Levator Ani Syndrome or PNE?

[canuck1800]

After 5 years of chronic pelvic pain, rectal pain, pain while sitting, lower back pain, and sexual dysfunction, I have spent many of these past few years in and out of doctors offices ruling out things like prostatitis, back problems, having normal MRI scans, Xrays, etc. My pain doctor suspected that my symptoms match PN/PNE, and over the course of 2 years I was given 3 separate nerve blocks along the pudendal nerves (bilaterally), each time not relieving any pain. Regardless, he remained confident that I have some kind of pudendal neuralgia and could only offer a risky surgery that he himself would not recommend. Basically I hit a dead end, as I don't want to have risky surgery on a nerve that might not even have entrapment

Now I'm back to the drawing board seeing if I can put the pieces together, and here is my brief medical history:

For as long as I can remember I've had IBS-C. It used to bother me a lot because from my lower left abdomen to the pubic area my colon/rectum would make loud noises when stool or gas passed through there. I didn't do anything about it because I figured constipation is common.

Fast forward to 2012. I started lifting weights for the first time ever. I never had any accidents weight lifting, but towards the end of that year a new symptom appeared. Whenever I felt my stool moving from the lower left abdomen into the rectum I would get an insanely intense pressure/pain in the rectum that would knock me to the ground. It would typically only last 20-40 seconds, and maybe 5-10 minutes later I'd have a bowel movement and feel better. It usually only happened with larger, harder stools. (several years later I learned than whenever I get one of these intense spasms I can draw a sitz bath quickly, sit down, and get some relief from the hot water)

A few months pass and a new symptom appears. Whenever I orgasm the tip of my penis would sting real bad at the exact moment of ejaculation. At this point I finally saw a doctor. The stinging at the tip of the penis sounded like prostatitis to him, and I was given 2 weeks of cipro. The antibiotics made my IBS 5 times worse, leading to insane bloating, pressure, constipation, and somewhere during those 2 weeks I had an anal fissure. While the fissure healed naturally, a permanent pain remained. I couldn't sit down for longer than 30 minutes without experiencing pain. Standing for longer than 30 minutes was also difficult. The longer i stood, the more back pain I experienced. I have aching in the scrotum. It became more difficult to relax my muscles to have a bowel movement. It got to the point where I'd have to get in a squatting position in order to have a bowel movement, and even then the stool would break off early near the end, leaving part of it in the rectum. My pain feels like it originates directly at the back of the sphincter/rectum, and if I try to contract my sphincter muscle (which is difficult) the little bit of contraction I do it feels like something sensitive at the back of the sphincter is getting squeezed.

Over these 5 years my sex drive and sensation in the penis has declined gradually. It's not numbness though. It's just that when I touch or stimulate that area not nearly as many pleasure signals are being received. And the weirdest part? I have developed serious premature ejaculation issues. It only takes 40-60 seconds to ejaculate, which seems completely counterintuitive. If sex is much less pleasurable, it should take longer to orgasm, not shorter. For a period of time I used to have rectal pain at the moment of orgasm which extended down the penis. Now after orgasm I'll notice a heavy ache in the perineum for 4-5 hours.

Having considered all of these symptoms, when I came across Levator Ani Syndrome and read through, it almost matched me entirely. There were even small symptoms that matched. For instance, when i'm about to urinate, i usually struggle for 5-10 seconds to relax the urethral sphincter and there's a lot of discomfort in *starting* the urination process, though during urination there is no burning or unusual symptoms. I also feel some brief relief whenever I pass gas, which has also been noted with LAS. Another odd note is I often have trouble trying to pass gas. Either the muscles somewhere are too tight, or there are serious coordination issues in my pelvis, as expelling gas should be simple.

If you made it all the way to the end of this post, I'm curious. Do those with LAS have similar symptoms to me? I feel like I would be a prime candidate for botoxing the levator muscles since I have such trouble emptying my bowels.

