Health Organization for Pudendal Education

Welcome Jeremy,
Thank you for posting your experience (sorry you had such Devil Pain!), it really helps the others to hear what works or even what does not. Wishing lower pain and take care.
Janet

Welcome from me too Jeremy,
Dr Jenner has seen my bum too . I'm really glad that was a while ago as I too have a scar (not bruise) on my bum at the moment. Try and explain this one and not look like a complete fool! I actually ironed my Ars@!!
That was about 3 weeks ago. . . because of my stupid piriformis I have the middle and cluneal nerves stuck which makes my bum numb, just the skin. . . .anyway I have one of those steam irons that can iron stuff while it's hanging up, like curtains, so when I noticed a couple of creases on the back of my loose fitting top, I thought I would give it a quick blast in situ . . . . so, because I have no skin sensation from p muscle downwards I obviously got too close. I didn't flinch, although I had the idea that I'd got near but had no idea that I had burned myself. Honestly, it blistered, went dark red, the skin scabbed and flaked and 3 weeks later I have a lovely scar. So I wouldn't worry about the bruise.
Dr Jenner is very nice isn't he. I've also had botox in the piriformis muscle, just the right hand side as that is my worst.
My shot was done by Dr Greenslade in Bristol. Only one spot though so that is interesting that you had a few, makes sense too as that is quite a long muscle.
I wasn't under either (so jealous) I can not tell you how painful it was as I would have to swear a lot and this is before the watershed. Dr G remarked that I 'had a fairly strong response' to the injection. I was almost airborne.
My injection gave me good 'piriformis band' pain relief for about 3 months and I could still feel a benefit after that, tho' it did taper. I had the 'not so bad side' as a 'control experiment' so totally knew that when the better side was playing up, the other side would have been '*%@*#¬!! and it wasn't
Actually even now the other side tends to kick off first sometimes. I hope this will fully do the trick for you.
I take it that you don't have any pelvic nerve issues due to the piriformis pain? (hope not)
Did you see Dr Jenner privately? I think he does NHS on a Wednesday and said he does tons of SI joint injections which is what he has also suggested for me to try and rule that problem in or out. Unfortunately I live in the North East and the PCT have refused funding for any referral and my BUPA went when I couldn't work anymore.
Would love to know how you fare.Thanks for the input.
Take care,
Helen

Hi All,

So I thought I'd update you on where I am post piriformis injection which I had 3 days ago...

I rested all weekend and felt OKish this morning, so I thought I'd try some "normal activity". I drove the kids to school and then took the dog for a short 20 minute walk on the way back.....doh! Big spasm, 7/10. Took 2 extra Lyrica and 1 Tramadol, had hot bath, got out the ice, paced about, lay down, paced about, lay down, you all know the score...can't help thinking "aaaaarghhh!....what have I done, why did I do it when it's worse than when I entered the hospital"...Pain down to 3/10, but doing anything is problematic. Luckily I don't have much to do today, but all the pills are making me properly spaced out, so it could be worse.

So how about you others who had botox in the piriformis, steroid in the sacrum or any of these kinds of things? What was your week/month like following the injection? Go on, someone cheer me up with a recovery story.

All the best,

Jeremy

PS, Helen, to answer your questions, Yes, I saw Dr Jenner privately, but do not have pelvic nerve issues. Just piriformis.

Jeremy, my piriformis problems went away after PNE surgery but then I started jogging and going on the treadmill because I was feeling so well. PNE sitting pain is essentially gone but now the piriformis (or something) on the previously "good" side is causing sciatica. I had some steroid/prolotherapy injections into the SI joints this summer. The pain from the injections only lasted about 24 hours -- never got any permanent relief from them. Sorry, I don't have a great success story to tell you -- I just hope the pain from your injections wears off soon.

Hoping that the reaction to the botox has calmed down a bit (preferably totally calmed) Jeremy. Let us know how you are.
Take care
Helen

Hi Everyone,

I was reading through the forum and I thought I would share my experience as well. Mine is a little different but shares similarities... I'm 28 now but mine started when I was 21. It basically came out of no where...At first I thought I caught an STD or something but I went through all the tests, all the doc’s, antibiotics, and really every invasive test you can imagine all turning up negative. I saw over 10 urologists, 2 infectious disease docs, 2 orthopedic docs, holistic docs, etc… spent thousands on trying to find a solution. No one would come up with anything except prostatitis. Kind of odd to have that at 21 and what does it really mean anyway? This continues 7 years later with pain ranging all over the scale and debilitating at times. The thing is, over the past 6 years the pain was always on a decline. I learned to live with the daily variations of bladder feeling, urethra tenderness etc... Some days would be good, and some days would not but I was able to live a normal life for the most part. Then this past August a new symptom came about. It all sort of happened at once, I was sick with a sinus infection that was going on 2 weeks because I thought it was a normal cold etc... When I was taking decongestants and anti-biotics I developed these new symptoms. I felt like Redz said a crawling feeling the urethra and just burning in the bladder. I went back to another urologist and had another scope done. Negative. I was getting urethral spasming at night when laying in bed, ejaculations were now painful. I started going to physical therapy and having pelvic floor trigger point therapy done.( they say i'm almost a level 0 inside). I continue now 4 months later struggling but I have been going insane trying every non drug approach. I even created a web site to try and document everything and find help. www.Pelvicpainblog.com Here's what I think... I believe that no doubt, there is nerve entrapment/irritation. But I think this is because of bio-mechanics. I think postural we all have an issue that has created this imbalance. Daily I have been spending 2-3 hours stretching/strengthening/trigger point release, relaxing etc... trying to unwind this mess. I think that the pelvis is shifter forward and this is putting pressure on all these muscles/nerves. I can make the pain worse with trigger point therapy, specifically with a tennis ball. The pudendal nerve runs between coccygeus muscle and piriformis muscle and exits the pelvis through the greater sciatic foramen below the piriformis. So if you apply pressure on the piriformis by rolling on a tennis ball it could impinge on the pudendal nerve replicating the pain. My theory is to address the cause, not the symptoms so that's why I've taken this route. I have talked to one person in Brooklyn who has actually gotten through this after suffering for almost 3 years. He went down most of the same paths people talk about here and is now symptom free by stretching/strengthening and really targeting the glutes/hips.

Hi Searay, Welcome
Yes that crawling feeling, weird Talk about ants in pants. Nerves can be very tricky things.
I do hope that your programme works. I also think that a lot of it is to do with how the problem began. If it has crept up. getting worse gradually I do think that there is great hope that it may GO in the same fashion, doing just as you are doing. Lets hope so.
If thinks did spark up and got a bit too much to deal with I would always recommend some medication. take a look at the home pages for meds that can help neuro pain. I'm not a huge fan of taking tablets but when things kick off it can help calm it down which is good obviously but the main benefit is that it can stop the problem spiralling. The pelvic is a complicated interconnected area so it is sensible to get any problems under control.
Good luck
Helen

Thanks Helen, I will take a look at that too. I want to include medication as well and just haven't for some reason. I know the local Y has a mediation-yoga class once a week that I was going to go to. One thing I forgot to mention is that I set up a rolfing appointment next week. I heard many good things and I'm willing to take a shot and see if it helps with my routine. I'll report back.

Searay, good luck with your stretching program. If you can sort this out without any invasive procedures that would be great. I know if my own case stretching pushed me over the edge but given the fact that your pelvic floor tension is a 0 that's a good sign. If you are in the NYC area you might want to at least have an evaluation by Amy Stein.

Violet