Patient Success Stories
Followup patient after 9 years
I first became a patient of Dr. Echenberg in 2008. At this time, he was my last hope. Starting in my 40’s, I started having consistent pain in my pelvic area, which was sometimes unbearable. This pain interfered with all aspects of my life, from my social life to my married life. Sex became painful, which as you can imagine did not do much for my marriage. Thinking this was a gynecological problem, I sought help with my gyno. I had a laparoscopy which turned out fine. Soon after, when the pain was again awful, I saw another gynecologist who did yet another laparoscopy and told me the problem was with my bladder. I then went to a urologist who examined me and said “your bladder is perfect.”
Yet my pain continued. I then went back to my original gynecologist who happened to be familiar at this time with Interstitial Cystitis and Dr. Echenberg. So as I underwent yet another laparoscopy, he also did a test during surgery on my bladder. I came out of that surgery with all the classic symptoms of Interstitial Cystitis. He immediately referred me to the “IC specialist”, Dr. Robert Echenberg, and I thank God that I went!
My first appointment in 2008 with Doc Echenberg was about 3 hours long, mostly telling him all of my history and him asking me key questions. He told me just from just talking to me that the bladder pain was probably key to my overall pelvic and sexual pain symptoms. At least I finally had validation for the suffering I had been going through all along. Most people think you are nuts and it’s in your head. It was wonderful that this man understood this disease and believed me!
He formulated a plan for me which included bladder instillations (which were painless for me), Physical Therapy, nerve block shots, dietary changes and medication. This took a bit of time over a few months, but I was going to do everything to a T. After 9 weeks, my pain was dramatically better and I continued to improve.
Fast forward to 2017…. I have not seen Doc Echenberg since 2011. My bladder pain is almost non- existent if I follow the dietary rules and make sure I drink plenty of water. Sex is no longer painful. Even though he still wanted to see me every year, I told him that I know he is there when I need him, but I don’t want to take time from another woman who needs him as much as I did.
This man is truly the definition of what a doctor SHOULD be. I have a great respect for who he is and what he does. He listens and wants to help as many women to live quality lives as he can in his lifetime. This is truly his life mission. He should be retired and spending time with his family, but chooses to continue to be there for the many women that need him. We in the Lehigh Valley are so very lucky to have this Doctor so close…. Some travel from states away to see him.
I would recommend to any woman with any pelvic pain that is interfering with your life in any way to make an appointment YESTERDAY! This doctor WILL help you, I promise!
Karen L Lehigh Valley, PA
First visit for woman from Ontario, Canada
I believe that each of us that suffer any of these conditions, pray for a
miracle. My miracle came in the form of 'The Echenberg Institute'.
For the first time in 10 years, I had a doctor that was so knowledgeable,
kind, understanding, compassionate and an excellent listener. I, and my
husband, both knew, we were exactly where we needed to be.
Dr. Echenberg wasted no time in determining my conditions and created a
complete treatment plan for me. Not only did he educate us on these
conditions but, also on the procedures. This even allowed us to "self
treat' on a specific procedure once we returned home to Ontario. I actually
was amazed that some of the treatments I received at the Institute gave me
immediate pain relief. It all felt so incredibly hopeful.
Dr. Echenberg is very open, and actually encourages dialogue with my
Canadian Family doctor. Believe me, this man is driven to help as many of
us as he can. He wants to bring education and understanding, not only to us
suffering these conditions but, to the medical community as well.
I have returned home feeling much more comfortable and very optimistic. Dr.
Echenberg, and his team, Kristen, Ashley and Nora were instrumental in this
new hope that I feel.
Dr. Echenberg, you are an incredible man! I thank you from the bottom of my
heart for taking time away from your own Family, from your sweet dog, from
your playing the violin and from writing your book, to help all of us. I
recognize all of these sacrifices you make and I am forever grateful.
Niagara Region, Ontario
First visit for 25 year old young woman from South Florida with PGAD
In the following paragraphs I will try to do justice to the experience I had in Bethlehem, PA. I can think of no other experience that has been as fulfilling, rewarding, and restorative to my heart and spirit.
Developing PGAD was an especially traumatizing experience for me because I am not a highly sexual person and not sexually active. I was fearful and worried I didn’t know who I was anymore. Also, I have Aspergers and my mind works differently from most. I experience pain and other things on a much deeper level, and therefore my mind took a harder beating than any other part of my body.
The Skype call I had with Dr. Echenberg, I shall never forget. I’m an energy person, and he fit the “good vibes” bill with me. There was one thing he said to me that sealed the deal. It was at the end of the conversation and he said “The most important thing is for you to feel safe.” My mind completely exploded…. I had never heard anyone say something so genuine, heartfelt, and accurate! I kind of paused for a moment, because I realized how vulnerable and scared I had felt not only during my recent suffering, but most of my life.
I didn’t know what to expect when my parents (who I still live with and support me in every way) and I made the trip to Bethlehem. I knew I trusted Dr. Echenberg enough to make the trip, but past that I wasn’t sure. In the Skype call he had a huge emphasis on bladder issues, of which I internally disbelieved. My mom warned me that injections might be involved… and well… at that point I just wanted relief so I was at least considering the idea.
I came from Florida and stayed for 5 days in the area, and visited the office 3 times. The first visit felt like a graduate level class, when I learned about the perfect storm of pain issues that led me here. I nodded and smiled at the mention of my bladder, but still didn’t agree.
In short, this experience has changed my life forever. I had many breakthroughs and learned a lot about myself. - I realized there were a lot of traumatic experiences in the pelvic area in my past that my brain had never forgotten about. The realization of finally knowing I didn’t have to be afraid anymore, and that I had finally found a place that cared about me, was surreal. The psychological healing had begun.
I surprised myself by allowing Dr. Echenberg and his lovely assistant Ashley to inflict quite a bit of pain. The injections (blocks) hurt, but I was given such profound caring and love that the pain only seems like a distant memory.
I will tell you I cried a cry I have never cried before on my last two days spent in Bethlehem. I did not want to go home. I felt as if I were at summer camp and were saying goodbye to all the new friends I met and would not see them for a long time… Perhaps next summer or perhaps never again. I could not stop myself from crying every time I thought about leaving them, even though I knew I’d come back. I have never felt such warmth and love from anyone in my life before. Not from any medical office and especially (yet sadly) not from any relationships I’ve ever had…. Friends, etc.
