Health Organization for Pudendal Education

We talk a lot about weightlifting, biking, childbirth and traumas to the body.
I'm sure some of us just woke up and our genitals were on fire, but I would like to create a new thread called (how did you PN start)
I feel that we all had WARNING SIGNS of our conditions and ignored them since they were slight and would come and go.
I feel we may be able to help the next generation of PNs if they are aware of the warning signs.
Here are mine and it started at age 4.

1 = shock waves through pelvis when sat on laps (started age 4)
2 = numbness in backside and legs with sitting (started age 6 at school)
3 = vomiting with prolonged sitting (If I lay down in cars I'm fine, but if I sit I vomit upon arrival on days when the pain was bad (started age 6)
4 = pelvic cramping (started age 7)
5 = numbness below the waist and struggling to walk off and on (started age 11)

All of that started for years before I ever had burning pains.

I'm trying to figure out if there are warning signs so that others can be aware of what to look for to be sure their bodies are healthy.

I hope this makes sense. I was too young to explain my pain as a child and for those of you that got PN as adults I feel like there must have been warning signs before it got to the point where you couldn't walk like me. I'm just trying to make this condition less scary and more tolerable than it has been for me.

Let me know what you think of this idea.

Loves

My pain began after SEVERE constipation caused by a medication I was taking. I had stools that were so hard and large that a doctor told me that my pelivs was put under the same strain as giving birth. Caused internal and external hemorrhoids and anal fissures.

I do have one memory from when I was in the 7th grade that might be PN related. I was sitting on the bus and I felt like I had slpinters in my urethra. Sharp pains. And in college, I had my first bladder infection. I always had bladder problems after that and was told I had IC.

Also, all my life I've had tingling in the perineal, labial and rectal areas just before a bowel movement. I thought this was normal and that everyone had this and that's how people knew they were going to have to go to the bathroom soon.

Emily B.

Mine started after a laparascopic vaginal hysterectomy and transobturator bladder sling.

Started as soon as the foley was pulled and had difficulty voiding, and symptoms continued a few at a time until about 20 weeks post-op such as bladder spasms, loss of voiding sensation, sensation of fullnes or something stuck in vagina, stabbing and knife like pains going up inside urethra and vagina, urethra pain, sensentivity to touch in perineum, painful sitting, pain with stairs, pain with walking, constipation, numbness across rectum, and rectal spasms. As long as I don't sit or if I do sit on an ice pack, don't take too many stairs, and don't walk to far I can keep the symptoms under reasonable control - that means an average pain of 3 but will ceraintly flare to 7-8 if I misbehave.

I was walking through the store when I noticed I had some vaginal itching...I figured it was a yeast infection. It has only gotten worse since then.

My pelvic pain began first with only pain with intercourse, which was diagnosed as vulvar vestibulitis (2008). I held steady with pain only with intercourse for a year, and then began to experience low level vulvar burning throughout the day and bladder spasms. It wasn't bothersome enough for me to seek additional treatment. 18 months after my vvs diagnosis (late 2009), I had a particularly painful menstrual period. I noticed I had pain with sitting and in my perineum--and it never went away.

Looking back, I was sitting for long periods of time, holding my bladder at work, wore lots of thongs and tampons, etc when my true PN symptoms started. I also have the risk factors of IBS and endometriosis.

I can remember as a child having clitoral and labial sensitivity. I'd always had pain with inserting tampons and pelvic exams, but I thought everyone did. And I strained for years with IBS.

Most of you know me from this board for 4 years now as another name ( if you read my footer, you'll figure it out). But I decided to change it just to give myself a little buffer from friends and acquaintances that don't need to know. I have my story about how it began, written in a blog that I did so I'm going to shamelessly post it. It's called My Story and I noticed how we all share many similar symptoms and progressions of symptoms.
So here is the link to my story.

http://vaginahaiku.blogspot.com/2010/11/my-story.html

Thanks Cora

Beth,
I did not have the electric pain that you had but I have had urinary incontinence. Dr. Hibner told me that because of the pain, my muscles couldn't take it and just quit when they were supposed to hold. When my pain is taken away, the muscles are very happy with no incontinence.
kat,
My pain was very moderate a 1 or 2 after I gave birth to my first daughter, 42 years ago. At the time, I thought it was just child birth pain and after that I got used to it.
About 7 years ago the incontinence started and I must have been in more pain than I thought but I just closed it off.
Six years ago, burning pain started on the left vulva. It started over night and it was an 8. I would have it for a month and then stop. It would start up lasting longer than stop.
I have rheumatoid arthritis, so I neglected the pain thinking it was my arthritis. But since last December, it has been terrible and constant.
Kate

Mine began after surgery to correct a severe pelvic prolapse. It was innovative surgery done here in the UK by an Australian surgeon, after I had initially been told by UK consultants that they could not do anything to help me. I would not wish to go back to the mess I was in before the surgery, that's for sure. And they did warn me that there was a possibility of nerve damage and increased pain.

