Health Organization for Pudendal Education

My name is Clare and for about 7 months I've dealt with a lot of pain in the vagina the vulva the coccyx and lumbar spine it all started with itching painful over the vulva and burning inside my vagina this graduated to pain in the coccyx pelvic floor spasms and on and off prickling pain all over the vulva. So this has been up and down and severity for the last 7 months some days I have hardly any pain some days I'm in agony depending on what I've done the previous day's I have two young children one of which is on the spectrum so I'm very very active all the time I have been trying to treat myself by modifying what I do because none of the pain medication has worked so far or I have had horrible reactions to my doctor finally referred me to a pain specialist which I have seen the last few weeks and I am due to her a ganglion impar block in two weeks I am really nervous this will make me worse that is my biggest fear.
Anyway so the question in hand I have been pretty much baseline with my pain by my life modifications and able to do most things with mid to low discomfort but as the weather has improved I have been taking the children out more to the park and having to lift into swings and onto other apparatus as Mothers Do and I love it but now I am in worst pain than ever the pain is constant even when I lay down and stand it is like stabbing knife pain all along that the pudendal nerve on the right side and a little on the left pain has always been on the right side I couldn't sleep because of the pain it doesn't let up this is only for the last 24 hours so I am wondering is this just a flare or have I injured myself more I just want to know that this will end and I will get back to baseline like before because I have come to terms with this terrible injury because I don't believe in being negative but this is knocked me for six this is much worse than when it began so please if anyone has any advice it will be very much appreciated. I am only 30 and have two small children I really want to be active with them I don't want them to miss out, the guilt of having this condition is so horrible..... quick note I was diagnosed with fibromyalgia 5 years ago and I deal with flare ups with this also but I'm don't believe that my fibro flares affect my pudendal pain but I'm not sure yet. Clare...I live in the London area so if anyone would like to chat I'd love to talk to understanding people without having someone look at me like I'm crazy Haha.

Hi Clare,

I didn't catch what you did that you think created the flare? Fluctuating levels of pain are very common with pn, and I know when I'm in one, it's hard to imagine that it will stop, but it does. So, it seems likely that the this uptick in pain is temporary. I use ice and heat (e.g., heating pad, sitz bath) to control the pain. Have you tried that? The pain specialist should be able to prescribe medications as well. I have not had an impar block (though my pain doctor recommended it many times), but I have had two pn blocks, and both created flares and the steroid did not create any long term relief. But, they were useful diagnostically because the drop in pain (from the numbing agent) reduced my pain, which suggested that I had pn. Have you been diagnosed with pn? If not, you might ask about a pudendal block as a possible diagnostic tool.

April

Hi April.
What I think created the flare was picking up my toddlers loads over the last few days....i know what you mean because it feels like it will never end but i know it will lessen if i am just patient but it needs to hurry up lol....i have lots of sitz baths but i tried a cooling bag wrapped in a towel once but i think it made me worse unfortunately, I'm really sensitive to medication and reading through all the forums iv not seen many people have any luck with the meds....have you?? See this is what I'm worried about the impar creating a flare for me I'm really twoing and throwing about it....yes both my doc and pain specialist have said it's a pudendal nerve thing so I guess I'm lucky as it hasn't taken as long as some people to get diagnosed but I must say I did all the research and guided my gp because he didn't seem to know anything about it but thankfully the pain specialist did....he said if impar doesn't work he will refer me to the university college hospital London where I believe dr baranowski is so I'm hoping at some point I will see some improvement I'm trying to stay positive....how has your pain been lately???
Clare.

I see. Yes, I think movements that use the pelvic muscles and ligaments can create flares. Yes, pain medications have worked quite well for me and others. They often do not eliminate the pain, but they reduce it. Amitriptyline is often one of the medications that is first prescribed. I'm on that and have also been on nortriptyline, a similar drug. Both can help with nerve pain and they help you sleep, which is good if your pain is keeping you awake. So, you could ask about those medications when you see the pain doctor. My pain has been okay. I'm tapering off of a medication, so I've had a few flares lately, but luckily they do pass.

April