Dr. Echenberg, his program, and his angelic staff are a dream come true. I’ve always been a fan of Disney, and I can happily say I got to visit all my favorite places and characters for real. I was a kid again flying through Neverland, and I even got to have some wishes granted by several fairy godmothers, or I suppose one amazing fairy godfather. - Who says there’s only mothers?
As crazy as it sounds, I’m thankful to my PGAD, because I would’ve never found Bethlehem and would have continued to live a life of mysterious pain…. Alas, which included a bladder problem. - I quickly apologized to my fairy godfather for not believing him and he didn’t force me to kiss his ring.
The knowledge and intelligence (without egos thank God) that lives and breathes in the office of Dr. Echenberg can only be described as magical. He knew more about me in a few minutes than any doctor I have ever seen in my entire life combined.
I am on his program now, and already feel the results. It’s going to take some getting used to because of the mind-boggling amount of pain I have been ignoring that is now showing itself to me. I am counting down the days I get to see my friends again… I miss them.
Thank you note from patient's husband from Pittsburgh, PA
Dear Dr. Echenberg,
I just want to acknowledge the outstanding care of my wife provided by you and Ashley at the Echenberg Institute. You have provided hope and more importantly real treatment solutions to help my wife with her bladder and genital pain. It is refreshing and greatly appreciated that you have dedicated so much of your time learning about her condition and thoughtfully answering all of our questions.
I wish you and your entire staff at the Echenberg Institute a very happy and joyous Holiday Season!
Story from Carly A. from Toronto, Ontario, CA
When I first met Dr. Echenberg over Skype, I had been experiencing unexplained chronic pelvic pain for over two years. I had seen family doctors, gynecologists, anesthesiologists, neurologists, pain specialists, physiotherapists, chiropractors, naturopaths, and had tried creams, biofeedback, psychotherapy, and drugs to no avail. I was told it was all in my head. I had MRI’s, ultrasounds, and every other test you can think of. I was anxious, depressed, in a great deal of pain, and was out of answers and ready to give up. Although I came to him with great skepticism, anxiety, and depression, Dr. Echenberg provided me with the highest level of patient care I have ever experienced- this is key to the efficacy of his approach. He sat with me for hours to educate me through illustrations, books, websites, and other relevant resources, helping me understand that this knowledge was the first step towards recovery. He diagnosed me by simply listening to me: every feeling I had, even if seemingly insignificant, was important to him, and everything connected once I understood his holistic approach.
After spending all morning (4-5 hours) educating me about pelvic health and how my brain was misinterpreting signals, he did a gentle physical examination, paying attention to the subtleties of my reactions. Through this, I was able to reach a heightened awareness of what was going on with my body, and I finally began to believe that there was hope for me. In order to de-sensitive my ‘dialed up’ nervous system, he gave me nerve blocks immediately. These were effective because he was extremely careful and perceptive to my fears and needs, creating a safe environment in which I could control my anxiety and get the most out of the blocks. He believes in a holistic approach that attacks your pain right away to ‘dial down’ your hypersensitive nervous system with medications, creams, physical therapy recommendations, ointments, and other resources and tools. Dr. Echenberg’s approach and knowledge truly did change my life, as now I function at an almost completely normal level, managing my chronic pain with confidence that I will now and forever be OK.
I could not recommend him and his approach more highly—if you are scared that you are alone or an unusual case, if you have been told its all in your head or that you don't have anything wrong with you, if you are suffering with anxiety or depression, if you are discouraged beyond belief, do not give up as there is help, there is hope, and there is effective treatment. You are NOT alone, you are NOT crazy, and you WILL get better. Thank you Dr. Echenberg for the profound difference you have made in so many peoples lives—we are blessed to have found you!
Recent message from Pittsburgh
I just wanted to give you an update on my condition and thank you for getting me on the right track to getting my life back. I have been doing Myofascial Release since July with the most wonderful therapist. She had called your office a few months ago to let you know that she wanted me to hold off on any further bladder installations or nerve blocks because she was convinced that she could cure me with just Myofascial therapy. I was skeptical at first that it was going to work for me especially because I had treated with 3 different physical therapists with little to no improvement but it has truly been an amazing experience. Most of my days are now pain free!! If you have any patients that are frustrated with traditional physical therapy, please encourage them to try Myofascial Release. I still have restrictions around my bladder so I attend therapy once a week but I am getting closer to decreasing the frequency of treatment. Not only has she helped me with my pelvic pain but she has treated sinus and digestive problems that I have had for many years. Prior to treating with you, I was convinced that I would never have another baby because I was so scared of the pain but now I'm actually getting excited to discontinue medications and try for a baby.
Last year at this time, I thought my life was over. I am so grateful for you and my therapist for giving me my life back.
Story by Barbara G.
I honestly do not know how to begin to tell about the truly amazing care I have gotten from Dr. Echenberg’s program. He is the most knowledgeable, brilliant, kind, caring doctor that I have ever met!!!! I come all the way from New York each month just to have an appointment with him.
Dr. Echenberg has a very unique philosophy and understanding of pelvic pain. He feels that all structures in the pelvis are interrelated. This means that all the muscles, nerves and ligaments in the pelvic region are commonly related to the pain - along with bladder, bowels and reproductive organs. I initially went to him because I’ve had chronic and severe pelvic pain for over 25 years. I’ve gone to numerous doctors in the New York City area, none of whom who had any idea whatsoever how to help me. I came to Dr. Echenberg in such pain, ready to “climb a wall”!!!! Prior to seeing him, I could get absolutely no relief, and found living with it totally unbearable.
I spent over 2 hours with him on my first visit! He taught me so many things about why my particular symptoms were related in my case to the triggering of signals from irritable bowel syndrome (IBS) and interstitial cystitis syndrome (ICS). Along with the pelvic floor muscle spasming, this combination had slowly created my severe symptoms. He told me that everything is connected which I had never known before!!!!
He treated all of my conditions and for the first time in 25 years I got relief from the type of severe pelvic and genital pain that most women would not even dare mention to their doctors.
