Health Organization for Pudendal Education

Hi Everyone! I am new to this site but unfortunatly not new to the symptoms on PN/PNE. I honeslty am not sure if I am even in the right place but thought I would share my story to get all of your thoughts and ideas and maybe lead me in a direction to get a diagnosis.

It all started in May 2011. I had been working out a lot, doing Power 90x and playing kickball; excercises I had been doing for over a year. I began with symptoms of severe hyper arousal. This lasted a few weeks and then the symptoms turned to extreme burning pain or sometimes extreme coldness that would be in and around the vagina, in between my thighs, or in my sacrum/tailbone area. The location of pain changed from day to day but the intensity remained the same. This lasted about 1.5-2 months and the pain went away (thank god!!!!) and was replaced with tingling and buzzing in the same areas. The pain has not returned at all but I am left with this annoying tingling which sometimes can extend down to my feet. I have tingling pretty much all of the time. The intensity is less when standing but I can feel it when I lay down and sit. The only time I can not feel it at all is when walking. Sometimes I feel like the tingling is improving and I get so excited only to have it come back the next day very intense. I tend to do better on the weekends

Since May, I have had an MRI of my spine which showed a small, 9mm Tarlov Cyst in S2 (now I doubt this has anything to do with my symptoms because why would they improve if a cyst was pushing on the nerve....this is just a guess). I had an MRI of Brain which was normal. I had a Potter MRI which was normal. I saw Dr. Marvel in Baltimore who said I did not have PNE because I did not have pain when he pushed along the course of the nerve.

I have no idea what is wrong and although I am soooooo thankful I am not in that pain anymore, the tingling that remains indicates to me that something is still not right. My urogyn said it sounds like I am getting better and it could take 18months for the nerve to heal. I am just getting inpatient. I want answers (like all of you)! Thankfully, I have a very supportive family. I just got married in November 2010 and these symptoms came on a few months after that. It was/is a true test in our relationship but my husband has been wonderful. I also just found out I am pregnant! And although I am thrilled there is a part of me that is PETRIFIED that the pain will return. I think I have cried in my OBs office every visit. We talked about a C-section and I think that is the route we will take.

Thank you for listening

Hi Alli,

Congratulations on your pregnancy! I think you are wise to plan on having a c-section.

It sounds like your problems are in the distribution area of the pudendal nerve and many of your symptoms are similar to what women on the forum experience but with that said, often it is difficult to determine if you have pudendal neuralgia/pudendal nerve entrapment, or some sort of radiculopathy originating from the spinal/sacral area. Since the pudendal nerve arises from S2,3, and 4 I'm not sure you can say with certainty that the tarlov cyst is not the problem. And although Dr. Potter's MRI shows entrapments it's not been proven that her MRI's show all entrapments. Since you were pretty heavy into exercise I think it would make a lot of sense for you to see a physical therapist (if you haven't already) or manual therapist who specializes in the pelvis, including pelvic alignment, sacro-iliac joint dysfunction, and pudendal neuralgia. You wouldn't necessarily have to go through physical therapy treatment but just an evaluation could give you more info. It might ease your mind to confirm what Dr. Marvel said and to possibly get more information on the state of your pelvic floor, pelvic alignment, etc.

Best,

Violet

Thanks for the reply Violet! I actually already saw a PT and according to her everything seems fine! It so frustrating when everything comes back normal but you don't FEEL normal. I know we (the doctors and I) are missing something but I just can't figure out what it is

Alli, maybe you want to get an opinion from a doc who specializes in tarlov cysts since the PNE docs and PT are telling you it's not PNE. Do you know if your MRI included the lumbosacral plexus?

I am not sure if the MRI is of the plexus but it does say MRI of lumbar sacral spine. Maybe I will look into the cyst, if its ruled out then thats one more thing to check off the list!!

Thanks Violet

Hi Alli,

I was still a newlywed when my pelvic pain and then PN started, so I understand the toll this takes on a young marriage. I'm also a person who has experienced healing and some pain relief over the period of a couple of years, so that CAN happen without surgery.

Congratulations on the pregnancy! There are definitely a lot of emotions and fears that come along with that when one doesn't have a chronic condition--throw in chronic pain and it's enough to make you crazy. I'm nearly seven months pregnant, so I fully understand those concerns and fears.

Let me know if you ever want to chat about any of these similarities.

Take care,
Lauren

P.S. Violet has excellent suggestions in terms of checking out that cyst and a physical therapy consult.

Thanks Lauren for the reply! I would love to chat sometime! I will PM you soon! I will def have to get the cyst checked out although I have brought it up to a neurosurgeon who assured me it was not causing my tingling. I do know that many MDs do not think Tarlov Cysts cause symptoms so I may need to send my MRI to a specilaist in TC's.

I may try a different PT just for a second opinion, because the last PT I saw said everything was fine!

Thanks everyone

On cyst try dr kuthoria at Johns Hopkins

Allie,
Same here,with very extreme exercising routines before pain showed up her ugly face,i was doing a lottt,running 6 miles,4 times a week,insanity,lifting weights .you name it.

I saw Dr. Marvel in Baltimore who said I did not have PNE because I did not have pain when he pushed along the course of the nerve.

Can you tell me ,where exactly he did push when he examined you?please? please? i live in Maryland and i am considering seeing him if my pain doesn't go away.
my pain is mainly rectal,sometimes perineal,and vaginal tightness,can you describe the examination more ?


Thank you so much.



Lara.

Sure! He basically pushed along the course of the nerve internally. He also did the Qtip test and took a culture to make sure there was no infection. He told me I do not have PNE and that my symptoms should improve in 6 months time. My symptoms have definitelty improved however they are not completely gone and are still VERY noticeable. I have stopped making MD appts at this time, but plan on revisiting this after my baby is born if my symtoms are not better by then!

Davemom-Thanks! I will look into this doctor. Was he/she recommended to you by somebody?