| T O P I C R E V I E W |
| Curiosity18 |
Posted - 07/19/2006 : 19:34:41
This is so hard to write, because I'm so much better at giving advice than taking it, but I really need your help. I am a long-time TMS person (was diagnosed by Dr. sarno 10 years ago with neck, back, sacroiliac problems. About a year ago I fell down some stairs and sprained my ankle. I had a flareup of neck issues as well, but I knew it was TMS and tried not to freak out over it. At a follow-up x-ray for my ankle the doctor noticed a bruise from the fall on my shin and said that I needed to elevate my leg or I would develop something called "compartmental syndrome", so I fearfully and religiously elevated and iced my ankle and shin.
Well, the ankle, shin and neck healed up pretty well, but several weeks after the fall I began having frequent need to urinate as well as mild irritation in my bladder. I had several bladder infections in my early 20s (20 years ago) so I assumed this was another one. Because I was getting ready to go out of town for a week I phoned my physician and told him my symptoms, so he proceeded to call in a prescription for antibiotics without a urine culture. Within about four days I was completely better. Several weeks later, however the symptoms came back (this time, a culture was done and was normal). This time I was given another antibiotic (Bactrim), and several hours after my first dose my symptoms got much worse (urinary frequency, burning between (not during) urination. Because I'm the TMS obsessive-compulsive type, I went on the Internet and found multiple horrible side effects from this drug. My symptoms got worse. I stopped the medication after three days, and tried to let things settle down. In addition my skin felt like I had a sunburn.
Following aa visit to the ER, a uro-gynecologist (who performed a cystoscopy), and an acupuncturist, it was finally determined that everything was normal, but that I might have a condition called interstitial cystitis, although my bladder looked normal. I was placed on a low acid, no caffeine, no alcohol diet, which didn't make one bit of difference. I still had to pee a lot, and my bladder continued to feel irritated and burned, despite normal tests.
Over the next six months my symptoms waxed and waned. Finally, last May, due to increasingly difficult monthly female problems, my doctor suggested I have a pelvic MRI. This showed numerous uterine fibroids with one large one squishing my bladder. The radiologist believed that this was what was causing the urinary problems, and suggested a procedure that would shrink the fibroids (uterine artery embolization-which consisted of injecting a substance that would cut off the blood supply to the fibroids).I gladly had this procedure six weeks ago. The intervention radiologist (the surgeon who performed the procedure) said that this could take three to six months before the fibroids would shrink enough to alleviate the symptoms. In the meantime, following an ingestion of Advil pm, my bladder symptoms became much worse again (similar to the degree following the Bactrim), and I wonder if I had some kind of medication reaction once again. However no one seems to know for sure. In addition, with the exception of the intervention radiologist, no one seems to know if the fibroids really contributed to the bladder problems in the first place. And no one seems to think that the medications have caused any long-term problems with my bladder.
I realize that you are not physicians, and that the purpose of this web site is to not give medical advice. But nobody seems to know what's really going on. Several TMS have said that this sounds like TMS to them, and that it can change from one system to another (in this case, from musculoskeletal to organ). I don't seem to be having much improvement with this, however.
I am wondering if those of you who have experienced TMS manifested as genitourinary problems (prostatitis, interstitial cystitis, etc.), or even dermatitis, who have been successful in using TMS techniques would please comment on this and hopefully give me some words of encouragement. I am also paranoid about taking any other medication. Prior to this whole experience, I had never had an allergic reaction to drugs.
The next step would be an invasive work-up at the local major university, but I really don't feel up to that right now. Please give me your thoughts. Should I continue with the TMS approach while waiting for the fibroids to continue to shrink? It's so darn frustrating!
Thank you for your comments.
Curiosity
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| 14 L A T E S T R E P L I E S (Newest First) |
| Littlebird |
Posted - 12/16/2006 : 18:09:02
I too have had both the IC and fibroids diagnoses as the explanations for my bladder problems. The bladder problems actually were my first symptom, starting at the age of 4 when my family moved out to the country and we lived in tents for a while. I was put on Elavil several years ago, which helped settle the bladder down for a while, but then it went back to it's usual fussiness and has gotten worse with the fibroids, which I'm told are the size of a 16 week pregnancy. I'm weaning off the Elavil now, since it doesn't really help much anymore.
