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heart a tact

USA
21 Posts

Posted - 01/23/2010 :  18:01:18  Show Profile  Reply with Quote
hi all

i have been diagnosed with 'chronic epididymitis', an 'inflammatory issue' in my scrotum/testicle. after visiting 3 general practitioners and 3 urologists, trying 3 different antibiotics, 12 sessions of weekly acupuncture, 4 ultrasounds, and a CT scan, my doctors have yet to identify any structural cause. they have observed the structural SYMPTOM, which is minor/moderate swelling-- but there is no bacteria, and no apparent structural cause. this has gone on for 10 months now (began in spring 2009)

the pain, however, has been severe, debilitating. my life, as most of you can likely understand, screeched to a terrible halt. enough said about that.

while scouring the internet i located a blog at http://www.epididymitis-hell.blogspot.com, which had not been updated since 2006. I left a comment inquiring as to whether the author had found relief yet, not sure whether i could really expect an answer.

lo and behold, within a few days the author HAD replied, advising me to read the works of Dr. Sarno, because it was his savlation. I ordered the book and began reading TMSwiki immediately.


I began treating myself for TMS 9 days ago. I have been reading "The Mindbody Prescription" just about daily, journaling just as much, and lurking around this forum as well. I have been having some issues and I am curious to hear what experienced TMS'ers have to say.

--I can sometimes feel the pain subside when I think about my repressed feelings. I am a classic TMS-type-person. Impatient with others, highly disciplined, 'go-getter', idealist. At the moment, however, it often feels like the rage and sadness within me is so immense that I can't imagine how I would address it. has anybody felt this way?

--Because my condition is not the most common TMS symptom, it's difficult to really throw myself at the diagnosis. Has anyone here experienced TMS-induced epididymitis?

I know I am a likely candidate for TMS, because I have experienced back pain in the past, and battle with tmj-style teeth grinding when I fall asleep, especially when stressed out.

My doctor has recommended that I begin physical therapy for pelvic floor issues-- i see that there is a divided opinion on PT and 'A Headache in the Pelvis'. I ordered a copy of that book, but have yet to read it since some TMS literature mentions it specifically as something to avoid. Anyone have advice on that?

I have been trying to re-integrate myself with the world, going out + getting up more when I used to just stay at home... but it has seemingly caught up to me in the past couple days, with considerable pain. I try to remind myself that it's a result of the ANGER that going out and running errands stirs up in my unconscious, but the pain is not responding right now. What has it been like for you guys?

I think that going to physical therapy a few times a week will be good simply for getting me out of the house, confronting the repressed anger that i feel whenever riding the subway, walking, keeping appointments, etc.

also, I live in NYC. Do you think it is wort trying to see Dr. Sarno? I have read in some places that his consultations are not covered by most insurance. Is this true?

I don't want to bombard the community with questions, but you can tell how lost i am! I intend to update this thread frequently, as a sort of public journal, to complement the private journalling i do on paper.

I will know that I've completed my treatment when I can ride a bike again. Before the pain began, I rode 30-50 miles a week and enjoyed it a great deal. Most of my doctors seem to think that riding a bike is part of my problem's cause, but Dr. Sarno would probably argue otherwise. So for me, riding a bike is the ultimate measure of success.

I'm thinking psychological, having a little trouble, but committed to give this my all. I don't have anything to lose except that damn pain in my nuts!!

patils

72 Posts

Posted - 01/23/2010 :  22:13:22  Show Profile  Reply with Quote
Stree can create havoc in human body.
Besides this i suggest to read following books :

Hope and help for Your nerves by doctor : Weeks.
Mind Body prescription by Sarno
Mind body Balancing by Osho.
Somatics by Hanna.

All this will give you picture of what is going on in your body.
Please dont expect miracle cure within a day here. It may take some time but you have hope and you can expect your recovery.
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skizzik

USA
783 Posts

Posted - 01/24/2010 :  06:06:28  Show Profile  Reply with Quote
What you describe is actually all too common a symptom here on the boards. Albiet, guys in general are embarrassed to post about it.

Anyways, I too had scrotal pain that caused me to go thru all the exams. You really don't know yourself till another guy (doctor fortunately) throws lube on your junk, and then rubs a plastic doohickey all over it (ultrasound) and your'e laying there helpless waiting for him to find the big "c" or something.

