Health Organization for Pudendal Education

I can sit better than laying down on my back at night. Seems the tailbone and lower back feel like it's irritating my bladder to the point I have to pee every one to two hours. Little sleep is ever had.
Anyone have worsening PN while laying on their backs? So weird. If I sit on a hard chair I am better off or standing. Bedtime is a nightmare.
Toilet sitting is a nightmare too. Hurts the back of my leg near the hammy and sit home. Ugh. Soooo tired of suffering.
Thanks to anyone who can help me.

One of my symptoms was worse when lying down but mostly sitting was the worst for pain. Maybe you have a different nerve rather than the pudendal nerve that's the problem. What do your doctor's say as far as a diagnosis?

Violet

Dakotagirl,
I need to keep my knees bent or it hurts to lie on my back. So I usually lie on a side again with knees bent to sleep and switch sides. On the sofa I lie on my back but again with bent knees as most comfortable.
Janeet

Hi Violet,
Yes I am back with no more answers than when I started.
I have the hip pathology and back pathology, so my pain dr doesn't know what is causing the pain into the urethral area. No one does so far.
He did mention genitfemoral nerve because of the pain pattern/radiculopathy but I haven't been able to find another doctor who is willing to sort it out. The pain managemet guy is really more of a spine guy.
I have an appt with a new uro-gyn but have little hope left.
And I do have to sleep on my back due to neck problems but I always keep pillows under me and have an adjustable bed. Drs keep handing me pills like Uribel to stop the bladder frequency when I keep reiterating that there is nerve pain causing it. Sitting makes my pelvis cramp up pretty badly, possibly due to the hip.
thanks for responding.

DG I think we have spoken in the past. Sorry to see you are still trying to figure this out. What urogynecologist are you seeing? Also did you ever see a pelvic floor PT? I've pretty much just stopped seeing anybody for this except Dr Stuarts office in Burlngton. They are not experts but they get how incredibly painful this disease is.

Patty

I just replied to the previous post. We did speak and I am back in wicked pain again. I had a small reprieve last year. I did do pt at Marathon pt in Norton.
I am off to the bidc but am seeing the pa, since Janet Li only sees surgical patients if the pa deems necessary.
Will post results. Thanks.

DakotaGirl,

Just wanted to comment that the pudendal nerve innervates the bladder sphincter where it meets up with the urethra. So it's possible the PN is a the problem when it comes to urethral pain but I can't say for sure if that's the cause for you. For me, before PNE surgery, I had to get up many times a night to the bathroom.

When my PNE was bad, I had to bend my knees when lying on my back because otherwise the nerve was irritated. Or I could lie on my side with a pillow between my knees.

Violet

Violet
You could be so right. The uro-gyn examined me yesterday and found the obturator internus to have three thickened bands of tissue, which correlates with my hip pathology and also found the levator to be short, tight and tender.
This is pretty much what I had found two years ago and after going to pt for a couple of months and doing some mild stretching, I had some reprieve from the pain in 2015.
Then in nov, 2016it came back with - vengeance and the urethra and bladder were non stop for me. So I had to seek out a second opinion in Boston just so I know what I am dealing with, either IC or PFD and I assume it's a little of both.
She prescribed vaginal Valium suppositories with lidocaine for flare and also wrote a script to go back to pt.
because I have severe dengerative arthritis in the lumbar spine with other pathology there, when I lay on my back to sleep it naturally worsens that pain which in turn tightens everything else. I am unable to turn to either side due to facial and neck issues, so I unfortunately am stuck on my back all night like a turtle. I have an Adjustable bed which helps alleviate some of the pressure points throughout the night but it's not like standing up and getting off the pain.
Conway said I had PN from his emg, but only could tell me to get nerve blocks and to have my hip repaired wh in is not an option at my age.
Thanks for your support and guidance Violet. You sure have been through a lot. DG

DG, wow, it sounds like it must be really hard for you to sleep. Sleep is so important when you have chronic pain because it allows you a break from the pain for a little while. Hopefully the valium and PT will help relax the pelvic floor and ease some of your symptoms. I'm assuming you've had an MRI to rule out impingement on the sacral nerve roots as a possible cause of your symptoms.

I had pain mostly on one side and I used to lie on the couch with the leg on the bad side resting up on the back of the couch. For some reason that seemed to ease the symptoms. I had a very tight obturator internus which I'm sure contributed to the symptoms.

Violet

Yes, MRI shows central bulging at L3-4, L4-5 S1, facet hypertrophy, stenosis without impingement and 2 8 mm perineural root sleeve cysts on S2.

Was going to get some lumbo-sacral facet injections in a few weeks to see if that helps with the back pain, but I really don't want to. They hurt a lot....

Touched the urethra today just to put a little dab of Estrace cream on and I have to pee every half hour. Touching it also sends pain into the sacrum and has been like this for a while, only worsening .....

Was your obturator a pain generator or just an incidental thing? I have FAI on that side. No one can give me any real clarity. Conway was very nice, but all he recommended was 3 pn injections which i never did.