How Nerve Damage in My Vagina Changed Everything About My Sex Life

“It took years to find a really good position for us, standing face to face.”

Nov 22 2021, 9:04pm
A series about sex and stigma.

Whether due to a disease, injury, surgery, or dozens of other potential causes, at least one in four people will develop nerve damage at some point. The effects of this damage vary dramatically, depending on the nerve(s) impacted and the exact nature, extent, and duration of the harm done to them: People might experience total numbness, or varying degrees of dulled sensation, hypersensitivity, or pain. Nerve pain may feel like a constant prickle and tingle (like a numb limb waking up), a dull ache, or a fire running through a person’s flesh. Damage to nerves that control bodily functions may also cause issues like spasms and cramps, dizziness and nausea, balance problems and weakness, or even paralysis. 

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All forms of nerve damage have the potential to radically affect every aspect of life—including sex and intimacy. Pain triggered by pressure might preclude some types of physical contact. Muscle weakness or balance issues may make it difficult to get into or hold certain positions. Dulled sensations may make activities that were once pleasurable suddenly feel entirely meh.  

Damage to the pudendal nerve, which runs from the lower back forward to the genitals and controls sensation throughout the pelvis—as well as bowel and bladder movements—often has the most direct and extensive effects on individuals’ sex lives. It usually causes pain and/or numbness throughout the pelvis, or in specific parts of the genitals or anus. Many people with pudendal nerve issues report constantly feeling like their crotch is swollen, like they’re sitting on marbles, or like they need to pee or poop. They frequently have trouble getting physically aroused or reaching orgasm. Some also feel intense pain after they climax.  

Effective and early treatment can often mitigate most symptoms of nerve damage. Depending on their exact causes, some symptoms can even be reversed or fully cured. But proper treatment varies substantially from one type of damage to the next. And many medical authorities believe pudendal nerve issues are relatively rare. (In truth, they’re not uncommon among people who work or exercise in ways that involve constant yet minor strain in their pelvic region or put them at risk of acute blows to their crotches, following childbirth or medical procedures around the groin, or even among those who seriously and frequently strain while defecating or those who have very bad posture.) So symptoms of pudendal nerve damage often get brushed off by care providers, or misdiagnosed and mistreated for years, allowing them to worsen for many.  

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In recent decades, a few organizations, like the Pudendal Neuralgia Association and the Health Organization for Pudendal Education, have started to spread awareness of and education about pudendal nerve issues to help more people find treatment sooner. Yet it is still difficult to find candid stories of people’s experiences with sex alongside pudendal nerve issues as a point of reference. VICE spoke to Soula Mantalvanos, who developed pudendal neuralgia after an accident several years ago and has since become a notable advocate for those with this condition and other forms of chronic pain, and her husband, Theo Mantalvanos, about their sex life. 

This interview has been edited for length and clarity. 


Soula: I used to sit a lot for my job, so I did a lot of exercise to maintain my health. One day, I was sitting on a FitBALL, which is fantastic for your core and your balance, and it burst under me. I dropped onto a concrete floor, and it felt like something had rocked my foundations. I couldn’t move. Eventually, I crawled to a carpeted area. I felt really sore, but I hadn’t heard a crack, or anything that made me think I’d broken something. I laughed about it. It was like a roadrunner cartoon, where I was just hovering and then I fell. 

But I didn’t just feel sore like usual after a fall. I felt this dull ache, which a

t times changed to more of a fiery pain, throughout my pelvis. It seemed like every time I did anything, it triggered that pain. I was getting these muscle spasms, too. So I ran straight to my doctor. 

My doctor told me to come back if the pain didn’t go away in eight weeks. It didn’t. She then sent me to a rectal surgeon. But he didn’t know much about pudendal neuralgia. After he examined me, he said, “From what I can see and feel, and from what you’re telling me, there’s nothing going on. You’re perfectly fine.” But as I walked back to the car, it felt like I was on fire. That bout of pain lasted for two days.