I was fortunate, that once cancer was ruled out, which I was told the second the tech was done, I simply gave the pain no more thought, and it went away pretty quick.

Enough about me though, read up on "kjarvis" here who ended up pain free and wrote this book:

http://www.lulu.com/content/hardcover-book/personal-underworld---a-journey-through-tms---hard-cover/2259150

It's very detailed about his symptoms and his recovery. His pain was of the symptoms you describe, and went thru the medical gauntlet you did too. The symptom switch to anxiety was another demon all together too, and the resultant recovery.

I don't know if he will be mad at me for posting this, but he put it out there:
http://tmshelp.com/forum/topic.asp?TOPIC_ID=2470

His phone# is there. Your'e darned right I called it, and he got back to me. Several conversations we had. He was my first introduction into "letting go". The ego vs yourself. Or as he likes to call "the imposter" vs. your "authentic self".

His recovery really kickstarted when he took up a "Jungian" based therapist.

good luck.
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skizzik

USA
783 Posts

Posted - 01/24/2010 :  06:16:34  Show Profile  Reply with Quote
quote:
Originally posted by heart a tact




-- I am a classic TMS-type-person. Impatient with others



me too.
quote:
Originally posted by heart a tact



--Because my condition is not the most common TMS symptom


we hear it here all the time.
quote:
Originally posted by heart a tact



I live in NYC. Do you think it is wort trying to see Dr. Sarno? I have read in some places that his consultations are not covered by most insurance. Is this true?



some have had half paid I think. I think the cost is 1000.00, maybe more now. I'm not sure if seeing him would help me anymore, in that I was desperate to see him for a while. However, I do feel down the road, he will be thought of as a medical pioneer, and be famous for that. For that alone, I would be willing to pay to see him. But, I think thats a lot of cash, so no-one would blame you either way for seeing him or not.

quote:
Originally posted by heart a tact



I don't want to bombard the community with questions



classic tms personality. Because your'e worried what we'd think of you? Relax.
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heart a tact

USA
21 Posts

Posted - 01/24/2010 :  11:03:09  Show Profile  Reply with Quote
thanks very much for the responses!

i don't have time to read all of those links at the moment, because i need to work on applications to some graduate programs, with deadlines approaching quickly... this is absolutely a motivating factor for my inner rage, but if I don't get it done on time, I will have a lot MORE to rage about.

anyway, i will be reading the links that skizzik provided as soon as i get the chance-- i've certainly had enough of the pain. in comparison, facing my emotions is like a vacation.
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guej

115 Posts

Posted - 01/24/2010 :  11:25:38  Show Profile  Reply with Quote
I saw Dr. Sarno in NYC last June. The cost for the "program" was $1300, of which, I believe my insurance covered around $600. At the time, the program included limitless attendance at the monthly panels, which were run by recovered patients who shared their stories and roads to improvement. It also included the in-person lecture by Dr. Sarno (a one time 2-hour lecture), and follow-up with him in smaller groups if the pain was stubborn. After I attended the first panel in July, he cut them out completely, as well as the smaller sessions. I don't know if he still gives the lecture. Let's fact it. The man is 87 years old. It's amazing to me that he still sees and calls patients.

What I'm getting at is that personally, I don't think it's necessary to see him. I had read his books before seeing him and was already on board. I thought the panel presentation was immensely helpful, but those don't exist anymore. You can call his office and see what exactly your $1300 gets you today and make a decision after that. Pain that lasts beyond the "normal" time period, and for which no physical cause can be found, is chronic pain pure and simple, regardless of where it is in your body. There seems to be a lot of emphasis on "back" pain, but the TMS approach is applicable to all these pain syndromes and episodes. You've gone down the physical route. Now try this approach, which is certainly mind over matter. I'd also recommend a book I just finished reading, which again, could be applied to ALL pain. "Back Sense" by R.Siegel (and 2 others) is all about taking your life back. The focus is not on "getting rid of the pain", but rather, overcoming the emotional toll and physical limitations that pain has caused in your life. In the process of taking back your life, the pain should reduce on its own, but that's not the focus. The author does a great job of explaining how chronic pain develops and how our thoughts and fears keep us in the pain cycle and living a limited life. The book stems from his own experience with Dr. Sarno, but I like it because it walks you through how to take start living again instead of putting off all the joy in your life "until the pain is gone". His point is, get your life back, and the pain will go away, and not the other way around. Sounds to me from your posts that you are where many of us are....frustrated, focused on pain, and not living your life. Get the information you need from Sarno's office, and then decide if it's worth the $$. If you decide not to see him, just know there are lots of resources (on this forum and elsewhere) that can get you where you need to be. Most people, it would seem, have improved without seeing a TMS doctor. Good luck!
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heart a tact

