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 PNE OR TMS?

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lara Posted - 01/15/2012 : 09:42:01
HI,
Six months ago i had a hemorrhoidectomy and a sphincterotomy,since then i am having terrible deep rectal,vaginal and perineal pain,also sacral.
I have seen many drs,all of them diagnosed me with ani levator syndrome,had pts ,electrogalvanic stimulation ,nothing seemed to work,mri was normal, ct scan normal,my physical therapist told me that my left pelvic muscles were as har as a brick,which is were i feel the pain ,and also my left hip is misaligned.I saw a dr on dec 19th who diagnosed me with PNE,and i am on 900 mg of neurontin,is helping a lot.
Before this happened i was a 43 yr old woman,very athletic,very very proud of my appeareance,specially my rear(),very sexually active with my husband,and an outgoing person,nnow my pain keeps me all day laying on the sofa ,pain increases after sitting,and sex.Also noticed that stress increases pain,and being nervous or anxious.My hemorrhoidectomy was an emergency procedure,i was shocked one month ago,when we found out that the dr perfomed a sphincterotomy on me too! she never told me that ,before or after the surgery.I remember being taken in ambulance to the hospital cause my hemorroid prolapsed ,and was excrutiating painful.I hate that day,i hate it with all my heart,i was so embarassed with the paramedics,neighbors etc.
It is hard for me to accept that this is in my mind,but also accept that my pudendal nerve has been damaged is so devastating,what make sme think is TMS is the fact that i was so proud of that "zone" in my body,admired by men(i am sorry ,i want to be honest here),i i enjoyed being as active as i was.Yesterday i tried to have a "normal" day ,and was sitting for short periods of time,but pain at night was 7/10.
What steps do i need to take in order to find out if this is TMS or if this is real PNE? please help me ,i am desperate,i already quit my job,and things at home are quite different.
7   L A T E S T    R E P L I E S    (Newest First)
ajm222 Posted - 01/18/2012 : 07:15:53
i wouldn't stress too much about the sphincterotomy. with that particular procedure all they typically do is make a very tiny incision or cut in the sphincter muscle. they don't cut all the way through it, just a very small cut in order to simply prevent the muscle from going into spasms which can delay or prevent healing from something like a hemorrhoidectomy. so it was most likely done as an aid to assist healing from the hemorrhoidectomy. most of the time they reach the sphincter muscle through a tiny hole they open that typically heals with little or no evidence it was even there. so if you are worried about the sphincterotomy doing any major cosmetic damage, that's not really the case. i know the hemorrhoidectomy might be a different story but even those heal and look normal over time and the procedure is almost entirely internal anyway so it shouldn't have an impact on your external appearance in that area. i can certainly understand being upset about a procedure that was done without your consent but sometimes when an emergency procedure is performed they occassionally have to do other procedures as well in order to increase the likelihood you will get better and heal properly. if you imagine they are doing it for your own good it might be easier to handle that part of it. also, if you aren't experiencing any incontinence then you have nothing to really worry about in terms of the sphincterotomy. your muscle has probably already healed and is basically back to normal. that's a really sensitive area of the body and traumatic surgeries can have a lasting impact on the nerves there. i have a similar issue but also believe it's tms as several doctors have said everything is physically fine. and from what i can tell the whole prudendal nerve thing is a bunch of bologna.
lara Posted - 01/15/2012 : 18:42:09

Tennistom,
I aprecciate so much your info,i will try to go dr Seagal,it looks intersting on the web page.
Thanks a lot.
lara Posted - 01/15/2012 : 18:40:30
quote:
Originally posted by glowgirl

dear Lara,
i have a similar story in some ways.
i have a wonderful life (though lots of drama in the past).
i slipped and fell hard 2 years ago and my pelvis has never "evened out" since.
no matter what i tried, the symptoms moved from place to place.

then last sept. i got an anal fissure that hasn't healed yet.
while not as dramatic as your story, the result has been that - especially since last sept. it has been very hard to sit and scary to have sex. and i am someone who loves to! every day i am in pain and cannot figure out why my body won't heal? i suspect i have had other fissures before...ever since i fell. i think they started when some doctor gave me drugs that gave me a bad case of the runs. this happened a few times with various meds. so system that once worked just fine got confused over time.

so this has been quite a loss... and quite a sudden one at that. i don't know if most people can understand the pain or the depression this has brought me to see my body change so much from such incidents... though i respect that others have been through their own serious challenges, like you have.

i would like to apply - and have been applying - what i learn. but i cannot measure the results quite yet. still i take sarno's message deeply to heart. stress and repressed emotions make things worse, and, healing is possible from within me... especially when it comes from "this" area. when i notice i am tensing up i chill and that helps.




