It’s been over 5 years since I first started to experience unexplained pelvic pain. I’ve been meaning to share my story for years. I’ve finally gotten the courage to be loud and proud so that other women with pelvic pain will know they are not alone. If you or someone you know experiences pelvic pain, I hope my story will help in some way.
Initially, the pelvic pain felt like a groin pull. I had a similar injury before I had children during the kickboxing crazy. Does anyone remember Tai Bo? I figured it would heal on its own if I took time to rest.
Warning – Descriptive language ahead
After a few months, the pain seemed to be getting worse rather than better. Sitting in practically any position was extremely uncomfortable. Worst of all, sex was now painful either during, after or both. It felt kind of like someone punched me inside the very top of my left upper thigh so hard that the pain went through to the inside of my vagina.
Doctor #1 and Physical Therapist
I went see my doctor and she was rather stumped. She suggested that I go see a physical therapist. The PT thought it was a pulled muscle and began to treat me with massage and assisted stretching. Sometimes light massage and ultrasound seemed to help, but after weeks, I really wasn’t getting better.
Next stop… acupuncture. Nope! After being poked with needles for a number of weeks and even trying something called battlefield acupuncture involving barbs in my ears, I had no relief (and my ears were killing me).
One weekend, I was in so much pain that I took myself into an urgent care clinic. This doctor really took the time to listen to what was going on. He suggested that I might have something called vulvodynia and referred me to a specialist. This was the first time someone considered that it might not be a muscular issue.
Vulvodynia is chronic pain or discomfort around the opening of your vagina (vulva) for which there’s no identifiable cause and which lasts at least three months.
This doctor was a lovely woman who carefully examined me and explained what could be going on. She agreed with the diagnosis of vulvodynia. She suggested that my immune system might be having a bad reaction to products like soaps,
The interior discomfort seemed a little better, but the area just to the lower left of my vagina hurt. Most days, it hurt a lot! I sometimes. had pain going down the inside of my thigh as well. My gut feeling was that vulvodynia was not the cause of my symptoms. I was miserable.
Taking an emotional toll
By now, I was a mess. Could this pain be with me for the rest of my life? It hurt to drive so I made excuses to stay home. I couldn’t exercise, I turned to comfort food and gained about 20 pounds. Luckily my husband was (and still is) an absolute saint. He put up with the fact that sex was a rare occurrence. I tried my best to hide it from the kids, but they knew that I was in pain.
I switched to a new GP who luckily was aware of a pain clinic where they treated pelvic pain. I cried in her arms and told her that she was a blessing. My former GP
Doctor #5 – A successful diagnosis
My next doctor specialized in helping people with all sorts of chronic pain including pelvic pain. She determined that the probable cause of my pain was pudendal neuralgia. The pudendal nerve wraps around the pelvis and can become entrapped or irritated. Doctors are not sure what causes pudendal nerve pain. I didn’t just wake up with pain one day. There seemed to be a slow progression.
What could possibly be worse than struggling with a painful condition and feeling ashamed to discuss the problem because of its intimate nature? Such is the case for many suffering with pudendal neuralgia, a little known disease that affects one of the most sensitive areas of the body.OBGYN.net
If you look at my post about pelvic pain basics, you’ll see a list about possible causes of pelvic pain. I had previously suffered with pelvic inflammatory disease and uterine fibroids, but we do not know what was the “last straw” to send my nerves into chronic pain mode.
This doctor gave me a nerve block. It worked for a short time, but nothing miraculous. The second treatment worked like a miracle. I was pain-free for about 2 months. I couldn’t believe it. Could I be cured?
Not so fast. The pain came back and future nerve blocks did not provide the same relief. She recommended another specialist trying a number of experimental treatments. She also put me on a number of drugs to help with the pain. Most made me tired and moody.
Doctor #6 – Am I a rat?
At this point, I was beginning to feel like a lab rat. Was anything going to work? When this doctor examined me, he identified that my opturator nerve was also involved. Yippee, two nerves with neuralgia.
He had 3 options for treatment
- Stem cells
All 3 treatments were considered experimental so insurance did not cover them. I decided to try Botox because it was the least expensive treatment. He explained that the procedure was tolerable, but that some women went to the hospital to be anesthetized. That added a HUGE cost so I decided to brave the injections in the office.
If you consider this option and can afford being nocked out, DO IT! Picture 10-20 needle sticks inside your vagina. I probably could have punched through a wall. It was horrible. That said, I did get about 3 months of relief, but I DID NOT want to do it again.
My second choice was to try a plasma treatment. This involved taking my
Around the 12 week mark, I still did not have much improvement. My family embarked on a 2 week trip to Yellowstone and Glacier National Parks. My husband did all the driving and we did a lot of walking and hiking. Surprisingly, I began to feel better and better.
At first I thought it might be the addition of so much movement was the key to my improvement. But, I can’t discount that the Plasma may have done the trick.
Pain Free again
I’ve been mainly pain free now for 8 months. Unfortunately, the pain is beginning to come back. I’ve been more sedentary due to a back injury so that might be a contributing factor. Either way, the saga continues.
Thankful and hopeful, but it’s back.
I am so thankful that I had the opportunity to work with amazing doctors. I am hopeful that I can work through the recurrance of pain one way or another.