Anyone with any pelvic problems or problems similar would be giving themselves a rare gift by coming to Dr. Echenberg’s program. His unique and brilliant knowledge and his total dedication to his patients are unsurpassed! I honestly believe that he is not only the smartest, most ingenious, most amazing doctor that I have ever met, but he is also the most gentle, loving and kind doctor also!!!! I call him my “Santa Claus” because not only does he look like him, he also acts like him!!!! Anyone lucky enough to be in his care is truly blessed!!!!
Story by Nicole R.
Dr. Echenberg and the Institute for Women in Pain has been an integral part of dealing with my chronic pain. The very first thing that was helpful is knowing that it's not all in my head, and that the pain is real. The next thing that was helpful is having a better understanding of what pain is, and how it is not just one thing that causes pain. It is the interaction of many things that cumulatively lead to chronic pain. Dr. Echenberg has identified several areas that were contributing to my pain and has systematically treated each item and all of them as a whole. He has also helped to give me the tools to cope with pain including traditional western medicine, more holistic mind/body meditation, stress reduction and relaxation. The entire office and the extended team have been a fantastic support! After 3 years I no longer have pain during sex, my endometriosis pain is reduced and my IBS and IC are under control. I'm also able to better identify what causes pain flare ups and ways to prevent them and if they do occur ways to cope with them and reduce the amount of pain I'm in. I’ve also developed a support system to help me deal with everything. Just knowing that there are other people out there that have the same problems as I have had is such a big help! Don't give up hope! There really is a light at the end of the tunnel and Dr. Echenberg and his team and the other resources at “Bridge for Pelvic Pain” and “Pain Down There” are there to help!
Story by Sharon B.
i would like to share how dr echenberg and his team gave me my life back.
i was suffering for a number of years with severe back and groin pain. a car accident exacerbated the pain areas. seems the pain management doctors had no idea why their "treatments" were barely helping my back and certainly not touching the pain in my groin at all.
my primary dr suggested that i see dr echenberg. he had heard about dr echenberg helping with groin pain that no other dr could help with.
i made my appt, with absolutely no expectations. i thought to myself "why would this dr tell me anything else that i hadn't heard before ?"
well.... i was certainly very wrong, which i am glad to admit ! (hear that honey???!!)
i spent the better part of my morning appointment with dr echenberg and i getting to know each other. i was so comfortable with him, that i found myself sharing many, many very personal things. he brought out things that were possibly related to my pain that had never crossed the minds of any physician i had seen for help.
after a thorough examination, dr echenberg determined that he could help me. and help me he did !
after only a few treatments, my pain was lessened to the point where i could function again. i was able to stay on my feet for a much longer time than before the treatments, and enjoy things that i hadn't for a very long time. i felt like the pain was not taking center stage in my life anymore.
besides the medical treatments, dr echenberg is a wonderful emotional support. he truly understands the pain and suffering we are having.
there are no judgements, no comments of "it's probably all your head"
(anyone ever hear that one and want to smack the doctor ? and wish him just ONE day of the pain you are in ????)
only wonderful support from dr echenberg, and his great staff.
thank you, dr e for giving me back my life.
Story by Maureen
My Story: MG
My story is just beginning with Dr. Echenberg but I can honestly say that this is the most comfortable I have felt with a Dr. since beginning this long journey with interstitial cystitis. I have been to several Doctors (Primary, GYN, Urologists) over the years complaining of pelvic pain. I have had ultrasounds, CT scans, MRIs, cystoscopy, etc. all in my quest to find out why I am in so much pain and how to improve my symptoms and my life. Each Doctor only wanted to treat their specialty and none even thought to treat my whole body and my ongoing pain until I found Dr. Echenberg. In my first appointment he spent over 3 hours with me, talking to me, educating me and most of all listening to me. I finally had hope. I am so thankful just to be heard and I am looking forward to continuing my journey with him. He "gets" it! He calls us his "Warrior Girls" and I intend to win this battle with his help!
Story by Val - a long distance patient
I have suffered with IC for many years. Four years ago I began having strange pelvic pain symptoms that were embarrassing, such that I could not talk about my symptoms to anyone. I knew in my head that the strange painful sensations had to be misfiring nerves. This is all I knew. Fast-forward to April of 2013. I was watching an ICA sponsored webinar featuring Dr. Robert Echenberg speaking on Chronic Pelvic Pain. He spoke briefly about persistent genital arousal disorder and I finally had a name for my unspeakable pelvic pain symptoms. I took a leap of faith and made an appointment with Dr. Echenberg at The Echenberg Institute for Pelvic and Sexual Pain in Bethlehem, Pennsylvania.
My husband and I drove 800 miles east, as we live in western Illinois, to The Echenberg Institute. We were immediately welcomed with kindness, warmth and smiles. Dr. Echenberg and Kristen met with my husband and I for several hours, educating us about chronic pelvic pain, basic pelvic neuroanatomy, pain processing pathways, and “the perfect storm,” resulting in my persistent genital arousal disorder. Dr. Echenberg did a thorough pelvic exam all the while continuing to educate my husband and I about pudental neuralgia, vestibulitis, vulvodynia, and persistent genital arousal disorder. Dr. Echenberg’s genuine concern and compassion during this time was unlike any gynecologist or urologist I have ever been to. His eyes spoke of empathy for myself, and his other patients with chronic pelvic pain. His sheer knowledge of how to treat chronic pelvic pain surpasses any doctor I have ever researched. My HOPE was reignited after being burnt out for years and years.
My treatment plan consists of medication, pudental nerve blocks, trigger point injections, Botox, bladder instillations, yoga, relaxation, pelvic floor physical therapy, and an occasional phone call to Kristen.
I am approaching my one-year anniversary with Dr. Echenberg and I am feeling remarkably better. I now travel to the Echenberg Institue every 3 months. As a long distance patient of Dr. Echenberg I can verify that it is worth all the miles we travel to get there. My husband and I feel blessed to have found a doctor of the caliber of Dr. Robert J. Echenberg.
