sorry to say but I'm back

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN

sorry to say but I'm back

Postby Joe house » Mon Jun 19, 2017 8:06 am

Well it has been a while, it has been a long road. I have SI joint and pelvic floor dysfunction. I have been in Pt for both for a long time. I also had an rectal perineum abscess that went undetected for how long I have no idea but when I found it and was treated with antibiotics it made my pudendal nerve pain 80% better with in 3 days. I thought I was on the road to being healed. Well the infection came back two more time and I had surgery. The surgery set me back months it was very hard on my pelvic floor. Then the infection came back again and was treated with antibiotics but I could only take half of them because My stomach was shot from the three other times I was on them. So it was not long before the infection came back again but my body fought it off. Well once I had the infection under control again I could make a difference in healing my pelvic floor but my pelvic floor PT released me said she could not help me anymore she was stumped because no matter how many time she releases muscle and tissue the hypertonic state of my pelvic floor would return. It has been two weeks without PT and my PN is coming back or the infection is back or both. I saw a pain doctor a week ago but he was not sure my pain pattern was PN. I told him my adductor, piriformis, butt, rectum, pubic and abdominal area hurt. He said that not the normal pain pattern for PN. He said normally you would have pain in your testical. I said my testical is the worst of it. It hurt so bad it made me pass out once and it gets so bad I can not move. He then offered to give me a Pudendal nerve block with steroid.

I'm not sure how I feel about the block I told him I read some good things about them and some bad things about them. His response was he only had good experience with them. I have my reservations about this guy and the nerve block. PudendalHope list all my symptoms for PN but he said they were not the normal pain pattern. That is a red flag for me. He dismissed my concerns with the block too. My pain right now is not constant but can happen if compressed by sitting and My Si joints going out of alignment or when I sleep and lay on my side or my shorts get pulled tight against my adductor and testicle in my sleep like last night it woke me up with pain in my adductor, testicle , abdominal area it was at a 8 out of 10. I was stuck in bed and could not move for an hour and I had to use the bathroom. So it is late almost 2am and I'm afraid to go to sleep in fear of a flare up in my sleep and I have no idea what to do. I'm an emotional wreck, depressed and just scared that it will get as bad as it was 8 months ago. I can't get my SI stable after 18 months of PT and now both my SI PT and pelvic floor PT have recently given up on me and I'm closes to giving up too. thanks for letting vent. house
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Re: sorry to say but I'm back

Postby janetm2 » Mon Jun 19, 2017 3:24 pm

Welcome back Joe,
Sorry you have such a complicated set of symptoms and infections that are making matters worse. One idea may be to contact Jerry Hesch, he is a PT in Nevada (see PT list off the homepage) that seems to be able to help with SI issues. I think he tries to refer you to someone nearby to you if you are not in Nevada.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: sorry to say but I'm back

Postby Buttercup28 » Mon Jun 19, 2017 4:30 pm

Hi Joe,

You should see a hernia specialist and a hip specialist to see if you have any underlying undiagnosed hernias or potentially a hip issue (labral tear, impingment, arthritis) that is causing your pain patterns.

~ Buttercup
Sudden pelvic pain onset that landed me in the ER 2x -- diagnosed with severe pelvic floor dysfunction and suspected IC. Diagnosed with pudendal neuralgia via MRI and EMG and hip impingement/labral tear on CTscan. Ran the gamut with tests, treatments, procedures, injections, drugs, etc. since then. Still on the quest for answers....
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Re: sorry to say but I'm back

Postby Joe house » Mon Jun 19, 2017 8:11 pm

Hello Jane and Buttercup

I had a MRI of my hip but not major was found and I had a MRI of abdominal area and I saw a surgeon to also check for a sport hernia but nothing was found . I also contacted Jerry Hesch a few months back but it had been many years the last time he was in my state he did not know anyone to send me to. I am caught in this endless cycle of my SI joint and pelvic floor fighting each other and it also involves other areas now like my Iliac psoas muscle,piriformis and hip flexer. I still feel like if I can break the cycle I will get better. My next step is to get a second opinion from a surgeon to make sure the infection is gone and go from there. Thanks for your support I hope you both are doing well house
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Re: sorry to say but I'm back

Postby Violet M » Wed Jul 05, 2017 6:56 pm

Hi Joe,

I got into a cycle of not being able to get pelvic structures to stay in alignment due to SI joint dysfunction and sacroiliac ligament strain. I had several prolotherapy injections into the SI joint/ligament area and it helped to stabilize the pelvis. I went to a physiatrist who used fluoroscopy imaging to locate the SI area properly and she used a tiny bit of steroid in it so that insurance would pay for it. You don't really want the steroid because the goal is to set up an inflammation in the SI ligaments to stimulate healing. Ligaments don't have a good blood supply and they are slow to heal. But insurance typically pays for steroid injections so the tiny amount of steroid allowed me to get it paid for by insurance. It is a bit painful for a few days afterward due to the inflammation and also because you can't take NSAIDS for pain relief since you want the inflammation to occur.

I agree abdominal pain isn't typical with PN but it can happen if the psoas muscle is in spasm. In y experience with PN, I eventually had pain that spread to other areas as more and more muscles went into spasm. Is you pain bilateral or primarily on one side? Did your PT do an internal exam and press along the course of the pudendal nerve to see if it is tender there?

I'm not sure exactly how the infection plays into this. If the infection is external or semi-external, you could do epsom salt soaks in very warm water to draw out the infection. I know someone who had a rectal fissure once and that was what the physician recommended to draw out the infection. You would need to do it 4 times a day for 10 minutes and always end with very cold water. If the infection is internal where the water wouldn't reach then that wouldn't be helpful but I wanted to mention it just in case it is in a reachable spot.

The number of people who have bad reactions to pudendal nerve blocks is small. The people I know who had bad reactions had already had a number of steroid nerve blocks before. I think it is important to limit the number to 3 as cautioned by Dr. Robert in his initial article on PNE. A more recent publication questions the validity of even using steroid PN nerve blocks but I think it is reasonable to try at least one for diagnostic purposes and if you are worried about the steroid, request it be done with just marcaine.

You still have options but I know it's exhausting to keep pursuing them.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: sorry to say but I'm back

Postby Joe house » Mon Aug 28, 2017 11:18 am

Hello violet
My body finally fought off the infection at least the surgeon thinks so. My second opinion from the a pain doctor that treats PN did offer me a injection. However, my rehab doctor did not agree with him, he thought my injury was too complex to just treat with one injection. He could be right my pelvic floor and SI are getting worse and are irritating the pudendal nerve. It mostly acts up now when I have to have a BM thanks to the pelvic floor dysfunction and also when I severly go out of alignment. I holding off on the injection for now. thanks for your support I hope you are well. Joe
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Re: sorry to say but I'm back

Postby Violet M » Wed Aug 30, 2017 4:12 am

Hi Joe,

Well, I'm glad you were able to fight off the infection and I hope you will be able to heal now that you can focus on other things. Keep fighting. You will eventually get this under control I think.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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