Health Organization for Pudendal Education

Many of you have more medical knowledge than I so here is yet another question.

After 32 years of PNE surgery fixed it along with left obturator entrapment, internal varicose veins and removal of some tissue with permanent nerve damage.
The incisions are all doing wonderfully and my mobility is better every week. My vaginal tissue is doing amazingly well and PT is doing wonders for me.

Here is my stumbling block:

My pelvic floor is too tight and I'm trying to figure out what to do with it.
My PT starts internally next week and I have to physically hold my pelvic floor open to have a BM with a finger inside of me.
I struggle to urinate as well since the muscles are so tight.
I use a TENS machine at home and have started using it for an hour 3 times a day.
I've read hear that Valium is used rectally and am wondering is that to help calm the pelvic floor down?
Should I ask my doc for Muscle Relaxers? (I sorta think those cause constipation and I don't want to add the the problem)

I assure you I am not constipated. The pelvic floor just refuses to relax and I'm not sure if this happened to any of you.

Do any of you have ideas or tips for me?

I appreciate any information you may have.

Kathy

Kathy, one thing that used to help me a lot was alternating sitting in very warm and very cold water several times a day. Over time as you heal from surgery hopefully the pelvic floor will calm down and start to relax but until that happens you may want to use some muscle relaxers either rectally or vaginally to calm things down -- like the B&O (or just plain belladonna), or valium suppositories.

Some people have had good success with Botox injections into the pelvic floor post-op but it's hard to find docs who know how to do them and you might have to travel. They typically last for several months.

I am not sure how to access it, but I have heard of biofeedback used as a modality to help people learn to voluntarily relax the pelvic floor. I think some pelvis floor PT's use it, but otherwise I am not sure how to search out that kind of care - at least asking your PT about it might set you on the right path for that.
I use valium and have also tried soma, which is a more powerful muscle relaxer, but the soma did NOT work as well as the valium for PN symptoms: Valium is used by a lot of PN patients and the difference seems to be that it has some direct effect on the nervous system, not just a muscle relaxation effect. Valium has been my "wonder drug" and so I highly recommend that others at least give it a try. My other meds take the edge off only, but valium makes a substantial differnece for me. I have tried rectal valium and I find it no different than oral valium except that it is more difficult to get the RX and more expensive. The idea is that some people are able to use rectal or vaginal valium and get a local effect only, but for me it absorbs right to my head just like the oral stuff. So instead I prevent side effects by breaking up my dose into small amounts 4 times daily - I am supposed to take 5mg twice a day but take 2.5mg 4 times per day instead.

I had similar issues post surgery. At first, all the nerves almost didn't let me have bowel movements... then it was slow recovery. I think because in the TIR surgery, the rectum is moved to the side, perhaps that's why it has issues after in recovery.

I had to use Stool Softeners, Laxatives, and Enemas.... sometimes things were stuck and I had to use a gloved hand to help things out... that was a low I never imagined stooping too.

I'd recommend upping all those extra helpers like mentioned above... as you give it time to heal. After a few months, that really slow bowel will get more normal... you might still need some additional help with meds, but not as much at all.

True though that bowel movements are easier w/a relaxed pelvic floor. Perhaps time to start using Dilators once daily... you just insert them starting with the smallest and moving up to the largest... and you just leave each one in for 1-5 minutes till you are ready for the next bigger size. Not much else required and your pelvic floor will start to relax from the dilator just being in there.

Thank you!

I feel like I'm the only one here sometimes and it gets so lonely.

I feel so much better knowing you have been where I am and I ordered 10 mg of Valium ( I was on 2 mg).
My dilators are on order and will be here next week.
Biofeedback starts next week as well ( I had to wait for the infection to heal to do those two things).
Water PT will be starting soon as well ( that was also held off due to the infection).

It seems I am doing all I can for myself so I just have to try to relax and take it one day at a time.

Thank you for reminding me that this is a slow process and I can't force myself better.

Loves

Kathy

One of my initial diagnoses was pelvic floor dysfunction and I had biofeedback done by a physical therapist. This was designed to help the pelvic floor relax to have a bowel movement more easily. The way it is done is to have a dual channel biofeedback monitor which means that you have one electrode placed on your abdomen and the other one fits inside the rectum.This one is shaped like a mushroom so that you cannot actually push it out. You are in a sitting position in a chair watching a monitor screen. When you mimick pushing to go, the abdomen should rise which will show as a hill on the screen, while the rectum should go down. If your rectal line goes up, which mine did slightly, then you have to practice, until the rectal muscle relaxes and goes down.
This may be easier said than done and may take several sessions to learn, but I think the PT you are seeing will know about it,
or could learn easily. You can find biofeedback therapists who are certified on the Biofeedback Certification Institute website, and you are looking for one who does pelvic muscle dysfunction biofeedback (PMDB). Of course you do not need to be certified to teach this to a patient, it is very easy to teach.

Hope this will be some help.

Thank you.
Yes, biofeedback is what my PT will start next week.
Thank you for explaining it to me.
Now I have an idea of what to expect and what to practice.
Thanks for the tips.

I'm trying to get my body to do something it has done incorrectly my entire life and it is very hard to learn what muscles should feel like when they are working correctly.
I'm starting to realize that I hold my pelvic floor in and up. I thought that is what gave me good posture. Now that I know my pelvic joints were all off I don't even know how to stand up correctly.
This experience is so weird and painful and I just wish I could be normal for one hour so my boyfriend and I could just relax and take a breath.
I'm running out of fight. My stamina for this is fading and I need to regroup and I don't know how to do that.

Thanks again for the support

Kathy

Hi Pianogal and Kat,
It is quite interesting to know that both of you had pelvic issues and especially with bowel movements.I had no issues regarding the pelvic floor and bowel movements after my surgery with Dr. Bautrant.Is it because the male Pelvic floor is stronger than the female Pelvic floor or is because your SacroSpinous ligaments were sliced which created Pelvic instability?

Best Regards,
Ali

My pelvic floor issues along with sexual dysfunction (painful orgasms) started in my teens so I think it was caused by having PNE for so long.

How long did you have PNE? You are lucky it didn't spread into pelvic floor issues.
You are a lucky guy.

Loves

Hi Kat,
I believe that my PNE symtoms started about six years ago.I doubt that I am lucky in any sense.The word "lucky" doesn't exist in my dictionary anymore since this disease stuck me.
Although,I can assure anybody that I am not ready to give it up as yet.


Take care,
Ali