Fw: pelvic pain and levoquin

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Pelvic pain syndrome is just that, a syndrome, not an official disease. It's a recognized group of symptoms experienced by men with chronic prostatitis in most cases for which there is little known and for which there is almost nothing in the way of treatment. You usually hear the same things from all the doctors who will sympathise with you , but have nothing to offer. I had these problems you describe even before the term Pelvic Pain Syndrome even existed. It was not a recognized condition up to a few years ago and unfortunately , although your doctors may sympathize with you, they will tend to deal with it the same way that they have dealt with side effects of levaquin, which is to deny that they exist amongst a larger percent

of the population. Something that I believe will soon be proven not to be the case and officially accepted. Doctors tend to deny the existence of simple conditions that they can do nothing about. Not being able to effectively treat prostatitis or Pelvic Pain Syndrome in the vast majority of patients does not bode well to instill confidence that the same people can effectively treat PCa. Keep in mind that the Merck Manual, an official handbook used by most medical practitioners , up until just 7 years ago stated that impotence caused by removal of the prostate had an incidence of only 5 pct. and that incontinence was always only transitory. I think you won't find many doctors these days attempting to convince you of either. Medical dogma does tend to eventually catch up to reality but very slowly.

Unfortunately for things to enter the medical literature in an official capacity often takes a very long time. Actually, i'm surprised that your husband's doctor has even mentioned Pelvic Pain Syndrome and simply did not say that he was a head case. Which was quite common only a few years ago. The internet of course has changed a lot of this as it has allowed millions of people/patients/sufferers to collaborate on medical issues first hand without having to go through the filter of medically authorized and sanctioned channels. This has caused doctors to pay more attention because you cannot have groups of thousands of people with the same symptoms and doctors denying that such a problem exists. They know that the internet is not going to go away and they now have a much more accomodating attitude and recognition that to deny reality

is not going to instill confidence in their patients. This actually is a good thing. The problem however with Pelvic Pain Syndrome is that there is next to nothing that you can get in the way of help because no one really knows for sure what it is. All you can do is research on the internet the various support groups and websites associated with the condition and try some of the various pallitive treatments offered in hopes that one of them might work for your husband.

It's hit and miss. The idea is that so long as you are not doing anything dangerous like drugs or surgery for pelvic pain syndrome, you can simply move on to the next item on your list of things to try. As pelvic pain syndrome

has no official cause or cure, you are left to your own devices. Surgery will not cure this condition or even alleviate it. I've had many urologists at least admit this to me. As for drugs, other than pain killers and perhaps muscle relaxants I do not believe much exists. In all likelyhood the syndrome has something to do with nerves in the pelvic area but no one can confirm this. I've had some relief with acupuncture off and on and it depends on whom you go to. This is very important because I went to half a dozen before I found one that was able to help me with my problem and she had spent 4 years in China learning and 6 years in Vietnam practicing. Most American doctors go to China for a month or two and proclaim themselves to be experts. Actually, it takes years of training and practice to become proficient.

I feel a whole lot better now but for me it's been close to 20 years. Which of course is not going to make you very happy. However, I need to emphasize that for the first 10 of those years there was nothing on the internet and for the first 5, there was no internet. So I was pretty much on my own. Mainstream medicine has nothing to offer other than pain killers and muscle relaxants. I even had one doctor at a major hospital, world renowned suggest to me that I have a nerve block and simply have all the feeling in my genatalia removed. I thought he was insane or joking with me but he was quite serious. Use the term pelvic pain syndrome and prostatitis in your search engine and begin visiting and joining groups that can give you some suggestions. Although i'm a lot better today, I don't know why. Over

the years i've taken dozens of antibiotics (in the beginning) and subsequently, years of hot sitz baths, hot water bottles, exercise, Thai massage, various supplements including vitamins and herbal mixtures. I've had acupuncture in the far east . Because western medicine only has a name for the condition, which is defined by a group of symptoms which cannot be relieved by drugs or surgery, you are pretty much on your own. The advantage you have over me is that there is a lot more out there in the way of help than there used to be when I was dealing with the problem. Your disadvantage of course is time. It's taken me almost 20 years to get to a point where my various symptoms have abatted to the point where I am not bothered by them much and they come and go.

Sorry I cannot be of more help. Good Luck , BOB

----- Forwarded Message -----To: ProstateCancerSupport Sent: Monday, September 5, 2011 3:55 PMSubject: Re: pelvic pain and levoquin

You have presented a well articulated situation, with which I have no experience. I am impressed that you want to do research on this issue. Have you sought second opinions from other doctors? Do you have an ombudsman or doctor willing to lead you through the maze of information to the desired outcome? I hope that others on this site with experience on this issue do respond too. Regards, T

Hi, I've emailed before. My husband was diagnosed with prostate cancer 13 weeks ago: GS 7, age 59, T2b, 5 out of 12 cores positive. I have a question about pelvic pain syndrome and a comment about levaquin (and other cipro drugs). He's had ongoing prostate pain and pain in the surrounding area since his biopsy. Just this week he was diagnosed with what's called a pelvic pain syndrome, which means he has prostate pain and pain in the surrounding area, it's not helped with antibiotics, so it's not an infection, and it's been going on for awhile. The treatment doctor he's chosen (Dr. Greg Merrick at the Schiffler Cancer Center in West Virginia, who does seeds) recommends he wait until the pain subsides before treatment. The problem is, the pain isn't subsiding and it's already been over three months since diagnosis. The other

problem is that from what I've heard, any treatment for prostate cancer will make this pain situation worse. So I have two questions:1. Does anyone have any experience with pelvic pain syndrome, how it acts, what helps, etc.2. Does anyone know whether one treatment or another might be preferable given this situation (setting aside cure rate for the moment)? In other words, which treatment is less likely to make it worse? Also, I emailed a few weeks ago about levaquin induced tendonitis. My husband took that for the prostate pain. Just a brief update about levoquin problems.... The official word on this side effect, especially tendon ruptures, is that it is extremely rare. The unofficial word on this is that it is very common. The official word comes from the doctors and drug company. The

unofficial word comes from my contact with people in my town of all of 40K people. It's so common that the orthopedic clinic down the street has heard of and dealt with it a lot. Even the receptionist at the physical therapy desk said she's heard a lot about it. The foot doctor there said it is pretty common but no problem, he can easily do surgery on it if it doesn't heal (he didn't mention that that could involve a couple years of disability). The physical therapists have tried to research it, since they've encountered it so often, but there's no information out about how to treat it. The only recommendation is to wait. The problem with that is that the drugs changes the DNA in the cells, which then are replicated, so the problem can continue on a long time. My husband stopped the drug 2 1/2 weeks ago. The tendonitis is a bit better but is preventing him

from walking much, which is difficult because Dr. Merrick says he should exercise vigorously 30 minutes every day. He's trying out swimming. So far it hasn't made things worse. So, if you ever feel a twinge in your Achilles tendon or any muscle when on any of the cipro family drugs, you might want to go see a doctor right away and think about getting off the drug. It can cause a whole bunch of other side effects as well. Thanks.