Levator ani syndrome

So sorry that your relief mechanisms are changing…
Two years ago I just said that is enough and said I didn’t care, I am seeing any snd every doc I could to work this through. I have been seeing a fabulous pelvic therapist after not so fabulous ones. Urethra issues, bladder ones, rectal ones. Plus the pain. Dilators vag and rectal. Forget what it’s called, but learning how to pee with pads and a monitor. My urologist rx’d some muscle relaxers. Also had burser sac swelling in internal hip groin area, shots every 6 weeks to reduce swelling. Orthopedic doc.
My spine is doing bad, doing test injections for nerve ablation. That helped the areas worked in, and so we worked further down the spine.
Finally an injection in the coccyx bone. Heaven. Didn’t last, and can’t do ablation in that area. Just had steroids in nerves outside coccyx area, starting to help. Again, no ablation there, but can try stronger steroids in coccyx next time.
Of course I use on and off tens unit, which helps relax a little.
Another wonderful temporary thing to redirect brain, in a gel, is Arnica gel 98%. Put on lower spine, across upper buttocks. Amazon. I buy the tub. Really helps other aches, too.

So, after all that, my main cause for this horrible pain, seems to be my messed up spine (never would have connected) and pelvic tension connected to it.

With this very long journey, I have improved and are basically working on the spine. And forever pt.

May something in this post give you additional ideas for finding relief 🤞

@ch47 can you use the Arnica gel around the anal/glute, perineal area?

@anigeturbun my physical therapist told me they don’t use TENs because studies say it causes cancer but I’ve seen multiple sites that say they’re still using it. I want to try it. I was diagnosed first with Proctalgia fujax but my anal pain was constant, 24/7, every day. Went to another specialist who said I had Levitor Ani but all that is is a fancier name for Proctalgia. I still didn’t have the symptoms of Levitor. I diagnosed myself as having pudendal neuralgia or piriformis syndrome. 6 years later, still in daily severe pain. I live in Mississippi and I swear the specialists don’t know anything about this stuff so I haven’t found help yet. I was told to go to Mayo Clinic. Cold packs, heating pad and sitz baths offer only temporary relief. I had a pudendal nerve block 3 years ago and the doctor botched it so now I have nerve damage in the perineal area. On gabapentin and cymbalta for a couple years. It helped in the beginning with my doctor increasing the gaba up to 2800mg but both meds have stopped working. I’m wearing off both now and it’s hard. I’m doing a slow taper. I’m just tired of paying for and taking meds that don’t work.

@sapphiregirl
Maybe do a little research online and see if anything comes up up about the side effects of tens. I’ve not heard that, an it has been recommended by my professionals.
Levator ani or whatever it’s called, with symptoms, seems to be uncommon.
First doc to diagnose said 5 years to go away. ???
Better but has been longer than that. I will have to look up the initial med that I took from pain management doc. Do you see a pain management doctor? Maybe helpful, if not.
Sorry about your doctors and the lack of help. I just kept looking until I found ones that would work with me.
Tough to wean off those meds…
I posted earlier about using 5 mg diazepam in the rectum. Very helpful. Especially at night.

@ch47 I saw a pain management specialist 3 years ago. After guessing around and giving me a ganglion impar nerve block, which did nothing, he gave me a pudendal nerve block cos I believed I had pudendal neuralgia, none of my specialists diagnosed, I diagnosed myself. The doctor botched the nerve block causing nerve damage making me much worse.
I asked my gastro doctor for Valium suppositories but he said he doesn’t prescribe them. Who would for me?

@sapphiregirl
A urogynecologist. I have taken them one or two times a week for severe pain and they work. I have them made at a compounding pharmacy and sent to my home. Best wishes.

@l73 thank you! I’ll do that. I have a compounding pharmacy not far from me and have used them before

@l73 thank you! I’ll do that. I have a compounding pharmacy not far from me and have used them before