Health Organization for Pudendal Education

I just had a 3 Tesla MRI last Wednesday, and will be going to Johns Hopkins to see about a spinal implant in about 6 weeks.

I switched off Oxycontin to Oxymorphone Hydrochloride ER (still taking Oxycodone as rescue meds).

Merry Christmas.

I'm sure it is hard to feel merry with all of that going on. Hope the spinal implant works for you.

Violet

Well, after TWO MONTHS of bureaucratic runaround from the Johns Hopkins Blaustein Pain Treatment Center, my girlfriend called today, and yet again, they said "they'd get back to us in a week." This is about the fourth time they said this - she refused that as an answer, and insisted on a response. After being on hold, I was DENIED an appointment because 1) they think I'm drug seeking (which I'm not), and because 2) I already have a spinal stimulator (which I don't)!

I've dealt with Johns Hopkins in the past (my late wife was an ovarian cancer patient there) and they are complete, bureaucratic BULLSHIT. I am *exactly* the person who needs their help the most, and am willing to take an enormous amount of medical risk; yet, they have denied me entry.

Once again, I am left with no options. To top things off, about two weeks ago, I fell - HARD - right onto my left kneecap, and probably broke it. That was the last thing I needed, especially since my pain medication is on the verge of running out before my next appointment (Feb 4, 2017) with my pain doctor, who refuses to increase my dose of opioids. I have NEVER abused opioids, but I'm damned well considering it, because there appears to be no other option. My girlfriend is on the phone with my insurance company as I'm typing this, asking for advice on what to do.

My situation has become absolutely desperate. Don't worry, if I do something that brings harm to myself, I'm not going to be a drama queen and write about it here; I'll just quietly go. The ironic thing is that, even if I wanted to OD on narcotics, I couldn't do it right now because I don't even have enough to do the job. I had *the best life* for nearly 40 years; now, between the death of my wife (at age 32), and my chronic pain which has turned absolutely savage, the past 8 years has been Hell-on-earth.

Thanks for listening - the real point of this post was to expose Hopkins for the hacks that they are. They only care about themselves; they don't care about helping people who really need it.

That's unfortunate that they are denying you care. I wonder if it would do any good to write a letter explaining your situation and that your appointment was canceled due to an incorrect assumption that you have a spinal stimulator when you actually don't.

It's OK to vent here and get some of your frustration out. Many of us have had similar experiences so we know where you are coming from, but if you do write a letter make sure it is extremely respectful because it will go much farther that way. I know it's annoying but you have to play the game. And you can't make any threats of suicide because as health care professionals they cannot provide certain drugs to someone who has suicide ideas because that would make them liable. Unfortunately, providers have to guard themselves against malpractice and they have to follow the recommended protocol. So while they may seem uncaring, they are pulled in two directions -- that of wanting to help the patient vs. what their protocol allows.

If you are suicidal please seek professional help from someone trained to help you deal with those thoughts. If you are just venting and need a listening ear, we understand. I hope you will stop and think about the possibility of a good life if you get the right treatments and hang in there to keep fighting for it.

Violet

I had difficulty dealing with the JH pain center years ago as well. I have had better luck working with a local doctor than going to a big university. I understand the pain you are facing and hope you have success in lowering it soon.

Stephanies

Hello folks,

I just wanted go let you know that I've now had my 3rd procedure that may be helping me. I doubt at this point my problem is pudendal in nature, but I haven't ruled it out either. My primary complaint is, was, and has always been "groin pain."

I have now had 3 courses of "PRF DGS 42 degrees" (Google that precise term.) It doesn't deal with pudendal issues, but groin issues (yes, I know the pudendal nerve is part of the groin).

Followup in 3 weeks. Does spinal cord stimulation work for pudendal pain? That would be my penultimate resort, and I'd rather not do it.

Here's something for you to read - I don't know if it could help you, but it's probably my next stop: https://www.sjm.com/en/professionals/fe ... dd6899eb3a

Thank you to everyone, and if I find out some more pudendal-related information, I'll keep checking in.

BTW - If anyone here has questions or comments for me, I'm GLAD to help. I check in every few weeks to see how people are doing. Also, I'm not sure this should be in the "Welcome" forum, so moderators, please feel free to move it where you think it best resides - I'll find it. I just referred a friend of mine here who had his urethra removed yesterday (they found some cancer that had spread, but hadn't broken through) - he, too, has pudendal pain, and I urged him to sign up here.

Kind regards,
FC

Hi FC,

I googled that precise term and didn't come up with anything that seemed related to treating groin pain. Maybe you could provide a specific link for people who are interested.

Glad you have found something that seems to be helping.

Violet

I’m back. Dr. Hibner helped me.

My pudendal nerve was “severely entrapped” between my sacrotuberous and sacrospinous ligaments, and was “severely scarred.”

Hi FC,

It's good to hear from you again, and even better to hear that you are doing better! How long ago did you have your surgery from Dr. Hibner?

Violet

Hi Violet, and thanks for your (re-)welcome. I had my surgery with Dr. Hibner in Sep, 2022. I’m happy to answer anyone’s questions, as I feel an almost urgent sense of obligation to people suffering from this horrible condition. I also feel like climbing onto the tops of skyscrapers, and throwing lightning bolts down upon the entire medical community, Zeus-style.

If you give me enough time, I’ll also write a more detailed report, but I’ve always been better at answering questions than writing essays.