Depression... My story

[Bobby]

My name is Bobby, I'm 22, I live in Southern California and I believe I have PNE. The first time I ever felt any pain was when I was 13 and playing tackle football. For several years after that I would be in serious pain everyonce and a while, maybe like once a month, usually after ejaculation (please excuse me for that). Around 17 one day just started feeling extreme discomfort and pain everyday. For the next year I went to urologist after urologist with the same diagnosis, chronic prostatitis. I was indiscriminately given medication after medication with no results. Around 18 I met a girl who I fell in love with. She also had chronic pain, ovarian cysts, so her and I related quite well. For the next 3 years I felt... Better kinda... Having pain only once and a while. I think perhaps it was from the kinda "relief" I received from her quite regularly... Kinda like a therapy of sorts. Of course that's only a theory. Anyway we broke up about 3 months ago in August. I was quite depressed about that but recently my symptoms have been becoming quite apparent to me. I started doing more research and found a forum in which a gentlemen was posting about chronic pain and how his doctor was giving him the same go around as I received, prostatitis. Someone then posted that they had received the same treatment and found out about PNE on the Internet. I ever since then have been exploring this possibility of PNE. I have similar symptoms to the condition. Most of the pain and discomfort lye in my urethra. I have always noticed leg pain as well that run parallel with the urethra pain. After sitting for a little while my feet would feel numb and I would have pain from my hips down. I often feel of a foreign object, that being the discomfort in my urethra. Anyway I told my doctor about this and he had never heard of PNE but he was quite open minded about it and has referred me to a local neurologist. I am doubtful he has ever heard of the condition but I plan on educating him and hopefully receive some nerve blocks. At the moment I am quite depressed about this... I feel I'll never be accepted and loved again... Like I'll be alone forever... I feel very isolated... Disconnected. I am having a difficult time at work as my job required sitting all throughout the day. I have been kneeling in front my desk hoping to dodge extreme pain... So far is has been kinda working... Anyway that's my story... I hope to find someone to relate and talk to.

[carolynm]

Welcome to the group, Bobby...I'm so glad you found us and so sorry you have had to deal with this so early in life when you didn't have the tools to find the answers.

There are several men on the forum from whom I'm sure you will be hearing. My neurologist had never seen a case, before, either...so take plenty of info from the HOME page with you to your appointment.

You are not alone. You are among friends here.

cari

[Violet M]

Hello Bobby. If you can get in to a pudendal neuralgia physical therapist for an evaluation that might be a good idea. There are some very good ones in Southern CA listed on the website at this link: http://pudendalhope.org/node/63#CA My neurologist had never heard of PNE either and she sent me to a psychiatrist. It was a physical therapist who finally figured out the diagnosis. There are also docs in Southern CA area who give nerve blocks -- I think Dr. Sheldon Jordan is a neurologist and he's been giving them for years.

People who are young have a better chance of recovering from PNE than older people so keep your courage up. If it turns out that's what you have, there can be life after PNE.

Violet M

[Bobby]

Thanks for the welcome. I am lately feeling hopeless... I am breaking down in tears everyday as my symptoms become worse throughout the last 3 days. I am most likely gonna lose my job... I have a car payment and credit card bills to pay and will soon probably not be able to pay them. I have a feeling that regular sexual intercourse was doing a lot to relieve my symptoms as It was most likely reducing pressure in the urethra. I have been taking Gabapentin and I am almost certain it is causing severe depression and I feel like zombie like. Also I don't even think its helping to reduce symptoms. I have been avoiding sitting down for the last 2 weeks and I was feeling okay. These symptoms became really bad when I woke up on Tuesday morning and I am trying to understand what is triggering it. I dont even know what to do anymore... I am feeling increasingly lonely and isolated. All I want to do is lay in bed and it is causing even more depression. I am going to ask my doctor today about getting off the Gabapentin. I am glad I found this forum and am appreciative of any support I am able to receive here.