The one thing that really settles my bladder down, although just temporarily, is to mix about a teaspoon of baking soda into about 2 ounces of water and drink it. I do it on some of the bad nights when my bladder won't let me sleep more than an hour or two. But it does make a more favorable environment for bacteria to grow, so if you do have an active infection going on it's best not to take it then.
For anyone who is considering Uterine Artery Embolization, my mother had it done because she had heavy bleeding due to uterine cancer but could not have a hysterectomy due to her heart and liver problems--doctors felt she couldn't survive surgery. The UAE stopped her bleeding within days. I was impressed. (She ended up living for another two and a half years.) But we were told there was a possibility of complications that could cause serious kidney damage, and I don't know if that was just in her case or if it's a potential complication for anyone, so I'd be sure to ask about any possible complications before I'd have the procedure done. |
| Kristin |
Posted - 12/16/2006 : 16:26:38
I've been blaming my monthly problems on Fibroids. Perhaps falsely. The doctor confirmed yesterday that my uterus is the size of week 12 of a pregnancy. I will have an ultra sound but am not keen on the idea of a hysterectomy or serious hormone therapy. A friend of mine has just gone through hormones for endometriosis and it was a terrible experience for her. I am interested to hear if the radiological method works. I experience pressure, pain and fullness nearly three weeks a month. Frequent urination has been a new symptom this month.
I would say continue thinking psycologically. There's nothing to lose with treating symptoms that appear to be TMS as TMS, especially in absence of the evidence of serious disease. I know my response sounds contradictory. I wonder if we could release all tms rage if the annoying symptoms of the fibroids would go away? |
| miche |
Posted - 12/16/2006 : 16:12:58
I was prescribed bactrim for a year duration , many years ago, this was done by a urologist despite the fact that I showed no infection at the time of my appointment, I agree that this is a horrible drug , I felt so very weak after a year on this drug , furthermore two weeks after I stopped the med I WAS DIAGNOSED WITH ANOTHER INFECTION, SO IT MADE ME REALISE THAT ANTIBIOTICS WERE NOT THE ANSWER. The solution was simple, I switched from having baths to taking showers, one old doctor recommended this as way of treatment as he was convinced that the high rate of bladder problems in our town was due to all the bleach in our water system, it worked, could have been placebo, I suspect I had tms even back then , I certainly was under a lot of stress, still I never resumed the baths to this day.
There are still times when I feel that I may have an infection and even go to have it checked, the results are always negative and so I am convinced that it is all part of my tms fibro stuff, the bladder is a muscle after all.
As a point of interest both my sister and my mom had what seemed like a bladder infection , when they consumed anything with aspartame in it, hope this helps! |
| patrice1111 |
Posted - 12/16/2006 : 15:35:11
quote:
Originally posted by Curiosity18
helpadude
Thank you for the post and links. I think one of my problems is that I've already read too much scarey stuff on intercystial cystitis on the internet. It's worse than reading about fibro! I also have given the diet a good chance without any improvement. It's interesting that so many other TMS equivilants tie into this from your research! I plan to write to Sarno on this.
Thanks again
Curiosity
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| Logan |
Posted - 07/21/2006 : 09:46:46
I haven't had symptoms as severe as yours but before TMS manifested in my neck after a car accident, I was plagued by frequent bladder infections or symptoms that immitated them and urinary urgency, especially during vacations (or trips to visit family - HELLO, TMS).
One doc told me it might be a problem with my Ph so I started taking cranberry pills regularly which seemed to help; or at least they were a good placebo. I don't take them anymore and I haven't had a bladder infection in ages.
But immediately after, or I should say during, my recovery from the "neck TMS" three or four years ago, the burning sensation and urinary urgency thing came back.
I still get it in situations where I am anxious that I cannot get to a bathroom- flying on airplanes, sitting on a ski lift - I think it's a combo of conditioning and the psyche using it as a distraction for my fear of dying in a plane crash or a skiing accident. (I have a morbid tendency to obsess about dying in terrible ways).
