sphincter tightness

[sunshine028]

So i have been taking the Xanax its helped a little with the tightness in anal sphincter but i alway have some kind of discomfort. I sometimes wonder if PN is what i have. No one on here talkes about sphincter tightness or having it sitting, standing lying down. Then it magically disappears for years only to come back. Are there other factors that could be doing this to me? I feel like my life is falling apart. I start Pt next week. Im so scared im gonna be told theres nothing wrong with me, just like ive heard for 17 years on and off. I was so normal about 2 months ago, no pain no tightness, Had a normal life once again. But here i am living like this 17years with still no answers. Could sphincter muscle just tighten up or is it the nerve thats making me feel that way?

[janetm2]

So sorry this is such a challenge to figure out what is wrong. I do hope you have a good PT experience and they can at least loosen the tightness and if they are from our list not say it is nothing! The person who comes to my mind with the closest symptom to you may be reckless you could PM him and maybe compare symptoms and ask what has helped him. I had 20+ years of chronic foot pain and honestly that was getting old with the limitations and working my life around the pain and then I got PNE. Now I can say I am beyond words and how much harder this is to deal with of course it is the two together. So I am back to trying to find workarounds for what I cannot do but very lucky to have found the diagnosis and surgery to avoid the worse pain I was heading towards. You can find a way forward just hang in there and give the PT a try. Let us know how you get on. I may have had some sphincter issues as my pain felt like it started anally and rectal PT has helped me. I am working and was able to take a small vacation and travel again to see my family so there is hope. Take care.
Janet

[sunshine028]

Thanks Janet, I did write him when i first got on because i saw a post of his. Havent got a reply yet. The fear is that i have been told so many times that nothing is wrong that i just expect it now. My heart hurts and i just cant get past this point. I try a little everyday to go do something and get out and try not to think about it, but it is very hard when its with me all day and all night. I used to get up get ready shower do my hair, put my make up on and smile and laugh everyday. Now once again im stuck in a rut It takes a lot for me to get up and honestly every day i cant wait for bed time because i know that i will sleep at least a few hours and not feel this. Only to be awaken with tightness. I know i shouldnt feel sorry for myself like this, there are so many ppl on here who are so much worse than I am. I cry reading the stories. I laugh very little now, if at all. If it werent for my babies i would just give up. My 12 year old just looks at me and he says mommy please dont cry anymore, it will be ok. And hes not that sensitive of a kid. lol. My 2 year old wipes my tears, and my 7 year old tells me its gonna be ok, my 8 year old tells me he wants me to smile again. Even my ex husband tells me to hang in there, he lived it with me since the first time i had this. What a roller coaster of a ride i have had. I get teased with a normal life for years only to be let down. I will update about my visit to PT.

[janetm2]

An idea that may help is if you could tell us your general location ( state if in USA) and maybe someone can link you up with a doctor to get you some nerve medicine. There are some doctors that are not the PN surgeons but can at least help until you get diagnosed. I know it must be both a blessing and a struggle having children. I dated someone with children and leaving them was tougher than him and there were times I felt bad that my foot pain got in the way. I decided not to have children because I could barely take care of myself. However it is something I miss and hope you will soon get enough relief to start enjoying them and they do not have to see you in such pain. I have had two flares this weekend just trying to get by with the basics and then I finally was better enough to go to the mall today using my wheelchair with a custom Roho cushion. There is hope you just need to get past this initial statewith someone that knows about PN in the medical field.

[sunshine028]

i feel bad even complaing about my situation, i can walk its all in my sphincter and mine tends to go away over time. Im sorry you had a few bad days. I live in NY i dont have insurance, im paying out of pocket for everything. mine is so localized. i just dont think pn is my issue. I was just reading what you wrote me to my fiance and i start crying. i can only pray this ends soon. Thanks for the words of encouragment, I hope i have some answers soon.

[Violet M]

Could sphincter muscle just tighten up or is it the nerve thats making me feel that way?

Can't say for sure but I know in my case the damaged nerve is what made the muscles tighten up. You might be interested in checking out the pudendal nerve anatomy section on page 90 of this link: http://www.webcitation.org/6BOo1dW5X It discusses the anatomy of the rectal pudendal nerve and innervation of the anal sphincter.

