Health Organization for Pudendal Education

Hi everyone! My name is Alex and I'm a young and cute Los Angeles Girlie who got some weird stuff going on.

I was wondering if you all could help me. I fear I might have ruined my life. I have a weird slew of symptoms that I can't figure out where to begin to get help.

Here's my story...

PRE MEDICATION
Nov - April : Working out 3-5 times a week doing extensive glute exercises, weightlifting and running for 1-1.5 hours.Little to no stretching.
April: Symptom #1 : Burning in inner thighs + back pain
May: Symptom #2 : Pelvic Cramps & tingly vulva
Did 3 rounds of antibiotics for what we thought was UTI, but was not.
June 16 : Symptom #3 : Vulva burning

POST MEDICATION
June 17 : Start daily 12.5mg Amitripalyne and got diagnosed with vulvodynia. Which I now realize was not a real diagnosis.
July: Stop all activity. Only move if necessary. Begin weekly pelvic floor therapy. Have very mild burning in back of the thighs that comes once every other week.
Aug: Return to work and buy groceries. I still had daily symptoms of burning, stinging, itchy, pudgy in vulva..
Sep: Began feeling better and started doing long walks to test my limits. After the walks, my legs would feel heavy, achy and would zap. My obturator nerves would get extremely angry and almost jump out of my skin.
Late Sep: Went on a weekend trip where I was walking almost normally. After the trip, experienced one week of full body zaps that eventually stopped.
Early Oct: Went on a mile long walk and experienced a full week of (Symptom #4) glute and hamstring burning along with the continuous vaginal burning.
Mid Oct: Began taking 300 mg of Gabapentin per day. Couldn't walk around the store for more than a couple of minutes without glute, hamstring, vagina burning. Symptom #5 body zaps and leg spasms that feel like bubbles (especially in inner thighs) start again.
End Oct: Main flare from the 1 mile walk has calmed down substantially with rest. There is less burning in general. However, the more I walk the more I aggravate it and the burning begins with zaps and bolt like feelings down the legs.
Nov : Received 400 units of botox into the pelvic floor from Hibner and my first bilateral steroid injection.
Dec: Feeling ok on 12.5MG of Ami and 600 Gaba + the stuff that Hibner did on me. But still having crazy bubbles and some burning.
End of Dec: Had to get off the ami and cut the gaba to 300 because of high HR. My symptoms came back full force and WORSE I could barely walk or stand. My legs were buzzing like crazy every time I walked and my butt would begin to cramp and hurt.
Jan: I upped my gaba to 900 and the burning in my glutes and hamstrings and vagina all got much more tolerable. I'm going to continue to up it but I can't walk without being in pain. I feel like my sit bones are on fire and might fall out. If I walk too much, my legs will ache like crazy and my butt feels like it got donkey kicked!! My mon pubis is all sensitive and vagina is raw.

Any and all help is appreciated. I don't know what I have or why my butt is involved. I am so lost. I don't go to work, I just lay down all day on my belly.

Hi Alex, sorry to hear you are going through this mess.
When you had the pudendal nerve blocks did you get any relief or partial relief of pain/symptoms even for a short time? If yes, then your pudendal nerve is likely the cause, or one of the causes of your problems. Exercise, including weightlifting is what got me in trouble too.
The treatments you are receiving so far are temporary pain relief options. Botox, if it works, often only helps for a few months. Pudendal nerve blocks are helpful diagnostic tools but some major medical organizations have published guidelines indicating that there is no evidence for steroid nerve blocks. And of course, medications are a temporary solution that lasts a few hours. So, the question is - what is the underlying cause of your pain? Since movement seems to be a major problem, you have to suspect that there could be something mechanical going on that irritates the nerve when you move, or causes a flare up not too long after.
For me, there was a nerve entrapment with the nerve compressed between ligaments, so that movement caused flare-ups. I was mostly in bed like you. So, you probably want to let Dr. Hibner know that the Botox did not help and see what he recommends. If you are a candidate for pudendal nerve release surgery, you can research the different surgical approaches to see which one makes the most sense for you. A physical therapy evaluation can be valuable to determine if you have strained ligaments, pelvic misalignment, sacroiliac joint dysfunction, or some other musculoskeletal anomaly contributing to putting pressure on the nerve. Pudendal nerve release surgery may take that pressure off the nerve if you have an entrapment.
Violet

Hey Violet,

Thanks for your response : )

When you got your surgery - Did they say where it was trapped?

I got my MRN back and it said I had inflammation by those ligaments... I'm scared that with my weightlifting, I made those ligaments thick and now the PN can't glide. The surgery for this sounds scary with having to cut those ligaments to release the nerve...

Hi Alex,

When I had surgery they said the entrapment was at the ischial spine where the nerve runs between the sacrospinous and sacrotuberous ligaments. My ligaments were chronically strained which caused pelvic misalignment and entrapment of the nerve more on the right side than the left. I also had pelvic hypermobility from the strained ligaments so I was scared to have the ligaments cut. The surgeon cut just the sacrospinous ligaments but not the sacrotuberous ligaments to release the entrapment and he also freed up the nerve in the Alcock's canal and shaved away a bit of the sacrotuberous ligament at the falciform process of the ST ligament. It was called the transischiorectal fossa approach to surgery but I don't think anyone does that anymore. Some of the surgeons do the transgluteal (TG) approach where they cut the ST and SS ligaments. Quite a few surgeons are doing laparscopic surgery now which is considered less invasive than than the TG approach. It would be nice if there were some decent sized research studies to determine which approach is most successful but I am not aware of any. If someone knows of any such studies, please post them!

What treatments have you tried so far? I think it's smart to at least be evaluated by a physical therapist who specializes in the pelvis to see if you have any musculoskeletal anomalies like hypermobility or misalignment so you can make a more informed decision on what type of treatment to pursue. They can press on the nerve at the ischial spine via the vagina or rectum to see if there is any tenderness where the nerve runs between those two ligaments. If they recommend trying PT you should know fairly soon if it's helping. Pelvic floor mysofascial release made me worse so it didn't make sense to continue with it because it just seemed like it was irritating the nerve more. That's when I became suspicious that it was entrapped because usually tight muscles respond to myofascial release but mine didn't. Also, movement made it flare-up later, which made me suspicious there was a mechanical problem like the nerve not gliding properly. Anyway, these are just some ideas of things to consider when you are deciding on treatment options.

Your initial symptoms sound very similar to mine but your post-medication symptoms seem to include more widespread problems. Since you have leg symptoms too, hopefully you have had a spinal MRI to rule out any problems there. Dr. Antolak recommended to me to have the lumbosacal plexus MRI as well as the lumbosacral MRI.

Violet

Hi Alex,

I’m sorry you are going through so much so young. Some of your symptoms are outside the distribution of the PN and I think it’s reasonable to request from your doctor MRIs of your lumbar spine and pelvis/sacrum to see if an issue can be identified that could be causing all your pain. It sounds like you have some symptoms of sciatica along with PN and back pain.

Stephanies

Hi Alex,
I hope that you are feeling better now, however, have you been worked up for MS? I have MS and many of the symptoms you describe are similar to what I have experienced. Just something for you to run by a neurologist.
I am so sorry for what you were going through.