It is so sad to read your story,i never imagned that a such pain can cause so much sadness in a human .My whole body hurts,my childhood was tough,very very tough,but as an adult i found happiness,and was in peace .I will do whatever it takes to get back to normal.Thank you for sharing your story with me.




tennis tom Posted - 01/15/2012 : 18:15:32
Maryland



Barbara Kline
Barbara A. Kline, LCSW-C (Therapist)
Barbara Kline is a licensed, certified, clinical social worker (LCSW-C) in the state of Maryland. She has a keen interest in mind/body medicine and specializes in working with clients suffering from chronic (non-cancerous) pain syndromes including back, neck, & shoulder pain; fibromyalgia, and other musculoskeletal disorders. She says "Having had a severe case of TMS myself, I'm pretty much an expert as I researched everything possible on the subject and was cured using Dr. Sarno's method. I also have had extensive coursework in the psychology of TMS. One course was with Dan Siegle at a Psychotherapy Networker Symposium in Washington D.C. I refer clients to Dr. Andrea Leonard-Segal for a diagnosis since I am not a medical doctor. She is located in Washington D.C. and can refer clients to me for psychotherapy." (Source)

Independent Practices at Prospect Cottage
Psychotherapist
113 S Prospect Street
Hagerstown, MD 21740
(301) 745-1900
(301) 745-4110
Barbara@prospectcottagetherapies.com
Survey Response / Q&A Answers / TMS Wiki Profile / Website / When Stress Hurts / Article about Barbara Kline

Insurance Accepted: Carefirst BC/BS, Aetna, InforMed, Tricare, Johns Hopkins, APS, CorpHealth, MHN, MHNet, PMHM, Quest, ComPsych, Medicare.


Andrea Leonard-Segal, MD (Physician)
Dr Leonard-Segal graduated with honors from the George Washington University Medical School and is Board Certified in Internal Medicine and Rheumatology. She has practiced medicine since 1982 and has devoted the past five years to helping patients overcome back and neck pain, fibromyalgia, chronic tendon complaints and similar conditions. She emphasizes the mind-body connection and is one of a handful of physicians nationally who uses an approach that closely parallels the pioneering work of John E. Sarno, MD at the New York University Medical Center and the Rusk Institute. She brings her interest and expertise in mind-body medicine to the Center for Integrative Medicine. (Source)

Baltimore, Maryland
202 833-5055
Location listed as Maryland/Washington, D.C. and Baltimore-Washington.
Contributed the article, "A Rheumatologist's Experience with Psychosomatic Disorders," in The Divided Mind, by Dr. John Sarno. 2006


Harold Goodman , DO (Physician)
8609 Second Ave., Suite 405-B
Silver Spring, Maryland 20910
301.565.2494
e-mail: hrpharold (at) gmail (dot) com
Survey Response
Dr. Goodman's TMS Story
glowgirl Posted - 01/15/2012 : 17:50:51
dear Lara,
i have a similar story in some ways.
i have a wonderful life (though lots of drama in the past).
i slipped and fell hard 2 years ago and my pelvis has never "evened out" since.
no matter what i tried, the symptoms moved from place to place.

then last sept. i got an anal fissure that hasn't healed yet.
while not as dramatic as your story, the result has been that - especially since last sept. it has been very hard to sit and scary to have sex. and i am someone who loves to! every day i am in pain and cannot figure out why my body won't heal? i suspect i have had other fissures before...ever since i fell. i think they started when some doctor gave me drugs that gave me a bad case of the runs. this happened a few times with various meds. so system that once worked just fine got confused over time.

so this has been quite a loss... and quite a sudden one at that. i don't know if most people can understand the pain or the depression this has brought me to see my body change so much from such incidents... though i respect that others have been through their own serious challenges, like you have.

i would like to apply - and have been applying - what i learn. but i cannot measure the results quite yet. still i take sarno's message deeply to heart. stress and repressed emotions make things worse, and, healing is possible from within me... especially when it comes from "this" area. when i notice i am tensing up i chill and that helps.






lara Posted - 01/15/2012 : 17:23:19
Bugbear,
Thank you so much for responding,You are right ,i feel so ANGRY and the same time i feel humiliated.
My whole life was wonderful,we had a happy marriage,perfect kids,perfect home,i always wondered what have i done to deserve that happiness? and then boom! the horrible day when my hemorroid prolapsed ,and was taken to the hospital in an ambulance,but waht makes even more angry is the fact that that dr perfomed on me a unnecessary surgery,on my perfect sphincter and she never told us about it,now sitting hurts,can't even think about exercising ,sex is ughh painful afterwards,i have been searching the web i even joined this forum or group called hope for patients with pudendale neuralgia and entrapment,i can't live like this ,inactive,i am so depressed this is not me ,i don't belong to this body .
I don't know where to seek for a TMS dr? i live in Maryland.
Bugbear Posted - 01/15/2012 : 17:01:10
Hi Lara, I wanted to reply to your post even though I haven't experienced your symptoms. It's sounds like you were traumatised by the emergency nature of your condition and unexpected operation. Then it seems you were violated in that you had a second procedure performed without your knowledge. Some of this pain you are feeling, could it not be the result of the trauma and the anger at your medical carers? Also anger about losing something precious to you, namely your unmarred, intact body and your very good sexual relationship with your partner? That's a lot for a human body to cope with but it doesn't mean you have this PNE thing. Rather than searching for a physical explanation, think about what has happened to you and how you feel about it. I haven't gone through it myself yet but many people suffering from all different ailments are helped by the Structured Educational Program on the TMS wiki.

If you really need medical reassuance before you move on, can you not see a TMS doctor?

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