Anyway, I ignore it. It goes away.
Seeing as how you've made an effort to make sure it's not something physical and how the medicos are grasping at syndrome straws, it would make sense to me to see Sarno again, as many have suggested.
Wishing you well... |
| Curiosity18 |
Posted - 07/21/2006 : 08:30:46
helpadude
Thank you for the post and links. I think one of my problems is that I've already read too much scarey stuff on intercystial cystitis on the internet. It's worse than reading about fibro! I also have given the diet a good chance without any improvement. It's interesting that so many other TMS equivilants tie into this from your research! I plan to write to Sarno on this.
Thanks again
Curiosity |
| tennis tom |
Posted - 07/21/2006 : 08:26:15
quote:
Originally posted by Curiosity18
TT and Nor,
Hey, that's great news about Sarno. I think I'll compose a letter to snail mail him (as there have been comments about him not being much of an e-mail man). TT, how recent was his communication with you? I'm wondering if he is still responding by mail these days. By the way, what did he say about your hip?
Thanks again,
Curiosity
Hi Curio18,
Being a TMS "goodist", all my Sarno books are loaned out at the moment. They are all highly annotated and have bits and pieces of my TMS saga scattered amidst their covers. I also have my "pain" files, x-ray amd MRI images, at another location. So, to make a long story short, at the moment, I can't quite put my finger on my treasured letter from the Good Doctor. It was many years ago. His answers were quite terse and perfucntory, as you would expect from a busy professional, especially a doctor, scientist and author.
If memory serves me, I did not ask him about my hip, because it was not a symptom yet. It was my L-4/L-5, vertebrae that was the issue at the time, about 10 years ago--(and her name was Barbara). My hip may possibly be a "compensatory gait disorder", caused by the lumbar/TMS symptom. Two TMS doctors have dx'ed my hip, as, NOT TMS, but, arthritis, of the butt. I have suffered from a powerful NOCEBO effect from these two dx's. It has taken me about 5 years to put them in the "back" of my mind and put "return to 'normal' activity", in the forefront of my mind.
Back to the now infamous Sarno letter, I'll try to dig it up, (the goodist/perfectionist in me compelling me to do so)--but in no big hurry--(screw the gremlin, I'll do it when I feel like it), no offense.
I think I asked him if he was going to write a new book? Yes
Would he ever be coming to SF to lecture? No
And one or two more questions. I'll try to dig it out. Good luck with your communication with the Good doctor and don't expect any long answers like mine, (apparently I have a lot of time on my hands combined with being a TMS goodist). He may be more ameneable to e-mail now, I think his administtative assistant Mary assists him with correspondence.
His contact info should be on the HOME PAGE under the Links or TMS INFO.
Good Luck,
tt
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| helpadude |
Posted - 07/21/2006 : 01:31:11
First time poster here,
Interstitial Cystitis (IC) is a scary thing. It was what I thought I got at first and it scared the !$^! out of me. You can see my post at IC-Network here:
http://www.ic-network.org/forum/showthread.php?s=ae02d51c5e81138e17a65f5dbe2a0c00&t=28300
However, more research on my part shows that IC is a controversial diagnosis. It's what doctor call it when they can't FIND ANYTHING ELSE WRONG. Sometime a Cysto will show inflammation (ulcer) in bladder but other study has show that a normal person will have it too.
Yet another tidbit. IC is almost exclusively a female (90%) condition, and usually happens to upper class New Yorkers. If you care to read the scary stories on IC-network you will see a lot of ICer suffer from IBS, CFS, Fibro as well (ring a bell?)
Is this TMS? Maybe! However, I haven't read any case of long time IC people that suddenly got better. But, don't panic yet. Sounds like you just had this condition. So first of all, there is no harm in doing an IC Diet (google for more info). IC diet will help with bladder irritation.
Also, here's a related TMS story:
http://www.chronicprostatitis.com/forum/viewtopic.php?t=3277
Your story, sounds a lot like this guy:
http://www.ic-network.org/forum/showthread.php?s=ae02d51c5e81138e17a65f5dbe2a0c00&t=29505
The currently popular theory is that stress cause a person to tense up the Pelvic Floor Muscle causing "mast cell" in bladder to react and cause tissue damage. So one of the treatment is "Skilled Relaxation".