Story by Amrita - she requested that her name be identified
I owe my life to Dr. Robert Echenberg for bringing back life to me once again after a suffering of almost 20 years.I traveled all the way from India to National Institute of Health, Maryland, Washington D. C to get evaluated for the continuous pelvic pain that could not get cured after seeing several physicians in my country. I was diagnosed with endometriosis in India. But the treatment could not give me relief from pain. I will be always indebted to Dr. Pamela Stratton from NIH who referred me to Dr. Echenberg. An extremely loving person along with a superb medical eye, he treated me for 2 months. He did bladder instillation, nerve treatments, medicine and physiotherapies. It's been more than 2 years now I feel wonderful in terms of my pelvic pain that originated from interstitial cystitis, vulvodynia, neuralgia, pelvic floor myofacial dysfuction and so on apart from endometriosis.
I wish more and more people around the world could get this kind of specialized treatment and get rid of the tremendous pain that they will never be able to speak out. Being an international patient I never found Dr. E (that's what all those who love him a lot call) less attentive to my emails. We could overcome geographical distance and I got best possible treatment that too in quite an affordable expenses (particularly because the amount of resources I had to waste in last 20 years). I would be happy if even a single person gets benefited reading this review and reach people like Dr. E at the earliest in their respective lives.
Dr. Amrita Panda
Centre for the Study of Developmental Disability
Department of Psychology, University of Calcutta
Story by Leslie
Finding Dr. Echenberg and seeing him was the best thing I could have ever been blessed with. The pain that I have suffered with (silently) for so long and then the embarrassment of some of the other issues, all stemming from the pudendal nerves, have been so unbearable and I didn't know what to do for such a long time. Finally, I acquired enough courage to seek treatment from doctors, as it increasingly grew worse. I went to see my local doctors in El Paso, TX, but no one knew how to treat or diagnose my conditions involving pelvic pain: pudendal neuralgia, Persistent Genital Arousal Disorder, Interstitial Cystitis, Etc.). I live in the southwest and have seen numerous doctors, who were all at a loss as to how to properly treat me. Finally, I found Dr. Echenberg, in the far northeast, via an in-depth online research.
Dr. Echenberg has a wealth of knowledge in pelvic pain, in which I have not seen in any other doctor, yet he is very humble and willing to educate any and every doctor, patient, therapist, etc. around that is willing to listen. This area of medicine has been greatly neglected by the medical society so patients are struggling to find the right doctors to go to for treatment. In my personal experience, the physical medicine doctors pass it on to pain specialists, pain specialists pass it on to neurologists, neurologists pass it on to OB/GYN doctors, OB/GYN doctors pass it onto urologists, urologists pass it on to the OB/GYN doctors and the cycle is vicious. There are very few that know or have studied much regarding the pudendal nerves.
When my husband and I went to see Dr. Echenberg, he actually scheduled three hours, for our first appointment, to spend solely with us and went through everything in detail. He explained in depth all that I was experiencing and could find exactly where the pain was with trigger point treatment. His knowledge and educational session with us was so amazing for my husband and myself, knowing that what both of us were dealing with is "normal," considering the situation. Dr. Echenberg validated the spouse's side of what they are going through as well, which was great. It took a huge weight off both of our shoulders, knowing that there is hope, there are treatments and we are not alone. All the pain, embarrassment, agony, etc. that I had been facing could now be re-arranged and worked on. There is HOPE!!! Praise God!
Dr. Echenberg and his assistant, Kristin, have maintained close contact with me, even though I am unable to see him physically as often as I should. The constant validation, support and education that Dr. Echenberg and Kristin provide, through all that I face with the pain/etc., is what truly encourages me so much and keeps me pressing forward. They are definitely a blessing from God. I pray that more doctors start educating themselves on these pelvic pain conditions, as more patients start stepping forward and sharing their "hidden" pain.
God bless & best regards,
El Paso, TX
Story by Anne
When I was first referred to Dr. Echenberg for serious sexual pain, I never imagined that help was actually available, especially for a woman of 70. I was overwhelmed by the compassionate care and thoroughness of the diagnoses that were discovered. My sexual and pelvic pain issues were based on years of trauma, abuse, stress, and multiple surgeries that I never fully connected to my current problems. The educational component helped both my husband and myself to understand the issues we were facing together. Through several treatment protocols, including nerve blocks, bladder instillations, and additional sessions with a specialist in physical therapy trained in pelvic pain...I am learning to see my body as a whole unit of body, mind and spirit and to carry through on the treatment prescribed in lesser and less frequent sessions at this point. Having my husband's support each step of the way was vital and I certainly recommend others to get the help you need now instead of waiting 70 years as I did. Pelvic pain is not "in your head." It is a treatable problem that should be taken care of by specialists who understand and care. Anne
Story by Bonita
At a time when most healthcare professionals are being scrutinized for terrible bedside manner...not showing personalized care to the patient...abusing a patients' time in the waiting room and in general just showing an "I don't care" attitude...in comes Dr. ROBERT ECHENBERG and his carefully chosen team of office professionals.
Firstly....the thought that ANY doctor will spend more than ten minutes with you in an exam room is quite absurd these days. When I heard that Dr. Echenberg spends a couple of hours with you on your first visit I was blown away. And then when I saw that he takes the time to actually show you your own anatomy and where your pain is emanating from I knew I was in the right place.
We all come to this office with a problem that we don't want to discuss in the first place. PAIN DOWN THERE? WHERE? There...we whisper quietly. No need to whisper because Dr. Echenberg and his highly trained and compassionate staff knows exactly how to handle this. Their knowledge gets put to work as they diagnose your symptoms and come up with a proper plan to treat your pain. Yes, I was a bit hesitant about the nerve blocks ..but only the first time because Dr. Echenberg and his trusted assistants made it very easy to become very much at ease. With each and every visit the pain became less and less.
My only disappointment now is that I have relocated out of state and will not be able to visit Dr. Echenbergs office any longer.
For those of you who are still in the area and for those of you who have to travel a slight distance please do yourself a great favour and visit Dr. Echenberg so that your pelvic pain and sexual wellness is taken care of in the proper manner.
Story by Therese
In 2002, following 2 years of suffering, I was finally diagnosed with Interstitial Cystitis. I spent the next 10 years traveling from Long Island, to Pittsburgh and Philadelphia in search of help, having minimal success. At the recommendation of a friend I sat down with Dr. Echenberg in November of 2013 to discuss my condition. As a health care professional myself, I was overwhelmed by the passion and dedication this man possesses. We immediately began a treatment regimen consisting of weekly nerve block injections, bladder treatments, Physical Therapy and Botox to relax the pelvic floor.
