Health Organization for Pudendal Education

Seawalker,

I agree with HerM that the colostomy idea is quite extreme. I'm so sorry that you are struggling, I guess we all are in this together:)
I think you need a second opinion and it would be nice to get it from someone who is knowledgable about PE. What other options for docs do you have?

cari

I've had a colostomy mentioned to me as a possible option if the surgery to deal with the nerve is unsuccessful - either that, or a neurostimulator. The colostomy was discussed because BMs are a major pain trigger for me, and when I had a week without eating and therefore without BMs, my pain was much reduced.

I am not sure which sounds worse at the moment. Right now I am just hoping that the surgery will help things.

Seawalker I do hope they've got you on some meds to help with the pain.

I know. The thought of having it done is extreme. I have been contemplating it for 2 months. The surgeon does research in pelvic health. She said my pelvic floor was basically having pulsating spasms after some light palpation. She suggested giving it a "rest" for a while. BM's are or were a major trigger for me too. Skipping a BM only irritates the pelvic floor too as stool collects in the rectal vault. If I were to stop eating for a week i would probably feel better as well. I have been told by other docs that this may not relieve my pain, but how much more abuse can my pelvic floor endure?

I take so much miralax now that I sit by the toilet every morning and wait. It the only way I can avoid straining and further irritation. It seems like my life revolves around poop now. I wake up and soke my bum in a warm bath, eat breakfast, wait for BM, soak in tub, then try to break the apin by taking valium, neurontin, oxycodone, etc. No way to live. My pudendal neuralgia developed slowly over the last 18 months so it wasnt always this bad.

This surgery seems a lot less invasive then an entrapment decompression. If I knew for sure this was the case I would say "dig in". One plus side to a colostomy is that it is reversible, and you can irrigate rather than having to wear a bag all of the time. But, I just cant imagine doing this at the same rate. I am 31 years old, and I dont have inflammatory bowel disease or cancer. I would feel embarrassed wearing a bag, even though my wife stands beside me - whatever decision I make.

Another suggestion was an intrathecal pump with pain meds and baclofen, which might relax the pelvic floor. This is scary as well, but less invasive. Since my pudendal has been irritated for so long I wouldnt expect immediate results from either.

Who knows-- I may be the first guinea pig to have it done?

We all know how horrible this PN disease is. At some point, I will have to accept that I must make compromises to try and get better. Life is short!

Anyway, thanks for listening to my rambling!

Jason

No, its not rambling....

The thing is, I know that it would help me. I have diverticular disease - that is, diverticula that give symptoms, in other words pain. Pain after eating, and most other times too. When I had diverticulitis - infected diverticula - then I just couldn't eat, simply not possible as too much nausea and no appetite at all. I ended up basically not eating for a week, hence no BMs at all. Not getting blocked up - just no throughput if you follow me.

And the PN pain was greatly reduced - much along the lines of what has been suggested to you, just giving things a rest.

If you wanted to, you could talk to your doctor about whether a low residue/liquid diet might be a possibility for a short period of time. Less extreme than a colostomy, that's for sure. At least you would see if it makes a difference.

I think that HM's suggestion of botox is a good one, too.

Hi Jason

Just seen your post and felt had to respond. You seem a strong guy with plenty of support whatever your decision. Pain makes any option possible in your mind. I have had rectal pain nearly 2 years now. I am youngish guy, very young family. Last year i was told a sphincterotomy would help - it didnt. All it did was weaken my control. I was then told Botox to sphincter would help - it didnt. Then i had massive dose of Botox to pelvic floor. The pain reduced but after 8 weeks pain returned. The dose was so high i am now incontinent, hopefully temporary. I have type 1 diabetes and inject 4 times a day. I have Chronic fatigue and food & drug intolerances that restricts 90% of all foods. Also cannot take pain killers so am in constant high level pain. Many times i think of ending my life and its reassuring to know its always there as an option. Not because i am depressed but i truly believe few could manage what i go through.
To look at me i am normal. The quality of life i have is poor. But i am successful in my work. My children idolise me and my partner loves me and cleans my often accidents without complaint and always with love in her eyes. I am so embarassed by all above that hardly anyone knows but at same time feel incredibly lucky. I felt need to share with you because if you have a chance to reduce pain by having a temporary colostomy and you have a devoted wife by your side then grab it with both hands and go for it. Good luck. Marcus

Marcus, thank you for sharing that. Your words are very encouraging and put things in perspective. I feel for you. Those same dark thoughts have crossed my mind as well and I think it is only natural in certain situations. I have considerable chronic pain from my spinal cord injury from the neck down and it scares me to think ahead to the the long life I have to endure. My girlfriend - now wife- had to clean up my messes many a time after my injury. You know your partner is a keeper if they stick around after that! But like you, I count my blessings, and my loved ones who support and love me. I could never commit such a selfish act, to those who care about me, and you, and I hope you wouldn't either. We should not give up hope on ways to manage pain and the misfortunes of our health. There are many ways to learn cope and manage I believe.

I am really sorry to hear about your sphincterotomy. At least the botox should wear off and you still have some control. What do you think is the nature of your rectal pain? what triggers it? As far as pain management, there is the intrathecal route, which could mitigate your drug intolerance? Have you been to a good university hospital pain clinic? Also, I have heard that biofeedback can be very successful at reducing chronic pain. Its on my list as well.

calluna, thank you for the advice. I am going to ask my doc about trying a liquid diet as a test. I wonder why they didnt suggest that before ripping out my entrails.

I feel for all of you as I am going through hell myself. I have no quality of life at the moment and not the best support in the world, but nobody seems to understand this. I really need to talk to somebody here as I'm losing it. I am not even able to write like myself anymore. That's why I need to talk to somebody on the phone also. I am screaming out for help. I need help now.

my heart goes out to you..just a horrible situation

BM's as many of the posters here, have become the most important thing in my life, as straining increases my symptoms (numbness in my case) by magnitudes...from what the docs say, and at least as much from the info here, it is clear that straining, causing some degree of perenial decent, will increase PN symptoms since the PN is being stretched..and if the PN is entrapped, there is little or no margin for stretching

there has been much said here already by people with way more knowledge then me, so I will only comment on my own experience in saying that it is a difficult decision each with each BM whether to push a bit or just try and wait

recently got nitroglycerin ointment from a colorectal surgeon, which relaxes the sphincter prior to going, or at other times to help things through, or aid in healing of fissures

good luck to all with their struggles and making the difficult decisions to improve life quality