Health Organization for Pudendal Education

Hi Rechbill
thanks for your replies and suggestions.
The pain you get from your rectal muscles cramping...are you referring to the full bowel feeling of pressure etc that I described.
Do the trigger pt injections from your PT help with that?

I think my muscles cramp as well because of the back and forth between constipation and emptying from the laxatives. and also due to the bracing from the rectal throbbing. I suspect a muscular component to my rectal pain due to clenching in that area.. and the feeling of the pain increasing whenever Im tense or upset. etc..

I have 2 PTs available to me now..one a local one I just met with a few times.
and one NY C one who has a book about pelvic floor pain. She knows me well and is trying to make time for me to re-start with her.
I don't think either one does trigger pt. injections but could maybe point me to someone who does.

Also about the buffered vit c regarding helping cosntipation,
I have bladder issues which MAY be IC but we're not really not sure (I think it's pelvic floor problems)
However I' ve avoided all acidic products including vit C. But if I remember there is a special kind of vitamin C that is considered IC safe.. Do you know if that's the buffered kind? I t sounds familiar..
Thanks for your suggestions and hope you are well.

Hi all
A quick question about magnesium citrate taken for constipation and for helping with nerve function.
I have had bladder IC like issue s..and some things I can be sensitive to..but its hard to know what, and it can be confusing.

I think I had a flare a few years ago from calcium citrate but Im not sure.
Does citrate refer to vit C?
Some folks with IC have to stay away from Vit C unless its buffered ( a special kind)

Just wondered if anyone knows if magnesium citrate can irritate the sensitive or IC bladder.
I'd hate to miss out on this good supplement that could help my bowel issues as well as the nerve ones.
Thx for any info
Best regards,
Kathy

Hi, I have finally overcome my bouts of constipation. I take 17 grams of Miralax (1 normal dose) a night and have had soft stool ever since.

Hi rechbill,
Thx for the Miralax recommedation. So glad this is all you need!
Do you take opiate meds? or any other constipating meds if u don't mind my asking?

I take no oral opiates, and have a very low dose of dialaudid ( for now, in my pain pump) along with bupivicane.
I also use 12 mg of dilaudid rectally (suppositories ) 1 -2 times daily as needed...The later we believe is the cultprit since the other dose is so low.
My pain mgmt doc and my nurse both agree that we can't totally blame it on the dilaudid supps as opiates in any form/ or doseage can constipate.
Does anyone know would-- 12mg of a rectal suppository ( be a very high dose).I know its pretty high as we started with 3mg in 2011, gradually had to up it as it stopped helping,now even the 12 mg doesn't help much....(neither does the pain pump,but its not dosed effectively yet after over a year of trying with local docs.
However, given the fairly low dose of opiates in my body (other than the pian suppository), i wonder why the backup?..Other people seem to be taking much higher doses (esp the oral meds and seem to do fine with mild things like Miralax, or colace or just natural things like Prune juice.. etc.
I try it all!...... to try to avoid that awful "backed up" feeling on the PN... since my pain is anal rectal.

Im taking a very high dose of Dulcolax.. 3 to 3 and 1/2 pills. I built up to this dose over time. Its much too strong a laxative! Even with that I feel backed up and constipated until I finally go after a day or two of suffering,,,and then it literally empties my colon --like a colonscopy prep! for hours ....too strong, ery de-hydrating, yet it now takes so long to that Im afraid to go to something weaker.
I do take Miralax to 'help it along'' but doc said 'stick to one laxative'. I also take Colace to keep things soft and one magnesium pill daily...
I can't tell if its the nerve sending the signal that i have to go even when i don't,as even after Ive just emptied (sorry TMI! ) I may get the back-up urge feeling just hours later. Other times I can tell that do really have "something " there.