I am approaching my 1 year anniversary with Dr. Echenberg and my symptoms have improved significantly. I am not pain free but the pain that lingers is manageable and under control. Dr. Echenberg and his staff are extraordinary to say the least and I truly feel blessed to have found them.
Story by Missy
I have had endometriosis & interstitial cystitis since I was 22. I saw several doctors & hospitals for pelvic pain over the last 16 years. The past doctors recommended the following surgeries: a partial hysterectomy, 3 colonoscopies, 3 laperoscopies, and a bladder distention, and I was put on several different medications, and inside therapy with 2 different type of machines, but all these different types of surgeries, machines, and medications did not solve the pelvic pain. My father started to see Dr. Echenberg for his intersitial cystitis, and he started treatment right away with Dr. Echenberg. I scheduled an appointment with Dr. Echenberg, because my father was very impressed with him and his staff. Dr. Echenberg and his staff found pelvic pain issues that I did not even know I had after 16 years of dealing with this problem. Wow!!! That impressed me from the start. Dr. Echenberg and his staff sat down with me and discussed a treatment program of medications, bladder injections, a change in my diet, and physical thearpy for several months. I have finished my bladder injections and physical thearpy for several months now. I am continuing to take the medications and the change in diet is very manageable. I hardly miss the other food. I have some physical thearpy that I do at home, and this will continue for the rest of my life. I feel 10x better, and I can do a lot of things now without pain that I have not been able to do in a long time. Dr. Echenberg and his staff are wonderful. They listen to thier patients and care about thier patients. The knowledge that Dr. Echenberg and his staff have on all the different subjects relating to pelvic pain is remarkable, and they actually take the time to explain each step of treatment and the knowledge of your pelvic pain. Thank you, Dr. Echenberg, and your staff for treating my pelvic pain and caring.
Story by Joan S.
I have had Interstitial Cystitis for 7 years. I'v been to numbers of doctors and no one could help me. I was even turned away. I was so depressed that I lived in my bedroom and cried alot. I did not want to be here and I wanted to die, but I could not leave my family behind. I have a wonderful husband and 3 very special sons that I love very much. My husband was always there when I needed him and he would say "never give up hope". It took me 7 years and the 7th doctor to help me. I'm so very grateful that I was finally referred to Dr. Echenberg. He has been the best doctor for this horrible nightmare that I have been going through for so long. Now I am doing alot better and have my life back. For those out there with these problems, know that there is help here and don't give up hope.
Story by Betty S.
There were years of suffering before I met Dr. Echenberg. Doctors I saw throughout my life tried to help but they had no knowledge of IC. I would receive comments from my family, accusing me of being a hypochondriac. I did not know where to turn. Once I found a doctor who finally knew what I had but had no bedside manners and made me feel hopeless and helpless.
I spoke to a friend whose granddaughter has IC and was seeing a doctor with whom she had a good outcome. I made and appointment and for the first time in almost 8 years was given some hope of help. Dr. A gave three choices and I chose installations - one a week for 9 weeks. They worked and for the first time in years I had no pain. This lasted for 1 year and then I started with pain again. Unfortunately, Dr. A had moved to the Poconos. I would gladly have followed her but when I spoke with her former nurse practitioner, she recommended Dr. Robert Echenberg in Bethlehem.
Dr. Echenberg is one of a kind. From the first moment I met him I knew that things would be better for me. What a kind human being he is. Would you believe that such a busy physician takes 2 ½ hours to talk to you and find out all about you? He not only listens but understands when you speak about the pain you have and all the suffering you have been through. His kindness is very soothing and you know that if it is in his power he will help and if not he will exhaust all means to find you the help you need. Dr. Echenberg has been very helpful in my case. He prescribed Elmiron and Gabapentin for the past 3 years. I have had no real complaints.
When you have IC, and I have it with ulcers, you appreciate the fact that there is a Dr. Echenberg in this world. Someone whose only desire is to help all those who are suffering. When I first went to see Dr. Echenberg, his staff was very impressive. Those of you who have suffered as I have can fully understand that a Dr. Echenberg is a godsend. If he can help me, perhaps he could also be of help to many if not all of you who seek his help.
Story by S.S.
There is hope!!! Last September I was on vacation and I thought I had a urinary infection. When I got home my doctor gave me medicine for a urinary infection. I took two different antibiotics and wasn't any better. I went to my gynocolgist who gave me more medicine and some creams. This went on for months. (I felt like no one was hearing what I was saying). By this time I felt like razor blades were cutting me every time I would move and like I was on fire whether I moved or not. All this time I was working full time. Couldn't wait to get home to get comfortable. I finally went to another gynocologist who said he didn't know how I could stand it but he really didn't know what to do. More creams and more medicine. After about another month he suggested that I go see Dr. Echenberg. Dr. Echenberg told me he could help me, he LISTENED to me and he has helped me. I went to him in March and it is now August. I am able to live my life again. I'm not 100% yet, but so very much better.
Story by Audrey S.
After 12 years of searching for a diagnosis/ cause of the aching, burning, cramping, pain, and fatigue in my legs that left me with chronic pain and disability following a hysterectomy, I was referred to Dr. Echenberg. What a discovery and blessing! His evaluation and treatment plan includes injections, medications, and physcial therapy for many conditions contributing to my pelvic pain. I have received weekly physical therapy sessions since December, 2011. Dr. Echenberg has been treating me since January, 2012; he has been administering injections to my pudendal and illioliguinal nerves, and trigger point injections. I elected to receive Botox injections in an effort to break the cycle of muscle clenching, etc. in my pelvic area as my progress was limited. I received Botox injections in April, 2012 from Dr. Echenberg. One month after the Botox injections, Dr. Echenberg, my physcial therapist, and myself noticed a significant improvement in muscle relaxation, continued pelvic symmetry betwen physcial therapy treatments, and decreased discomfort to my lower back and coccyx. The benefits of the Botox continue as evidenced by my physical therapist increasing the time between treatment sessions and Dr. Echenberg increasing the time between injections/ visits. I am optimistic the Botox will be beneficial for me for many months. However, I know I will repeat this treatment if needed as I already received significant benefit fom it.
