Copyright © 2009 by Amy Stein. Click here for terms of use.
If you suffer from pelvic floor disorder, there are two essential truths to keep in mind always: First, you are not alone. Second, there is help and hope for an end to your pain and discomfort.
Here's the evidence for those truths: testimonials, in their own words, from people who have suffered the very dysfunction from which you are suffering. As you will see, these are men, women, and children, ranging in age from 4 to 75, who have experienced a range of disorders and conditions from chronic holding pattern to post–prostate cancer pain to a bad fall to inflammatory conditions, and more. Some improved quickly—within three months or less. For others, complete healing took as long as a year. What all of these patients had in common, however, was their dedication to their healing and to the discipline of the natural therapies in this book. They also shared an eagerness to let others—like you—know that it is possible to "get your life back," without medication or surgery, from the pain and suffering of pelvic floor disorder. I'm grateful to them, and I know you will be too.
Six months after a laparotomy due to endometriosis, the doctor wanted to send me for surgery again. Another doctor told me that the pain could be due to scar tissue from surgery. Not wanting surgery after surgery, I looked for other alternatives. I started working with a nutritionist and with Amy Stein at Beyond Basics. Amy uses pelvic floor therapy to alleviate muscle cramping and pain due to endometriosis and tissue massage to help loosen scar tissue. After working with Amy, I no longer am in constant pain but have finally gained back feeling and mobility in my abdominal area. She also taught me stretching exercises to do during the week. When I feel pain coming on, which is not often anymore, instead of reaching for aspirin or running back to the doctor, I do these exercises. I feel like I have my life back, I never went back for another surgery and my jumbo size bottles of Advil, Tylenol, and Tylenol PM have expired.
—Kimberly Perez
About seven years ago I was coping with a major physical problem, dysuria or extreme pain when urinating—and for hours thereafter. I had consulted several urologists, and they all had the same diagnosis: chronic prostatitis or bladder infection. The treatment was always the same, too: antibiotics, Flomax, and pain medication. I never got relief, and as a matter of fact the problem was getting worse.
I was watching a public access television program one evening and I heard a very bright M.D. describe pelvic floor disorders as well as interstitial cystitis. I thought to myself, that's it, that's my problem. I promptly made an appointment with a doctor who, after testing me for interstitial cystitis—it was negative—informed me that I had pelvic floor muscle disorder and referred me to Amy Stein.
I met with Amy, who made an assessment and started me on a program of stretching and manipulation. Most importantly, she educated me as to pelvic floor issues, their causes, and treatments.
After three or four months I was 80 percent to 90 percent better, the frequent painful urinations were virtually gone, and I had an awareness of the pelvic floor musculature and could help alleviate my symptoms by stretching and limiting aggravating activities.
Having worked through this problem, I understand the feelings of isolation and hopelessness.
There is hope and help.
—Patrick Appello, 53
I have had severe endometriosis for many years and have had several surgeries. I also started having another type of pain, which was very severe. It felt to me like bladder spasms, and I was having frequent urination every 20 minutes all day long. I finally went to an excellent urologist who was able to feel my pelvic floor muscles through an internal exam and found that my pelvic floor muscles were in spasm (or hypertonic). He prescribed Ativan for a very short term and physical therapy. It seems that after years of pain in my abdomen, I had clenched my abdominal and pelvic floor muscles so much that they were in a constant holding or tightening pattern and they had lost their normal function.
My physical therapist was able to help me through massage techniques and reeducation of the muscles, and with exercises that I could do at home. Finally I began to feel normal again. I am so thankful!!
—Dale Staunton
I was recommended to Amy for an unrelenting problem of burning in my urethra and a "conflict" between my bladder and bowel, when either was full. These problems were brought about by a seed implant therapy performed to cure my prostate cancer. The cancer was cured, but the issues described continued.
Amy did a thorough debriefing of all the issues and went back into my medical history. At the end of the assessment, she advised me that I had pelvic floor muscle tightness in addition to weakness; she was confident, based on her previous treatment of the issues I described, that she would be successful, and indeed after a period of time, the issues were resolved. Physical therapy treatment, as well as my daily home program, consisted of massage techniques, stretching, cardiovascular exercise, and relaxation techniques, specifically those for the pelvic floor. Once my symptoms calmed down, we eventually moved on to core strengthening and I went back to my weight training at the gym.
