3years and now have positive PN diagnosis
3years and now have positive PN diagnosis
HI I have been suffering too since I had Pelvic Floor surgery 3 years ago. I have had every also had two rectopexy ops because of perineal descent and as my Doc said it may not be the cause of my pain and he was right it did nothing but still make me feel that i have not fully gone to the toilet and cause terrible pressure pain . The pain is there all day and of course worse after a B.M. and as most of you know is so debilitating it puts me to bed for most of the day. There is nothing that take that makes it go away. I have had Ketamine Sacral Nerve Stimulation a Spinal stimulator and Botox. Is there any one out there who has had Decompression Surgery By Thierry Vancailles in Sydney. I also have had Electrode Stimulation by him but it just fired things up.I am now a nervous wreck and have a very bad Anxiety thus taking the most awful drugs for both depression and anxiety. I take tramadol but it really only takes the edge off until the next dose when after Valium I am just a dopey blob. Has anyone take a better pain medication that works
Re: 3years and now have positive PN diagnosis
Robbia,
I am from Australia and have similar symptoms to you. Mine all started following a botched hemorrhoidectomy with complications of an abscess and a fistula. About 6 months after everything had healed I developed this pelvic floor burning spasm pain.
My specialist in QLD knows Thierry vancallie in Sydney and has guided him on nerve stimulation techniques. I have so far tried a peripheral nerve stimulation from Boston Scientific. The Boston scientific team that treated me also travel to Sydney to work with Thierry. The peripheral stimulator didn't work for me. Also I have tried caudal epidural. Yet to try botox.
Well the rectal pain is a difficult condition to manage. No doubt about that.
Things that you can try that have helped me.
1. Heat - I use a wheat pad whenever I have flare ups. 2 minutes in the microwave and really helps to relax those spasmed muscles.
2. Endep - I am currently taking 25mg at night and it really has taken the edge off my pain. It hasn't stopped it all together but I can definitely notice a difference in the burning when I try to reduce it. You can't take tramadol and endeo together though.
3. Lyrica - nerve pain drug which also helps. I can only tolerate 75mg twice a day but I do know of people taking much higher doses with good relief.
4. Targin - Oxycodone based drug with naloxone so the constipation side effects are less. I find this works better than the tramadol for me.
4. Hobbies - Anything to distract you from your pain can help. Try getting out of bed and just keep busy and moving, I find sometimes after an hour or so my body seems distracted from the pain. Of course the pain always hits me when I relax again at night.
5. Still softeners - Take daily to reduce the stimulation of that rectal scar tissue when you have a bowel movement. My pain depends largely on this. If I have a difficult bowel movement I know a tough day is going to be ahead. My pain always comes on about an hour afterwards. I take lactulose.
I have suffered about the same time as you. When i look back I am not cured, but I certainly have less pain than 3 years ago.
Pelvic floor physiotherapist has confirmed my trigger points are scar tissue.
I am from Australia and have similar symptoms to you. Mine all started following a botched hemorrhoidectomy with complications of an abscess and a fistula. About 6 months after everything had healed I developed this pelvic floor burning spasm pain.
My specialist in QLD knows Thierry vancallie in Sydney and has guided him on nerve stimulation techniques. I have so far tried a peripheral nerve stimulation from Boston Scientific. The Boston scientific team that treated me also travel to Sydney to work with Thierry. The peripheral stimulator didn't work for me. Also I have tried caudal epidural. Yet to try botox.
Well the rectal pain is a difficult condition to manage. No doubt about that.
Things that you can try that have helped me.
1. Heat - I use a wheat pad whenever I have flare ups. 2 minutes in the microwave and really helps to relax those spasmed muscles.
2. Endep - I am currently taking 25mg at night and it really has taken the edge off my pain. It hasn't stopped it all together but I can definitely notice a difference in the burning when I try to reduce it. You can't take tramadol and endeo together though.
3. Lyrica - nerve pain drug which also helps. I can only tolerate 75mg twice a day but I do know of people taking much higher doses with good relief.
4. Targin - Oxycodone based drug with naloxone so the constipation side effects are less. I find this works better than the tramadol for me.
4. Hobbies - Anything to distract you from your pain can help. Try getting out of bed and just keep busy and moving, I find sometimes after an hour or so my body seems distracted from the pain. Of course the pain always hits me when I relax again at night.
5. Still softeners - Take daily to reduce the stimulation of that rectal scar tissue when you have a bowel movement. My pain depends largely on this. If I have a difficult bowel movement I know a tough day is going to be ahead. My pain always comes on about an hour afterwards. I take lactulose.
I have suffered about the same time as you. When i look back I am not cured, but I certainly have less pain than 3 years ago.
Pelvic floor physiotherapist has confirmed my trigger points are scar tissue.
Allan.