Story by Ashley M.
At the age of 15 I started having very painful and irregular periods. As a young teenager I assumed this was normal and everyone experienced it. Over a span of 5 years the pain got worse and I had to stop playing sports and felt like the pain was taking over my life. I went to a number of doctors and specialists hoping to get an answer. Each doctor would order scans and blood work, and every test would always come back negative. I celebrated my 18th birthday with a colonoscopy and endoscope, thinking it was gastro related. Again nothing was found. I celebrated my 19th birthday with a laparoscopy where I was diagnosed with endometriosis and had that tissue burned off. Thinking that was the reason of my pain I thought I’d begin to get my life back but the pain was still there. My mom never gave up on believing in me and thanks to her she found Dr. Echenberg online. Dr. Echenberg truly has changed my life and I am forever thankful. He met with me for 4 hours my first visit and immediately diagnosed me with chronic pelvic pain, vulvodynia, IBS, pelvic floor myofascial dysfunction, & vestibulodynia. He explained to me that my nervous system wasn’t functioning properly and believes it all started when I experienced a back injury from playing basketball when I was about 14 years old. Dr. Echenberg prescribed a lot of different medicines and recommended that I find a physical therapist that specializes in pelvic pain. I found one close to my house and with 3 months of treatment I can honestly say I feel like a different person. Pelvic exams have always been extremely painful for me and my follow up exam with Dr. E was the first exam in 5 years where I didn’t have any pain. I am pleased to say that I just recently celebrated my 20th birthday pain free. Dr. Echenberg and his entire team are amazing, and I am blessed to have found him.After 5 years of pain, I finally have my life back.
Story by Anna's mother who brought Anna (age 20) to see us here in Pennsylvania recently (July 2012) from their home in Florida
I just wanted to write and say how much we appreciate all the time, effort, care and compassion you took to help Anna. You not only diagnosed what was causing her pain, but also made sure we both understood exactly what was happening inside her body to create it. Our visit to see you has energized Anna and changed her outlook on her future. I didn’t realize before that she was actually experiencing some depression. I thought her glum demeanor was because of her extreme fatigue. I know we have only been back home a couple of days, but I can see happiness in her again and an expectation that her life ahead is going to be a fabulous one. Because of her complete trust in all of you, and the feeling of power you gave her by instilling knowledge and understanding of her conditions, she has no doubts at all that she is going to be just fine. I also find it extremely interesting that Anna’s fatigue has already diminished to a noticeable degree-before we have even begun treatment. It is as if lifting the cloud of mystery on what is wrong with her body has lifted a heavy burden that she has been carrying around for a very long time.
Thank you all so very much for the life changing gift you have given to my daughter-and to me.
PS I can’t stop being amazed at how right you are about how important it is for the patient to completely understand what is happening in her body-and how that knowledge can have a positive physical effect on the patient. I keep thinking about those brain MRI images of the patients before and after they were educated on what was causing their pain. I believe if we had done a before and after MRI of Anna’s brain, we would have seen just as dramatic changes.
Story by Paula
After years of pain and countless doctors I have finally found a doctor that asked the right questions and listened to what I have to say. I had given up hope on ever being pain free again. My first visit with him was educational and it was uplifting to know that there was help for the pain. Dr. Echenberg is an amazing doctor.
Story by S.P.
Its been about two years since I started going to Dr. Echenberg to be treated for Pudendal Neuralgia. Before I saw Dr. Echenberg, I got so hopeless not knowing why I was having this pain and what it is related to, even after going through more than 6 doctors who all told me that the pain is more in my mind than in the pelvic region. I got to know Dr. Echenberg through my Physio Therapist. At first I was very hesitant to go to him due to my experience with previous other doctors. After I met him the first time, I felt that it was one of the best favors that I ever did to myself. He is the only doctor that I've seen who spends 2-3 hours of time in the first meeting who really listens and understands what the patient and his family is going through to make a detailed case study and the treatment plan. He started my treatment with Nerve Blocks and medicine which has kept my pain under control. Although at times, when it flares up, he is very patient to know all the things that I did differently for it to flare up and changes his treatment accordingly. Last but not the least, about his staff. They are very understanding and nice. They always make you feel very comfortable. It's really worth it for me to drive an hour and half each way to get treated by Dr. Echenberg.
Story by M.F. (Male patient)
Dr. Echenberg is noted for helping women in pain. What I found out after years of suffering, is that he helps men too. I suffered with chronic pelvic pain for 31 years. Countless doctors stated that I had prostate problems that they could not solve. Last year, I did have my prostate removed for cancer, but my pain got worse. After six months with a pain specialist trying narcotics, nerve pills, muscle relaxer, spinal blocks, neuro stimulator and Trigger point injections, nothing worked to reduce my pain. I was referred to Dr. Echenberg about two months ago. After a three hour meeting and exam, I found out that I had IC and CPP. Dr. Echenberg designed a program for me consisting of nerve blocks, physical therapy, diet changes, medication, and relaxation therapy. I am pleased to report that this program is working to reduce my pain and treating the IC. I would encourage any man with so-called prostate problems to consider Dr. Echenberg for a proper evaluation. I mentioned to him that my daughter has IC and she is now under the care of Dr. Echenberg.
Story by Kate W.
I came to Dr. Echenberg after years of troubling pain and discomfort. My pain worsened in August of this past year, and after being passed around, prodded, poked, put through test after test, I finally was recommended to see Dr. Echenberg. He and his staff treat you with utmost respect, care and gentleness that is much appreciated with an issue like pelvic pain. I began seeing Dr. Echenberg in December, and have done almost a complete 180 with the help of his staff, and the proper medication. He was the only person who could figure out what was wrong, give me the right treatment solution, and see me week after week to monitor the progress. Although his office was more than a 1.5 hour drive one-way, it was worth every trip. I finally have my life back, and can't wait to get married in June and live a healthy, happy and pain-free life. Thank you to Dr. Echenberg, Kristin and the rest of the staff at the Institute for Women in Pain!
