Doctors have given up on me after 3 years

[Patty]

I had 2 rounds of Botox to my pelvic floor by a Urogyn. Did nothing. Went to see my GI doc who tells me they did not inject the correct area. Needed it in the spincter rectal area. He assured me it would work. Did nothing. It caused a few episodes of incontinence but then it resolved.

[volans]

I'm not sure about having Botox near the anal area. You would need to ask about the risk of becoming incontinent of feces. It would depend on which muscles they injected.

Violet

I went to see my pelvic physiotherapist for the first time in a year and a half. I explained to her that my anal fissure seemed to really kick off the pain and start this mess and she asked me to think back further in my history if there were any long term complications that I've had throughout my life. The only thing I could think of was IBS/constipation issues, but I never considered them that serious because the pain and pressure is always in the same small spot near the pubic area, basically the point where the sigmoid colon becomes the rectum. Whenever gas or stool would pass through that spot i'd feel a lot of pressure and often a loud croaking noise. It used to embarrass me in school because people would hear it during exams.

Secondly, I forgot to mention why I had a fissure in the first place. 4 years ago I was getting a sharp pain at the tip of my penis when I ejaculated, and my doctor assumed it was prostatitis and gave me some crazy strong antibiotics called cipro. Well, cipro gave me INSANE IBS pain in that very spot, unimaginable bloating, and the constipation caused the fissure. Because the fissure was an objective observable symptom, I focused on that rather than all the stuff surrounding my fissure, and for the first time I'm looking at my medical issues as a whole.

With that in mind I did some researching and came across Levator Ani Syndrome ( https://www.healthline.com/health/levator-ani-syndrome ) I literally gasped because so many of these symptoms are spot on. The struggle to begin urination, premature ejaculation, etc. I haven't read enough into this to know if it's curable or not, but I do recall a post somewhere on here about using botox to relax this kind of spasm? Next week when I see my PT again I'm going to mention this to her.

[janetm2]

Volans,
I had levitor ani syndrome twice before pudendal nerve entrapment. What worked each time was Electro Galvanic Stimulation (EGS) treatments. The treatments (I think 3 rounds) were done by a colon rectal Dr. Treatment stopped the spasms. The doctor that diagnosed the syndrome did not do the treatment rather another doctor in the practice.
Janet

[volans]

Volans,
I had levitor ani syndrome twice before pudendal nerve entrapment. What worked each time was Electro Galvanic Stimulation (EGS) treatments. The treatments (I think 3 rounds) were done by a colon rectal Dr. Treatment stopped the spasms. The doctor that diagnosed the syndrome did not do the treatment rather another doctor in the practice.
Janet

Thanks very much for the info! There's a paper here suggesting that biofeedback is more effective than EGS for treating people with LAS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847007/

Just curious, did your LAS cause PNE for you? Or was it a separate event that caused it? I'm hoping I don't have PNE as the failed nerve blocks I received 3 times hopefully indicate that my pudendal nerve is not the source of my pain at the moment.

I had a great colorectal doctor who I just found out retired, and now it's going to take a while for me to find a different colorectal doctor, as the referral process is very slow here. I do have an appointment with a urogynecologist who is very well researched with pelvic syndromes, and since LAS is more common in women than men, he might be able to help me out rather than having to find another colorectal doctor.

[janetm2]

Volans,
I think the LAS and PNE were separate. The LAS was 2007 and 2008. The PNE was diagnosed 2011 but started 2010 after I sat on a hard chair in pain and did not get up. I think that caused the ligaments to contact and squeeze the pelvic nerve.
Best of luck finding a colorectal doctor to help you. Most of I hope it is just LAS and curable. Certainly if biofeedback is the new and better treatment you can go with it.
Janet

[Patty]

To me levator ani syndrome pudendal neuralgia pelvic floor dysfunction is all the same issue. Muscles are spasming squeezing the nerves casusing great pain. I tried to find the Electrogalvanic treatment on the east coast but had no success. Biofeedback did not work. If anybody knows of anybody offering EGS please let me know.

[janetm2]

Patty,
I tried to find the doctor that did the EGS but the practice only lists 2 of the 5 that were there and neither of them is him. I am sorry the biofeedback didn't work. Wish I could help. I can only commiserate with the pain and disappointment with biofeedback. I tried heart math biofeedback for depression but it works by having you think of something that makes you happy, I found that pretty impossible when depressed! Late update: I found info on the Cleveland clinic website under their colorectal center for functional bowel disorders under additional treatment options Electron-galvanic stimulation for elevator ani syndrome.
Best of luck.
Janet

[volans]

I went to my PT and asked if LAS could be causing my chronic pain and she brushed it off saying it was unlikely that I have it. She suggested that my puborectalis muscle is tight and that's giving me pain, which is odd because that's within the group of the levator muscles, so I'm not sure how you confirm one but disconfirm LAS. And while I have constipation problems and trouble properly relaxing the muscles to have a bowel movement, I'm able to pass most of my stools* by getting into a squatting position, rather than just sitting normally on the toilet seat. One reason why that probably helps me is that squatting relaxes the puborectalis muscle (maybe all of the levator muscles, but particularly that one, as seen here:https://i.imgur.com/7ESAAHr.jpg )

*when I say i'm able to pass most of my stools, the very end usually ends up breaking off early by my muscles inadvertently tightening and it feels like part of the stool just sits in my rectum.

Even aside from times of having bowel movements, one of my most comfortable positions generally is squatting. If my calves were able to support the weight of my body, I'd do it all day long.

In one month I have an appointment with my pelvic pain doctor and I don't know what to say to him. He seems confident that it's PN/PNE even though 3 separate nerve blocks and an MRN came up empty. I also find it odd that my most acute pain exists in a relatively small area: the back of the anus/rectum, and an inch from the left and right sides of the coccyx (if i push on the actual coccyx bone there is no pain). Then the second most prominent pain area is my scrotum, but oddly my perineum is not sensitive at all? If I have an orgasm, the perineum will have a deep, heavy ache* for an hour or two, but aside from that I can poke and apply pressure to the perineum all day long and nothing happens. I thought the perineum is a classic spot where PN persists (cyclists syndrome, after all). So my pain is travelling from the back of the anus to the scrotum and . completely skipping the perineum where the nerve passes through?

*I realized if I apply a lot of heat directly to the perineum before and after the orgasm, I can reduce that heavy ache by about 80-90%, which makes it sound more like hypertonic muscles than a nerve problem.

The most depressing thing after 5 years of this condition is that I'm just as confused now as I was 5 years ago when this first started.

[volans]

I'm also curious if there are other users on this forum who have a very difficult time sitting and standing, but find walking relatively easy? I figured most people with PN have difficulty walking because the constant movement of the hips and sit bones would cause friction against the pudendal nerve. For me, I can walk for up to 3 hours and then any longer my back starts to buckle, but that's still pretty impressive considering that one hour of standing is very difficult for me, and 2 hours I get near the point of collapse unless I start moving around. I don't know what to make of this, except that perhaps if the PN is compressed or irritated it must be in a spot that doesn't receive much friction from walking.

[stephanies]

Walking is generally better for me than standing still. When I stand still I have an increase in pain and pressure.

Stephanies