New here, 18 and extremely worried

[travelisdangerous]

I need to follow along with what the lecturers are doing so can't really stand, however they do give us 2/3 breaks that last about 30/40 minutes which is good. Is this further damaging the nerve? The thing is I need to be able to sit for a decent amount of time otherwise my job aspirations are pretty much gone with this degree.

[Bertie]

I can't answer that, as you don't officially have any diagnosise yet, but PN and sitting do not go together there are special cushions out there. You really need to see a specialist physio.

[travelisdangerous]

I will go to a specialist eventually, my parents will pay for it but they want me to get this neurologist appointment first. I really don't think it'll be anything other than pn though. Are people with pn able to sit again eventually for certain spaces of time? Maybe if they find the right pillow?

[travelisdangerous]

Also I seem to be getting some pain on my thighs and my legs seem to twitch sometimes, usually when lying down. Is this common with pn?

[Bertie]

If it is PN or some other nerve issue in you pelvic area, it will more than likely be an area of weakness like some peolpe have migraines or IBS, the physio I went to who had PN for two years managed a flight from the UK to Chicago this year that is a few years after PN and was fine, but in the summer she did a tug of war competition and her PN came back for six weeks.

The leg issues are possibly your piriformis muscle that is aggravating the sciatic nerve, jumpy legs are quite common with nerve issues. I had this and went to a sports physio and he got rid of it after six sessions. I have never used a cushion as I could change my life style because I work for myself, but I can sit now for two hours on a hard or soft chair with no problem, if it's hurting then you need to get up, the cushions that people say are very good is the airflow one its a £175.00 but they say well worth the money. Have you tried sex again?

[travelisdangerous]

Thanks for your detailed replies! No I havent tried sex again and probably wont for a long time, that was really just a one off thing. I assume I damaged my dorsal nerve which caused the whole pudendal nerve to flare up.

I'd be very interested to know the onset of your symptoms. Did they start whith urinary problems like mine then slowly progress to sitting pain? Did it start off with just an ache then progres to full pain?

[Bertie]

Hi.....i try to offer what advise I can as I am having pain free days now since it started the beginning of this year. Two years ago I had a minor operation to have polyp removed from my womb, two weeks after that it started to burn when I went for a P, had urine tests clear, carried on with life with the P still hurting but not enough to bother me. Anyway got to January this year had a vagianal scan( sorry you did ask how mine started ) the consultant really was very rough and a week later bang horrendous burning in my vagina, back passage, clitoris hyper sensitive got PGAD persistant genital arousal syndrome awful awful awful, I was having a mini orgasm with every step I took and went to the GP wondering what was happening having a mini orgasm every few seconds and he sniggered, if I hadn't felt so ill and stressed I would have reported him. Got a new fantastic GP now though. My symptons where also pain down left leg, everything was on the left hand side.

So February is when I landed on Dr Baronowskis doorstep, went over my GPs head and self referred, he pressed the PN nerve and the pain shot to the clitoris, so as near as he could say yes PN, NO on or ANY scan can say for definate it's PN, but I was pretty text book. So I started the trawl of seeing other specialsits in Harley Street as I was not prepared to wait for the NHS , and the experts I wanted to see where out of my area, so I became my own educator and investigater for the problem. I constantly had a bee in my bonnet that I had a P infection even though they where clear, so I have recently been to see a Professor James Malone-Lee who has been studying lower UTI infections for forty years, he says the standard way of testing UTIs does not work, you take a sample to him and he immediately spins it and then does what is called a sediment culture which takes three weeks to get the results hence the NHS can't afford to do it and guess what I have a bad UTI. I started antibs three weeks ago, and most of my PN pain has gone, as the bladder and PN are closely related, I will be on a long course of antibs, as I have an infection of the bladder wall, all caused by the minor surgery two years ago, I have never had a UTI in my life and have not had antibs for 28 plus years .

My physio said it was my bladder that was the route of the PN, and a lot of specialists say that pelvic pain starts in the bladder, the pelvic floor tightens around the nerves and sets off a viscous circle. I made PN my job, turned down botox, and nerve blocks, and Cystoscopy's as I felt they where sticking plasteres and I knew there was a route cause somewhere. I am not out of the woods yet, but today I can report I have had NO pain. I would be surprised if your first attempt at sex caused this, think back as to wether you have had a bad fall on your butt, or going for a P hasn't felt right. When you do get to see the specialist if they tell you to have AB or C done, go home investigate and research as a lot of what is offered has the potential to make it worse, my mother also has PN and she has gone down the route of having nerve blocks and she is in a very bad way. This is embarrassing for you to be asked, but do you still get erections, do they hurt, and does Ping and opening your bowela hurt?

[travelisdangerous]

Glad to hear you're nearly pain free now, thanks for the post. I'm not embarrassed about sharing any details at all since I'm pretty worried and this is annonymous anyway. But I'm pretty sure this was from my sexual experience as it started at the exact same time (no previous symptoms like this ever in my life ever) also I had a bruise on the shaft of my penis. At the time I remember feeling some pain and I pretty much lost my erection. Must have done a bad move, bent it or something but I was drunk and didn't notice.

I dont get any pain with erections but funnily enough last night I got a pretty sharp pain in my penis head but this only lasted about 20/30 seconds. Was pretty strange though. At first I had quite bad urine urgency, it was a pretty intense feeling I had to go all the time but this subsided after a while, now my only urine symptom is urine leakage. Which is pretty annoying. Don't seem to have any bowel symptoms, apart from a mild strange discomfort if I've been sat for too long.

[Violet M]

Travel, you asked about being able to sit again. I can sit for many hours a day t my job but it has to be the right chair.

Hopefully the neurologist will be helpful. Mine was totally not helpful. Do you live near a good PT who treats PN?
Violet

[DaveM]

Tension or spasm of the psoas muscle can cause abdominal symptoms too.
Just one more thing to consider.

Violet

I would advise looking at your psoas muscle as well. You are doing a computer course so you are spending the bulk of your time sitting. The psoas muscle shortens every time you are sat down. Try and construct a standing work station for when you are studying at home. It is cheap to construct. Just some shelves to put your laptop at eye level and then buy a separate keyboard and mouse which should be at arm level.