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Christa, 35 years old – Vulvodynia

“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. I had never heard of such a thing. I had suffered with some form of pelvic discomfort since the age of thirteen. 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 on a constant basis and became unbearable once again. I then went to a pain management specialist and a neurologist, but both offered no relief. I tried acupuncture, antihistamines, antibiotics, anti-fungal 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 came across a vulvar specialist, who explained that I had not only vulvodynia, but primary vulvodynia, which means my condition is congenital, not caused by any injury. 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.”

Annie, age 24 when symptoms began – Vulvodynia and Vaginismus

“I was diagnosed with vulvar vestibulitis in 1996, while living in Washington, DC. Out of nowhere, having sex was incredibly painful. After sex, it took hours for the stinging in my vagina to go away and to walk without pain, as my lower back would start to go out each time. I saw two doctors in DC. The first prescribed an antihistamine. At the time it was thought that VV was an allergic response. That medication didn’t help. The next doctor prescribed a low dose of amitriptyline, to decrease neuronal hypersensitivity. That didn’t help either. That same doctor believed that ultimately, multiple injections of interferon into the vestibular gland were the most effective treatment.

Not too thrilled about having needles stuck in my vagina, I hesitated. His response: “You’ll spend years searching for the right cure. Trust me, you’ll be back. This is the only thing that works.” Right…

Fast forward to summer 1997. I am now living in San Francisco, where I couldn’t find a doctor to administer the injections. No one seemed to believe that such an invasive approach with so little research to support it was the way to go. It was there that I found a urologist who was prescribing a consistent and frequent course of intravaginal myofascial release, biofeedback and external physical therapy. It was a full-service operation that included acupuncture; he also had a psychological counselor and yoga instructor on hand. He believed that vulvodynia was best treated holistically. 

During my initial consultation, I started to faint while being evaluated and became hysterical. Apparently, I had vaginismus as well. I was very much closed for business. It took me a while to get on board with the doctor’s approach. Why? Would you want a grandpa putting his finger in your vagina 2-3 times a week and sticking a probe in there to see your pelvic floor muscle response on a TV screen? This just couldn’t be happening. I believe they call it denial. Fortunately, the physical therapist administering the bio-feedback gave it to me straight after a few months of my begrudgingly showing up, cancelling, not facing what was really going on. She said: “This isn’t about the opening of your vagina. This is about you and the way you live your life. If you want to get better, you need to fully commit to this treatment. And it can’t end there. You are going to need to make major changes, because your whole being and perspective prolong the pain cycle. Essentially, you must chill in every respect if you are going to beat this.” Fast forward a year, during which I took her advice – started coming to the center three times a week, began yoga, acupuncture, and taking life less seriously – and got totally better. Before moving again, this time to New York, I had a sexual relationship without pain. It felt like a miracle that took a lot of work to achieve.

In New York, I clenched up again and the VV returned. It was almost a year of serious searching before I found someone who did intravaginal myofascial release and was willing to really listen to what I had experienced in San Francisco.

The listener I am referring to is, of course, the author of Heal Pelvic Pain. Within a few hours of knowing Amy Stein, it was obvious to me that she had the instinct, talent, empathy, and guts to bring to women like me what they were so desperately lacking – a holistic center to treat vulvodynia. Within the year, Amy accompanied me to San Francisco, where she met my doctor and his staff, and so generously held my hand while he stuck a really big needle into my pudendal nerve. Within a few months I was feeling much better and the pain during sex was gone.

Ultimately, what I’ve learned is there are no easy answers or quick fixes when it comes to chronic pain. But there is most definitely hope, if you are willing to allow for it and commit yourself to change.”

Allison, wife of Paul, 61 years old – Pelvic Floor and Bowel Dysfunction

“I am writing to praise Tina Cardenia who has been treating my husband Paul for pelvic floor dysfunction for a year and a half. Over that period of time, Paul has improved immeasurably and is both physically and emotionally a totally different person than he was when he first came to Beyond Basics for care. Before that time, he had been suffering for more than two years with severe bowel dysfunction and a feeling that there was a tennis ball sitting at the base of his pelvis. He had given up most of his usual activities and was quite despondent, if not clinically depressed. We went to several doctors, none of whom understood the problem nor were able to help.

I spent a lot of time trying to understand his condition. I researched his symptoms and came to the conclusion that he was suffering from pelvic floor dysfunction. I tried to find a doctor in the New York metropolitan area who treated the condition, but all I came up with was gynecologists.

I read several books about pelvic floor dysfunction and finally came upon Amy Stein’s “Healing Pelvic Pain.” That’s how I found out about Beyond Basics.