—Don Friedman, 75
Five years ago, I started experiencing urgency and frequency of urination. Every blood test and examination came out fine. I was told numerous times that there was nothing wrong with me. But I knew something was terribly wrong. As more symptoms started to progress, I became more persistent with the medical professionals. I began having horrible stomach attacks, pain during sexual intercourse, and I was running to the bathroom every 20 minutes to empty my bladder. Sometimes I felt such a strong urge to urinate but actually did not have to go at all. I was waking up five to seven times every night to use the bathroom. I wasn't getting any sleep and could barely eat anything without having a stomach attack. I also started having severe lower back pain. My whole life was thrown upside down.
I was finally diagnosed with interstitial cystitis, a chronic painful bladder disease. Basically, I had no lining around my bladder, which caused the stomach attacks, usually from alcohol or foods that were acidic. I was convinced to have a very painful surgical procedure done called cystoscopy with hydrodistension. I was told this procedure would relieve some of my symptoms, but it only made them worse. After being diagnosed, I was prescribed several different medications—such as 600 mg of Elmiron to help repair the bladder lining and reduce my frequency and urgency of urination, Tigan for nausea caused by the Elmiron, hydrocodone and Lortab for pain associated with my stomach attacks and pain during sexual intercourse, hydroxyzine to help me sleep through the night, and Prevacid for gastritis caused by all of the other medications. I felt like a walking pharmacy.
The Interstitial Cystitis Association recommended that I see a doctor in New York. He examined me and immediately lowered my dosage of Elmiron, stating that the amount I was on was for a 300-pound man when I was a 125-pound woman. This physician diagnosed me with pelvic floor dysfunction and surprisingly did not prescribe me more medication; instead he urged me to see Amy Stein, a physical therapist specializing in pelvic floor dysfunction.
At first, I was confused. I could not understand how a physical therapist could help with my increasingly painful and uncomfortable symptoms of the bladder. At this point, I was so desperate to get my life back, I was willing to try anything. I started seeing Amy in 2002. I lived about two hours from her office. Amy wanted me to come three times a week because my symptoms were so bad, but I could not do this. So, Amy insisted that I come at least once a week. The sessions were painful at first. My pelvic floor muscles were so spasmed and weak. But when I went home, I felt so much better. Amy gave me exercises and relaxation techniques to do at home to relax my spasmed pelvic floor muscles. It was a lot of work but worth it. Physical therapy is not a quick fix. It is a long process but it works. Now, I've been weaned off all of the medication.
If I feel a bladder or pelvic floor attack coming on, I will practice my deep breathing or exercises I learned from physical therapy. I have been off all medication for over a year and a half now. I sleep through the night, rarely ever waking up in the middle of the night to go the bathroom. Physical therapy has taught me to retrain my bladder, strengthen my core muscles, and learn to relax my pelvic floor muscles instead of tightening them. Instead of numbing my pain with medication, physical therapy has fixed my pain. Today, I have little pain and limited urgency and frequency of urination. I know how to deal with my pain and discomfort now. Physical therapy has given me my life back. My pelvic floor muscles are so much stronger, which causes less pain and less frequency and urgency of urination. It was definitely a long process, but I have made so much progress and am living my normal life again.
—Jaime McCarty, 29, currently expecting her first child
I had a propensity for bladder frequency all my life as well as sensitivity to myriad of foods and medications. Finally, what was called "urethral syndrome" was given a scientific name: interstitial cystitis. I worked through pain and limitations due to infections as well as the knot of pain on the left side of my abdomen and sexual discomfort by reading a lot about my disease and joining self-help groups. Nonetheless, IC has affected every fiber of who am I, which includes claustrophobia if I'm not seated on an aisle seat.
When I was diagnosed with pelvic floor syndrome, Amy Stein was recommended to me. At that time I attended a self-help group where the leader of the group said, "Sure, I know I can lie down on the floor and do exercises but I won't, so I'll just keep taking my meds." I chose "the floor," and a commitment to see Amy regularly for internal treatments.
Amy's pelvic program, diaphragmatic breathing, cognizance of good bladder habits, and spinal-strength and stabilization exercise are my ongoing home treatment commitment to myself. Working at posture, stretching and working out at the gym is my norm. Mostly, Amy's status as my coach remains a priceless mind/body support as I do my best to age graciously and intelligently.
—Joan K. Levine, aging gracefully
On October 15, 2004, my son Joseph, at the age of nine, came to me with a problem. Joseph was not able to hold any food; it was coming up, and whole food was not breaking down. Joseph was not able to make any stool; it would be in him for weeks before he could go to the bathroom. His stomach would swell up.