I would like like to just take a good strong dose of Miralax and see how do,I but wonder if it would be strong enough? Ive heard it can take days to work.
i also was sipping the drink with Miralax in it, which won't work and realized I had to chug it all down at once? Do you need a 6oz -8oz of water for it to work? have been doing less like maybe 4oz ) as I have bladder issues too and sometimes get tired of drinking so much water...all I can drink is water.
Thx for any advice on this, anyone I hate spending my life trying to figure out how to get the stool out.
I want to go up on my pump meds but am afraid of worse bowel issues. Soon we are going to trial a non-opiate for my pump. It was tried in the past with another doc, but my present doc doesn't think the trial was valid; so we're re-trying it in Dec and praying for good relief.
thx for any thoughts on the laxative issue for now!
There's got to be a better option..Pls don't tell me 'horror stories' about Dulcolax or other laxatives.. Ive heard them all and amscared enough.
Thanks again!
Katjy

Kathy, I'm not on opioids but constipation has been a big problem all my life. Miralax doesn't really do much for me. Dulcolax isn't all that great either. I get the best results from taking several different forms of magnesium including some of the more absorbable forms of magnesium such as citrate, malate, and chelate tablets. I also use ground flax seeds and chia seeds and eat a lot of fresh fruits and veggies. It helps to drink a liter of water in the AM soon after I get up and plenty of water through the day. Just giving you a few more ideas to try.

Violet

I can't take opioids or my constipation gets way worse. I found when I got off opioids things are better. Yes the meds do
help some, but it was not worth the price. I have hemorrhoids that causes problems also. It might be different if you
don't have hemorrhoids.
This is one reason I don't think pain pump would work for me.

Just my experience.

Hi Kathy
I am on Dilaudid and Tramadol..... I suffer severe constipation as well. If I get constipated, the rectal pain comes on and like you I don't know if it's nerve pain or the constipation pain. I understand totally!

I have been experimenting for years with laxatives and the only laxatives that work for me are "Senna tablets with a stool softener combination". I have take 3-4 of these a day depending on how my bowels are working. All of the other Miralax drinks etc that my pain doc recommended didn't work for me. Just a suggestion.......

Hope you feel better. (((Hugs)))

Hi Blossom!
Thx so much for responding!

Thx for understanding! It's so hard not to know whether you really are 'backed up' or if the nerve is making u feel that way. Isn't is frustrating to have to worry about that as well?
It happens late pm through after dinner.. not every day, (sometimes it worsens with eating,) which sucks cause Im really hungry all the time and need to gain weight.
Sometimes the Dulcolax works too well, and causes severe diarrhea episodes, then I feel Iike I just had had colonscopy prep!It has worked well at times , some days not, and others tooo much! It's way too strong for regular use. Thats why I want to change.
What you use sounds like Peri-colace--- which is a combo med with colace for softening and sennosides for stimulant.etc..Do you use that brand or just them take separately?
I may go back to peri -colace which had worked at times..
I think I need really large of amts of senna plus colace 100mg in orde to get results when I use them separately.

I hate to resort to a laxative suppository. One gastro doc suggested that for regular use.
I only do that when necessary. Its nice to have an an extra option but don't like to do it.

I use Dilaudid supps 12 MG for pain--- I suspect thats what is causing constipation, The only other opiate I have is a tiny amt of Dilaudid in my pain pump... (tho pain mgmt doc reminds me it could be the combination of both drugs .
I try to get by without the Dilaudid supps when I can.

BTW aren't you the person whose doc suggested Baclofen/valium suppositories for your rectal pain? He said they would really knock out the pain. If so has it helped? I sure hope so! I know how much it hurts!
I have a new urologist and PT who both know Pudendal issues and really seem to care. The PT is out on maternity leave until mid to late Dec and I can't wait for her to return.
They suggested Val/Baclofen supps are well. They said I must use them for awhile and over time I'll feel relief, as my rectal muscles are so tight, guess it will need time to relax them. (not an instant fix) My dilaudid supps gave more of an instant relief but not long lasting any more.
Will keep experimenting...Yesterday I used just the Valium/Baclofen supp and shopped for 2 hours not noticing pain..(but shopping is my best distraction, so that helped too.
If you would could you tell me which brand of the senna/stool softener combo works for you?
Thx so much..Thinking of you!
xo
Kathy

Hi Kathy
The brand I use is a generic pharmacy brand that I buy here in Canada. It's a combination dose of sennosides 8.6mg and colace 50mg. I never get cramps with these. I'm sure you will be able to find this combination at your local drugstore. As I said, it's the only laxative that works for me that doesn't cause cramps and all sorts of other terrible side effects. If I don't go everyday then I get the same problems that you get.....so I need to stay regular.