[kalecolbe12]

I am curious if you have go e to a pelvic floor therapist which is the first place you should have been sent to for evaluation....I have Levator Ani and gone from emergency room pain to managing quite well to some weeks completely normal again....I have seen a pelvic pt once a week for 5 months and since this condition takes a long time to reverse/manage it takes a few modalities...she sees quite a few men and helps them immensely.She also will suggest Botox for some people I guess it does sound like you'd be a good candidate to try it .....on average it takes about three times to have sustained difference but it may make a big difference the first time ...it's usually 200 mg put into the various areas in pelvic floor but that's why the pelvic floor therapist is good to see because she will tell the doctor doing the botox which areas to put the medicine.i have also found muscle relaxers help and I have rectal Valium suppository if I need it.you may also want to get the book a headache in the pelvis because I've been following that protocol and everything they say to do is very helpful also stretching exercises meditation relaxation and also internal and external trigger point therapy... I also have a wand where I can do my own trigger points internally now.... I know it's a lot of info but hopefully you can at least get a pelvic floor physical therapist and perhaps Botox to try and get that book my friend... it's at the library usually

[canuck1800 in reply to kalecolbe12]

I have seen two pelvic floor physiotherapists. The first one was a few years ago. I did about 7 or 8 sessions with her but saw no improvement. I've been going to another one for the past month but haven't seen much improvement either. I asked my second PT if I might have LAS but she just said that my puborectalis muscle is tight and that it's not LAS.

Early on when I had this pain I used to be able to take a sitz bath and i'd feel my pelvic floor drop and open up a bit, and I'd regain my sex drive for the short duration that the pelvic floor dropped. But now if I take a sitz bath nothing happens. I don't know if the muscles are already relaxed and it's a nerve problem now, or if they are permanently tight and I can no longer relax them.

I have read that biofeedback is very useful in patients with LAS but all of the pelvic clinics I google in Toronto don't offer biofeedback. Maybe it's only available in the US?

[kalecolbe12 in reply to canuck1800]

My experience is biofeedback doesn't help and remember it's taken me 23 sessions of physical therapy to get much better plus I am doing my own trigger points in between it takes a long time you have to read headache in the pelvis it explains a lot...

[Skye22]

My symptoms pretty much match yours however I am female. My medical history is way to long to post so I will try to be brief.

I have a recent diagnosis of levator-ani syndrome , SYMPTOMS: extreme spasms from vagina to rectum going all the way up colon and pain radiating down my thighs. Pelvic floor will spasm and "lock" can last days in endless pain , causes bowel and bladder dysfunction especially more bowel. I have no feeling in rectum and little to no muscle sensation. most days cannot sit on bottom due to feeling of constant pressure and pain.

I now have to do daily irrigation and with apologies as not pleasant have to perform manual extraction which is very distressing. I attended hospital for 4yrs of endless tests and due to previous surgeries (13) have adhesions on bowel, bladder, pelvis and abdomen.

I have been attending a female specialist bladder and bowel physiotherapist who can locate the trigger points in vagina and applies pressure to try to reduce spasms. It doesn't eradicate pain but have a definite lessening in intensity for a few days. Hallelujah!!! I can tentatively sit on my doughnut cushion for short periods!!

I really don't think I could cope without the support of my physio she goes above and beyond to help me MANAGE my condition. Emphasis on manage as due to complications my conditions are life long. It has called for a change in how I view my conditions and to be more realistic on the benefits of meds and treatments. I now no longer focus on what i can't do physically rather how can I adapt the "things "I like. Eg: no longer 2hr lunches instead go for coffee and cake and take my doughnut cushion everywhere I go!!

I was feeling lost and helpless in a sea of pain but now ride out the bad flare ups and celebrate with retail therapy or going out with my friends and family!!!

I have now had 2rounds of botox into pubirectalis muscle and for me a definite reduction in intensity of pain lasting a couple of months. It is your consultant who locates the trigger points to put injections and the amount of botox is different for each individual as no two people have the exact same site.

It is a very difficult condition to Medicate with painkillers and anti-spasmodics and treatments. I have a very good medical team who support me and provide a very good care plan.

Recommend you trying to see a specialist physio as they can provide a diagnosis and organize specialists for you to attend.

Apologies for the long post and I wish you god health and stay strong!!! Would be good if you could let me know how you get on.

[svaillantkenn]

Please look up the website Freedom from Pelvic pain. The exercises included in the program might really help you with your muscular issues.

[DonnaldIW]

You need to look into oxalates. Cipro destroys oxalate degrading bacteria. Citrate might help you.