Health Organization for Pudendal Education

Can anyone explain this? I have tried ice packs on my nether regions to ease pain, but these don't work... Only a full nights rest OR getting into a cool swimming pool take the pain away. Any theories would be most appreciated!

Hi pizzarios and welcome
My theory would be that ice is too much for you in the sensitive area. Especially if your pelvic floor muscles are responsible (partly or fully) for the pudendal neuralgia. You obviously feel relaxed in the cool pool (even saying that sounds relaxing ) and while sleeping so it encourages any tight muscle spasms to relax too??
Of course in 'the Nantes critiria' PN patients are always 'better' by morning so you fall perfectly in line with that.
Another theory would be related to any SIJD problem, as you are relieving any pressure on the SI joint in the water and in bed. That one may be blown out of the water if you always ice while lying down however.

Now you will say that you have no SI problems and your pelvic floor is fine, but I can't resist a 'theory' question.
I also have a solution for you. . . . a water bed if only it was that easy! Do you have an actual diagnosis etc?
take care,
Helen

I would guess due to being non-weight-bearing. If you cannot sit or stand without pain but can lie down or float without pain, certainly I agree with Helen look at structure - pelvic muscles, pelvic joints, discs in the lower back. Something is pitting mechanical pressure on the nerve in normal weight bearing positions.

helenlegs 11 wrote:Another theory would be related to any SIJD problem, as you are relieving any pressure on the SI joint in the water and in bed.

That theory works for me, Helen!
However, I can't lie down without excruiating pain. I have to constantly shift my positions.

HerMajesty wrote:Something is pitting mechanical pressure on the nerve in normal weight bearing positions.

That's it exactly! The only time I'm pain free is while floating in my pool. Keep on floating, Pizzarios!!!

Actually with SIJD the most common symptom is pain is sustained positions....so Karyn, I'm like you I have to frequently change between lying and standing (of course sitting is pretty much out of the picture) and I can't lie on my back. My pain is better in a pool too, but only if I am swimming or standing still - not moving. Water Walking (as Dr. Dellon loves to "prescribe") is bad for pelvis instability - so if you have SIJD or hip impingement/labral tears, etc. I wouldn't suggest walking - just swimming.

Faith wrote:Actually with SIJD the most common symptom is pain is sustained positions....so Karyn, I'm like you I have to frequently change between lying and standing (of course sitting is pretty much out of the picture) and I can't lie on my back.

Yes, Faith! Quite frankly, I have NO position on dry land that isn't excruiatingly painful. I recently had an MRI (awaiting report) which was very revealing to me, even without the imaging details. I never lie flat on my back due to the SIJD and torqued sacrum. Four days later, I'm still suffering horribly from the 1.75 hours of compression in that area. I don't do much in the way of water walking. Mostly gentle swimming or floating and it feels so good to not have anything compressed.

Ice will not loosen muscles, but easy muscle activity in the pool will minus the pressure points. You get stretch that you don't get with most dry land activities, including a yoga exercise off the walls, which could go either way. I used to find flip turns painful. Alternatively if you were over Zone 2 endorphins could alter pain response. I'm not sure what any direct role sleep has in muscle tension. I find muscle tension much greater in the absence of full sleep, which is inseparable from good recovery from training. Hormones are altered by sleep, which I guess would affect inflammation. In any event it's good that it works.

This is an interesting discussion. Not sure if you have had any good info pizzarios, but I have
Yes Tri, I guess ice will only actually relieve inflammation on a newish or aggravated injury? Although it is also soothing for burning/intense tingling.

I just put the connection between SIJD and me together a little while ago as I love/have to lean and prop myself up on my kitchen work top for instance and some of the pelvic pain is instantly relieved. It must be pressure and of course the SI joints are significant load bearers in the pelvis (don't know why it has taken me so long to work this out (Doh!) As you say HM the spine is also a structural supporter so pressure relieved from any problems there would also bring relief.
Interesting point too faith, I have to change my position regularly, it would be great if sustained walking (constantly moving) worked but that will always equal more pain as I walk further and then later too when it usually catches up with me big time. Although I think that is a combo nerve, muscle SI thing.
Like you guys lying on my back is impossible. . . .I try SO hard to sleep like that (elegantly, like in the movies) as I want to wake up without a squashed face some day.
How do you work out zoned endorphins Tri? I have been so reluctant to go swimming as I used to be fairly good and just think I would get so frustrated 'taking it easy' but if I stuck a float between my legs, I could still get a bit of a workout. Think I am my own worst enemy in that regard.
Take care all,
Helen

Hello all and thanks so much for the input.

I have not yet been officially diagnosed. Nobody knows what's wrong with me. My vague IC diagnosis is bullshit (in my opinion). Primary care, Urologist & Physical Therapist can't tell me exactly what the problem is. I have only been to PT twice, so the jury is still out. She says she thinks there are a few different "things" going on with me. Piriformus (SP?) muscle seems to be an issue with me...I'm just starting this "journey" so bear with me, and thanks again for all the kind words and input. I will look into some of the things mentioned in this thread, and keep dipping into the pool as often as possible for some relief, as lidocaine + Gabapentin aren't doing jack for my stabbing burning pain. That being said, is there another underlying reason these meds wouldn't be working on me??

If it were up to me, and if we weren't poor/with crappy insurance, I'd have been on the plane to NY for the Potter MRI 2 months ago. I loathe to think I might have to blow hundreds of dollars on PT just for her to tell me that PT is not effective for whatever I have. The thought of the MRI + nerve blocks terrifies me. I was the specimen of athleticism and health before all this happened.

I think lidocaine and gabapentin are pretty much the first things they throw at you, I am not surprised they don't do the trick on their own. I found gabapentin to be helpful only at a high dose (2400 mg), which one has to "wean up" to over time or else you would be high as a kite. But even when you are acclimated there are still side effects, for me primarily poor short term memory. I worked with a good pain practitioner to create my own "cocktail" of meds; and just as many of the generally helpful ones, such as Cymbalta, were not for me (due to side effects), everybody has to individualize their own by trial and error. the only thing i strongly caution is stay off narcotics or tramadol (Ultram) which is the synthetic equivalent of a narcotic; because they work well at 1st but lose their effectiveness as you build tolerance and physical dependence. As to topicals, I have had better luck with (VERY DILUTED!!!!) capsacin, and a little success with menthol, than I have had with lidocaine. There is also a topical antidepressant that helped me, called zonalon cream, but I only used it briefly because it absorbed into my system and made me sleep all day...but apparently that is a rare reaction. that is RX but the others i mentioned are over the counter things you can experiment with.
If you were athletic prior to this illness it is possible you have an athletic-related injury to the pelvis or hip and might have more success with a sports PT than with a pelvic floor PT. Keep your PT time brief unless you are showing progress. I benefitted from PT greatly but it was very rapid - I was unable to function prior to starting PT and within four months I had "graduated" from PT functional albiet not cured. I could tell it was working within a few visits (and i did my "homework" excercises religiously). Whereas, you hear of people doing months and months of PT with no benefit and being told to stick with it. My advice is stick with it only if you start feeling a difference pretty quickly.