Health Organization for Pudendal Education

clo236 wrote: 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.

Sounds like a nerve block using nerve stimulation, probably the same way Dr. Redmond does them. Dr. Redmond is a physiatrist who did a fellowship in electrophysiology and has done pudendal nerve blocks for years. He told me that he feels nerve blocks done using nerve stimulation guidance are more accurate for locating the nerve than other techniques such as image guidance. I don't know -- I can't say for sure if it's more accurate than image guided -- maybe depends on the experience of the physician.

But really, if you are getting better and managing OK, why risk any invasive procedure?

Violet

so sorry to hear that you lost your father. sex sucks with pn! no lie there, and not going to sugar coated it for you. it sounds like you also have vulvundnyia, i have that too, and it is horribly painful, if and when i have sex now, i need to use a lubericate such as ky, and there is no foreplay. My poor husband, i used to have sex all the time, but now, good luck if its once every 2-3 weeks. i just dread it. i had pain with sex back in 2006, when i was digonsed with endometriosis. And in 2008, i developed pn, even though it took 3 years to get dignosed, and a thrill of horrible surgeries & procedures. Vulvundnyia developed with having these other issues. Check with you gyn. Make sure they know what they are talking about first. that is the hardest part is to find a doctor who doesn't think you are crazy and making it up. but more and more people know about it now, then they did a couple years ago. good luck to you!

Hey guys,

thanks for the replies. Violet I think that I agree with you that if I feel like there is some improvement then just stick with it and not get the nerve block. I would consider it though if this went on for years. Elephants 27 I have to be positive in regards to sex that my pain will get better or then whats the point anymore im 19 .

Just a question is there anything that will cause more damage to the nerve ( I know sitting is one), what about hitting your bum area off a chair I mean not a massive smack but like a little hit? Would that cause more damage. My anxiety levels have sky rocketed with every move as I keep thinking I will damage the nerve further.

Thanks

Chloe xxx

Hi guys,

I really need your help, I'm becoming completely overwhelmed with the situation lately and the added stress. Currently I am cramming for an exam on Thursday which is 1hr 3o mins. I had thought of a 'system' in the last few months where if I HAD to sit i'd sit on my thighs, bum slightly in the air however this would cause my lower legs to go numb because of the pressure. When I got up/shifted the blood would rush back into my legs. I thought this would be a small price to pay for limiting any damage to my pudendal nerve.

However I have developed sore slighly swollen shins and i'm petrified that this will mess up my legs (possibly damaging nerves and tissues maybe varicose veins). I can't bring a hoodie to roll up and sit on as all jackets and coats not worn must be put to the back of the room for the exam. I'm only 19 and don't want to bring a frigging pillow everywhere with me to sit on, I would happily do it infront of friends and family but as I just moved over to another country for uni i'm trying to make friends. Even the neck cushion I use doesn't completely work.

Young people can be so cruel and not very understanding ,I don't want to look like the freak. The pain I experienced in June last year was unbelievably excruciating-I used to pace up and down the hall from the moment I got up to the moment I went to bed. I never even got changed out of my pj's- I couldn't function. If I said I started at 100 % I'd be about 40-50% some times lower. Pins and needles are still there. I don't understand how a one time incident of 'roughish rubbing' from a bf could have started this.
I never have had any symptoms remotely with urinating, bowels, pain, numbness, constipation, fall NOTHING!!!!

Every doctor I've spoken to, some aware of the pudendal nerve have said about sitting 'well unfortunately you can't avoid sitting in life, you're just have to sit.' Sometimes I think why bother with all of this added stress. What happened to the relatively 'care free' life a young person is meant to live.

Sorry for the venting,

Chloe xxx

Chloe

Have you got any letters from the doctors that you have seen to say that you have a nerve problem.

Could you show a letter to the adjudicator of the exam and explain to him/her that you normally sit on a rolled up hoodie for comfort and let them check through your hoodie before you use it.