I took Joseph right to the hospital where they gave him an enema. When that didn't work, they told me to follow up with his pediatrician. I went the next day to the pediatrician who recommended a hospital specialist. This specialist did several tests and gave Joseph MiraLax to start with until the test results came back. Joseph, who had been out of school for over a year, was taking the MiraLax twice a day. When the tests finally came back, the specialist said the issue was Joseph's anal sphincter, but he said the only thing he could recommend was to go to Boston Children's Hospital for bowel surgery. The doctor also said he would soon be attending a conference where he would bring up Joseph's problem; maybe another doctor would have a solution.
I then got a phone call from the doctor saying that Amy Stein in New York City might be able to help Joseph with his problem because of her experience with biofeedback and pelvic floor dysfunction. I went to New York to meet with Amy to see if she could help. She did. I thank her so much for taking this on because I did not know where to turn next. Amy has helped my son so much, and I am so happy that my son is back in school now and was able to avoid surgery. Amy got him to eat food high in fiber and to be more relaxed so he does not tighten up when he goes to make stool. She also has him doing several exercises that help Joseph. I am so happy to say that Joseph has been off MiraLax for two and half years already thanks to Amy. This has been a wonderful outcome for my son.
—Fulgencia Roberts, Joseph's mother
I began having unbearable bladder problems such as burning, frequency, urgency, pain, and swelling that would sometimes leave me desperate and depressed. I also suffered from severe lower back and hip pain although my MRI was negative for any back dysfunction. I was told I might have interstitial cystitis (a bladder disorder) and there wasn't much to do for this. After many doctor visits and many "dismissals" as if I was making up my symptoms, a nurse practitioner suggested I try pelvic floor therapy. I was lucky enough to find Amy through an Internet search. I was a bit skeptical at first, but three months into treatment I had my life back. Three years later, I continue to keep up with the massage techniques and pelvic floor relaxation exercises. I am eternally grateful for Amy and her treatment and knowledge.
—Carla Szulman, 42
In 1995, at the age of 24, after seeing eight or nine different gynecologists, I was diagnosed by one of them with a condition known as vulvodynia. At that time I had never heard of such a thing. I had suffered with some form of pelvic discomfort since the age of 13. The pain back then was intermittent and only bothered me when I was wearing tight jeans, riding a bike, or walking or sitting for long periods at a time. I had a surgical procedure called a partial vulvectomy in an attempt to relieve the pain. Although the surgery helped relieve some of the local pain in the vaginal area, my overall pelvic pain had become constant and unbearable. I was prescribed Elavil, which helped me a great deal. I didn't have constant pain any more, but was still unable to have intercourse or any form of penetration even with a tampon. Over time I developed a bad reaction to the Elavil and had to stop taking it. My pain returned worse than ever before. I then went to a pain management specialist and a neurologist, but both offered no relief. I tried acupuncture, anti-histamines, antibiotics, antifungal treatments, and a low oxalate diet, but none of that helped at all. A new medication called Neurontin came on the market, but offered me only limited relief. At this point, now 32, I was happily married for two years; however, I was still unable to tolerate any penetration, and therefore, unable to have intercourse with my husband.
Then I finally saw a doctor who explained that I had not only vulvodynia, but primary vulvodynia, which means my condition is congenital, not caused by any injury, which would then be called secondary vulvodynia. He also said due to many years of suffering, I had the worst pelvic floor dysfunction he had ever seen. He put me on a medication called Cymbalta to help calm the nerve pain and referred me to Beyond Basics for physical therapy to correct the pelvic floor dysfunction. Within just weeks and after a few minor setbacks, I was better overall than I had been in my life. I attended weekly therapy visits, performed daily exercises, and worked at home with a dilator as well as doing deep breathing exercises and various massage techniques. I live many days either pain-free or with minimal discomfort, and I have even been able to have intercourse finally with my husband. The symptoms that began at age 13 finally subsided after one year of physical therapy treatment at age 35.
—Christa Kozoriz, 35
Amy Stein's therapies gave me back my life. I experienced a three-month block and then a six-month block of chronic pain and urgency. It was relentless. Having gone to several different doctors, having had every kind of invasive test, having tried all kinds of medicines, even self-catheterization, I felt no relief. Finally I was directed to Amy, and after my very first session I felt almost total relief. I am now better than even before having the problem.
