My Va-jay-jay was on FIRE!
Updated: May 26, 2020
I was burning! On fire, between my legs. I literally woke up one morning and my crotch was burning. I had no idea what was going on and I definitely had no idea how many years it would take to get answers.
So where do you go when something is going on “down there”? To the gynecologist. They tested me for a yeast infection, a bacterial infection and I can’t even remember what else. I remember that everything was negative, yet they treated me for a yeast infection. When that didn’t work, they treated me for a bacterial infection. When that didn’t work, they had no idea what to do so they gave it a name that meant nothing and referred me to another gynecologist who supposedly had experience in the area. The diagnosis I was given was vulvodynia. That literally means unexplained pain in the vulva area. No kidding, right!
I did go see the doctor they recommended. She examined me then sent me with a prescription for amitriptyline. An antidepressant that when used in smaller doses works with the brain to turn off the pain signals. Now I didn’t understand all that then but 18 years later, I have had quite the education! The medication worked for a while. As time went on, we had to increase the dosage until it got to a level that was more at the antidepressant level and was no longer turning off the pain signal. I continued to search for answers which led me to a vulvar vaginal disease clinic.
We drove 4 hours to get there. I was examined and even with the absence of any redness or any irritation and my admittance that I used nothing with fragrances, I was given the diagnosis of contact dermatitis and told to do numerous sitz baths per day. This made no sense to me as I had no signs of any skin irritation, but I did it because, what if. Mind you, by this time a few years had passed. I had also met my husband and we were engaged and planning a wedding. I was desperate to get the pain under control. Now I had lengthy times here and there where the pain was controlled with the medication, but it was back and forth for a long time and I also got off the medicine periodically thinking maybe the pain would be gone and I wouldn’t need it. No such luck.
As you can probably imagine, the sitz baths did not help either. When I followed up with the clinic they did not budge on their diagnosis and had no desire to search for anything else. By this time my wedding had rolled around and we were having a destination wedding. I was in pain at that time continuously, but some days were better than others. I eventually gave in to the gynecologist that had prescribed the amitriptyline and started on gabapentin. It caused weird tingles in my legs, so I did not want to continue. After being in pain on our wedding trip, I decided I needed to give the gabapentin another try. Maybe I could get over the side effects. After working through some side effects and increasing the dosage, I started to find relief.
My husband and I knew we wanted a family and we were 28 when we got married so we were not going to wait long. Knowing I would need to stay on the medication but also wanting to start a family, my husband and I consulted with a specialist to be sure the medication would not cause any issues with the baby or pregnancy. We were given the green light and that lifted so many worries because I was afraid I would not be able to start a family unless I got off the medication and getting off would mean pain!
To sum up the next lump of years, I remained pain free, started our family and went many years pain free. I was even able to decrease my gabapentin down to just 600 mg a day. Down from 3600 mg. After many years like this and becoming a huge health nut, learning about food and how you can heal your body with food, I decided that maybe the pain was gone. Remember, at this point I still only knew I had unexplained pain in my vulva area. No explanation why, so to me, it was possible it could have gone away.
So one day I woke up and decided not to take my gabapentin. I figured if I started feeling twinges of pain, I would get back on it. It took a couple weeks, but the twinges came so I started taking the gabapentin again. When the 600 mg did not shut it off, I continued to go up until I found myself at the 3600 mg and still no relief. At this point I felt like I was starting the whole process over. I saw my gynecologist who referred me to the pain clinic. I had a series of nerve blocks as well as added nortriptyline and Lyrica to my medication list.
The nerve blocks helped while I was numb but that was it.
Eventually the addition of nortriptyline and Lyrica, as well as acupuncture, calmed my pain. This managed it for a while (about a year) but while on the Lyrica, I gained 35+ pounds. I felt it was necessary to survive at the time, but the weight was really bothersome (I am still dealing with trying to get it off). So eventually I tried to decrease some meds, but the pain made it impossible. I was frustrated and very depressed. My doctor that I saw for acupuncture finally said to me one day “what we are doing is only masking the pain, it may be time for you to try to figure something else out.” I was so discouraged because I felt there were no doctors out there that knew what to do. At least none I had ran into yet. I would like a dollar for every healthcare person that has stared back at me with a clueless gaze. I wouldn’t say they are to blame; it clearly is not something taught in med school. But the doctor that performed acupuncture on me had also been the first doctor to research it when he had no idea what I was talking about. He did his homework then showed me the anatomy of that area so that is where I learned more about the pudendal nerve.
So, after I left his office that day, I am not exactly sure what different terminology I googled but I ran into a site for Dr. A. Lee Dellon at the Dellon Institute for Peripheral Nerve Surgery. I think I read every word on his site that day. I saw a contact us button and clicked. I was able to send an email with a brief summary of what I was dealing with. Within an hour, Dr. Dellon had emailed back himself and asked me to give him specifics and whether I had had a fall or surgery or anything. When I wrote back, I did mention that I fell into a pool when I was 11 years old and hit my pelvis on the side of the concrete pool. I had told every doctor I had seen over the years about this fall but they all discounted it as a factor since my pain did not begin until I was 25. Dr. Dellon immediately said he felt it was from the fall and it is possible that it would take years before I would be bothered by it. Add that to the long list of very tricky things about nerves!
To make a long story short, within a few weeks of my correspondence with Dr. Dellon I was sitting in his office in Las Vegas for a consultation. After an exam and discussion Dr. Dellon believed I had scarring (from the fall) on my nerve causing the pain. He could go in, remove the scarring from the exact branch that was affected and then implant the live end of the nerve into a nearby muscle. He was going to do this on both sides. The procedure was called a “bilateral resection of the perineal branch of the pudendal nerve”. He felt that would take care of the pain. He did say that sometimes he does a procedure and then finds there are other areas affected but he doesn’t believe in doing more than is necessary so this is where we would start. I left his office that day with a surgery date. Between the visit and the surgery date I had a lot to do to get insurance to cover it (a long story I can share later) but I was so hopeful this would help. Dr. Dellon clearly knows his stuff.
I went back to Las Vegas for the surgery and had it on January 3, 2018. The recovery was painful but manageable. It took a number of months to get back to pain free, but I definitely felt better. I was also able to get off the Lyrica and nortriptyline but did have to add in Cymbalta. As time passed, I eventually tried to decrease meds but still had pain above and below where he performed surgery. I went back to see Dr. Dellon in October of 2018 about these 2 areas, but he said I really needed to give it 2 years past surgery because the nerves take so long to heal and mine were bad for so long. This was discouraging but pain was being managed with the meds so I could live life.
However, something set me off in March or April of 2019, the pain came back, and the medicine was no longer controlling it. The area that Dr. Dellon performed surgery on was better. It was numb but the areas above and below were still hurting. I made contact with Dr. Dellon and we decided I should have a consultation and exam because other nerves may be affected. I had felt in my gut all along there was more but was hoping I was wrong. I went to see Dr. Dellon (in Baltimore this time) and after examining me he felt there was another perineal branch that was lower and went back farther, that was affected, as well as my genitofemoral nerve. He could take care of both of these in the same surgery, 4 incisions. This surgery was done on June 7, 2019 in Baltimore.
As you know, pain in this area is not something a lot of people talk about. Over the years I have shared it with some people but most recently, I have shared it even more. Through sharing I have been able to educate friends, doctors, nurses and many others. I have even connected others to Dr. Dellon. I feel as though I need to share the message to help others. Few doctors know how to handle this type of pain yet there are many people suffering. Even as Dr. Dellon has taught and trained many doctors, there really are none that have been interested in dealing with the pudendal nerve. I pray that some have a change of heart.