My doctor and pt insists that my pain is muscular; tight muscles irritate nerves, skin, tissue... Etc..

Did the doctor do an internal exam (vaginally or rectally)?

I think mine is muscular too Alyssa. Mine contract hard when I have the urge to BM (they pull up and in, so I assume this is the pelvic floor). Not helping me heal

Alhough, nerves drive the muscles right? And botox does work on the nerves that drive the muscles...

Did your Doctor say anything about more botox? I forget when you had your first injections into the pelvic floor. It took me several rounds at 6 months apart to really make gains. Now I feel back at the beginning with the anusmus

Pafen, I have access to a tens machine and would like to try the tibial nerve stimulation. Can you tell me where to apply the pads? I am having trouble finding that info out. Have you noticed any effect yet?

MSimon,

My doctor has suggested Botox again but that won't be until march... I have noticed some difference with the first round but still have pain... Less than before... Sitting burning pain continues!

Some muscles still remain tight! I have been given 1.5 hour a night of exercises and I just don't have the time everyday to do them plus I have to use the "wand" nightly; very much time consuming. I work full time, have two kids so that is not realistic. I told my pt that and she basically said "you do want to get better right"? I just thought I also have to the bills, take care of my children. Most of her patients don't work because they suffer from chronic pelvic pain.

Alyssa,

I have managed to remain pain free for a large part of the day lately. I still have pain after a bowel movement though which lasts for an hour or two but then its been disappearing. Then I tend to get the burning pain when I sit down at night.

Sometimes I think I am getting on top of it, then bam in the evening it starts to burn which requires me to take the low dose of endep.

I am using the tens machine for 30 mins a day. If you do a google image search you should get an idea where to place the pads. General guide is on the inner part of the heal and then the second pad just up the inner leg a little higher.

When you turn the tens machine on, increase the stimulation till your toes start to curl slightly. The same thing applies with the implanted stim leads. When the toes curl that means it is stimulating the tibial nerve. That's what I've read anyway.

It seems a fairly harmless area to stimulate with an implanted device, I am thinking about giving the internal device a go vs the much riskier sacral stimulator up into the spine.

The stimulator is even used to treat anal fissures. Maybe it somehow targets the pelvic floor/sphincter nerves and causes them relax??

Thanks Pafen. Something like this?

http://www.nature.com/ajg/journal/v107/ ... 30f1th.jpg

Are the toes just supposed to curl to indicate you have the right place? Do you leave it on at that level (when the toes are curled)?

Msimon,

When the toes start to twitch a bit I leave it at that and just run it for 30mins each day. Usually in the evening when I am watching tv or something.

I am also still doing the dilation. What I have noticed with the dilators is when I insert them on my painful days it is extremely hard to get past that internal sphincter muscle ring. I am guessing because it is in spasm when I have the pain.

Now we just need to work out what causes it to spasm so much at times and other times not as bad.

After a good week today is my first day where I have had a bit more pain again. I am finding it really hard to maintain the perfect bowel movement each day. Overall though I think I have been doing better.

I also believe there is a link between thickening of the internal sphincter and rectum with rectal pain. Now I have had an MRI which shows mild wall thickening of the lower rectal wall. Yet I had a colonoscopy which came back as normal.

I am just wondering if it's possible to have some kind of inflammation of the anal canal and rectum which can't be seen very easily. Perhaps the lesion is minor but the pain is extreme? Just like an anal fissure.

Alyssa,
How are the injections working??

I think the gabapentin is starting to take the edge off... But by late afternoon the pain level ramps up again. I'm taking one tablet at night and one in the morning. I think the normal pattern is to have one around lunch time too... Bit I feel like I've had a lobotomy, and don't think I'll function if I take another one!!!
I have my second session of acupuncture tomorrow. See what she says about my new diagnosis of neuropathic pain.

Pafen.... I know you said you had a bad day... But do you think it's making a difference to your pain over all??

OMB x

http://www.specialistpainphysio.com/pud ... europathy/

An article on chronic pudendal neuropathy.

It seems as though the nerve block has not worked since I still have the burning sitting pain; I am going to contact my doctor next week (2 weeks since the injection) to get further details. I've been trying to not sit much at work and have ordered a sitting/ standing desk (varidesk)... Now I have back pain!