USA
21 Posts

Posted - 01/24/2010 :  14:21:57  Show Profile  Reply with Quote
day 10 now

my progress has slowed a little bit, though I still remember the amazing moment when I broke into a RUN last week at a moment when I felt emotionally, mentally, + physically 'ok' having just begun to vent some of the intense RAGE that I find when I start to dig a little bit. sometimes, I will go into my room and throw a little tantrum, just like when I was a child, and i usually feel better afterwards. still, the fact that I have violent impulses worries me.

does anyone here ever get scared of their rage? my conscious, ego-mediated personality has been one of a very easygoing nature for years. my self-image has been something of a pacifist for years, but in the past week I've begun to realize that this image is just a projection to hide the rage that I feel.

over the years, i've really gotten into the habit of using marijuana to create a veneer of calm in my life. i've cut down on consumption significantly in the past weeks... but i've been enabled to do this primarily through new prescriptions for gabapentin and tramadol (painkillers) from my pain management doc. i'm definitely of the opinion that the drugs are subduing my RAGE at least as much as my pain (potentially more).

I guess that in a situation like this, overcoming my fear of life without drugs to pacify my anger is just as important as my fear of physical activity.
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catspine

USA
239 Posts

Posted - 01/24/2010 :  18:04:54  Show Profile  Reply with Quote
Heart a tact
What ever you do that brings relief to you is a blessing for the time being and you 're the one who sees fit about that .
Following your quote
quote:
i've certainly had enough of the pain. in comparison, facing my emotions is like a vacation.

I would like to remind you that the emotions stored in your unconscious are yet unknown to your conscious mind, the same goes about the rage stored in there and if facing it was that easy you would not have to repress these emotions in the first place. The reason why you repressed it (at least according to Dr Sarno's theory ) is that it is unbearable to the conscious mind. If this theory is not acceptable to you there are probably other that will be able to help you and some people in this forum may have a better idea about what these are than I do at the moment.
The rage you can perceive is to be dealt with there is no question about that and a good anger management program would probably be helpful but it may not make a dent in the TMS related pain unless you truly believe it will. The brain works in strange ways sometimes...

In my long experience with TMS I have found that as the Man said itis not necessary to know the nature of the emotions just be aware of the mechanism is often enough but time for the symptoms to disappear varies greatly from one individual to an other. you may be a very good student but the unconscious is slow to learn unfortunately so patience is a must.
Also remember that drugs are placebos in TMS cases and if you expect full recovery at some point you 'll probably have to get off of them completely and go psychological entirely. One thing at a time...
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jcrissman

5 Posts

Posted - 01/24/2010 :  19:07:58  Show Profile  Reply with Quote
I was diagnosed with epididymitis about 6 years ago. Was prescribed anti-biotics. Had it recur about 3 times, each time was prescribed antibiotics again. Symptoms were massive pain in the tubes above my testicles. Constant pain/pressure, especially when I would walk.

Then I got it again and figured it was TMS. Did standard TMS work with it (I formerly used it for back pain) and it went away in about 8 days without any medicine.

Hasn't been back since then. Last time I had any symptoms of it was about 4.5 years ago.
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heart a tact

USA
21 Posts

Posted - 01/25/2010 :  18:04:06  Show Profile  Reply with Quote
quote:
Originally posted by jcrissman

I was diagnosed with epididymitis about 6 years ago. Was prescribed anti-biotics. Had it recur about 3 times, each time was prescribed antibiotics again. Symptoms were massive pain in the tubes above my testicles. Constant pain/pressure, especially when I would walk.

