Health Organization for Pudendal Education

mary jane wrote:@ chloe


well then what is it?? he wants to start from zero with me.... I'm like "send me to the pain cliniiiiiiiiiiiiiiiiic"

Apologises Mary Jane this is from your reply to Chloe not to me but i just wanted to say that in my experience once you get to a Pain Clinic they no longer look at your vulva - my appointments were often with a gynae and pain consultant together but on no occasion was i examined - it was all about pain management.

I would loved for someone to say they would start from zero with me instead of making all the running myself - i hope that it is of help to you.

Hang in there - fingers crossed for you.

Rosemary x

clo236 wrote: im seeing the consultant gyno jan 2nd and i'll say to her about womens physio therapy,but if they tried to get me to strengthen my muscles id know it was a no no as the other gp suggested :@. I definately feel that I clench involuntarily in response to pain and extreme emotional pain which could be the offending factor.

I was doing quite well until i flared it up (sitting incorrectly on a toilet seat and stretching, which sounds ridiculous-only thing I can think of.)

Chloe.xx

There is a right and a wrong type of PT for people with PN. Strengthening muscles is the wrong type because when your muscles are already tense and overly contracted it just exacerbates the problem. If you have a nerve entrapment stretching can be a problem too. So you need to find someone who knows how to treat pudendal neuralgia specifically. If they have you doing strengthening exercises they don't know what they are doing. Typically myofascial release is used to treat a pelvic floor that is overly tense.

Violet

Happy Christmas everyone,

Sorry I've come to rant/ask for some reassurance. I thought I was getting better and the pain was gradually improving. This sounds ridiculous but on Christmas eve I flippin' well tripped over my suitcase and in order to protect myself from falling on the ground I fell into the door frame, it was quite a slam though. My right bum cheek slammed into the corner of the frame but It wasn't near the perineum. After this I thinkthe nerve has been irritated/injured as the pain has really flared.

it's so frustrating as I'm being so cautious about bumping myself but because its the bum region, it's so easily bumped/scraped. I don't understand how the pain is really bad and I didn't directly irritate the perineum. I know no one really knows but i'm really anxious about it, have I really damaged the nerve just by slamming the bum cheek area????

i know this is the same with everyone else.. but I absolutely hate waking up in the morning...with a day filled with pain (((


Chloe

xxx

About one year ago, I had a minor fall near my bed and some how I consciously managed to land on the bed on one side of my bum instead of the perinneal region. It still threw me into a bad flare for a month, but later recovered to "normal" after that.

i'm just so exhausted i'm trying to study here but the pain is too much. I mean im just trying to work out over and over in my head if somehow a bang on your bum area against a door will affect the perineum even if I didn't fall directly on my bum say like in a seated position on the floor.

This is a bit off topic but does anyone know if Candice-Marie still uses this board or how she's getting on as her earlier experiences were sort of similar to mine.

Chloe xx

Chloe, I think trauma to the pelvis can throw you out of alignment. When my pelvis gets out of alignment it causes a flare-up of PN symptoms.

Haven't heard from Candice Marie for eons. I hope she is doing better.

Violet

Hi guys,

Sorry I haven't been on this site for a while, just have been so annoyed with the whole thing that I was either in denial/didn't want to think about it anymore (if that's even possible haha). Just an update, I can say that if my pain was at 100% when this first happened I'd say I was down to 50% within about 9 months. Definitely not what I wanted but at least its not getting worse. I do notice that my anxiety levels have sky rocketed though, just with the fear of causing further damage and possible permanent damage. I saw a consultant gyny who recognised that it was the pudendal nerve but said she wasn't really an expert so sent me to the pain clinic.

The pain clinic were helpful however the consultant seemed very 'ram-stam' with the whole idea of giving me a nerve block (he said he doesn't use steroids). I was very wary about this though as i'd be panicked about making the whole situation worse and possibly causing further damage. I feel like i've only one nerve and im only 19 so would rather maybe wait another year to see if the pain starts to go down itself while continuing medication. He talked about doing it before and from memory I think he said he used some sort of probe thing to detect if he was near the nerve and it would send some sort of impulse that I would feel then would injecting the anaesthetic. However this doesn't sound guided???? Not too sure on that one. He wants to do it in August..i think i'll opt out.

I pray to God that this isn't permanent for me and for everyone else and that i'll have a chance at a normal life. Reading these stories there doesn't seem to be many positive outcomes. I just know that if this was to carry on for years i'd definitely have depression. I find trying to deal with my dads death and this really over welming at times and want it to be over.

Is there anything I can do to prevent causing further damage? I know sitting is a big one but is there anything else?

Thanks guys,

Chloe xxx

Chloe,

Please do not be discouraged. The reality is that many people who do get better do not return to the forum to report on their progress. I can certainly understand not wanting to risk anything at age 19. I think if you have seen 50% improvement, you should wait on the nerve blocks and try to continue the things that have been helpful so far.

Sincerely,
Stephanies

Hi Stephanie,

I was reading some of your posts before and i'm glad your pain flare has subsided. Typical when I say things are going better they head in the other direction. Today I was taking my laptop off the charger when I was lying in bed and somehow it got caught and hit my between the legs (the laptop this is )...it wasn't a serious hit at all. If I hadn't nerve damage this type of hit/tap wouldnt have bothered me. Sort of just below the edge of the pubic bone where it meets your genital area. Now im lying here with a toothache type pain on the right hand side (this is normally where I have pain but not in that location.) Have I somehow caused more damage,,,or what does it take to cause more damage to the nerve? I would hate to be going backwards

Chloe xxx

Hi Chloe
I so sorry to hear your story but please don’t give up hope.
I am a 48 year old male that experienced PNE symptoms for 8 months in 2006. My mother passed away shortly before the symptoms started and I’m convinced that the grief related stress compounded the problem. To cut a long story short, after going to the clinic in Nantes, France it was decided that the symptoms were caused by the muscles in that area spasaming and aggravating the nerve rather than trapping it. This could well be the same for you. Try to keep that area relaxed as much and as possible. I know that is difficult but you could talk to you doctor about medicinal help for this. I used strong anti anti inflammatories by day and diazepam at night. It worked for me and hope fully it will for you too. Ultimately don’t give up hope as although these symptoms can take a long time to subside they will eventually. You are much younger than me and should heal well even if it does take time.
Take care and good luck X