Health Organization for Pudendal Education

Hi, I still have not received a straight answer on this. Does PN gradually get worse? My sympotoms have been the same pretty much since this started in April 2014. I can function fully and have great days. I have been having slight irratarion at the top of my penis over the last couple weeks but I think it's from my boxers.

Any info would help.

Mine gradually got worse. Went from complete numbness to pain below my waist that I didnt know existed. Lost my career, lost my fitness, lost my social life & pretty much lost everything. For me surgery has helped a little but it has changed one pain for another almost as bad... Although I am still hopeful that things improve going forward.

My advice is if you can manage your issues with lifestyle changes, then stick with it... I would give everything I own to be back at the beginning of this injury...

I wish you luck.

Andy.

Chase,

I don't think there is a definite answer to your question. It seems to vary by person. Some get better, some get worse, some stay the same.

Andy_Pablo,

I understand too well the losses you have expressed. It is so hard to look back at how things "used to be".


Stephanies

Hi Andy, I'm so sorry for your struggle, thank you for your response. How long after you started feeling the first symptoms were you in really bad shape? Did you have surgery? If so wht? Was it a must? One thing dr. Jordan told me is that a majority of the people that struggle really really bad with this disease are people who let doctors poke and prod them. This seems to be a trend on this website in these blogs. I have read countless blogs that say people wish they could go back to before they started letting doctors cut them open and do surgeries. I feel like I am able to manage this pretty good but when I have flare-ups I panic therefore I blogot a lot. My flare-ups are annoying but I'm able to do everything I would normally do without one. Can you please tell me a little bit more about your situation and and how you came to have PN? Do you regret surgery?

Chase if you have had this for 2 years and it has not gotten worse then you should really just continue with conservative measures. At the height of my pain I could not work eat lost a lot of weight. If it was not for my 2 dogs I would have tried to kill myself. The pain was unrelenting. I have lost a lot due to this disease and can completely empathize with Andy. I still have not come to terms with it all.

ChaseJordan92 wrote:Hi Andy, I'm so sorry for your struggle, thank you for your response. How long after you started feeling the first symptoms were you in really bad shape? Did you have surgery? If so wht? Was it a must? One thing dr. Jordan told me is that a majority of the people that struggle really really bad with this disease are people who let doctors poke and prod them. This seems to be a trend on this website in these blogs. I have read countless blogs that say people wish they could go back to before they started letting doctors cut them open and do surgeries. I feel like I am able to manage this pretty good but when I have flare-ups I panic therefore I blogot a lot. My flare-ups are annoying but I'm able to do everything I would normally do without one. Can you please tell me a little bit more about your situation and and how you came to have PN? Do you regret surgery?

Hi there. Its natural to panic with this condition. Do not feel alone with that. I will try & answer all of your questions, but if I miss anything, then please ask again.

It took me about three months before I had to take time off work. I kept trying to go back, but it would flare up as soon as I did & after several months, that was the end of my career. The pain gradually become worse & worse over the next two years before I had surgery eight months ago. My injury initially started after a series of long distance cycling with a poorly fitted narrow hard seat. I then aggravated things further with some heavy lifting. I also had a "cortisone flair" from the nerve blocks & that created incredible unbearable pain for eight days & then things settled to an overall more intense set of symptoms.

I chose to go ahead with surgery because it is the last throw of the dice for me. Things have been difficult both physically & mentally & I need to at least gamble on improvement because I really had no other choice. It has helped in some respects, but not in others. Only time will tell if it helps. I do not regret having it but while Im not a praying man, I do over this.

I will say however that I can only speak from my own personal experience & as stephanies mentioned earlier, the condition is unique to each individual giving different causes, symptoms & treatments to different sufferers. I would suggest that if you can manage well on a normal day to day basis, then keep with the non-invasive management. It may be an idea to keep a diary of your flare ups so you might be able to pin-point the causes for your flare ups & hopefully might be able to manage things even better.

If you have any other questions, then please don't hesitate to ask.

Andy.

I feel like stress and anxiety make my symptoms worse. When I am really stressed and over thinking my condition , I am in discomfort. When I am completely relaxed I feel good.

Mind body approach is my next move...

I also find stress makes things worse. I think its because your body tenses up & puts strain. I try to meditate regularly & that helps a little I think.