Can you substitute the hoodie for some tightly rolled up material - duvet cover of something - if the hoodie is not acceptable to the examiner. I would find out who is in charge of this exam today if you can.

Explain that you might have to stand up every now and again as well if you need to - an hour and a half is a long time to sit still for.

I may have mentioned to you that my vulva nerve problem stems from it being rubbed - i don't tell other people this generally for fear of being judged - i just say that i have a nerve problem in the pelvic area to explain why i am in pain and can't sit normally. Your friends ought to be able to understand a similar type of explanation for you - if not i wouldn't count them as friends. You are not a freak but a bright young woman trying to cope with something.

Rosemary XX

Hi Rosemary,

Thank you for the reply. My plan is to wear a hoodie tomorrow and just pretend that im feeling too warm, take it off and sit on it. I'll probably ask to go to the toilet (just so I can get up). In hindsight the way I sat to try and relieve any pressure was probably not brilliant, I was just too focused on the pudendal nerve.

I feel like i've almost given myself sciatica as my legs below the knee are slightly burning and i'm getting electrical zaps and prickly feelings (something we can all recognise as nervy). I hope this isn't a permanent thing .

I just felt at the time if sitting brought my pain up from about a 4 to an 8 then i'll do whatever it takes to take the pressure off like adjusting myself in the most uncomfortable positions, just because I was so fed up waking up in pain.

Chloe xxx

Hey guys,

so I sat through roughly 1 hr 20 mins of the exam yesterday and managed to wear the hoodie and then take it off and roll it up however due to the type of chair the hoodie kept falling through the back of it. I however put it under one bum cheek just to see if it would take the pressure off the affected side and it did also I kept shifting around.

However I'm having a pain flare at about 7/10. Have I damaged the nerve or just caused I flare. I mean how much sitting would cause damage? I really am at my wits end its been like 11 months and I thought I was going forwards not backwards. I just feel like I don't have much hope of a normal life

Chloe

xxx

Hi Chloe
Glad that you got through the exam ok.

I just wondered if you have been able to see Bill Taylor the physio in Edinburgh (who Violet wrote about a few posts back) to have your pelvic floor assessed to try and determine things. I am not sure how far you are from Edinburgh at Uni but it might be worth a journey.

Uni must be breaking up soon which could give you the time to explore this. It may help some of your fears around it all too to have someone else assess it and possibly offer some help.Stress and anxiety as you know just makes pain feel worse.

I think you are from Ireland and there is Maeve Whelan who is a Physio in Dublin listed on this site under pts on the Home Page who understands PN.

http://www.pudendalhope.info/node/60

I know that your Dad has passed away but does anyone in your immediate family know what you are trying to cope with at the moment and can help you ?

Rosemary X

Chloe,
So good to hear you made it through the exam. I would guess you are having a flare, impossible to avoid but I doubt it is permanent damage. Be prepared it can last a while, I think I have heard others have flares for weeks. I usually only flare days but we are all different. Try to take this as a passing phase and not stress over it. Take care and getting an eval from a physio and some treatment could make a world of difference. Good luck
Janet

Hi guys,

Thank you Janet for your reply you really reassured me not to panic and the flare only lasted 2 days. I will enquire about physio over the summer and hopefully get something sorted. Rosemary aswell as others i'm really greatful for all your replies, it helps knowing that there are people out there who understand and can help cause I feel that with this sort of problem there's not an awful lot the medical profession will do, I'm just sent home to wait with tablets.

I'm just wondering Rosemary, you said that your PN problems started due to a similar reason as mine, did your pain ever lesson/get better and how long?
If I bring up the conversation with my mum she normally just changes the subject, I wish my Dad was here he was always very sympathetic if I was in pain.

I pray to God that some day I can look back at this year/the next few years as a bad phase in my life and that things will get better but I'm feeling doubtful.

Thanks,

Chloe xx