Health Organization for Pudendal Education

I'm starting to think I need the surgery. I can't sit for longer than 2 minutes without pain. My symptom now is rectal pain, and it gets to be a 6/10 at times. Physical therapy isn't helping. I have a few days in which I feel good and then the bad days, like today, hit me. I can't live the rest of my life this way.

How does one make the decision to set a surgery date? I've seen Hibner who told me to try PT for a while, I talked to Conway on the phone but it was a bad time in the day for me and I didn't get to ask much.

thanks,
cari

Dear Cari,

I'm sorry to hear about your rectal pain. While waiting for surgery, please try some of these "self-help" remedies which have helped alot with my rectal pain:

1. Sitz baths(warm water plus epsom salts) three times daily. Relaxes the perineum completely. Usually when the pain peaks (i.e. 7/8) is when I head for the bathroom instead of reach for a pill. A hot bath (again with epsom salt) has the added benefit of soothing aching legs and feet, too. You can buy a plastic sitz bath at the pharmacy. After lifting both toilet lids and filling the sitz bath with salt water, you place it on the toilet bowl and then sit and enjoy. Ahhhhhhh . . .

2. After the bath, dry gently with a facecloth and then apply some soothing ointment. Until recently I was using a lidocaine/gabapentin ointment but it was no longer effective (and I also read that using it longterm can irritate the rectum). So now I apply a soothing natural oil for healing skin irritations, cuts and scars, which I got from the local health store. Mine has aloe vera, vit. E oil and teatree oil in it. Your health food person can help you find something similar.

3. If the rectum is itching, apply baby rash ointment with zinc oxide in it. In Canada, it's known as either Penaten or Zincofax.

4. I have also been using a prescription ointment designed for anal fissures which contains nitroglycerin .2% three times a day. It is designed to relax the sphincter and promote blood circulation and healing. You apply a pea-size dollop internally with the tip of a gloved finger, then wipe the excess off the rectum since too much of the stuff can cause a bad headache.

5. Burning rectum pain always makes me slow down immediately and put my feet up since it tells me that the nerve is super irritated.

You will see that contrary to our traditional practice of applying ice to the rectum, sometimes applying warmth helps to relax the area and decrease the pain. These days warmth seems to work much better for me than ice.

I got these tips from a website on ano-rectal pain relating to hemorroids and anal fissures, but they seem to work for me!

Cari.
You have to tell Dr. Hibner that PT is having zero effect and that you want to schedule surgery. Like Karyn said, you just know when you're entrapped and all the PT in the world won't make any difference. I can't recall any people with pain like yours who were cured by PT. The sooner you get on the list the better. Somebody could always cancel. Dr. Hibner is quite conservative and likes to try other things first. I wish some of the people who had been cured by botox or PT would post but we never seem to hear from them. You have Dr. Potter's MRI and you know what you know. As you know, Karyn is the one to reach out for concerning questions and help with Dr. Conway. He would likely be faster than Dr. Hibner but Faith got scheduled for January so who knows ? Hang in there.

All My Best,

Don

Hi Cari,

carolynm wrote:How does one make the decision to set a surgery date?

Well, I think you answered your own question:

carolynm wrote: I can't live the rest of my life this way.

The title of your post really touched me. Your words I can't live the rest of my life this way are monumental in importance. Don is correct by saying that if you have true entrapment, all the "conservative treatments" in the world arent' going to be effective. As a matter of fact, it's a reason WHY they aren't effective. KInda devastating to come to this realization, huh? It was for me, anyhow. But after settling with that for a few days, I began to feel calmer and even a little excited. I began to view surgery as a real chance to not be like this for the rest of my life, where everything else I tried failed and I was continuing to decline. I honestly believed that with each injection, each torturous PT session, each acupuncture treatment, each chiropractor adjustment, each med trial ... that I would be cured. It was very difficult for me to admit to myself that I had to stop doing what wasn't working and getting to that point is very personsal.
You know best how you feel, Cari. Your symptoms certainly corrolate with PNE and you also have an MRI affirmation. Does this feel right to you?
It is my hope for you that you're able to get to that point where you feel comfortable with giving yourself a real chance. You don't have to live like this for the rest of your life.
Hugs,
Karyn

So do you think PT might help because your cause of PN was/is SIJD? Just wondering. I think SIJD can be a cause of PN, but after so long (like in my case 3 years) if there is nerve involvement then I find it unlikely that PT will help because it is probable there has already been damage to the nerve. Dr. Potter saw scarring around the PN at the ligaments so it's unlikely that even if you got your SIJ stable that PT would actually cure your pain because the damage to the nerve has already been done. Of course her MRI could be wrong. The days that you feel "good", is the pain completely gone or just more manageable? If you feel completely normal after PT SIJ manipulation/aligment then maybe you could give it a little longer. Have you ever tried an SI gait belt? Taping of your low back/SI joint? Have they ever tried therapeutic ultrasound on the SI joint or at the SS/ST junction? Do you self correct at home several times a day or have your husband help you correct? Does your PT align your ilium as well as your sacrum? Often PT's don't align the sacrum which doesn't do any good because it immediately pulls the ilium back out of alignment. (Just giving you some ideas from my expeirence). My big problem with SIJD is that I can't do any of the stabilization exercises hardly because they flare up my PN pain and make my pelvic floor muscles even more spasmed. And if your ligaments are lax (like mine are) and you can't stabilize the muscles because of PN I don't think you will ever get the joint to stablize conservatively and then you are looking at a possible SI joint fusion/fixation surgery which I personally would not have.

