: an absolute gem of a man that I couldn’t believe existed. I realized early on that this guy would probably be a serious relationship. I adored every moment with him. One weekend, he snuck me up to his office, where he worked downtown, and things started to get heated between us on a couch in the break room. He then asked me, right there and then, if we could have sex. And that’s when I realized I would have to tell him my big secret.

“I- I don’t know how it’ll work. I want to. I just don’t know if it’ll go in my vagina. I don’t know if that makes sense, but … I have … I have a thing. I still want to try to have sex. I want to; believe me, I do. So we can try if you’re willing to.”

I was so lucky to learn that he had this warm and understanding smile. He completely understood. He told me we could do things in a more comfortable space if I preferred. So I invited him over the next week, and we tried.

His penis didn’t go into my vagina. We tried again. And it didn’t go in. We tried a third time, and it went in only a quarter of the way. We tried several more times. I still felt pain. And I promised him I would book a doctor’s appointment. Every single time, he was gentle and checking in with me. I felt like I had won the lottery with him, but I also felt guilty for not being able to have penetrative sex.

Read more: What is vaginismus physical therapy?

My doctor finally examined my vagina after I squirmed around a lot and struggled in her office. She referred me to a gynecologist and prescribed me some Ativan for the visit. I sat in a waiting room filled with pregnant women. I compared myself to these women, some of who were sitting with their two other children they had birthed years prior. I thought to myself: “they’re able to birth a third human out of their vaginal canal, and my vagina can’t even handle a dick.”

In the gynecology office, a doctor finally came into the room, unashamedly getting to the point. “So you want to have sex? Penetrative sex?” she said as soon as she entered. I felt my cheeks getting hot and nodded. I had my second physical examination in that room.

“It could be vulvodynia or vaginismus. Or a combination of both. Let’s get you all checked out completely.”

I recounted some of my sexual histories and then remembered that episode of Tyra Banks talking about sex and vaginas. That woman on the show had said something about her mother telling her that sex was painful. Was it inherited?

“My mother had a double uterus,” I heard myself telling the doctor. “And traumatizing birthing experiences. I couldn’t have that, could I?”

“These things are typically not inherited,” she said. “But there's not enough research to verify when it comes to vulvodynia and vaginismus.”

And that’s when I did one of the most uncomfortable things I never thought I’d do. I picked up my phone, and I called my mom. I had never considered to ever talk to my East Indian mother about sex. Or about my vagina, whatsoever. I was dreading having the conversation, but I needed answers. I needed to know what was going on with me.

And so I asked the big, daunting question: “Mom. Did you ever have pain during sex?”

The phone was quiet on the other end. And then a reply.

She reluctantly answered. “Yes, I have always had painful sex since I was married,” she said.

A pang of shock hit me like a wave. “What? Did you ever go to the doctor?”

“In those days, no, of course not. I was eighteen, a young girl, newly married, in a new country. I didn’t feel comfortable. My doctor was male. People were being expelled from my country. It wasn’t a priority,” she said. “Birth made it worse. I’m still on a waitlist for surgery down below. They didn’t know I had a double uterus and I tore badly. My perineal tears never healed.”

I felt a plethora of information and more unanswered questions overwhelm me. Certain things were beginning to make sense, and other things, not so much. I suddenly realized why my mom's postpartum depression was so bad when I was a child; she had undiagnosed and untreated vaginal pain. But things became even more confusing when I received my ultrasound results back: a normal uterus and a normal-sized vaginal canal. Then what was causing this vaginal pain?

My gynecologist told me I could have vaginal hypersensitivity, including hypersensitive pain receptors below. “We don’t know why that is, but you probably do. It’s why you tense up.”

My gynecologist referred me to a pelvic physiotherapist. I was hooked up to a graphing machine via wires that were taped to my vulva. The device mapped out my muscle movements and tension as if calculating earthquake waves on a seismogram. I remember placing my palm on my forehead. This is what my mid-twenties have come to; attaching my vagina to a machine.

“Try and make graph spikes, Rozina,” said the physiotherapist as I tried to attempt Kegels. I was able to tense up quite well, but when it came to releasing the tension, it took about ten times longer.

“Your tension is currently at the level one would see in a Yoga class striking a pose, but you’re currently lying down,” she said.

I went to sleep one night and had a dream that I had been taken to a hospital. A woman in a lab coat was standing in front of me. She answered the question that had been plaguing me since diagnosis: does vulvodynia last forever? It was a resounding no.

She informed me that she had found the cure for the pain in my vulva, and she held a vial in her hand containing a white fluid I needed to fix it. I cried. I was so happy; I cried tears of joy. And then I woke up. It felt like I had just had a nightmare.

I promptly requested my physiotherapist to refer me to my local hospital’s multidisciplinary vulvar pain program the next day. And within a couple of months, I was thankfully given an appointment. This fourth specialist asked me detailed questions about my mental health.

“Well, I see a counselor for anxiety,” I said to her.

“Has anyone given you a formal diagnosis?” she asked.

I told her about how I’d had two terms thrown around: vulvodynia and vaginismus. She checked me this time, and she quickly did the examination without inserting anything into me. It ended within two minutes.

“You have vulvodynia,” she said. “When I touch even the outside of your vulva, your pain receptors are activated, and the muscle spasms, or vaginismus, is a result of the vulvodynia. It doesn’t surprise me, as your anxiety symptoms may relate to you having hyper-sensory. Do you jump at loud sounds?”

I nodded vehemently, knowing that was another thing I was embarrassed about. I asked the specialist: “will I have vulvodynia forever?”

I was quickly notified that I was a candidate for their program, which involved counseling, physiotherapy, physical therapy for vaginismus, and possibly other treatments.

They would put me in group therapy with women my age with the same condition and teach us methods of taking care of our pain. That’s when it suddenly hit me: history wasn’t going to repeat itself. I wasn’t going to have vulvodynia forever.

Read more: Erin goes to physical therapy for her vagina. This is what it’s like.

My mom hadn’t had access to these resources in her twenties. Nor would she have felt comfortable seeking them out due to her cultural background and the discrimination she may have faced as a young brown woman. I may have a similar, subdued version of my mom’s issues, but it wasn’t going to dictate my life because I had the power to reframe all my thoughts around it.

It isn’t going to be easy. Still, I feel so privileged to know that this kind of program is covered in my country. That I don’t have to feel stuck in the unknown over this because of my gender, race, or government’s policies to receive this treatment. This isn’t the case for so many people around the world, and the same went for my mom during her younger years.

We still have such a long way to go when it comes to research on female health conditions and treatment. And as much as it has felt like a run around discovering what my condition was; I am so grateful to have gotten here, and that’s all I can really ask for.

If it weren’t for Tyra Banks talking about sex and vaginas with those brave women years ago, I probably wouldn’t have known that painful sex and vulvodynia were something that affects so many women. And I may not have spoken up about it. So I thank Tyra Banks and all the women who feel inclined to speak up about painful sex, and their vulvas and vaginas because it’s helping so many of us come to terms with what we have and make peace with it.

My vulvodynia may not be cured by the end of this program, nor will I really know if vulvodynia lasts forever, but I’m grateful that I have access to acquiring pain management skills. I can only wish that for so many others who have similar issues.