Health Organization for Pudendal Education

Hello, it's 4:30 AM and all is not well.

I've suffered since 2008; have been on full disability since 2008 due to a botched hip arthroscopy (after which the surgeon said he may have injured my pudendal nerve, and that it would go away).

Before that, there was a slow, insidious, right-sided onset since the late 1990s; the left side began its symptoms about five years ago and is now equal to the right side.

I've had about 8 major surgeries, about 25 medical procedures total, have seen probably over 50-100 doctors, am on very high doses of oxycontin/oxycodone (which no longer are working), and am all alone. I am as desperate as desperate can be, and even spent 25 minutes on the phone last night with a suicide hotline, trying to get the very kind girl to explain to me why I suicide *isn't* the logical way out. I've tried everything - and I mean everything - else, and have probably cost my insurance over $1 million in medical fees.

I am all alone (widowed), MALE, and without hope. I have a loving girlfriend who wants to move in with me, but right now she's on the other side of the country, and I'm not going to make it through December. I AM NOT SUICIDAL; I just want escape from the pain. I just now woke up and took almost an entire day's dose of oxycontin. Needless to say, I'm probably going to run out of medication this month and will have to call my pain doctor in an emergency situation.

I found this forum years ago, thinking this is what I had, but then received all kinds of misdiagnoses from hacks such as Lee Dellon, etc. I've been gutted like a fish, and nothing has helped with my pain. In 2009, a total hip replacement got infected and had to be "washed out" twice - that's three major hip surgeries in less than one month.

No doctor is listening to me. I need to be admitted as an inpatient. This group is my final hope, and I'll do whatever people advise me to do - I have nothing left in my life, and I'm confined to bed 24 hours a day. Surprisingly, when I'm traveling with my girlfriend, things aren't quite as bad - I can't explain why, because all I do then is lie around all day as well.

I've had so many major procedures that I can't even begin to list them; yet the pain is still there. I'm not entirely certain it's pudendal neuralgia, but there is a great deal of discomfort in my peroneum; I used to think it was my top-inner thighs (the "V" between the male scrotum and the top thigh), but now I think it's more posterior than that. At one time, I had severe pain in my testicle, but a genitofemoral neurectomy helped with that, so there are other nerves at play here too.

This could have been due to a horseback riding stretching incident that took place in the 1980s.

Or, it could be related to osteophytes I had removed from C6-C7 in 1997 - I had 100% loss of strength in my right tricep, and two surgeries fixed that problem; since then, I've been through years of misdiagnosis, and am on my last leg. I am desperate, and would *gladly* go somewhere inpatient, but I don't know what to do.

Thank you for reading. It's 4:30, I'm all alone, and I have tears in my eyes. I'm in the Washington, DC area.

Sorry to hear of your troubles mate. This injury really is the worst. As a male with similar issues, I can empathise with your current situation & how it can affect our mental state. I can offer nothing other than a friendly ear & my well wishes to you. I hope your situation improves in the near future. Good luck sir.

FinalCountDown,

1. You mention your many medical procedures and possibly having multiple nerves involved in your pain. Can you go to John's Hopkins and try some blocks to isolate the specific pain generators? Sometimes this can be helpful, as it sounds like it was with your genitofemoral nerve.
2. If your pain levels decrease when you are distracted, you may want to consider if part of lowering your pain may be decreasing stress and thoughts that dwell on pain and seeing if that helps you overall. There are many resources for this on our forum as well as on the internet as a whole.

I am sorry to read how much you have suffered and for how long. I hope that you are able to find some relief.

Stephanies

FCD,

It sounds to me like you still have some options left to try so it would not make sense to end things now, especially when you have a loving girlfriend and you might be able to enjoy life again.

You listed many surgeries. Have you done any rehab type things like the proper kind of PT, manual therapy, or something like water therapy? I did a lot of rehab type things after surgery and I think they really helped in my recovery. I also tried to rely on natural therapies like alternating hot/cold sitz baths rather than too many opioids because I did not want to develop a tolerance to them. They are not a long-term solution and eventually may not work well. You can reach a state of withdrawal and increased pain from long-term use of opioids. You can read Cora's posts on this forum to learn more on that topic. Other possible options to try would be electroshock wave therapy or mindbody therapy. You can read konedog4's posts on this forum or Ezer's posts to learn about these options.

What about neuromodulation or intrathecal pain pump? Those are other possible options that some people on this forum have had good success with. Have you had a pudendal nerve block to confirm a diagnosis of PN yet?

Violet

Hang in there. You know suicide is not the answer. I have had this problem since the 90s. Nothing has worked for me.
If only I had a girlfriend like yourself. I have not had one for many years.

Ray

Ray, I think you were on the PN forums before me. I admire your tenacity and that you still stay around to help other people.

Violet

Countdown how are you doing?

I want to thank everyone here for their concern and kind words. It may not seem like much - just typing out a couple sentences - but it means a LOT, and if I had the energy, I'd reply individually to each one of you.

I saw my pain doctor yesterday, and he got me off of Oxycontin, and onto Opana (which I used a few years ago). I just took 40mg about two hours ago, and it seems like it's doing nothing.

I called the spinal implant center at Johns Hopkins, and they have about a six-week wait - my pain doctors forwarded them a referral today, so I'm going to call on Monday and try to get an appointment. What I have right now is what I've been living with for years, except it's either getting worse, or I've just developed a tolerance to opioids, and they no longer work effectively.

One thing's for sure: I cannot keep living like this. There's no way. I've got to try a spinal implant. Next week, I have my first 3 Tesla MRI - I've had a gazillion MRI's of the lumbar spine and pelvis before, and all they've seen are some osteophytes in my pelvis. Hopefully the 3 Tesla machine will see something that hasn't been detected yet.

Interestingly, I had a colonoscopy two days ago (suicidal people tend not to get colonoscopies) which was normal, and my doctor felt nothing abnormal with my prostate.

So I'm still here, and I REALLY appreciate your replies - they touched me deeply - but I've got to get some help, and I need it yesterday. I'm suffering every minute of every day.

Thanks for hanging in there! Make sure you do the research on spinal implant.

Ray

FC,

If you think you might have developed a tolerance to opioids you might want to try switching to suboxone. It has some naloxone in it so you are less likely to develop a tolerance to it. I know one person who had developed a tolerance to opioids and was actually experiencing withdrawal symptoms. She was switched over to suboxone and she is doing very well with it. Many doctors don't understand how to prescribe it though, so the trick is finding a doctor who is willing to prescribe it for you.

Violet