Then I got it again and figured it was TMS. Did standard TMS work with it (I formerly used it for back pain) and it went away in about 8 days without any medicine.

Hasn't been back since then. Last time I had any symptoms of it was about 4.5 years ago.



so encouraging! thank you for sharing, it helps me a lot.

today i woke up with a terrible headache, sore body.... felt AWFUL, probably because i am stressed out about my applications to grad school, due next week. i had a lot of running around to get paperwork together today... but my nuts didnt hurt too bad. i even skipped my normal nightly dose of painkillers.

the fact that i felt so miserable today, yet NOT in the groin-- it seems to prove, beyond a doubt, that i'm experiencing tms.

as i walked around manhattan today, i was talking to myself -- "all of this pain and discomfort is a result of my emotions, not a physical ailment", over and over. i bet i looked truly, truly crazy, but i think it helped me.

i have been playing a game with myself-- "how does your inner, illogical child mind feel right now?"

the answers have been: annoyed, wanting to go home, wanting to be taken care of, wanting to sleep, alienated, alone, like there are unreasonable expectations being put upon him.

these are all terrible feelings... but at the moment, it feels nice just to admit these things to myself, after years of ignoring them to maintain my sharp-as-a-tack, alpha personality. my pain is not gone, and this morning i really wanted to crawl back into the womb... but I think I am improving.

i am at least uncovering some of the emotions that i suppressed throughout the years.


EDIT: today, since i felt so terrible, i tried talking to my girlfriend about the emotions im experiencing... i find myself furious at her for not being understanding enough. she said "don't you think that you need to stop dwelling on these emotions so much?"

i answered that because I have had a typical male personality for so long, i've been very prone to repressing my emotions, and she took that as an opportunity to start up a debate about gender, which i was really not in the mood for.

she wanted to talk about how men aren't the only ones expected to hide emotions, about how much pressure there is on women, etc etc.... UGH.


Edited by - heart a tact on 01/25/2010 22:05:32
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heart a tact

USA
21 Posts

Posted - 01/27/2010 :  13:00:56  Show Profile  Reply with Quote
2 weeks in now:

this is news that I think men with testicular pain can use:

i have begun seeing a physical therapist who specializes in pelvic pain. she says that pain in this region is far more common in women, and this is why many men with testicle/perineal pain get stuck in the loop of urologists who are obsessed with urinary tract issues, enlarged prostate, etc.

she found that various muscles in my pelvic floor area are tense (in spasm, i think they say?), which causes a lack of fluid circulation in the region-- this explains the swelling.

to me, this helps to fill in the image of sarno's theory-- ie, lack of oxygenated bloodflow.

my muscles are not receiving the bloodflow they need, causing a prolonged contraction, and thus stopping my scrotum from receiving the bloodflow that IT needs.

TMS really is a tricky phenomenon. mild trauma and very minor irregularities in my scrotum/pelvic region predisposed me to this type of swelling and muscle spasm-- when under emotional stress, it seems that my brain located this complex area of my body and used the complexities to cause serious pain without serious medical issues.

knowing this helps to 'fill in the gaps' so to speak, and I now have some physical exercises to compliment the emotional work that I am doing.

I am of the opinion that this is a treatable, nonthreatening physical issue that was caused by my emotional issues. I know that Sarno recommends against physical therapy, but in this case i think it will speed up my recovery from this particular episode, while my TMS work will help prevent future pain issues.
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Dave

USA
1864 Posts

Posted - 01/27/2010 :  16:03:54  Show Profile  Reply with Quote
quote:
Originally posted by heart a tact
...I know that Sarno recommends against physical therapy, but in this case i think it will speed up my recovery from this particular episode, while my TMS work will help prevent future pain issues.


It is important to understand why a critical step of TMS recovery is to stop physical treatments. You really can't have it both ways. If you treat the probem with physical therapy, you are accepting that there is a structual issue that needs to be addressed through exercise.

Perhaps you are right, in your case, and you can use the therapy as a crutch to get over this particular issue. However, for long-term recovery, this is not consistent with TMS treatment.
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heart a tact

USA
21 Posts

Posted - 01/27/2010 :  22:44:35  Show Profile  Reply with Quote
quote:
Originally posted by Dave

quote:
Originally posted by heart a tact
...I know that Sarno recommends against physical therapy, but in this case i think it will speed up my recovery from this particular episode, while my TMS work will help prevent future pain issues.