It's late so I can't think clearly, I will write more tomorrow. |
| Curiosity18 |
Posted - 07/20/2006 : 21:41:18
TT and Nor,
Hey, that's great news about Sarno. I think I'll compose a letter to snail mail him (as there have been comments about him not being much of an e-mail man). TT, how recent was his communication with you? I'm wondering if he is still responding by mail these days. By the way, what did he say about your hip?
Thanks again,
Curiosity |
| Nor |
Posted - 07/20/2006 : 20:45:32
Hi Curiosity,
Tennis Tom is right. Once a Sarno patient, always a Sarno patient. I also urge you to phone him. I will bet you'll feel better after the call.
I also have had frequent urination on and off my whole life. Never gave it much thought until now. I'm quite sure it was TMS. It started in adolescence during a difficult family period. Hmm...you just switched on some major wattage! It was so prevalent at one point that I've got a photo of myself at 20 years old that my college roommates took of me in Toronto in front of a sign for a public parking lot. It had a large capital "P" on it w/a circle around it for the word "park". It said "P - All day".
Nora |
| tennis tom |
Posted - 07/20/2006 : 09:57:01
Curiosity18,
Thanks for the reply and the move update. From what I gather from members of this board, who have seen the Good Doctor, once you are a patient of his, you are a patient for life.
I would not hestitate to contact his office by phone, e-mail or snail mail and ask him about your latest TMS symptoms. I wrote him several years ago from out West and he answered all my quetions with a letter that I keep in one of his books.
Don't hesitate to contact him, even if your TMS gremlin advises you not to or urges you to procrastinate.
Regards,
tt |
| Curiosity18 |
Posted - 07/20/2006 : 08:57:12
Susie and TT,
Thank you so much for your comments and suggestions. I found that section in Sarno's latest book on genitourinary problems, so I think I'll go back to some heavy-duty journaling and TMS self-talk for a while. TT, as paranoid as I am about medications right now, I think I will still check into the ones you suggested. Just to let you know, shortly after seeing Sarno, I moved to the other side of the country, and he only sees New York and New Jersey residents.
Curiosity |
| tennis tom |
Posted - 07/20/2006 : 00:54:58
Hi Curio18,
In Dr. Sarno's latest book THE DIVIDED MIND, he says that genito-urinary symptoms can be TMS. It sounds like your docs are just shooting in the dark and treating the symptoms and not the cause, probably TMS. Read his new book and and see what you think.
If Dr Sarno "cured" you of TMS in the past, how come you don't see him for your present symptom?
At 58, I as well as most men have some prostrate symptoms that can cause urinary urgency. I got an rx for Flowmax from a urologist after an exam and use it occasion if going on a long flight or road trip. It works very well. Knowing that it is there if I need it has given me a great placebo effect and I no longer "worry" about urinary urgency, and seldom take the pill. It has done wonders for my 84 year old father who takes one or two a day and he no longer needs to get up numerous times at night as he used to.
I have seen TV commercials for rx's for female urinary urgency. Have you tried any of these? It seems that the topic of urinary urgency is more "popular" now that the baby boomer geration is reaching that age.
"gotta' go, gotta go right now...".
tt  |
| Susie |
Posted - 07/19/2006 : 20:16:24
Hi curiosity, I have had these symptoms many,many times. As a matter of fact, I'm having them tonite. I have experienced frequent urination, intermitant burning from time to time,so called bladder infections but always a negative culture. I had fibroids, doctor recommended a hysterectomy,I refused. I've done tons of antibiotics and lived on cranberry juice cocktails. All I can tell you is for me, the most successful thing I have found is to ignore the symptoms. I am not sure why I'm having it tonite, but my sinuses are bothering me a little and my gut is a little upset. My typical tms friends. I'm not sure what is bothering me but I'm aware that something is. For me it's just typical tms junk. It doesn't phase me. Once you realize that tms is a distinct possibility, I'm sure you will be able to deal with it. |
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