Health Organization for Pudendal Education

I am scheduled to have surgery next month. I am terrified but I don’t know what else to do.my symptoms started 5yrs ago after I had A Bartholyn Cyst abscess. First just felt like I was sitting on something in the very lower buttock area by the rectum. It came and went for a few months then one day it just stayed. Eventually the pain made its way along the vaginal wall, labia, clitoris. Sitting. Walking. Standing. All painful. All day. Wake up feeling somewhat normal then the pain kicks in as soon as I get up. Two years going back and forth to doctors with no diagnosis.
Finally a doctor in NYC referred me to Dr. Mark Conway in New Hampshire. I live in NJ so my husband and I drove the 5hrs to see him. He diagnosed me with pudendal and set me up with a pain management team back in NY.
In the past 3 yrs I’ve tried gabapentin, lyrica, cymbalta. No relief but gained a lot of weight. Tried two rounds of physical therapy. Just made me worse. 5 pudendal nerve blocks with no help other than one time it reduced my pain slightly for an hour or so. Tried a ganglion nerve block. Did nothing.
Pain management team wants to try more meds, more blocks, possible ablation.
But it’s more than 5yrs now. I’m emotionally exhausted. Not to mention physically.
I can’t deal with the pain anymore. It has destroyed the person I was.
I have a 60-90 minute commute One way to work. Driving has been torture but I’ve kept doing it to keep my insurance.
Finally I did research and found this site and Dr.Andrew Elkwood. He thinks I also developed a neuroma along my vaginal wall that added to my pain.
After sending me for multiple tests to rule out other causes, he believes he can help me.
I scheduled the surgery but I’m freaking out. I’m afraid of the outcome but I can’t continue with this pain. I’m afraid I may lose my job, may be worse, may develop other problems, may regret the surgery.
I read good and bad things on this site. Really messes with my mind.
I feel so lost.

Hi,

Five years is a long time. I completely understand why you would be tired of the pain and I completely understand why you are freaking out about having surgery because I was seriously anxious before I went for surgery. What I have often felt is that it is worth it to try surgery if your quality of life is so bad that it is worth the risk of possibly getting worse. Some people prefer to try a neurostimulator to lower than pain level, rather than risking an invasive surgery. Personally, I first wanted to try something that would actually fix the problem rather than just mask the pain like a neurostimulator would, and then if the surgery didn't work, I could try the neurostimulator, but it's a really tough decision to make. One thing to consider is why did the neuroma form in the first place? Is your pain on the same side you had the abscess, and is it possible you have some scar tissue there? If so, I would ask Dr. Elkwood about how to prevent scar tissue from forming again and how to prevent a neuroma again. He is very experienced and from my interview with him, I had the sense that he had compassion for people like us. I wish you all the best with your surgery if you decide to go through with it. I would be interested to hear how things go for you.

Take care,

Violet

All my pain has been on the right side which is the side of where the cyst was. There is scar tissue and it’s believed the scar tissue pinched or contributed to the pudendal nerve pain.
The neuroma he mentioned during one of my exams and I actually can’t recall what he said about that.
The vaginal and labia pain is so bad I can’t barely stand it some days. It’s an achiness, pure pain. Sensitive to the slightest touch. Wiping, washing while showering, laying on my back or side is excruciating sometimes. I have to lay on my stomach.
I Haven’t worn underwear or jeans in 4yrs.
When walking the labia pain flares and When standing I need to spread my legs apart to lessen the friction.
Sitting is actually the most bearable as long as I sit on a seat my husband made for me in the shape of a toilet seat.
As the day goes by the pain gets worse. By the end of the day I’m laying with an ice pack between my legs.
My pain management team wants me to consider the neurostimulator or ablation before surgery.
I scheduled the surgery but I’m still not 100% sure I can go through with it.
Dr Elkwood said he thinks I’ve been through enough and surgery is next step. He said he has turned people away if he doesn’t think they’ve tried enough or surgery would help.
He said I can stick with pain management and not have surgery but If the surgery helps it could premanatly reduce my pain rather than me bring on meds or having blocks the rest of my life.
My entire life has been affected by this crazy pain.
I can’t believe it’s been so difficult to treat.
When it first started I thought I’d go to my doctor, take some meds or have a minor procedure and be back to normal.
Never imagined what me life has become.