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Sometimes the pain spreads down my legs. And I had all sorts of other sensations. I never felt any numbness, but I’d feel like I really needed to go to the bathroom when I didn’t, or like I didn’t need to go when I actually did. For a long time, it felt like a pin was poking me, as well. 

It’s hard to get your head around the idea that this kind of injury, this kind of pain, can stop you from functioning in every aspect of your life. You can’t understand that if you haven’t experienced nerve pain. When it happens, you just feel really lost. For me, the pain was so bad, it felt like there was nothing beyond it. I felt like I was living in an empty can, with no distance and horizon. Time felt broken down into milliseconds that each felt eternal. 

Theo: This had an immediate effect on our sex life. Right after the fall, of course, I thought, Well, we’ll take it easy for a while. It’s like when someone has the flu. You don’t go up to them and say, “Do you wanna get it on right now?” You let them rest for a few days. But a few days became a few weeks, then a few months, and then years of pain. Sex was really a no-go. Not just penetrative sex, but oral sex or anything else. The pain just turned absolutely everything off. 

Soula: Those first weeks and months were such a blur that I can’t actually remember when we first tried to have sex again. Can you? 

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Theo: No, but it was quite a while after the fall—it must have been months. 

Soula: We have a fantastic relationship. Our sex life was never hanging-from-the-ceiling crazy, but it was great. We’d never really had any issues before. So that was a big change for us. 

When we did try to have sex again, because we didn’t know what was actually going on, I went into this protection mode. I thought, If I do anything that might bother my pelvis, this is going to get worse. That’s not actually how nerve pain works, but at the time I thought in these purely mechanical terms: Don’t rub it. Don’t touch it. Don’t push it. Don’t get the area excited. 

Theo: One of the first times we had sex, Soula said over and over, “We have to be gentle.” We’re not usually rough anyway, but sometimes we could get a bit fast and hard. 

Soula: Yeah, I said, “We have to be gentle and quick.” 

Theo: Right, so we had to go for it, without going too hard. 

Soula: One of the biggest mindfucks for me was that my pain response was delayed. During sex, I don’t have any problems, but the next day I would feel a lot of pain. So, I had to get over the knowledge that if we had sex, I’d feel it later. But once I got over that, I was totally there in it. 

Theo: What killed me was that our spontaneity went out the window immediately. Before the fall, in the middle of the night or first thing in the morning one of us might go in for a touch and see what happened. Or, in the middle of the day, we’d get aroused and go for it. That was gone. 

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Soula: For over four years, we didn’t know what was going on. We were confused all the time.   

Theo: It was hard for me to wrap my head around this. Like, I’ve never broken a bone, but if someone breaks a bone and tells me the bone hurts, I can understand that. I believed Soula that she was in pain all the time, but I didn’t really get it in the same way. We tried to tick every box to figure this out. We went to a gynecologist, urologist, spinal surgeon, orthopedic surgeon. 

Soula: At least twice to each. And as time went by, my symptoms got worse, and new ones developed. Like, in the third year, I developed hypersensitivity in my clitoris. It was almost like someone had put my vulva on a live wire. It was like torture. It made me jumpy during sex. I got to the point where I had to sleep for three hours in the middle of every day just to function, because my pain usually subsided after sleep, and I could get things done again when I woke up. 

Then an orthopedic surgeon examined me and said, “You’ve got nerve pain.” He sent me to a specialist who told me about these neuro stimulator implants that were often helpful for people with nerve pain. He said, “Why don’t we try one of these and see if it helps before we do something really invasive, like surgery to your coccyx?” I’m so thankful to him for that, because many people with pudendal neuralgia end up getting invasive surgeries. The stimulator helped. And while I did have to have an enlarged ligament in my back removed, my spine is fully intact. 

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The diagnosis also finally gave us an explanation for what was going on. We also found this great physiotherapist who had an aura of comfort and confidence about her, as well as in-depth knowledge about pudendal neuralgia, and we felt like we could discuss anything with her—including sex. We could laugh about things with her. 