Story by Marilee
For several years I experienced syptoms of tingling, burning and pain in my thighs and perineal area. It was most annoying when I wore stockings and jeans and while sitting for a long time. I consulted my gynocologist and was diagnosed with a vaginal infection and was put on various treatments with no significant results. I saw several other physicans, a dermatologist, neurologist and still the symptoms persisted. My gynecologist referred me to Dr. Echenberg. Dr. Echenberg diagnosed the problem as vulvar vestibulitis and started a course of treatment. I felt results quickly and continue to after three years on medications continued visits with Dr. Echenberg. I feel the issue has been resolved. As an RN, I have found Dr. Echenberg to be one of the most caring and understanding and competent physicians I have encountered. I feel so relaxed with him and his staff who demonstrate genuine care for each patient. I am so lucky to have found this doctor and actually look forward to my visits.
Story by Anita M.
I came to see Dr. Echenberg in September with terrible pelvic and bladder pain. Dr. Echenberg showed me nothing but kindness and care. In six months I've never felt better in my life. He has taken away the pain and I continue to improve. He has been a life changer for me and as long as he will have me I'm always going to have him as my doctor.
Story by Kelly N.
By the time I saw Dr. Echenberg I had seen 7 specialists for my pelvic pain, had a laparoscopy, vaginal scar tissue release, numerous MRI's, ultrasounds, xrays and was at the end of my rope. I still had the horrible pain day in and day out and no one could give me the answer as to why.My existance was focused on the pain and I was miserable and anxious. After meeting with Dr. Echenberg for the first time I felt that I could trust him to help me. It was such a relief to have a caring doctor who spent so much time with me educating me about the complex pelvic nerves and muscles and how the brain was involved in the whole pain cycle. He gave me books to read and a name to my pain: pudendal neuralgia. It has been a long road and I am now pain free.I am so thankful to Dr. Echenberg for his dedication to women's pelvic pain. He is a wonderful caring physician.
Story by Lauren
After spending years being told by various physicians, that they could find nothing wrong with me, insinuating that the pain was in my head, and being told some pain is normal for being a woman, I came to Dr. Echenberg broken both physically and mentally. I learned what I was lead to believe, that this pain was my normal and was how I would spend the rest of my life, was false. I could and would get better. I did not have to live with this pain and all of the trappings that came with it. Over 2 years later, I am almost totally pain free. What does remain is manageable and my quality of life is supremely better than I could have imaged it ever could be prior to walking through Dr. Echenberg’s door. Please know that you don’t have to live with the pain, you can get better, and most of all you are not alone.
Story by GM
I was referred to Dr. Echenberg after being misdiagnosed with yeast infections for over 10 years. The first visit was a bit overwhelming for me (in a good way)as the doctor was so thorough and provided me with so much information and assistance. I was diagnosed with intercystial cystitis and given information on dietary constraints as well as several meds. Physical therapy and other treatments were also recommended. I wanted to start slowly and not start all of the treatments/therapy all at once. Dr. Echenberg and his staff were very understanding and worked with me to develop a treatment plan that I was comfortable with. I saw tremendous improvement almost immediately after starting the meds and adjusting my diet. Finally finding a doctor who cared and getting a correct diagnosis changed my life. With a correct diagnosis, a little education and medication, and a few dietary changes, I finally have found relief from my pain!
Story by Patty H.
For years, I suffered excruciating pain with intercourse and pap smears. A nurse practitioner at my gynecologist's office recommended that I schedule an appointment with Dr. Echenberg. I waited 2 years before scheduling an appointment as I mistakenly thought that no one could help me. I was so wrong. I finally decided that I had to do something about the pain. It was one of the best decisions I ever made and cannot believe I waited so long to schedule an appt. On the day of my appt I met with Dr. Echenberg for two hours. I was astonished that he would take that much time with me. He spoke with me about my pain, my medical history, my symptoms, traumas I had experienced in my past and how I managed the pain. He did a thorough pelvic exam and and then met with me for another hour describing why I had CPP (Chronic Pelvic Pain). Dr. Echenberg advised that I had Interstitial Cystitis which was causing inflammation of my bladder. He prescribed a course of treatment that included medication, bladder instillations, counseling, dietary changes and follow up visits with him. He is one of the most compassionate, caring, intelligent physicians and persons I have ever met. In my opinion the empathy and genuine concern he has for his patients is as therapeutic as the treatments themselves. His assistants and office staff are kind, caring and highly skilled. I started my treatments 5 months ago and am a completely different person. I didn't realize how compromised my sense of well being had become until I started to feel better by following the personal treatment plan prescribed for me. I'm feel shiny and new. For the first time in years I have hope. Thank you so, so much Dr. Echenberg and your staff for putting me on this path towards for overall wellness. You are a blessing in my life.
Story by Dale A.
I spent the last excruciating six years searching for a doctor who would help me, listen to me and understand how much pelvic pain I have been in. My story started out with " you just have a ruptered cyst" somehow 6 years later my ruptured cyst then turned into, " You have endometriosis". I then found myself hearing the words that I needed a total hysterectomy. Two months after the hysterectomy my pain came back, full force. I had countless MRI's,x-rays,ultrasounds,ct scans, laparoscopies and three very difficult and danderous major surgeries. I was told my endometriosis was still active, causing this unbearable pain that I had for years- 24/7. I spent thousands of dollars seeing endo specialists,neurologists,GI specialists and urologists. I was even put on a breast cancer chemotherapy drug to wipe out,destroy any estrogen I had left in my body. I haven't been able to work, be the Mom that I needed to be or have any kind of life. I was giving up, giving in to endometriosis. I was told(by my old obgyn), as I was doubled over in pain and crying in front of my gyno that there was nothing more that can be done because my more "rare" form of endo is incurable. Twenty doctors later, I found Dr.Echenberg. I have never come across a doctor more compassionate,more educated docor who wanted to understand my pain and where it was coming from. He explained the intricate nerve system and musles involved in the pelvic floor. It really wasn't the endometriosis causing my pain!! He sat with me for hours(something I have never experienced before in a doctor's office) Also,meeting with his nurses who are extrordinarily compassionate.The experience brought me to tears because I knew the day I met Dr. Echenberg and his entire staff that I not only finally found the doctor who was going to truly help me end this cycle of pain but that I am going to get my life back and there IS hope and my two daughters finally have Mom back. He gets it,he understands PAIN, and the astounding connection between mind and body. He is nothing like the thousands of specialists out there who don't have the time for you. If you suffer from any kind of pelvic pain I hope you meet with Dr.Echenberg-make the time for yourself because it has already been a life changing experience for me.
