Chronic pain is hard to describe at the best of times. When the pain lives deep in the pelvis — a part of the body we rarely talk about — it becomes even harder. That’s the challenge of explaining pudendal neuralgia.
People ask me, “What does it feel like?” And I often pause, because there isn’t one simple answer. Pudendal neuralgia doesn’t feel the same every day. It shifts, it surprises, and it intrudes in ways that are difficult to put into words. But I’ve learned that talking about it matters. So here is my attempt to describe the pain that so many of us live with but few understand.
Burning, Stabbing, and Pressure
On some days, pudendal neuralgia feels like burning like fire is running along the nerve pathway. It’s sharp, raw, and impossible to ignore. Other times, it’s stabbing, sudden jolts that make me catch my breath. And then there’s the pressure, a heavy, unrelenting sensation, like I’m sitting on a hard object that isn’t really there.
These sensations can move to different areas or overlap. What begins as burning can shift into throbbing, which then turns into inflammation and a stiff protuding belly. The unpredictability is exhausting.
The Challenge Physically
If I had to name the single most disruptive aspect of pudendal neuralgia (apart from chronic pain), it would be the way it makes sitting long periods unbearable. Something as basic as watching a movie, driving my children to school doing errands even shopping for a period of time and studying/working at my desk becomes an ordeal of sorts the pain influences my day ahead my plans my life and leaves me somewhat at a loss somedays, it takes a-lot to feel driven and positive with pelvic nerve damage/chronic pelvic pain, its my optimism and positive attitude that gets me through. Having a strong will and magnetic pull to continue and be the best version of myself with debilitating pain, even though it can get the better of me some days. I still fight those negative feelings for my children, partner and most importantly for myself everyday.
I use cushions, change positions constantly, and sometimes have to lie down or stand randomly mid-conversation anywhere or with anyone just to find relief. Imagine designing your everyday around how you sit or stand with everyday tasks, that’s what pudendal neuralgia demands. Also the tools that you need for inflammation, heating up heat packs constantly, tens machine sessions (sometimes both at the same time) constant moving pillows around for comfort while trying to watching a good show. Then medication taken to mask pain and the rest its a story for another blog!
Electric shocks, burning, stinging and inflammation and trembles.
At times, the pain comes like a sharp lingering shock. It’s quick, intense, and startling, like being zapped from the inside out it also comes and goes randomly leaving me yelling in pain randomly. Other times, there’s burning and stinging internally or outside in private areas, its a strange foreign feeling, as though parts of my body don’t belong to me it doesn’t feel natural at all, foreign. Inflammation happens with activity and physical activity these times during the day its unavoidable with three young boys and study and a small local creative business.
These symptoms are unsettling in different ways and affect me daily.
It’s hard to explain to others why I suddenly wince in pain or shift uncomfortably when nothing “seems wrong.” But inside, my nervous system is firing alarms creating trembles I feel from the inside and it shows physically in my hands/fingers.
Pain That Reaches into Private Spaces
One of the most isolating aspects of pudendal neuralgia is where the pain lives. The pudendal nerve supplies sensation to the bladder, bowel, and genitals. That means the pain doesn’t just affect sitting — it can intrude on going to the toilet, being intimate, or even just feeling at home in your own body.
This isn’t the kind of pain people feel comfortable talking about over coffee or at all really. So instead, many of us suffer in silence, carrying pain that touches the most personal parts of life but feels too taboo to share.
The Emotional Toll of Invisible Pain
Pain you can see — like a broken bone or a surgical scar — often earns instant sympathy. But pain like pudendal neuralgia is invisible. On the outside, I may look fine. I might even smile through conversations. But inside, there’s a storm of pain no one can see.
This invisibility makes it hard for others to understand. People sometimes question why I avoid why I cancel plans, or why I seem “tired and frustrated or I ask myself how Im going to go with a long trip or physical activity’s daily. The gap between what I feel and want to do and what others cant see inside mentally and physically can be isolating.