Miracles do happen. This is not by chance. It is by the very clear and sensitive work done by Amy. She teaches you exercises that include both breathing and stretching that you do at home. So she gives you your own tools to both alleviate the problem if you begin sensing the beginnings of it again, and also as a preventative. The internal work is a key element for many sufferers.
—Marika Brown, 49
Our son Milo had trouble going to the toilet as soon as he was out of diapers. We thought he was a bit slow in potty training, but at four, he still had a lot of "accidents." We saw a gastroenterologist for over a year, but the drugs did not work. At the same time, all the exams showed that he had no physiological issues. So we started the physical therapy massages, stretching exercises, and biofeedback. It has helped Milo be more aware of his body, to relax, and to stop holding his stools. We have learned to help with the massages and stretching at home. Milo's condition has improved steadily, without the side effects of drugs. He is now five and a half, and after only four months of therapy, he has no more accidents at school, which is a big relief.
—Milo's parents
I am a professional stock trader. I believe years of straining and reading the Wall Street Journal in the bathroom (along with intermittent bouts of hemorrhoids) was more than my pelvic floor could bear. In June 2003, the sell-off in my pelvis started. In a hurry to get on the racquetball court, I strained hard resulting in a sharp pain in the right side of my rectum along with what felt like a firecracker exploding in my left testicle. The pain dissipated in a minute or two. Over the ensuing two to three months I noticed mild intermittent rectal pain, bleeding, and some bowel urgency.
My diagnosis? I had latent trigger points in the rectum, levator, and operator internus activated by anal fissure and fistula. This explains the referred pain pattern in the genitals, rectum, abdomen, back, buttocks, and thighs. The rectal pain was occasionally severe but mostly moderate with an unrelenting quality affecting other parts of the anatomy, making it all the more worse. Specifically, 20 to 30 minutes before a bowel movement, I would feel burning or blunt penis pain, thigh burning, rectal heaviness, low back pain, sometimes all of the above, sometimes a subset. After the bowel movement, the same pain would continue, and on many occasions I literally felt the need to urinate almost constantly for one to two hours. There were some mornings I could not get out of the house without two to three bowel movements; in addition I was now driving to work with a Tupperware container in my car for fear that I would have to urinate. I was also in a panic.
After appointments with two colorectal surgeons, two gastroenterologists, two general practitioners, two urologists, and one osteopath in addition to several anoscopes, a CT scan, two MRIs, and one GI series, the test results all came up negative—except for revealing an anal fissure and fistula. But none of the doctors believed I could experience all this referred pain and urinary urgency/frequency from a fissure and fistula. All but the osteopath! He understood pelvic floor disease and sent me into physical therapy.
I dedicated myself to the exercise programs, massage, relaxation, stretching, nutrition—all the natural therapies Amy prescribes. Thanks to these therapies, I quickly got back to 70 percent of my predisorder state and began to see some light at the end of the tunnel. I even ventured back out onto the racquetball court. Still, I couldn't get back to 100 percent, and Amy and my doctor suggested it was because of the fistula; as a result, it had to be surgically treated.
Back to the natural healing therapies. The pain grew less frequent and less intense. Now, I am 100 percent pain-free and 100 percent cured. I can say my pelvic floor has become a bull market again.
—Mike C., 43
I had a severe case of pelvic floor dysfunction with abdominal, hip, and back pain, and I had trouble with everyday activities like sitting, standing, working, driving, and sexual intercourse. I was finally diagnosed and referred for physical therapy. I was on several medications to help me with the pain, but I wanted to get off them to have children.
I traveled once a week into the city, which took me over an hour. Because my symptoms were so severe, it took several months to gradually get off the meds. Fortunately, my symptoms were improving with each passing month. I took five medications in all: Elmiron, Pyridium Plus, lorazepam, and other pain blocker meds. Once I was off the medications, I conceived pretty quickly.
I continued my PT treatments once a week up into my third trimester. Along with these treatments, my therapist devised an exercise program for me to do at home. It let me keep my muscles intact through the pregnancy. They definitely helped! After giving birth, my symptoms are 90 percent improved. I am told that it's because the muscles are stretched out, which decreases the muscle spasms.
I have mild flare-ups here and there, but I have not been in for a treatment since the birth of my little gemstone, Alexander. I attribute this to the physical therapy and my home exercise program. And, now I have a second child, Clayton. Without my physical therapist's services I would not have my two sons! I have Amy to thank.
—Kristina Kozak, 37