Theo: We finally knew that, if we had sex that lasted longer or went harder, it might lead to more pain the next day, but it wasn’t going to, like, pick at a scar and make it worse. 

Soula: That was a big deal. It gave us a lot of space and comfort. But I’m still cautious and hesitant. Knowing I’m going to feel pain later, I still have limitations, and they’re really crap. 

Theo: We learned that putting pressure on the nerve is what causes symptoms.

Soula: Yeah, directly or indirectly. Like, lifting things doesn’t put a lot of direct pressure on the nerve, but it still carries down. Which is why picking things up really used to ring my bell before I started to get effective treatment, which gives me a little more room before I feel symptoms. 

Theo: We figured things out, like that if we took a drive in our hard-suspension car, which we really loved, the vibrations would agitate Soula’s pudendal nerve and then we wouldn’t be able to have any fun later. So, we had to sell that car and we didn’t take as many long drives anymore. 

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Soula: We’re constantly weighing up everything in our lives. Like, if I have sex, which can have a huge impact on my pain, then I probably won’t be able to exercise later. But I need to exercise. So, I have to find a balance—and I often pick the walk over sex. Which is so shitty.  Because we do need the intimacy that comes from sex. I feel like that connection really revives me. 

Theo: It’s a constant opportunity cost calculation. 

Soula: After weighing everything up, we decided to move out of the city where we’d built our life, and the business we ran together, but where we were constantly getting invited out and going all over town, which had a huge effect on my symptoms. We pulled the plug on our entire life to that point so that I could have more bandwidth. We moved to a regional town, where we had no connections, and opened a new business together. 

Theo: I’ve gotten into a caregiver mode. I try to do things for her even as she’s gotten better. 

Soula: Yeah, almost everything still affects my pain, but I’m like, “Hey, I can do that now.” 

Theo: But in my head I’m thinking, If I do this thing that might exacerbate Soula’s pain if she were to do it, then she’ll have more bandwidth for other things. Then maybe we can have sex in a day and a half instead of seven days. 

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Soula: [Laughs] Yeah, we do work like that. 

Theo: The day after we have sex is always a bit sad, though. 

Soula: Yeah, because we know we won’t be able to do it again for a while. It always feels like it’s been too long since we last had sex. 

Theo: I have noticed that Soula eventually started going to the bathroom to change. We’ve never been shy about walking around naked in front of each other. I think she doesn’t want to create arousal for me, because we both know that then we won’t be able to act on it. 

Soula: Yeah, that’s definitely true. But since no two people are wired exactly the same in their pelvic region, we’re constantly figuring out new things that help us have more and better sex. I’ve realized, for example, that if I don’t orgasm, that helps me feel less pain later on. I doesn’t actually matter that much to me if I orgasm or not; if it happens, that’s great, and if it doesn’t … the sex is still great. It’s really the intimacy of the sex I want. That’s been a big discovery. 

Theo: It took years to find a really good position for us: standing face to face. 

Soula: It’s awesome. 

Theo: Since she’s not laying down, there seems to be no direct pressure. There’s nothing weighing down on her pelvis at all, except me. And it’s a very shallow and soft position. I actually don’t know why it took us so long to think of that. We really are always learning new things. 

Soula: All of this has been especially hard, though, because when I first fell we were really in our sexual prime. We could have been going out more, exploring more.

Theo: There were times in that pre-diagnosis stage where I did feel like I was missing out. Like we should have been out doing more things, having more sex, at our age. We weren’t going to get those years back. But … does it really matter that you had one less ice cream when you were younger, you know? In the end, our relationship is so strong. 

Soula: It really is like we’ve climbed the mountain. If we can conquer this, we can get through anything. Because when you have love like this, well, then you’ve always got hope, don’t you? 

We’re also still young. We still have time to try things. And we’re definitely getting better. 

Theo: Yeah, we can always explore new things. And our sex is still very intimate. That’s what really matters.

Tagged:

relationships, This Is How We Do It, body, Chronic Pain, nerve damage, pudendal neuralgia, nerve pain

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