Thank you

[helenlegs 11]

Hi Bobby, glad you have found hope will do a quick one as I saw you are on line just now.
For medication you can team gabapentin with an anti depressant, like cymbalta. This med also often has a good effect on nerve pain as well as the job it is designed for. Lets face it problems like ours will always get you down at some stage.
I know you will find an absolute ton of help and support from the home pages and from the people here.
Take care
Helen

[Bobby]

Excuse the double post but I ran through the list of physical therapis and one of them is about 10 minutes from where I live... Thats kinda a good feeling... Thank you

Also thanks Helen, I will ask my doctor about anti-depressants and I appreciate the kind words.

[Violet M]

Bobby, good luck if you try PT and please let us know how it goes for you. Chronic pain has a way of making you feel pretty depressed but it always helps if you have a plan in mind for what to do next.

[donstore]

Bobby,
It takes a while for the gabapentin to work. If the side effects and lack of pain relief are intolerable, tell your doctor about it and get him to prescribe Lyrica. It works right away and can often be a better choice. Make sure your doctor uses the right ICD-9 diagnosis code as insurance will only pay for FDA approved conditions such as fibromyalgia. You can look up the symptoms on the internet and tell him you have them if he needs to hear that in order to write the prescription. Valium works for some people. Be ready for the reality that a week on this site will make you more of an expert on this condition that than most doctors. Almost all of them have never heard of PN and have no idea how to fix it. Your best strategy is get them to make referrals to the PN experts who can diagnose and treat you. Sheldon Jordan is in Santa Monica. He can diagnose and treat PN. Get a cushion for when you have to sit. The IC Network cushion is inexpensive. The Togu Airgo cushion from UK Amazon is $125 but is worth it. Pain really sucks and wears you out. If you can cut into it with meds, your outlook will improve. Lyrica and oxycodone works for me but everyone has to see what works for them. You have to be your own doctor with this problem. We all know how you feel. Hang in there.

Don

[Bobby]

Thanks Don for all the info. I will continue to take the gabapentin and I was also prescribed some anti-depressants that I just started taking today. The pain has come down a little since Tuesday when the symptoms got really randomly. I also realize I have done things differently since my breakup, i started working out pretty hard with a buddy and after doing that for a little while I had some symptoms, that was about a month and a half after. I also started eating poorly and partying with alcohol and what not. What I believe to be a huge factor was I used to smoke cigarettes, I quit about 2 years ago, that was when my symptoms became quite dormant, also from the regular sexual intercourse. I think my return of symptoms was quite related with my lifestyle changes in the past three months since my breakup. I have since last weekend stopped drinking alcohol and smoking. I hope to return to minimal symptoms and hopefully be able to return to work sooner all the while getting my condition hopefully cured... Anyway I just wanted to describe the pain I'm feeling. Burning in my uretha.. Penis to be exact. Consant feeling of foreign object, closer to prostate and bladder. What I feel to be my pelvic floor mucsle always tensed up, I catch myself all the time flexing it... As if it's trying to make up for something... I am going to explain that to the physical therapist I am going to see... Unfortunately I am unable to afford out of network physicians so I will do my best with what I have. Anyway if these are anyone else's symptoms I wold love to hear from them.

[donstore]

Bobby,
Hope you find some relief with your meds. Pay attention to what makes you feel worse and avoid it. Lifting weights and stairmaster (anything that involves the core) often makes PN worse. Getting out of network means you have to get a doctor in your network to say you have to go out of network to get treatment because your problem can't be addressed by anyone in your network. They don't like to say this. You have to convince them and educate them about your problem to have a shot at succeeding with that approach. If a doctor is not sympathetic or helpful, switch to another doctor until you find one that will be on your side. A doctor's first duty is to advocate for their patient but this is not always the case. You have to know what you're talking about and be persistent. The symptoms you describe are quite typical of PN. Sitting making you feel worse is an almost universal symptom. Just remember- nobody cares about your problem as much as you do. This is not like most medical problems. You have to be your own best advocate. This really sucks but that's how it is. Good luck. Keep us posted.

Don