Yes I was prescribed the baclofen/Valium supps.... I actually don't need them anymore! I have a fridge full of them that I am not using. I am not having any muscle spasms in the levator ani muscle anymore since I had the nerve blocks. I am doing fairly well in that regard.
I also went for a very aggressive dose of lidocaine infusions recently and that helped me tremendously. My pain went from an 8 to a 0. I keep a pain diary and I usually have one week of no pain and then two days of pain around a 5. So I am progressing. I really think the lidocaine helped.
I spoke to NYT on the phone a few months ago and listened to her "story".... I decided to give lidocaine a shot and I am so happy I did. Have you tried any infusions Kathy?

Take care
Blossum xo

Hi Blossom,
Thx so much for your quick response. Im so happy for you that you are improving!
Wow, thats great!
Coincidentally I was going to get infusions of lidocaine on the advice of NYT, back about 2 mos.ago.
My pain doctor wanted to do ketamine infusions instead, tho I asked for lidocaine .For some reason he thought ketamine might be more effective for me.
I was about to get the infusions but was torn .
I 'd had ketamine a few years ago, but since the pain doc I had back then didn't use the proper protocol (he left out the anti-nausea and anti hallucination drugs), we couldn't go up to as high a dose as I needed... this was in 2011 I little to no pain during the procedure (which felt like a weird LSD trip!) but after the infusions the pain came back.
I had 2 separate sessions of it for several hours each, but we assumed that it didn't work, since we had to limit the dose amount at the time.
There's a doc at UCLA who I really want to see. He helped "Lotta Nerve". His name is Dr.Prager. She did well with ketamine too! (but it bothered her bladder ) So he had her try the pain pump instead, which worked well for her.
I believe it's a combo of timing and the right doctor! It hasn't happened for me yet! Its almost like Im trying too hard!

I so want to jump on a plane and see this doctor out at UCLA, but don't think I could sit long enough to even endure the taxi-ng on the runway .. otherwise I could stand stand a lot during thetrip.
Anyway I cancelled the ketamine procedure in my current doc's office, as he administers it on recliners which are hard for me to lie on (unless I could turn over and ie on my belly when needed ) will find out..I do know that when the meds were going into me the last time, I felt no pain during the 1st procedure and only a small amount during the 2nd try.
Hubby doesn't have much faith in that option based on the past, but done with the right protocol it could help. They' ve learned a lot more about these drugs in the past few years.
Hubby wanted me to ask you where you had your infusions done..Was it in Rochester like NYT ? She and I talked online a couple months ago about this and I was about go through with it. I so wish I did! I thought maybe they could move an examination table into the ketamine room ,but they said no...(not enough room.)
Meanwhile Im trying an injection of another drug in December to see whether we can use it for my pain pump. It's not an opiate which would be great.
But you've given me new hope and determination regarding lidocaine---If necessary.. I may re-visit it soon, and insist on the lidocaine rather than ketamine.
Im about 5 hours from Rochester (driveable) so thats' an option, if needed.
Did you speak to NYT via phone? I'd like to speak to her also, if necessary. After about 4 years of sitting pain and then severe rectal pain since July 2011, Ive got to believe that good things are going to come soon!( God willing). I also have bladder urge issues which get in the way ..they were the original issue and the the other stuff followed .

Im so happy for you! ....Its inspiring to hear! Another friend of mine also reported a lessening of her pain this week..God-willing it's a trend!
Would love to hear more about your experience with Lidocaine; if you could tell me a big about your type of pain and also the lidocaine procedure you had I'd appreciate it. I have constant anal rectal pain rather than spasms. but my PT and my doc feels my pain is kind of "stuck" in that area and we've got some work to do to get it 'un-stuck', and change the messages the nerve pathways are getting.
I'm waiting for her to return from maternity leave in mid to late Dec.

Thx for your laxative suggestion. It is the same ingredients as Peri-colace. .So I can try that as well. Trial and error!
Some days even the very strong Dulcolax doesn't work fast enough, so I've go to believe it's the nerve(s) sending the urge to poop sensations.
You know how it is!

Guess I'll keep up with the Val/baclofen supps., and see if they help.
Thx for what you suggested for laxative...That is the same as Peri-colace..I have it too.
It's something to try also..
Anyway If we can talk more about the infusions that would be great.
If it's easier ....i can PM you the email if u haven't gotten it yet. I(sometimes this website can be a pain to use...it times out and loses information if the posts are too long.) Im not the most consise writer.
Thx again and best wishes!
Kathy