It is important to understand why a critical step of TMS recovery is to stop physical treatments. You really can't have it both ways. If you treat the probem with physical therapy, you are accepting that there is a structual issue that needs to be addressed through exercise.

Perhaps you are right, in your case, and you can use the therapy as a crutch to get over this particular issue. However, for long-term recovery, this is not consistent with TMS treatment.



surely its reasonable to say that physical treatments, like drugs, are useful to treat symptoms in certain scenarios, even though they do nothing to combat the CAUSE of those symptoms? i plan to quit p/t as well as my pain meds, in due time. if anybody has any experience or advice i'd definitely appreciate it, because i'm feeling this out as i go.
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Dave

USA
1864 Posts

Posted - 01/28/2010 :  09:08:20  Show Profile  Reply with Quote
quote:
Originally posted by heart a tact
surely its reasonable to say that physical treatments, like drugs, are useful to treat symptoms in certain scenarios, even though they do nothing to combat the CAUSE of those symptoms? i plan to quit p/t as well as my pain meds, in due time. if anybody has any experience or advice i'd definitely appreciate it, because i'm feeling this out as i go.


I urge you to read Dr. Sarno (The Mindbody Connection or Healing Back Pain) to learn why physical treatments are contraindicated for TMS.

When Dr. Sarno first started treating TMS, he felt the same as you. But he then stopped prescribing physical therapy for his patients and got dramatically better results. Anything you do to focus your mind on the symptoms is contradictory to recovery. You need to accept that the symptoms have a psychological origin.

However, Dr. Sarno still prescribes pain meds if necessary. Taking a pill is not the same as doing exercises designed to "fix" a structural problem.
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heart a tact

USA
21 Posts

Posted - 01/28/2010 :  16:06:44  Show Profile  Reply with Quote
quote:
Originally posted by Dave

quote:
Originally posted by heart a tact
surely its reasonable to say that physical treatments, like drugs, are useful to treat symptoms in certain scenarios, even though they do nothing to combat the CAUSE of those symptoms? i plan to quit p/t as well as my pain meds, in due time. if anybody has any experience or advice i'd definitely appreciate it, because i'm feeling this out as i go.


I urge you to read Dr. Sarno (The Mindbody Connection or Healing Back Pain) to learn why physical treatments are contraindicated for TMS.

When Dr. Sarno first started treating TMS, he felt the same as you. But he then stopped prescribing physical therapy for his patients and got dramatically better results. Anything you do to focus your mind on the symptoms is contradictory to recovery. You need to accept that the symptoms have a psychological origin.

However, Dr. Sarno still prescribes pain meds if necessary. Taking a pill is not the same as doing exercises designed to "fix" a structural problem.



ive read the mindbody prescription, so im somewhat familiar with the logic at play. i have a copy of the divided mind waiting for me at the post office, so i suppose i'll be learning more as soon as i go pick that up.

as for the difference between meds and therapy, would you say it's because the physical treatments seem to correlate with physical causes that they're counterproductive (as opposed to pills, which produce a generalized/full body effect)?

personally, i feel like if the therapist can manipulate something and give me a kick-start back into normal activities, i'd be a fool to turn it down...

is the danger largely that without pain as a motivator, we humans have trouble completing the necessary emotional/mental work to truly banish the TMS?
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walnut864

94 Posts

Posted - 01/28/2010 :  21:27:19  Show Profile  Reply with Quote
I had epididawhatumacallit, ahh i cant spell it. i had it years ago. looking back it was prolly the 2nd - 4th tms symptom i had.
I know they could never find an actual infection. antibiotics didnt work. i also developed severe sciatica around that time. this was, oh id say 5-6 years ago.
i get an occasional flare up of the old epididawhoohoo but it never lasts more than a few hours at most it will last a day but thank God it doesnt last months like it used to.
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hopeacres

USA
27 Posts

Posted - 01/29/2010 :  15:10:28  Show Profile  Reply with Quote
Hi, I have had years of what the medical doctors call Interstitial Cystitis. I went through countless humiliating tests, series of antibiotics which led to numerous other problems, cold and uncaring physicians all to be told that I was probably allergic to my husband's sperm and to refrain from sexual intercourse as much as possible. My husband and I had only been married for 7 months at the time.

