Health Organization for Pudendal Education

Hi everyone,

justed wanted to say hello.

I have been having pain in the pelvic/hip/vaginal region for 10 years now, have been fitted with inlays for shoes, three rounds of physical therapy (with lots of Kegel exercises:), vaginal ultrasounds, rectal examinations and my problem was that this odd pain INBETWEEN all bones, muscles and organs just never made any sense to any one.

Today I chanced on this page and forum and now it all falls into place.

My not being able to sit (my job involves hours of sitting down), my odd literal 'pain the in the butt' (which I never mention to physiotherapist, because what would they do about my rectum), those sudden FLASHES of pain, as if someone had hit me with a bullet in the nether regions, the fact that walking is much, much better, though cycling isn't, it all makes sense now.

Haven't made plans for dealing with this yet, will print out the images and go see a doctor, and stop those Kegel exercises.

Btw, my only source of relief are very hot full baths, can anybody relate to this?

I probably shouldn't because I had a thrombosis at 31 and am leaning to the varicose side, but it's really all that helps, if temporarily.

Take care,

Szuse

Also, has anybody here had rectal therapy?

My last physiotherapists DID mention it to get to what he assumed where trigger points in the pelvis (so he was close), but I decided that this was no option for me.

Now I've read that this is one of the available options... I sounds terrible though. Does one prepare for this with an enema?

Just the thought is... intimidating.

Thanks

Szuse

Szuse,
Welcome to the forum. Yes the warm baths helped me especially with my levitor Ani muscle spasms. Also my predominant pain is anal and the rectal therapy gives me the most relief. Of course it would be good to be cleared out I don't do enemas to prepare, although that was required when I went to the colon rectal surgeon for electro Galvanic stimulus treatments to stop the spasms. I have oxycodone and take that an hour before the rectal therapy. It can be tough but like I said it is worth it for me for the relief. Good luck.
Janet

Hey Szuse!

I can relate to this 100% !

I got my diagnosis now for nearly one year - medics and just relaxing over this year helped in long term.
But if i took a hot bath (i make it very hot, just lay with my bottom and little bit of the back in it and let my legs hang out), it helped me instant.
After these hot baths it is like 50% better... So i realized heat helps a lot there and bought a heat pillow which i often put between my legs - that helps too a lot!

So i just realized 1,2 month ago that my pudendal pain could come from fascia or muscle tissue that is sticky.. that would explain why heat helps that much!

Maybe you should try Physical therapy, maybe its the key to recover! I'll try it soon.

If you need anything, just pm me - saw somewhere you recommend AKH WIEN, If you are german you can write me in german if you want!

Greets

(I haven't figured out yet how to respond to individual posts, so I'll add an address to make clear who I am responding to).


Hi janetm2,
thank you for the hints regarding medication before rectal therapy! how hard was it to find someone to do it? how did he or she know what to do?

As mentioned, my physio said it would be an option, but I, well, feel a bit awkward about approaching him again and I think I would definitely want to use pain killers with it, which would require previsou consultation with a doctor. How often do you go there or did you go there? Only when the pain was really really bad or regularly?

Thank you!



Hi PleaseHelp,

guess what I am doing right now: Lying down with a hot water buttle under my bum:) Like you, I also try to make it as hot as possible.

I hadn't thought of letting my legs hang out, but this would probably be a good idea because hot baths are so exhausting.

Do you have any particular recommendations for what do to/have don in physiotheraoy? Phyisotherapy kind of helped, but after 1,5 weeks it's usually as bad as before.

Thanks for offering! If I get stuck with English, It'll be good to write to you in German,

Thanks everyone,

Szuse

Hi. Szuse,
I got lucky and a pain doctor I was seeing sent me to the PT. There is a list of PN-aware PTs off the homepage and I think pelvic floor PTs would handle it. They are trained specifically for the issues so an orthopedic PT would not normally know how to perform the treatments, unless they got the specific training.
I can't remember but I would think rectal therapy would not be more than once a week but when I had PT twice a week they would do other treatments to loosen other areas around (like inside thighs) to keep from aggravating the nerve.
Honestly I would go to PT weekly for the rest of my life but insurance won't cover what they think is maintenance unless you have bladder/incontinence issues. I have been a fairly regular customer due to falls that have knocked me out of pelvic alignment causing a vaginal, rectal and back pain. These are considered accidents that are "recoverable" and once PT feels I am getting better they have to release me.
Right now I am recovering from a fall from September but also cleaning out my house for sale and causing all kinds of pain.
I hope you find a good PT, mine is fantastic and I did learn that she could only do the rectal therapy at the edge, if she went in deeper it would cause a flare.
Janet

Thank you, Janetm2, this is very helpful. My last physio did do amazing things to my spine (such as that when I know bend forward, I don't end up semiparalyzed, having to make my way back up veeery slowly, simply because I couldn't move), but am not convinced he knows what to do with the rest.

I also have pain in my inner thigh, both upper thigh and inner thigh, but seemed to not conside this grave.

I'll watch out for pelvic floor PTs (also, i'd really like a female PT for this).

Here in Austria, you get batches of 10 rounds of physio on prescription, so after 10, you'll first have to consult a doctor again (not sure how quick you'll get the next one).

Take care,
szuse

I used to sit in warm baths also. Sometimes it was the only thing that helped keep me from going insane. The inner thigh pain could be due to the obturator internus muscle being in spasm -- at least it was for me.

Violet

Were you able to do anything about the spasm of this muscle? PT, particular exercises, medication?

A few months after my PNE surgery I used a TENS unit for 2 hours a day and eventually it calmed down. I also took alternating hot/cold sitz baths 4 times a day. The pudendal nerve goes between the obturator internus muscle and the levator ani muscles so if the nerve is irritated it can cause those muscles to be in spasm -- or the other way around. Opioids helped too but I don't see that as a long-term solution.

Violet