I cannot begin to tell you what a difference Tina has made in Paul's life. She understood the cause of his problems and had an extensive menu of strategies to help him. In the beginning, Paul came to see Tina twice weekly even though we live in New Jersey and it was hard for us to come to the city so often. As he began to improve, we came only weekly and then every other week. With every visit he improved. Tina offered encouragement mixed with lots of good suggestions and, most important, an effective exercise regimen.

Paul has improved so dramatically that we now come to see Tina only once a month. He no longer has bowel issues and the "tennis ball" has disappeared. He is able to walk farther and do many things like shopping and cooking that he had been unable to do for many months. Most important, he has a whole new outlook on life. In fact, he recently stopped taking the antidepressant that he has been taking for the past two years.

Paul continues to do the exercises Tina recommends for him to do at home. She is always coming up with new ideas, and everything she suggests helps.

We cannot say enough good things about Tina. She is intelligent, knowledgeable, creative and empathetic. We know credit also goes to Amy and the Beyond Basics regimen and training. Thank you to Tina and Beyond Basics for giving Paul his life back.”

Robert – an MD and a patient, 49 years old – Chronic Prostatitis and Pelvic Pain

“Amy and her team at Beyond Basics Physical Therapy are the best!

About a year ago, I had severe genital pain that was beyond anything else I had ever experienced. It was unrelenting and unbearable for the entire day, with no relief. Like many men with prostatitis and Chronic Pelvic Pain Syndrome (CPPS), I was initially misdiagnosed and simply given antibiotics. Fortunately, I am a physician and knew immediately to search elsewhere for better answers.

I met with a specialist who is considered one of the pioneers in CPPS and he immediately recommended physical therapy. In fact, one of the biggest advances in the past 10-15 years is the use of pelvic floor physical therapy for CPPS. Unfortunately, he didn't know of any physical therapists closer to where I live. I found a couple on my own, including one at a satellite center affiliated with a major university teaching hospital in Philadelphia. I got better, but still didn't get the full result I was hoping for. I had read Amy Stein's book, “Heal Pelvic Pain,” and watched her DVD, “Healing Pelvic and Abdominal Pain.” I knew that is where I needed to be if I wanted to get back to feeling like myself again.

All of the staff at Beyond Basics Physical Therapy are top notch. It was obvious from my first consultation, that they were experts in treating CPPS. It was like nothing I had encountered before. They took time to listen to all of my concerns and gave me a detailed examination. Immediately following, I was given a full hour of physical therapy, addressing points of muscular spasm. Even after my first treatment, I went home symptom-free for a couple of days, which gave me hope that I eventually would get completely better. I was also given a set of exercises to do at home to help me heal. I always looked forward to my next appointment so I could learn more and feel better. It took almost a year, but I am now virtually symptom free! 

Thanks to Amy and her staff I live a “normal” life again. No restrictions with sports, going out with family and friends, or whatever comes my way. It was one of the best decisions I made to get my life back again and really enjoy living life to the fullest.”

Jaime, 29 years old – Painful Bladder Syndrome

“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 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 after consuming alcohol or foods that were acidic. I was convinced to have a very painful surgical procedure called a cystoscopy with hydrodistention. 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, hydrocodeine 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 specialist 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. He diagnosed me with pelvic floor dysfunction and surprisingly did not prescribe me more medication; instead he urged me to see a physical therapist at Beyond Basics Physical Therapy, 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 Stein 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, she insisted that I come at least once a week. The sessions were painful at first because my pelvic floor muscles were so spasmed and weak. But when I went home, I felt so much better. Amy also gave me exercises and relaxation techniques to do at home. It was a lot of work but worth it. Physical therapy is not a quick fix. It is a long process but it works.

Amy performed biofeedback and myofascial therapy during my sessions. At first, I didn’t feel any difference. But as I continued the sessions and did my stretching and core strengthening exercises and relaxation techniques, my symptoms finally started to reduce. Every session, Amy massaged my lower back; this was my favorite part because my lower back hurt so much. During biofeedback my muscle strength tested at 4 the first time and are at 20 right now. Eventually, I started seeing Amy every other week, then once every three weeks, then once a month, while simultaneously weaning off all of the medication.

If I feel a bladder or pelvic floor attack coming on, I will practice the 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 waking up 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. My pelvic floor muscles are so much stronger. Physical therapy has given me my life back. It was definitely a long process but I have made so much progress and am living my normal life again.”

Joan K. Levine, aging gracefully – Painful Bladder Syndrome

“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 my left side and sexual discomfort by reading a lot about my disease and joining self-help groups. Nonetheless, IC has affected every fiber of who I am, which includes claustrophobia if I'm not seated on an aisle seat.

When I was diagnosed with pelvic floor syndrome, Beyond Basics Physical Therapy 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 my physical therapist regularly for internal treatments.

The 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, my therapist’s status as my coach remains a priceless mind/body support as I do my best to age gracefully and intelligently.

