Need help and advice please

[Okiegirl]

Thank you so very much Joelle7979

[Okiegirl]

Spoke too soon....was approved for surgery. Praying for a miracle. If anyone has any advice I’d appreciate it.

[April]

Hi Okiegirl,

I have not had surgery, but I will consider it if other options don't work. I've had this since the spring of 2015, so I'm doubtful anything else will work. But, unlike you, my medications have dramatically reduced my symptoms and I use ice when they do not, and that works pretty well (I have it in now, in fact). (Here's a link to my icing strategy: http://www.pudendalhope.info/forum/view ... =17&t=8241). Also, sitting is normally not that different from standing or walking, so that also makes it easier for me. I still work full-time and do most of what I used to do.

I think I would steer clear of a cash-only doctor for this (or, perhaps, for anything). Are you close to a university clinic or hospital? I think university clinics can be good places to get good care that is not as profit-driven as other places. Do you have a pain doctor? I think that would be very important to get right away. That way you can get medications to get your pain under control and then you can think about surgery options and not feel rushed to immediately deal with the pain. There are a few pn surgeons (you can see the list on the main page), but I think Hibner may have the most experience, and he has a good reputation on this forum. If I do surgery, I think I would do it with him. I did visit him to get the MRI and his input. The other important consideration is the type of surgery you think would be best. Each surgeon uses one of the these four techniques: http://www.pudendalhope.info/node/23. Each technique has its own drawbacks and advantages, so I think you'll want to consider those issues when deciding where to get your surgery done. If possible, I would also consider consulting more than one surgeon about your options.

April

[Okiegirl]

Thank you so much April. I do have a good pain management doctor but the second the blocks wear off, I get in big trouble. The blocks really just allow my pain med to work a little better but I’m never pain free. I do understand as a provider why some do not deal with insurance as it becomes a paperwork nightmare, I feel a little confident our insurance may reimburse somewhat but I know if I don’t get help pretty quick, I’ll never work again. As time goes on, despite my fight, I’m becoming more debilitated. I was in so much pain I developed CRPS and shook so violently at times it terrified me. I even became so sick I had a difficult time just bathing and performing simple tasks. I have heard wonderful things about Dr Hibner as well but also feel my family has suffered so, I need to take action quickly. I need to be able to care for them again.

[Okiegirl]

How common are bladder symptoms with PN? Anyone have any thoughts? I have 24/7 urge to urinate I find just miserable.

[Violet M]

Hi Okiegirl,

Sorry to hear you are suffering so much but I can definitely relate. I had pretty severe urinary issues too including feeling the need to pee often and not feeling empty. I had severe vaginal pain on one side and severe sitting pain on that side. So it sounds like pretty similar symptoms to yours. I was also pretty much bedridden a lot of the time. When your PT does internal work, is there tenderness along the course of the PN at the ischial spine or at Alcock's canal? The reason I ask is because when I went to Dr. Bautrant in France he immediately pressed on my worst area of pain just by finding the ischial spine via the vagina and pressing there. To him, that was an indication that the nerve was compressed between ligaments there. But you have a different history than I did and it sounds more like damage due to a procedure than damage due to ligament compression, but I could be wrong. I had fantastic results from surgery but it's not that way for everyone. The recovery was long and difficult but it was worth every penny I spent. But I knew going in that I had ligament problems so I was pretty sure of the diagnosis of nerve entrapment.

Does the physical therapy irritate the nerve or does internal myofascial release ease the pain? If the primary pain generator is the nerve, I believe that internal PT tends to irritate the nerve but if the primary pain generator is muscles, then myofascial release is more likely to relieve the pain. This is just my theory based on my own experience. When I had full-blown PNE it was very painful when the nerve was pressed on and when the PT did myofascial release in that area. Also, I had a severe pain flare-up for a week afterward. Post PNE surgery (about a year after) it was actually helpful to have myofascial release of the muscles and it didn't severely irritate the nerve.