The only physical evidence is my scars from three major laparoscopic surgery’s and of course my written history.
Trying to Put It into Words
Over the years, I’ve developed different ways of explaining pudendal neuralgia, depending on who I’m talking to:
To family or friends: “It feels like sitting on a knife or burning.” It can be the ruin of what Im trying to achieve or stop me in my tracks while Im assuming everyday activities.
To doctors: “It’s nerve pain — sharp, burning, stabbing — that worsens with sitting and affects bladder, bowel, and sexual function.” Explaining why my medication is important and needed – doctors are also exhausting and terrible listeners.
To myself: Sometimes, I don’t even have words. I just acknowledge that today is a “bad pain day” and try to focus on surviving it and it gets so tiring day in and out. I also have determination to work through it which Im always working on as best as my body/chronic condition will allow.
Even with these descriptions, it often feels like language falls short.
How do you make someone understand pain they can’t see, in places they rarely think about?
The Ripple Effects
Pudendal neuralgia doesn’t stop at physical sensations. The way it feels shapes every part of my life:
Social life: With children and school, sports I cant avoid these activities social things. Friends and family I do my best with my situation but I make time as I love socialising (phone, FaceTime, coffee at a cafe, visiting at a house rather than a big mall etc)
Parenting: When pain is bad I am restricted and that affects parenting too though I do my best and adjust day to day I feel mum guilt a-lot for the position Im in with nerve damage. As I was a very active mother before this began five years ago. Im still quite active its in my nature but chronic pelvic pain/pudendal neuralgia does affect how busy I am or how quite my day will be – we adapt.
Relationships: Explaining nerve pain in intimate areas is awkward, even with people I trust. It can feel embarrassing, even though I know it’s not my fault. With my partner he has such a in depth knowledge and respect for me he has seen the hell I have endured surgery’s and procedures and the effort I am constantly making in every area of self care I look after myself and he accepts those days I have no control over my pain. Im restless and find it hard to sit around I always have sometimes he has to tell me to stop with the pain Im in.
Studying: Long hours at a desk are nearly impossible without breaks, cushions, or lying down. The pain becomes an extra subject I never signed up to study.
Working: As a creative my work requires me to stand and sit for long periods the inflammation I push through is painful the pain from sitting to long can reduce the products I produce or period of time Im creating, it zaps me so I have to really organise and feel positive about what I doing and strategise. It makes me happy and thrive so it’s bitter sweet when I have to stop because of my pain.
Exercise: This is a tough one it takes work on what will not agitate the pudendal nerves and damaged muscle so I walk gently and go to physio to assist me with exercise and how to implement it in daily life.
The physical feelings and the emotional consequences are intertwined. The pain itself is hard, but so is the constant negotiation with everyday life.
Why Describing It Matters
So why share all this? Because silence breeds isolation. The less we talk about pudendal neuralgia, the harder it becomes for others to recognize it. Describing what it feels like may be uncomfortable, but it creates understanding.
For those living with it, hearing someone else put the pain into words can feel validating: Yes, that’s exactly what I feel. I’m not alone. For those who’ve never heard of it, vivid descriptions make the invisible visible. They turn an abstract condition into something people can imagine and hopefully care about.
Closing Thoughts
Living with pudendal neuralgia means living with sensations that are hard to name and harder to endure. Burning, stabbing, pressure, shocks and numbness the pain wears many disguises, but the impact is always real.
I wish I didn’t know what this pain feels like. But since I do, I believe the least I can do is talk about it openly. Because the more we describe the indescribable, the less invisible it becomes.
If you live with pudendal neuralgia, your experience might not be exactly like mine — but it is valid, and it matters. And if you’ve never heard of it before, I hope these words help you imagine, even for a moment, what it feels like to live with this hidden pain.
Because awareness starts with empathy, and empathy starts with understanding.
Pain may be invisible, but the people living with it are not.
Healing and strength to you or your love one living with pudendal neuralgia.
Cassie 🩷x
Welcome Beautiful 