Six years ago, when I wrote my book, “The Eve Cycle,” I had recently begun my physical therapy program. I was able to sell my first print by actively marketing the book myself. Clearly, the ability to curb frequency (which I owe to my therapist’s input) was part and parcel of my success.

I believe a book about what pelvic floor physical therapists do is an awesome, valuable medical contribution; what's more, it demonstrates the merits of physical therapy as a vehicle toward a healthier life.”

Irina, 47 years old – Painful Bladder Syndrome

“I have had bladder problems for years. At the beginning, it was just frequency and urgency, but at some point, the symptoms turned into horrible endless pain. I changed my urologist who, I believe, tried all existing antibiotics on me in spite of the fact that no infection or bacteria were ever found in my urine or biopsy sample. My new urologist guessed that it was interstitial cystitis and prescribed Tofranil which I’m still taking to relieve the pain. Through all these years of suffering, in addition to the periodic bladder pain, I started having permanent discomfort in my lower body – abdominal area, lower back, and legs.

Going out of the house became torture. Unfortunately, I could not afford to quit my job and stop working. So, I stopped going to the movies, theaters, museums, and seeing my friends regularly. Despite a halt of a regular life, I knew that I had to do my best to stay in shape and hung on to some exercises – swimming and yoga. When my lower back pain became severe, I decided to see an orthopedist. I got lucky in choosing a doctor who told me that my pain was being caused by a pelvic floor dysfunction and sent me to Beyond Basics.

After the first visit my pain gave me a few hours’ break! I started following my physical therapist’s recommendations and my frequency decreased at least twofold. She explained to me in great detail what happens to my pelvic muscles when by bladder “strikes.” This helps me stay in control and prevent the worsening of my symptoms. I understand it’s going to take a long time to teach my pelvic muscles to work the way they should. But I’m sure I’m headed in the right direction. Although interstitial cystitis is incurable, getting rid of the pelvic floor problem significantly improves the quality of life one can lead with this condition. I’m very happy that Beyond Basics Physical Therapy exists.”

Ben, 32 years old – Painful Bladder Syndrome

“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 MD describe pelvic floor disorders and interstitial cystitis. I thought to myself, “That’s it, that’s my problem.” I promptly made an appointment him and, after testing me for interstitial cystitis – it was negative – he informed me that I had pelvic floor muscle disorder and referred me to Beyond Basics Physical Therapy.

I met with Amy, who made an assessment and started me on a program of stretching and manipulation. Most importantly, she educated me about pelvic floor issues, their causes, and treatments.

After three 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.

Amy Stein and the other physical therapists at Beyond Basics in New York City are the ultimate professionals in this field. They are compassionate and extremely knowledgeable. Having worked through this problem, I understand the feelings of isolation and hopelessness. There is hope and help.”

Kerry, 26 years old – Severe Pelvic Floor Dysfunction, Postpartum Pelvic Pain, Prolapse

“Beyond Basics gave me my life back.

After a traumatic pelvic floor injury incurred during the birth of my son, I was suffering from severe pelvic floor dysfunction. I was unable to fully empty my bladder. I had nerve pain and irritation. Moderate prolapse. I had trouble walking, working, functioning in ways big and small, public and private – as a human, much less as a mother. I thought I would have to spend the rest of my life incapacitated, simply because I had given birth.  

I came to Beyond Basics over a year after the delivery and worked with a number of physical therapists. Let me start right away with the good news – I am so much better. I used to read these testimonials late at night when I was feeling hopeless. If you are too, please hear me – I got better. The team at Beyond Basics worked through a very complex physical situation which had turned into a complex emotional situation. They were my rocks, between in-person sessions conducted with the utmost professionalism to at-home programs that allowed me to take agency over my body and my life. They never hesitated to refer me out to other physical therapists within the group with complementary specialties or to help me navigate the world of healthcare providers and treatments that make up this little niche of pelvic floor recovery. I would have been lost without them. The wonderful office staff make me feel welcome and like family. The other therapists I have seen, even just a few times, always say hi and ask how I am. There is only care here, and knowledge, and thoughtfulness.

When I went to my latest checkup, my doctor told me, whatever you’re doing in PT, keep doing it. It may take time, but these are your partners – you’ll get there.

With my deepest gratitude and recommendation,”

Fulgencia, mother of Joseph, 9 years old – Pediatric Pelvic Floor Dysfunction

“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 Beyond Basics Physical Therapy in New York City might be able to help Joseph with his problem because of their experience with biofeedback and pelvic floor dysfunction. I went to New York to meet with Amy Stein 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; we’ve been coming for over a year, 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 a great deal; he loves the one with the yoga ball. 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. I would definitely recommend Beyond Basics for anyone with a similar problem.”

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