Health Organization for Pudendal Education

Hi I'm new to the Forum, have been in pain for coming up 9 months, I was lucky to come across information on PNE myself and pass it onto my Dr who agrees it sounds like what I'm suffering with after various tests including a normal MRI showing no masses or obvious muscle problems or injuries. I have a computer data-entry full time job sitting at my desk 8hrs a day 5 days a week, which I think may have contributed to this condition, although it also started around the same time as a fall from a faint which left extensive bruising on my leg on the same side the problems are now, followed soon after by a kidney infection. Anyhow I don't think I'll ever know the true cause.

I am finding work extremely difficult, I have a donut cushion which helps, but I end up in so much pain by about lunchtime that I'm up & down off my chair all day, the pain and knotting on one side of my buttock is severe enough but then I get what feels like stinging nettle prickles spreading from my buttock down the back top of thigh and feeling like my clothing is shrinking to my skin even though I'm wearing oversize trousers to compensate, standing up is the only way for relief. I'm not sure if anyone can relate to this feeling, it seems like PNE causes so many differing symptoms in people.

Medication wise I'm on 300g of Pregabalin daily.

Yesterday my Dr confirmed they were going to assume I have PNE and refer me to Pain Management Clinic & the Physio and as I work for the NHS a referral to Occupational Health for work reasons. I have spoken to my boss to do the referral at work for them to look at equipment/adaptations to my job and have a meeting set up with her to complete the forms. Does anyone have any good information which I could hand to my employers to explain the condition and what might help, I really don't know where to start, its quite embarrasing explaining you have a pain in the bottom which when you sit for extended periods of time engulfs your whole pelvic area and feels like your clothing is strangling your whole pelvic area & thighs, I'll sound like a lunatic

Any advice appreciated, I cannot afford to give up my job or reduce my hours as already struggling to pay the bills every month, I am 42 so have quite a few working years left in me yet hopefully.

PS I live in the UK so can only get equipment available here

Hi Caz. Sorry to hear about your difficulties.

I don't know what equipment is available in the UK. Probably you could find out by contacting a medical supply store. A local physical therapist might also be able to give you some advice. Hopefully our UK members will have some info for you. Ideally you would need a workstation that allows you to change quickly from sitting to standing and possibly even reclining so that you can change positions frequently.

You are describing pain in the buttocks and back of the legs. Typically with PNE there is genital pain, perineal pain, or anal pain involved. If you don't have these, you may want to consider piriformis sydrome or sacroiliac joint dysfunction -- or a combination of the two, or a combination of those 2 with pudendal neuralgia. Posterior femoral cutaneous nerve neuropathy should be ruled out also.

Wow, how to explain this to your boss?? That is a tough one. We have a handout for medical professionals but it's pretty explicit about the genital symptoms. If you could get evaluated by the PT and zero in on the musculoskeletal components involved (that might include the piriformis muscle or SIJD), maybe you could focus on those in what you present to your boss.

I understand the feeling your whole pelvic area and thighs being strangled. You've probably got a lot of muscles in spasm down there.

Violet

Thanks for your reply Violet

I firstly suspected Piriformis Syndrome as my pain predominantly started in my left buttock and felt like a knotting/object in my left buttock whenever I sat down but seemed to disapear on standing. But my Dr ruled out Piriformis as nothing showed on the MRI and then said it was my nerves which lead to possible PNE and medication of 300g of Lyrica. Since this happened and is getting progressively worse I've also suffered problems with Urinary Retention - feels like I need to push out a wee when I need to go and problems with my bowels. Also having problems in the bedroom with loss of sensation so no enjoyment in that area for a while now . At work my main issue is sitting, and the symptoms I mentioned. The pain I get in the genital area is just the feeling of even very loose underwear/loose trousers feel like they are cutting into me, almost a complete sensitivity to anything touching that area when I sit down.

I have my first Physio appointment next week, I am just hoping they have knowledge of the conditions but I will be bringing along printouts from this site to ensure they don't do any of the 'wrong' things that could make everything worse.

I think with my boss, I hope I can just get away with saying that I have pain on sitting so need a possible solution to that, not sure how much information she will need

Thanks

Caz, my understanding is that MRI's aren't necessarily accurate in diagnosing all mechanical issues. Hopefully your PT will be able to add some insight into what's going on with you.

If your boss will accept something general rather than a detailed diagnosis that would be great. My experience has been that most people prefer not to hear about the details of our condition -- they just don't get it.

Good luck with PT. I hope you find it helpful.

Violet