Of course getting a better quality of life without surgery is ideal, but after so long I think people seem to have better outcomes if they just ahead and try surgery earlier rather than waiting around. I've only become worse the more I wait around trying other "conservative treatment". I didn't have a good experience with botox, but I think for people who have SIJD as a cause of PN then botox might possibly help them if the PN pain is just coming from muslce spasms from the pelvic floor trying to stablize the SI joint because the ligaments are too lax, for example. Of course again Dr. Potter saw scarring so if that's true then it's unlikely botox will really help. Dr. Hibner likes to use botox diagnostically for people though. I like Don, wish those people who were 'cured' from botox would post on forums.

I did get a surgery date much faster than I had thought. My friend (who doesn't post on the forum) saw him after me and was first offered a surgery date of Oct 31st , like Monday, (I guess there was a cancellation), but she wanted to wait till the spring. So there are always cancellations. It would be nice if Dr. hibner thought surgery might be a possibility for people that he could go ahead and order it and put people on the list since it is often a long wait. But I understand that really messes up their scheduling if they are constantly cancelling people, etc.

I feel like I've just rambled, sorry. One other thing....the new rectal pain could be because either the nerve is getting more compromised or something you are doing in PT is aggrevating it (i.e. SIJ manipulations). I am leery of SIJ manipulations obviously as this lead to my disabling PN symptoms. My rectal pain seems to come and go depending on my level of "flare". My pain medial to the ischial tuberosities never goes away though.

Are you considering Conway just for time purposes or because you think you might need both sides done and want to do it at the same time? If you just have pain on one side you live much closer to Hibner and have already started the process with him so it would probably be easier to go that route (in my opinion).

Thank you ladies and gentelman for posting.

I may just stick with Hibner since I'm already in "his system" and it is so much closer. My pelvic floor is not involved right now (before, when I was still working, and had the horrific clitoral pain, it was spasming) and Loretta did not advise Botox. I have had 2 ultrasound guided blocks done, one positive at the ligaments. The Potter MRI showed entrapment at the SS ligament in scar tissue. Do you think Hibner will just set a surgery date? I do not want to make an added trip to Phoenix. It is so expensive and time-consuming. I left a message on Friday, not sure how long it takes for them to call back.

Karyn, I am excited too. The proposition of living a normal life with my boys as they grow older is the only thing keeping me going. My husband is still not accepting this. I don't want to tell my family, they will be so disappointed. I've given PT a good shot and although she says my sacral torsion is 60% better, I'm going to talk with her Monday about her thoughts on this.

Has anyone asked they docs what type of patient gets worse or doesn't get better from the surgery? It just doesn't make sense, either of these possibilities.

I'm having some bladder issues today (wow, I tried to walk around the block with my family....woo-hoo!) and I hate that feeling of having a UTI.

And great idea about the warm water baths. I have actually freezer-burnt my skin twice in 1 week; the first area was over the ligaments (I just threw a bag of frozen corn in my underwear and forgot about it for awhile!) and the second down in the rectal area. Real burns! Put that on top of everything else and i'm just about over the edge. And, I need to figure out a way to trick-or-treat tonight whilst having rectal pain. It's so hard to enjoy family time when we get so self-centered with our pain.....but how can we not?

Off to run a bath...............xoxoxoxoxoxoxo
cari

answers to more questions (I can't figure out the quote thing to save my life).....

I was hoping...that since I caught it so early at 6 weeks and I was swinging a pickaxe the day before this all started...that PT could help me. It's been a strong 6 weeks with a very experienced Manual PT who has educated herself on the PN.

On my good days, my pain is manageable, so I don't feel completely normal even after PT. Hyperavoidance has become second nature to me. But, someday I want to be able to sit in a movie theater or drive to my parents' house in Denver, etc and that is just not possible right now.

Hey, if a get a surgical date, great. I will continue PT until then. But, no more blocks, botox, etc. Please no more.

carolynm wrote: But, no more blocks, botox, etc. Please no more.

I'm with ya!

Hi, Cari,
I am a little late posting, but I want to you to know I am thinking of you, and you are in my prayers. I was like you. I came to the point where I had had enough. The conservative measures just weren't helping. I even had my SI joint fused, certain that the nerve pain was due to SIJD. Well, it made matters worse. I wish now I had had the surgery 2 1/2 years ago. So I would encourage you to take the plunge. You only have a life to gain!

paulette wrote:Hi, Cari,
I am a little late posting, but I want to you to know I am thinking of you, and you are in my prayers. I was like you. I came to the point where I had had enough. The conservative measures just weren't helping. I even had my SI joint fused, certain that the nerve pain was due to SIJD. Well, it made matters worse. I wish now I had had the surgery 2 1/2 years ago. So I would encourage you to take the plunge. You only have a life to gain!

So Paulette you had PN pain before your SIJ fusion? I was thinking the fusion was the cause of your entrapment. What do you think caused your PNE? I have SIJD, but no conservative measures have helped me. Now I've had 2 PT's tell me that the PN must be calmed down before I deal with the SI anymore. I've had all the conservative PN treatments and nothing has helped, but I worry that like your SI fusion made your PN worse that PN decompression will make my SIJD worse! Do you think if you had had decompression first you might not have had to have an SI fusion? Not to make you regretful at all, just wondering for my own case. Sorry this has been such a rough road for your Paulette. Thanks for your continued imput and wisdom and wishing you the best in your recovery.