Anyone out there diagnosed with Pudendal Neuralgia?

Hi everyone,

I developed Pudendal Neuralgia nine months ago after a sudden and unexpected fall. As I went to sit on a fixed chair at a venue, it broke underneath me, and I crashed hard onto the cement floor. I was holding something in both hands and couldn’t brace myself, landing directly on my butt. This injury has been incredibly painful and has affected every aspect of my life. It’s difficult to explain to others due to the nature of the condition, and I often feel very alone in dealing with it. I’m in Canada, and I’ve found there’s not much awareness about this condition here, which makes things even harder.

My pain specialist was concerned about me having a colonoscopy and initially had me cancel the original appointment, the reason I was having it was because of a postive FIT test. But six months later, the hospital called to rebook, and I decided to go ahead with it, though I expressed my concerns. My husband and I met with the doctor beforehand, and I specifically asked if he knew anything about the pudendal nerves. He responded that he knew nerve blocks were given for them but assured us there was no chance I would flare because he wouldn’t go anywhere near them. My pelvic physiotherapist even sent a letter outlining my condition and concerns. The doctor was aware that my pain specialist had me cancel the first appointment, yet he brushed it off, implying that my anxiety was the real issue. It’s so frustrating that he wouldn’t listen or even take the time to do a little research before the procedure.

Recently, I had the colonoscopy, and within days, I experienced a severe flare-up. I tried managing the pain with gabapentin, tramadol, meloxicam, and Tylenol, but none of them helped much. My pelvic physiotherapist examined me and strongly encouraged me to go to the emergency room, saying I shouldn’t have to endure such intense pain.

At the ER, I met a doctor who was thankfully familiar with pudendal nerve issues—what a relief! He confirmed that the flare was likely triggered by the colonoscopy. The first dose of morphine they gave me didn’t help much, but the second shot finally provided relief. He sent me home with a prescription for morphine, advising me to stay on top of it so I don’t lose control of the pain and allow my body to get through this.

Has anyone had a similar experience? If so, how long did it take for you to recover from the flare caused by it?

Thank you for reading and for any insights you can offer.

I had this monster for 14-1/2 years. I sat on a donut. Then, my neurologist prescribed an off-label anti-seizure medication for a daily persistent headache. Within 2 weeks, my butt was better. It was Topamax. My pelvic physical therapist mentioned that she had heard of this. Sooooo, why did she not mention this to me? See what your doctor says. Worth a shot, right? Good luck.

Thank you for your reply, I'm really scared and worried I will be like you and so many others who suffer for years. Take good care.

You should be scared. Having PN is a nightmare. I was diagnosed with PN last year by my pain management Dr after PN nerve blocks, which only relieved my pain for a day. I had surgery two years ago to place a sling under my urethra to help with incontinence. The GYN damaged the Pudendal nerve on both sides. Nobody has heard of PN. Not a Urogyn, surgeon, gynecologist, urologist, nobody helped me. Just a bunch of stupid tests. Right now I get a ganglion impar block every month. It helps 50%. I wish somebody could tell me what kind of Dr could help me. Knowing I will live with this for the rest of my life is too much. I try to stay positive but with this intense pain I realize how weak my mental health is. I've been in 2 mental hospitals because of suicidal thoughts because of the pain.

I also have multiple symptoms as you.
Had a bladder sling done and had no relief from leaking, just some complications like not being able to pee afterwards,and having to undergo a loosening of the sling.
I also cannot feel the urge to go, and basically am stuck having to wear a damn pad all the time!
My nerves are shot, have no feeling in my feet and have trouble walking.
My balance is gone, and have to use a walker because I fall easily, and I can’t walk around places because I get tired easily.
I know how you feel, it’s a real struggle.
There are days when I just want to give up, my quality of life sucks.

Hi everyone,

I developed Pudendal Neuralgia nine months ago after a sudden and unexpected fall. As I went to sit on a fixed chair at a venue, it broke underneath me, and I crashed hard onto the cement floor. I was holding something in both hands and couldn’t brace myself, landing directly on my butt. This injury has been incredibly painful and has affected every aspect of my life. It’s difficult to explain to others due to the nature of the condition, and I often feel very alone in dealing with it. I’m in Canada, and I’ve found there’s not much awareness about this condition here, which makes things even harder.

My pain specialist was concerned about me having a colonoscopy and initially had me cancel the original appointment, the reason I was having it was because of a postive FIT test. But six months later, the hospital called to rebook, and I decided to go ahead with it, though I expressed my concerns. My husband and I met with the doctor beforehand, and I specifically asked if he knew anything about the pudendal nerves. He responded that he knew nerve blocks were given for them but assured us there was no chance I would flare because he wouldn’t go anywhere near them. My pelvic physiotherapist even sent a letter outlining my condition and concerns. The doctor was aware that my pain specialist had me cancel the first appointment, yet he brushed it off, implying that my anxiety was the real issue. It’s so frustrating that he wouldn’t listen or even take the time to do a little research before the procedure.

Recently, I had the colonoscopy, and within days, I experienced a severe flare-up. I tried managing the pain with gabapentin, tramadol, meloxicam, and Tylenol, but none of them helped much. My pelvic physiotherapist examined me and strongly encouraged me to go to the emergency room, saying I shouldn’t have to endure such intense pain.

At the ER, I met a doctor who was thankfully familiar with pudendal nerve issues—what a relief! He confirmed that the flare was likely triggered by the colonoscopy. The first dose of morphine they gave me didn’t help much, but the second shot finally provided relief. He sent me home with a prescription for morphine, advising me to stay on top of it so I don’t lose control of the pain and allow my body to get through this.

Has anyone had a similar experience? If so, how long did it take for you to recover from the flare caused by it?

Thank you for reading and for any insights you can offer.

I also have multiple symptoms as you.
Had a bladder sling done and had no relief from leaking, just some complications like not being able to pee afterwards,and having to undergo a loosening of the sling.
I also cannot feel the urge to go, and basically am stuck having to wear a damn pad all the time!
My nerves are shot, have no feeling in my feet and have trouble walking.
My balance is gone, and have to use a walker because I fall easily, and I can’t walk around places because I get tired easily.
I know how you feel, it’s a real struggle.
There are days when I just want to give up, my quality of life sucks.

I also have multiple symptoms as you.
Had a bladder sling done and had no relief from leaking, just some complications like not being able to pee afterwards,and having to undergo a loosening of the sling.
I also cannot feel the urge to go, and basically am stuck having to wear a damn pad all the time!
My nerves are shot, have no feeling in my feet and have trouble walking.
My balance is gone, and have to use a walker because I fall easily, and I can’t walk around places because I get tired easily.
I know how you feel, it’s a real struggle.
There are days when I just want to give up, my quality of life sucks.