Immediately after the surgery I had a clearly defined area on the left side that was completely numb, no feeling whatsoever. The defining line was down the middle, and the numb area covered the whole of the area innervated by the pudendal nerve on the left side. Over the next three weeks, feeling came back slowly, and it came back as pain.

It's been with me ever since. It is well managed at the moment, but there has yet to be a day when I don't get breakthrough pain. My best pain relief was nortriptyline and gabapentin together, but I could not cope with the side effects of the gabapentin so we dropped that.

We don't know exactly what has happened to the nerve. There have been no investigations, and I've been told that no repair surgery will be possible, should the nerve not heal on its own. But I realise now that the doctor who told me that, may not have been familiar with the surgery that is done for PN.

The nerve may have been physically injured. I had five incisions for the prolapse repair, which included one in each buttock. ( The incision on the left side gave me a lot of pain post-surgery but the one on the right was problem-free.) Or the nerve may have been damaged by a retractor, or a suture, lots of possibilities. Or the nerve may be compressed or stretched or irritated by some of the mesh which was used in the repair - large amounts of mesh.

So there is the possibility that the nerve may be able to heal, or this may not be possible. We are waiting to see what happens. I've been told that the timespan will be of the order of 1 - 2 years, it is now 16 months and counting.

Mine began after a horseback fall. I had had a previous surgery at L5-S1 for Congenital Tethered Cord Syndrome which required a bi-level laminectomy to get to the spinal cord. With those two spinous processes missing I do not have as much protection there and of course that is exactly where I landed. I fractured the sacrum and broke the coccyx to 90 degrees forward in the fall. Had severe sacral pain which continued after a reasonable healing period for the sacrum. Reported to all the docs that I felt like I had a curling iron on high stuck up in me, front and back. Stabbing like a butcher knife in the vagina, 24/7 burning like a lighter being held to me. Stinging, biting, aching, cramping etc, not to mention all the muscle spasms which result from being in constant pain. Also, shooting pain down the legs (perhaps from spasming around the sciatic nerve), numbness, urinary and fecal incontinence at times, sexual dysfunction. Essentially told I was nuts for four years until I found PN on the web and found Drs that understand it.

There was a previous poster (sorry forgot the name now) who had sudden onset, lightning type pain down the leg, numbness, nerve pain etc after a laminectomy. Could very well be scar tissue from the lam which is now entrapping the pudendal nerve, the timing was about right and the symptoms are certainly consistent. Glad you found us, hope you are seeing a PN doc.
Katherine

Well, at first I thought it all started after my first papsmere...

But now I think it started after a straddle fall I had at age 7, with bleeding labia.
Around that age, I started leaning to one side at the dinner table, and my dad would slap my hand that I was leaning on and tell me to sit up straight.

I also was constipated as a child.

Tampons hurt, not to insert, but to take out. Like knives. I had to breathe like giving labor to get them out. Only did 5ish tampons b/c of the pain.

Was a virgin. Had first papsmere. Most painful experience I had ever had in my life at that point.

Pelvic tingling started immediately after. Annoying tingling in labia, only stopped by pressure.
And random shooting pains in my vagina, very strong stopping me in my pain, like it was clamping down, suddenly, when I'd be walking around the house.

Got married. First year, intercourse was soooo painful at the opening, and movement nearly impossible, and penetration at first was nearly impossible but that got better in time.

during 1st year of marriage, I start noticing I want to get up from the couch in the middle of a movie cause my butt is uncomfortable.

About a year later, went on anniversary trip to Tahiti... a week after the plane flight, my butt is on fire! Even on the plane flight, I was sitting in all kinds of contorted positions. I remember telling my husband, oh, my butt is going to go numb, I am going to be so sore on this flight.... and yet I wasn't really aware of my pain yet... but I was saying that... so subconsciously I knew there was some pain.

But that's when my pain started full blown... crazy how it happens.

My pains were in the perineum on left and right sides, right worse than left.... not in middle of perineum. Little rectal burning. Sacral pains and scratchy brillo pad feeling on sacrum. 1st inch of vagina SUPER sensitive to any touch (1st inch is now better thanks to God leading me to have a vestibulectomy so sex no longer hurts!) Pains in labia. If I sat too long, pain would spread from sit bones region to sacrum, and clitoris (which would go cold). Intense sitting episodes brought on sharp electric feelings all over my legs, randomly, like electric water drops. I had pain in the heels of my feet too (gone presently). I had pain down the backs of my uppermost portion of my hamstrings.

I have supertight hamstrings, am very hypermobile in my pelvis, with the exception of my pelvic spasms internally. My hamstrings are very weak (because they are so tight because my PT explained that the pelvis relaxes some muscles to avoid pain so some other muscles have to pick up the slack. She sees hamstring issues in a lot of PN patients). My abdomen looks pregnant often, like the muscles just don't work.

Lately, if I am too constipated, it makes me hunched over, gassy, and occasionally get migraine headaches. Also, lately after my TIR surgery, my pain is more labial, and rarely in my sit bones region (the perineum).

Well, that's me.