You could try pyridium. I know it's not typically used for nerve pain but we had one woman post that it helped with PN urinary symptoms. For severe pain you could try buprenorphine if you can find a doc who knows how to manage it and prescribe it. I know one healthcare professional who is using it very successfully.

If it's Dr. Dellon you are trying to reach, I have heard from another patient that he is in Nevada for the winter and won't be back until March. The reason I mentioned him is because he is one of the docs who is cash only.

For crps you might want to read nyt's posts on this forum. She gets ketamine and lidocaine infusions for crps. I had central sensitization I think because just the sound of the phone ringing would make me jump. Getting PNE surgery is what helped me eventually get rid of it.

If you can get your local doc to contact Dr. Jarnagin he could probably advise your doc on how to go about administering the amniotic allograft injections. I know he has communicated with at least one other healthcare professionals with advice on how to do this. If your physician knows how to give an old-fashioned pudendal nerve block via the vagina, they should be able to administer the allograft the same way Dr. Jarnagin does. Just based on what Dr. Jarnagin told me, I would be very tempted to try it before trying surgery because my understanding is that it carries very little risk.

Just trying to brainstorm anything that might possibly help you. It is curious that you would develop pain that long after the colonoscopy procedure. I know it takes time for scar tissue to form so I wonder if that has anything to do with it. If you do have scar tissue, a plastic surgeon like Dellon or Elkwood might be the way to go because they are trained in nerve microsurgery but I agree with April that Dr. Hibner is incredible and has helped so many people.

Praying for a miracle for you,

Violet

[Okiegirl]

Thank you for your response. I too am mostly bedbound and am amazed at how this all happened. I noticed post colonoscopy that my bladder seemed a little irritated but I have always went frequently so never thought too much about it until the searing pain started and it nearly killed me. I didn’t sleep for 6 days straight and I think the urologist just admitted me out of pure pity for pain control. After the hospital stay there were times my symptoms would flair especially in the evening so I would use ice and heat and pain meds and I made it through. Full reoccurrence in June that has totally debilitated me. My bladder looks healthy but urogynocologist treating for IC, nothing has helped. I went from running a full time medical practice to flat on my back with perineal pain that localized to the left, urinating every 5 min without ice to the groin. I began to experience crps a few months in and would shake and jerk uncontrollably especially with a loud noise. The blocks have helped to stop some of that along with Percocet and Valium but not completely. Had no luck with lyrica or neurontin. My pt Tineled me so to speak and I nearly jumped off the table. She does do internal work but is careful to avoid that area and she is amazing. I manage to survive only if I stay quite immobile and that is no life. I dread every day due to the pain and any trip out is only to pt or doctor and it’s very hard on me. When I sit which is rare I have severe pain in vagina urethral and it seems to make me experience urinary urgency even when I know my bladder is not full. At first I would simply stand all day as being in bed was so depressing to me. Now I stay in bed mostly. My body is exhausted from the fight. I have tried Uribelle and pyridium with no relief also bladder instillations. The pain does not seem to be coming from inside the bladder if that makes sense. There is suprapubic pain at times but it feels nerve generated. Pain management has offered me ketamine but it’s quite costly. I have chosen surgery and will have it done Jan 3. It’s a scary thought for me physically and financially but I know I’ll never be able to work again without it. Conservative management is failing. Praying for God’s mercy and grace. My family has suffered so much.

[Okiegirl]

I will also have ilioinguinal iliohypogastric nerve release on the left side as well as perineal nerve resection as surgeon feels this will help relieve bladder pain. Very basic ADLs like showering and fixing my hair are difficult for me. The trip to have the surgery will be quite hard on me but I know I have to make it there.

[Violet M]

Well, I certainly can see why you would make the choice for surgery and I wish you all the best with it. I hate to think where I would be if I hadn't tried surgery.

BTW, it's my understanding that Dr. Dellon does surgery in Nevada too -- just fyi for those who are following this thread.

Violet

[Okiegirl]

It was definitely a hard decision to make but I’ve exhausted all options. I don’t think it is s decision that should be taken lightly. If anyone is following thread I’m begging for your prayers.