After 3 years of this I was in a car accident and went through PT. The physical therapist was very unusual and did 'internal pelvis' massage... this was highly uncomfortable for me. Yet, this very kind, caring PT told me, "Did you know that your entire pelvis region is tight and rigid rather than soft and supple?" At the time, that meant nothing to me. I just shrugged it off not realizing she just told me something very important.

I went into 'remission' for many years and 6 years ago the urinary tract, bladder, urethra pain all came back with a vengeance. I, once again, sought help through numerous different doctors. Almost 2 years ago I literally laid down on the floor in complete desperation and called out to God for help. I had no where to go; nothing else to do and I was in misery.

I am incredible thankful for He answered my prayer and I stumbled across Dr. Sarno one day then Dr. Schubiner. I contacted Dr. Schubiner and he verified that Interstitial Cystitis, which he preferred to call painful bladder syndrome, was indeed a tension related pain and it absolutely is curable. I remember crying with joy!

Soon after I began Dr. Schubiner's program I found a book called "A Headache In The Pelvis" written by Dr. Anderson and Dr. Wise. I think it is Dr. Wise that had 23 years of scrotum pain. He finally found the link to tension and the pain. He is now pain-free and has been for many years. He and Dr. Anderson have a clinic in CA to treat men and women with all kinds of pelvic, urinary tract, and anal inflammation and chronic pain ailments.

These two doctors never use the terms like TMS or MBS (Mind, Body Syndrome). Yet, they talk about tension, fear, anxiety and stress-related pain. Their plan for recovery is almost identical to Dr. Schubiner's only they incorporate massage and pressure trigger points. Dr. Wise and Dr. Anderson believe that one cannot heal the chronically tightened therefore shortened muscles without massage ALONG with all the emotional counseling and writing exercises.

I read your post about your PT as somewhat as a 'tool' to aid in your recovery; for the PT could help lengthen your tightened muscles even though you KNOW the pain is rooted in TMS.

Personally, at first I did the usual TMS over-achiever thinking, "Oh no! I can't get better from painful bladder and pelvic pain until I go out of state, spend money I don't have, and live at a clinic for 2 weeks to receive specialty massages!" My husband... his every so gracious, calming presence... reminded me that I have experienced many weeks pain-free without massage and as I do the work the pain will keep getting less and less.

You know what? He was right. I don't go get the massages and I am getting better and better. I went 2 months pain-free which is a miracle! Hooray!

However, in my personal opinion, if you had a PT available that knew how to massage your tightened muscles I can see that it would benefit you to learn how to relax as you practiced deep breathing through the massage techniques. Times in which I have received massages I have faced how hard it is for me to receive from others and so it is a good tool for me to receive love for myself, breathe deeply, and relax my mind as well as my muscles.

I love reading all the ways others reach out to one another to feed encouragement and support in this forum. Wow! There are some wonderful people in this world.

Keep going at it!

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heart a tact

USA
21 Posts

Posted - 02/01/2010 :  15:12:16  Show Profile  Reply with Quote
hi all

i am approaching week 3 now, if i've counted correctly. i did not keep up with my usual pelvic muscle massagaes my PT taught me or the TMS reading and writing because i had to go to pennsylvania for my girlfriend's mother's 50th birthday.

my girlfriend and i both have complicated relationships with her family and her hometown (let's just say that we find it "alienating"), and I have had nasty and painful flare-ups during past visits, which I attributed to traveling. It seemed reasonable, since getting out of the house at all was such an ordeal.

this weekend, however, I experienced no more pain in PA than I have been here in NY for the past week or so... and looking back, I realize that taking trips to MY parents' house in New Jersey never brought on such nasty flare-ups... funny how BLINDED i was by TMS, to the point where I didn't notice this pattern.

just received 'the divided mind', excited to read it. still haven't mustered the courage to crack 'a headache in the pelvis', though it seems worthwhile.

thanks much for the success stories and support everyone
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