For some people pudendal neuralgia symptoms come and go. I'm not sure anyone knows why other than maybe there is some activity that triggers it. There are many people who get better and move on with their lives so I hope physical therapy will help you and that you can move on from this.

Best,

Violet

[janetm2]

I noticed you had asked about a cushion and here is a cheap version:
For a cushion you can get a gardening kneeling cushion and then make a pattern by placing a paper under two hardback books with binding towards the center and 3-4 inches apart. Sit on them and adjust until it feels good (you should be placing your sit bones on the edge of the bindings of the books to take the pressure off the other areas). Then cut a u with the sides per the pattern and sit with the opening in front (or maybe even try it to the back since the sphincter is your issue). If you rectal pain you may need a clearance all the through so a trough vice u and the you have two pieces and need to set them apart but keep the setting and I used velcro. Of course this does not have overall strength and works for hard surfaces so soft I put a board underneath.
Whether you have this or not it is a tough situation, even with it coming and going. We all have good or bad and worse days but hoping yours is not PN just a tightness that needs to loosen up. I know I should not complain either as I am in a better space than others but the folks here are always ready to support and understand which helps a lot. It is not all bad for me I have some money (Since I did not have children all my money can go to healthcare), insurance because I still have my job, work/boss support to work when I can and take off when I cannot. My husband is 100% behind me getting better and driving me to all my appointments. My family did everything to accommodate me for my visit and my cousin said to go to her hotel for dinner so we could go out to the lounge afterwards and I could lay on the sofa! LOL what a site but no one cared about anything be me being able to enjoy the time with them and not sit with flaring up the nerve. I am still in recovery so maybe in a year or two I will be one of those cured and on my way!
I will see if I can find a NY doctor, I remember an NJ mention which may be nearer than NY depending on where you live (I come from Upstate NY originally and that is where I went to see family this year). Take Care.
Janet

[janetm2]

Doctor info so you can at least get some idea of if this is PN or at least get some medicine?

Dr. Jason Cohen is an interventional pain management specialist located in New Jersey. He combines medication, PT, interventional blocks, ultrasound therapy, and neuromodulation when indicated.
His offices are located in Hamilton and North Brunswick, NJ.
Phone: 609-890-4080

CT guided PN block in NYC (Manhattan) at Dr. Kenneth Chapman's office. found through Dr. Coady's office. His contact info is below:
Dr. Kenneth Chapman
Manhattan Office
860 5th Avenue
New York, NY 10065
212-724-7246

Dr. Deborah Coady (gyn in NYC)

NH has Dr Conway if you are in upper NY
Dr. Conway Contact Information
Dr. Mark Conway is an ob/gyn who is the head of the obstetrics and gynecology department at St. Joseph's Hospital in Nashua, New Hampshire. Dr. Conway has made multiple trips to Aix in Provence to learn the TIR surgical technique from Dr. Eric Bautrant and to learn Dr. Eric deBisschop's technique for EMG study of the pudendal nerve (pre-operatively and intra-operatively). He also offers the TG approach which he learned from Dr. Hibner. Dr. Conway has partnered with Dr. Quesada (an anesthesiologist) and Lynne Assad (a physical therapist) to offer comprehensive treatment of pudendal neuralgia -- offering conservative therapies, medication management, EMG studies, a surgical solution to treat pudendal nerve entrapment as well as comprehensive post-operative care.
OB / GYN Associates of Southern New Hampshire
30 Daniel Webster Highway, #30
Merrimack, NH 03054
Phone: 603-883-3365
Please note: Dr. Conway is not yet offering the TG approach -- he may do so in the future.

[Violet M]

Janet, looks like that is an outdated version on Dr. Conway. He does the TG approach now.

Dr. Zhou is also in NJ. I've heard he's excellent.

Dr. Linqiu Zhou is a physiatrist and interventional pain physician who offers treatment options of pudendal nerve blocks using fluoroscopic guidance as well as ganglion impar blocks, medication, and physical therapy for pudendal neuralgia patients.

Office:
730 N Broad St., Suite 205
Woodbury, NJ 08096
Phone: 856-202-5331
Fax: 856-202-5638

Website: ppa1.com/

I've also heard great things about Deborah Coady.

Violet

[janetm2]

Violet, Thanks for settimg the info straight and adding to it.
Janet