Hello, I've been searching for answers everywhere but no one can seem to help me. I'm only young and this has been tearing my life apart for almost 3 months now. My symptoms are things like burning in the vulva, vagina, hurts more when I piss and about an hour or two after I have, pelvis, and now it's spreading to my back and sometimes feels like I'm shitting a knife. As I said these feelings are continuous and have been for months now and it's very difficult because I'm not gettig any answers.
It started off with just burning to piss. I would feel a bit sore down there and pissing would burn a lot, but I didn't think much of it. After a week of it, I started googling yeast and bacterial infections. I got treatment for a yeast infection though it wouldn't go away. I used the cream for about one or two weeks and took three tablets in that time. The pain just worsened and I would spend my nights crying in chronic pain. I couldn't take this anymore. I went to a doctor and he said it disnt sound like a yeast infection if it didn't go away with that amount of treatment. He did a test for yeast and bacterial infection. Both came back negative and I was told that it was a "rash" from a "reaction" and that it would go away. I didn't believe this.
I spent Christmas in bed sleeping, as the only time when I'm not in pain is if I'm asleep or drunk which I've grown to do considering it takes away the pain. No matter how much codiene, ibuprofen, panadol, anything from over the counter, doesn't work. I'm still in excruciating pain.
About 6 weeks passed and I went to the hospital from how bad the lain was. They dismissed me as "hormones" and advised I went on the pill to sort this out, along with giving me tablets for period pain. Thanks, but I think I know whether this is "period pain" considering I had it for 6 weeks straight. It was obvious the hospital didn't listen anymore than the doctors. the only good things they did was test for PID and a pelvic ultra sound which came back normal.
It's becoming worse and worse and I'm really unsure what to do. I've been doing my own research and found Out that pne sounds exactly exactly what I have. There are no symptoms I don't have.
I found a chripractor in hope she would be able to help. She'd never heard of pne but told me her thoughts - get the back in line and everything else should sort itself out. She did nerve testings that apparently showed that there were no nerves entrapped anywhere in my spine, but I believe there could be in my actual vulva area. She sent me
For x rays as apparently I seemed off and came to find I had a neck injury, a long left rib, and uneven pelvis. She said my pelvis was jammed and was not moving. I've seen her twice in 4 days and seeing her again in a few days. She has helped it, maybe a little, but not everything. She's helped my back And tingling in my feet a fair bit but not helping "down there" at all which was the only problem I really had anyway.
Anyway, does this then sound like PNE? I've tried everything and school goes back soon, which i am thinking I'll have to drop out if I can't get them to email work to me at home as I cannot sit for long if at all. I have had to take a few weeks off work as well because it hurts so badly afterwards from all the bending and moving. Sometimes it hurts so much I just want to die because that's the only way I feel I'll be in peace. I was happy where my life was heading before this happened, and now I can't move from bed without being in agony.
Any suggestions would be helpful. I'm thinking about surgery in Sydney but this is a scary procedure, and I want to know if there's ANY other possibilities other than this and that vulvodynia thing. Thanks everyone.
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I will go into more detail later, but firstly was there anything that triggered your pain? and have you taken antibiotics for your bladder pain as you need to rule out a UTI - urinary tract infection first.
Yeah they tested for a uti and it all came back clear. There a few things that could have started this pain but I think the main trigger was my boyfriend - I'm not sexually active but we've done "stuff" and the mornin after was when it was starting. Now it's just gotten worse and worse.
If there is no one near you maybe you could contact the nearest and see if they have any suggestions for who may be nearer you.
It is a good idea to try and get things under control and medication could help.
If the pain is neuropathic a combination of anti depressants and anti seizure drugs can be beneficial. It is often a case of experimentation to get a good combo that suits.
Thank you heaps. I'm in SA but I'm willing to travel. The hospital in Sydney do a combination of physiotherapy, nerve blocks and surgery to help. I know that the longer you leave it without treatment the worse it gets, am I right? It's a difficult thing because Its a hard topic to talk about with anyone. Feel sorry for everyone who has this problem, hope that this sickness gets more awareness because it is a horrible thing to deal with and it doesnt help having people tell us it's in our heads.
It is not always true that the longer it is left the worse it will get. If the problem is an irritated nerve from tight pelvic floor muscles for instance once the muscles relax things can improve. BUT it is true that the sooner it is dealt with the easier and quicker a good recovery. Should have also mentioned to stop sitting as this can often help.
To stop the burning when you have gone for a wee you need to wipe gently around the vulva,urethra to dilute the acid from the urine. The reason why it hurts is because you are sore and urine burns. Its a nuisance but its worth trying it. You need to go on meds for the pain, which will least it it in order that you can function. Your GP will probably start you on an a/depressent called Amitryptyline 10mg which can be upped each week. By the way nerve pain is always worse when you have aggravated it the following day. I end up it hot sweats at night when I have overdone things, its basically my body telling me to calm things down a little. Be strong, things will get better, but it does sound like your symptoms are PNE related.
Thanks for your answer, I'll certainly try this though wouldn't it also be the pressure of it coming out that makes it hurt when I pee? I've definitely noticed it hurts the next day after youve over worked yourself. Have you been diagnosed with PNE or just assuming?
I've been diagnosed with PNE. Everything in that area is affected. It causes bladder pain, sometimes burning but most of the time I get bladder spasms. Also your bowels can be affected. Feeling like there is a fist in your rectum or your pain starts after a bowel movement. It's very important to keep as regular as possible with stool softeners as constipation can set off a big flair. Get to a Pain Management specialist and try to get some relief and then explore every option you can. Good luck.
Thanks I'm trying what I can but no doctors in my area have even heard of the pudendal nerve, let alone pne. I really appreciate your answers. Thanks heaps.
Only just found this thread today. I have had many of the symptoms you describe and agree with all the above especially the way everything gets worse the day following exertion or exercise. There are a few things that have helped me - though I think everyone is affected slightly differently and you have to find out what's best for you.
I never, ever sit on a chair without a U shaped cut-out sponge cushion which I have also raised at the back with pads of bubble-wrap, and I sit as little as possible. I think this is why I have managed my condition for some years now without it getting completely out of hand. Also whenever I pee I wash myself with cold water before patting dry - I keep an old detergent bottle filled with clean water which I can use to squirt water on myself - which I find really helpful. Hope you might find this useful.
you could have interstitial cistytis and vulvodynia, but no, it sounds like pn
You sound just as I did for seven years,and also thinking there was nothing to do but die.....God would understand....you don't have to live like this but you must find a proper pelvic specialist...my life was saved with internal nerve blocks...NEVER let anyone do this while awake...a proper dr.would not try....you can't bear it....however after two or so years,,my disease worsened and thank GOD I had become aware pudendal surgery,which I had two weeks ago...on my way up...........you have wasted a lot of time with drs,asi did,but,they just don't know or want to learn this.....please go to my YouTube ,Judy Rentz Pudendal neuropathy.......you are so much like my pain....my heart breaks...let me know your location...JudyR
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