New PNer

[LiveStandingUp]

Hi. Apologies if I'm not posting this in the right place. More importantly, my sincerest thanks to those who developed and manage this site. After four months of chasing down prostatitis and colon concerns to no avail, a neurology consult this past Saturday was my first time hearing the term Pudendal Neuropathy. I hit this site and it has been overwhelming. Fear and hope at once. My story began four months after a bike ride left me feeling numb in my genitals for a few hours. It subsided but was replaced by a persistent feeling of pressure in the anus - like having to have a BM all the time. Waxed and waned for months while I took antibiotics for prostatitis. More recently, after a very long car ride, awoke in the middle of the night feeling as if my privates were "not there." This has persisted - predominantly at night - for several days, to the point where I'm afraid of bedtime.

Anyway, I'm trying really hard to stay positive and tell myself this isn't permanent? I have an MRI this Friday and an EMG(?) scheduled early next week. There is much I still don't know which is why I think I'm freaking out at the moment. I'm standing, or kneeling. Can't find a good cushion for sitting (afraid to sit regardless). I could probably cope with that long term, its the constant pressure "down there" and the nocturnal numbness that are really wrecking my head. Trying to feel blessed that my "pain" doesn't seem to be near what others report; and I feel kinda guilty even typing that, not sure why.

I will visit this site often as I go through the process of uncovering and hopefully treating this issue. Just so scared right now and its a relief to put that in writing in the hope that others "get it," becuase those I've shared it with to date can't really relate or understand.

Peace,

Matt

[Bobby]

Welcome Matt, I noticed you said you are kneeling and I wanted to warn you about that. I did that for a while and my symptoms got so bad and I'd realized it was cause I was tensing up my pelvic muscles and in doing so I was applying way to much pressure to all the tissue and nerves in the pelvic region, and if you have PN then you would be further compressing that nerve. In any case I would strongly urge you to relax the entire pelvic region the best you can... fight the urge to compulsively apply pressure and just drop the pelvic muscles, doing this should relieve pressure applied to the sensitive nerves in that area. Quick question, is your pelvic floor muscle constantly tense? This being the muscle you would use to stop urination and get the last few drops out.

[LiveStandingUp]

Thanks, Bobby, I appreciate that advice! I am really not sure if my pelvic floor is tight consistently or not - I think it is. I find myself kegeling a lot, almost compulsively, I think because I'm so afraid of the loss of sensation in my privates, it makes me feel like I still have sensation down there. I don't know how to "drop my pelvic floor" just yet, but I'm hoping to get a referral to a PT specialist sooner than later so I can figure it out! I have started taking hot baths in the evening with epsom salt to relax this muscle, but have done nothing further in this regard. It does feel a bit better after applying cream or vaseline to the anal region. In fact, after the rectal exam from the doctor, I actually felt relief for a few hours, which was puzzling as I thought I'd tense up more.

Any strategies for how to sleep? That's when I find myself waking myself up in the middle of the night to check-see if the sensation is there, and when it is not, I find myself getting up to walk around until I feel "it" again. It's positively unnerving....

Warmly,

Matt

[Bobby]

Dropping the pelvic floor is difficult at first but it becomes easier and easier until its just an involuntary habit, that's the goal anyway. Think of it like this, right now as your sitting, flex that muscle that you use to stop urination, now release it and try to keep in released and relaxed. Now it may compulsive try to tighten back up but it's just something you have to fight. It may throughout the day just compulsively tense up... and if you keep realizing that it is... it's probably causing your symptoms. That's what happen with me... I'm still learning to fight the compulsive, involuntary tensing but it certainly has become easier and easier and its only been about 1 month and I'm seeing a difference. Also keep in mind I just found out about this and have been unconsciously doing this for 5 years so you can only imagine the find of damage I;ve done to my pelvic area... but given the right "environment" your body will heal itself over time, when I say right environment I mean a relaxed and soft-tissued pelvis. While the pelvic floor is tense and tight it is only creating an inhospitable environment for all the muscles, tissue, and nerves and is where I believe the pain is coming from. Where do you live exactly? You need to find a PT who will do internal physical therapy.

As for sleeping... a muscle relaxant possibly... soma... maybe even an anti-anxiety pill of sorts, lorazropan, xanax... Honestly it's been so long for me I have learned to sleep through it without any help.

[LiveStandingUp]

I live in the Metro NY area. thanks for the tips, Bobby! I will try them! Do I ask my Neurologist for a PT referral or my primary care doc (sorry to be so dense).

[Celeste]

I live in the Metro NY area. thanks for the tips, Bobby! I will try them! Do I ask my Neurologist for a PT referral or my primary care doc (sorry to be so dense).

You want to see Amy Stein, then. I don't know if she needs a referral so you might call her office and see what they require so you'll have your path forward.

[LiveStandingUp]

Thank you, Celeste; I will call her tomorrow! god bless....

[Quilter 2]

Hi Matt;
Welcome. Bobby is right about the kneeling thing. I thought I was helping myself by doing that because the pain seemed to be less, but in the end I was making myself worse.
Dr. Potter in NYC would be the best radiologist to see for PN. She developed a program and has trained her staff to look for the pudendal nerves.
Maybe you could ask your doctor for a Valium Suppository script to be used in the anus. This is a compounded medicine but I'm sure in NYC it would be easy to have filled. It has helped me before and after surgery.
To relax your pelvic floor, gently push down. A PT can help you with that and with breathing. Finding a PT that knows about PN is the hard part. They are far and few between. Possibly Dr. Potters office could offer some suggestions. It really makes a difference. I know because I had 2 before I got one, suggested by Dr. Conway in NH, that knew even a little about our condition.
I hope this helps you out a little.
My best;
Doreen

[LiveStandingUp]

Thanks, Doreen. It's worst at night -- that's when I lose sensation in the genitals. I can't stay asleep or get comfortable right now and I'm sure the anxiety is playing a big part, too. What's also frustrating is how long its taking to get the additional tests like "Sayer(?)" and EMG (not until the 30th). I can't imagine going three more weeks without sleeping. I have reached out to a practice in Bergen, NJ with a PTA named on this site and hope to get a visit there very soon. Thanks for reaching out - your input is so helpful! -Matt

[Quilter 2]

Matt;
The waiting is bad. Also explaining over and over again to people that don't have a clue what you're talking about. It took me 4 months and 18 Drs. to find Dr. Conway. As most of us PN'rs know, I had to diagnose myself. After waiting 3 months for an appt. to get the RIGHT EMG testing, (I already had one from a neurologist that showed NO PN entrapment), I was finally starting to move forward. Waiting a year and a half for the surgery was my decision, not the docs.

Sleeping? What in hell is that? I take 15 mgs. Temazapam nightly and it finally works about 1 or 2 AM. That wouldn't be bad, except I'm still use to getting up at 5-6 AM. Maybe you can get your PA to give you something. I've tried them all, and only Temazapam works. I think some of my problem is that I'm laying around not getting the amt. of exercise or fresh air to make me tired. Another thing I use for pain is ice. I'm constantly wearing ice in my undies. I wrap an ice pack in paper towels so that I don't get freezer burned and it numbs the burning.

Hope this helps a bit. It sure is worth a try. If you're exhausted or over medicated, you just can't think clearly. It's very easy to get over medicated because you're just so damn tired of hurting, and damn tired.

Best wishes;
Doreen