Health Organization for Pudendal Education

I know what you mean about pain moving around. I have moving vibrations everywhere on my vulva, right buttock, the sole of my right foot?
I feel like going mad.

it;s good to have uni in your life to provide for daily occupations. You need to have some normalcy in your life. Staying in bed 24/7 monitoring your symptoms isn't going to help.
Perhaps you could try seeing a pain clinic in the future, maybe get an MRI?

Hi Mary Jane,

If u don't mind me asking how long have u had PN for? Yes uni is good to some degree but it also makes me feel almost jealous when other people have fully functioning relationships and not a care in the world..Also I feel like i'm constantly irritating the nerve without knowing at the time..is that normal??

Chloe xx

hi chloe,

well I've been in bad pain for 10 weeks, it started in my right labia due to a ruptured cyst in my bartholin gland. The infection in this small cyst irritated the gland which has some internal scar tissue, bla bla, autoimmune reaction, at least 10 doctors have seen my private parts with little help.
I've been diagnosed with vulvodynia so far, but I think I also have vulvar vestibulitis (with vulvar swelling), vaginismus AND pudendal neuralgia symptoms, since this nerve is connected to the stupid bartholin gland. I've ended up in the ER/A&E last time to be told I have a UTI?????? they found excess white blood cells in my urine and blood in my urine as well, so f.... knows what is going on !!!!!! They gave me augmentin with penniclin in it.
My privates are like an electric fence and have a post-surgery feeling (??). I cannot wash the bloody area properly! I'm on 30 mg amitriptyline which allows me to wear knickers, walk and sit for 5-6 h a day.
I've also abused NSAIDs this whole time, strangely, at first they really worked for my pain, not anymore. I am seriously considering Lyrica and some botox and even more injections. I don;t care how bad they hurt. I AM SO FREAKING DESPERATE RIGHT NOW I AM ONLY 26 FFS !!!!!!!! There is SOMETHING vibrating or spasming in my right buttock !!!!!!!!!!! WHAT IS IT GOD

i'm sorry for the rant Chloe

yeah, I know what you mean about feeling jealous, I cannot walk past couples without feeling dysfunctional. I commited internet suicide last week by deleting my facebook, in stagram, twitter, everything. I have some Tramadol in my purse but I'm keeping it for a really bad day.

another thing: I've read your posts again.
1. you are very young, you will heal fast
2. take some supplements to promote nerve healing
3. try reading the mind body prescription by john sarno, it makes some great points. Seeing how you've been going through a lot recently, it might have interfered with your pain. Negative emotions promote continuation of pain.

Chloe

Just to pop my head in and say Hi - i missed your posting last week. So glad to read that you are a bit better and enjoying Uni - i am sure that your poking is not doing any permanent damage.

What a good idea to use a hoodie rolled up - i am going copy that with an old jumper when out - at the moment i use my garden kneeler pads which i am conscious of drawing attention to.

As for sitting without using your hoodie - maybe try it a little at a time and if it feels worse go back to using it. Sometimes i sit on the edge of a chair - keeps the vulva in 'mid air' so to speak.

I think that the nerves can feel worse at times and you just can't really pinpoint the reason why - that is what i find - i had a bad spell a week ago and couldn't tell you what i had done any different to make things a bit worse.

Use every distraction possible to keep yourself positive and don't give the ******** pain your time.

Take care

Rosemary x

Hi guys,

Mary Jane it sounds like you're early days so things hopefully could heal...fingers crossed!!! Went to a GP today over here in Scotland...big mistake!!!, she was so negative like there was no hope and had the emotional range of a dishcloth, even when I burst into tears she didn't even acknowledge it. Kept going on about because I was about 5 months on that I should ask for a nerve block,,,,this kinda freaked me out as I was always wishing that I could heal myself as I've read some bad reports on nerve blocks that it would make you worse. She wasn't open to me trying different medication instead of the lyrica "as they all work the same".

The worst thing with pudendal nerve pain is that it feels like its unavoidably irritated all the time as u use ur bum for so many things..so I just feel it's harder to heal.
I now understand how people can slip into depression with this kind of pain.

Yes Rosemary i think the jumper/hoodie idea is good when you're somewhere that you'd feel embarrassed bringing a pillow in to.

Take care guys,

Chloe xxx

Clo, if you are near Edinburgh you might want to contact William Taylor, a PT there who others have posted is excellent. He might be able to advise you on a physician too. Not sure if he treats women but he would probably know someone who does. You can get his contact info under List of PT's from the homepage at pudendalhope.org.

Violet

@ chloe

my GP is an idiot as well, she shrugs her shoulders, prescribes a pill and says "GOOD LUCK WITH THAT!"...
I saw a gyno yesterday at st mary's hospital in london and he was awful. He said I do not have pudendal nerve problems or vulvodynia.... He poked and prodded, I started crying and shaking
well then what is it?? he wants to start from zero with me.... I'm like "send me to the pain cliniiiiiiiiiiiiiiiiic"

chloe, violet has a point. I know a LOT of ladies who had a lot of luck with valium/diazepam suppositories (uk has them)....they numb you very well and then the PT can massage you internally and externally and get rid of sore spots

Hey,

Thanks Violet, yes 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.) I find myself over anlysing everymove I make to not flare it up and getting really anxious about it---seems to be like a really bad tooth ache pain in the perineum. I've no idea how this nerve is going to heal fully if its so easily irritated----I don't want this to continue (((

Mary Jane stick to ur guns if u think its a nerve issue like pins and needles, crawling sensation esp, Also burning and a tooth ache type feeling, Ive no idea why they even become doc's if they have no empathy for people, esp when we're fragile...I just felt like all hope was given up for trying different things except nerve blocks which seem invasive and could make things worse

Take care,

Chloe.xx