Help PLease

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
sunshine028
Posts: 30
Joined: Thu Oct 04, 2012 7:10 pm

Re: Help PLease

Post by sunshine028 »

ok stupid question, i keeps saying i have pressure in my anal sphincter its more tightness, its tight 24/7 what does that mean? is that the nerve or something else. I just dont know if i should start with PT first then go to Houston to see what they say. to many questions. Its the tightness thats making me crazy. my kids just look at me like they want to help me but cant and the more they do the more i cry. Wishing that i was normal for them again. So many good years w/o this. Just wish i had that back.
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Help PLease

Post by janetm2 »

Sorry I am not sure the cause of the tightness but PT may know and probably can loosen it up while you wait to get into Houston. I think most doctors have a longer wait then PT. You can check the USA section of the forum which has info on the doctors at Houston and states what their protocol is and some folks who have been there. Hang in there for your children and try to focus on the steps to getting your treatment I know it is difficult and we are here to support you and understand. You can do it!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Help PLease

Post by helenlegs 11 »

Well a feeling of tightness could be from a tight muscle and the anal sphincter is a muscle of course, so that could make total sense sunshine.
I would definitely say that PT is a good option from that description. It is the rectal branch of the pudendal nerve that serves that area.
A good PN aware physiotherapist will be able to help you with this I'm sure. They will at least be able to ascertain if any muscle there is in spasm or tighter than normal. (You beat me to it again Janet ;) )
Hope you can get some answers soon.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
sunshine028
Posts: 30
Joined: Thu Oct 04, 2012 7:10 pm

Re: Help PLease

Post by sunshine028 »

yeah what im thinking is that the pain starts first in the sphincter and then my sphincter flips out and tightens up. Just a thought. Who knows what it is. The pain isnt as bad as the tight feeling i have. or the feeling of it pushing out. Gonna call PT tomorrow to see when i can get in and how much it is. Thanks everyone for the support and the kind words.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Help PLease

Post by HerMajesty »

You should probably also see a proctologist too, before assuming this is the pudendal nerve and seeking help from pudendal surgeons. The symptoms sound like you might have to rule out rectal prolapse and rectocele among other things.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
sunshine028
Posts: 30
Joined: Thu Oct 04, 2012 7:10 pm

Re: Help PLease

Post by sunshine028 »

yeah i have been to them when got this the second time, i went to NYC and they thought i had lavator ani but had a ton of tests done and nothing, believe me i wish it was that but its always the same everytime it comes back. Same feeling and everything. I have been through the mill of Doctors. The one Proctologist said it was in my head and there was nothing wrong with me as i cried my eyes out to him. And the last time i had an episode i had mentioned PN and he laughed at me.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Help PLease

Post by Violet M »

Wow, sorry about that doc being so clueless. I strongly doubt it's all in your head and I agree with the other gals -- a pelvic floor/pudendal neuralgia aware physical therapist might be helpful. Have you had any imaging studies such as MRI's to rule out any obvious problems in the pelvis? If you live near NYC you could go to Dr. Hollis Potter for the MRI.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
sunshine028
Posts: 30
Joined: Thu Oct 04, 2012 7:10 pm

Re: Help PLease

Post by sunshine028 »

I have had every test under the sun this has been going on since i was 21 and i am now 38 again on and off. total years of actual pain all together would be about 4 years. each time it lasted diffrent lengths of time. first time 11 months , 2nd 2 years, and the last time 8 months and one other time only about 1 month. I have to save money to get this done with Dr. Hollis. Im applying for medicaid now. I wonder since mine comes and goes like that how much damage to the nerve im have? So last night i took a xanax and percoset so i could sleep, it was the first good night sleep i had in so long. I took xanax this morning also and the tight feeling isnt has bad but the anal sensitivity is still there and a little tightness.I had a little burning up along left side of my tailbone to sacram. I had tailbone shots before so its not that.
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Violet M
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Re: Help PLease

Post by Violet M »

sunshine028 wrote: I wonder since mine comes and goes like that how much damage to the nerve im have?
That is always a concern but if you are careful you can minimize the damage somewhat -- by not sitting or bending/stretching -- and avoid constipation for sure.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Joyh
Posts: 35
Joined: Thu Sep 06, 2012 11:31 pm

Re: Help PLease

Post by Joyh »

Hi Sunshine

You mentioned PT hurting further up the thread and scaring you off.

I`ve had PT from an osteopath over the years for my back and now for PN and to begin with, I`ve always found that for 2 days after (at least) that it hurts.
It sometimes hurts more than the orginal symptoms you went with- I always think that`s because the PT has worked the muscles/nerves and `upset` them, for want of a better word.
After about 2 days, I`ve noticed that one or all of my symptoms feel a bit better. I usually notice by the absence of some pain in that particular muscle or nerve.
Or I did with my back, I`m still waiting to see if this therapy helps my PN.
At the moment, I`m seeing an osteopath again, I`m not sure if this is the type of therapy you need - the other gals on here are more aware of these problems than I am.
Best of luck in getting the help you need, and here`s wishing you a pain free life to enjoy your children.
Joy
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