Story by A.F.
When my rheumatologist suggested I see Dr. Echenberg I was skeptical but agreed to schedule an appointment. I've spent a lifetime with chronic pain including fibromyalgia, irritable bowel syndrome and migraines, enduring countless medications, medical tests, doctor appointments and various medical treatments. The extensive paperwork that I completed prior to my visit made me realize that Dr. Echenberg was on the right track - seeking my medical history and treating me as a whole patient. Shortly thereafter he spent 3 hours meeting with me, even extending an invitation for my husband to join us. The length of the appointment and the wealth of information I was provided with was greatly appreciated. I remember sitting in Dr. Echenberg's office, finding it difficult to even sit comfortably. He patiently explained to me that I had Interstitial Cystitis, Vulvodynia, Piriformis Syndrome and a variety of other chronic pelvic pain conditions. While it was a relief to put a name to the pain, I explained that I only hoped not to feel any worse. These and my other chronic pain conditions already interfered with my ability to work and disrupted other aspects of my life. Dr. Echenberg promised that with treatment I would actually feel better! We began treatments which included dietary changes, bladder installations, trigger point injections, physical therapy and Elmiron. Not long after, I began to feel better. Over the past year I have continued the treatments, and my overall health has improved. Dr. Echenberg and his staff have been patient and supportive throughout the process. I'm grateful to have his treatment and care, and for the improvement in health it has provided me.
Story by Robert F (male patient)
I spent two years seeing mumerous doctors and specialists, including three ER visits and a week in a psychiatric hospital. I was told that my chronic pelvic pain was all in my head. Being told time after time that my pain was not real, I felt helpless and above all hopeless that anyone could or would understand or treat my pain. During this time I could barely function. I was unable to work, nor could I find enjoyment in my life. Even my family did not understand. I was finally refered to Dr. Echenberg. During my four hour initial evaluation, Dr. Echenberg took the time to listen intently to my symptoms and asked me lots of questions. He assured me that my pain was indeed a medical condition and explained the cause of the pain. Dr. Echenberg was the first physician to belive me. He and his staff treated me with respect and devised a plan of treatment. Within two months I was able to return to work and have been able to resume many of the activities I enjoyed before my pain began. I have not been "cured" but I realize that hope, belief, understanding and a future does exsist. Dr. Echenberg has saved my life. Thank you.
Story by Anne Marie
Since my hysterectomy in June 2008, I have been searching literally all over the United States for someone to help me with the resulting disabling pain from multiple damaged nerves in the pelvis. I finally found Dr. Echenberg and he is the very first doctor who took the time to look at the entire picture of what was going on with me and actually listened. I no longer suffer from the fear and panic that there is no one to help me and I now have a partner in this journey to get me back to a productive life. Other than my primary doctor, I have NEVER met such a caring health professional with such extensive knowledge and willing to communicate personally. I thank God every day for him! I would highly recommend him for any problematic female issues.
Story by D
Dr. Echenberg is doctor number 6 in my attempt to find a reason for my pelvic pain. My previous doctors simply told me my tests were normal & they were done helping me, but I was sick with a pain that wouldn't go away. I felt like a ball in a pin ball machine bouncing from one doctor to another. These doctors may have been trying to communicate but I wasn't in their loop.
I found Dr. Echenberg on-line when I searched for pelvic pain, and e-mailed his office. I got a response & they suggested an appointment, which I set up.
Dr.Echenberg's office sends out a questionaire to fill out so you're ready for you first appointment. He spent 2 hours with me. Going over my history, what might have triggered the pain and then, shows pictures of all the structures in the female pelvis & explains that the tests that previous doctors have ordered just look at the organs in the pelvis. Dr. E taught me that there is so much more in the pelvis - muscles, nerves and ligaments that usually are not considered or tested. I got an exam in the area of my problem & he discovered that my pelvic floor muscles were very tight and the nerves going through that area are beginning to spasm and cause pain, So we're starting with medicine & physical therapy to relax these muscles and take the pressure off the nerves.
Long term chronic pain without answers made me on edge with my family, made me withdraw from my friends, become less active, discouraged and made me wonder if it was all in my head & I even considered a psychiatrist. After talking with Dr. Echenberg & his staff, you'll know right away this is his specialty, He has empathy and talks with you not at you, and at the end of the appointment, it's like I've been given hope back, the weight on my shoulders has been lifted. It was great to hear finally from someone, " I believe you".
His 2 hour appointment, was a blessing too, you don't get that much time with any doctor so when I left another doctors office, and was told there's nothing wrong. I got discouraged & my mind would just imagine a bunch of junk, and create fear, but after 2 hours with him a lot of fears just disappear.
When You leave Dr. Echenberg's office, you'll have a lot more understanding on what's happening in your body and you'll know that there is a game plan to help correct the problem.
It was so worth the 1 1/2 hour drive to his office. I appreciate him so much.
Story by Christine
Dr Echenberg is the most wonderul doctor I have ever met. He is a pelvic pain specialist and took almost 3 hours with me for my first appoinment. He is a firm believer in treating the patient as a whole. He is wonderful for the treatment of all health problems that cause pelvic pain. He is treating my interstitial cystitis as well as endometriosis, vulvuar vestbulitis and pudendal nerve issues. If you have pelvic pain and are within driving distance of Dr. E I highly recommend him. I drive over 3 hours round trip to see him and it is worth every minute.
Story by Carolyn S
Dr. Echenberg specializes in female pelvic pain, and deals with many interstitial cystis patients. It's not that easy to find a specialist in this condition, and especially not one as dedicated as Dr. Echenberg.
He diagnosed me (after a nine year search for a cause for my ongoing pelvic pain) and has treated me with bladder instillations, medications, and recommending PT and counseling. He is always willing to try something new if one idea isn't working.
Dr. Echenberg gives TWO HOURS to each new patient in order to really understand where the patient is coming from, and still have time to explain what he plans to do next and why. He treats each patient like an equal and is never condescending. He is kind, gentle, and deeply caring.
Everyone in his office staff is polite, friendly, and helpful. If you are a female with ongoing pelvic pain, you can't do better than to see Dr. Echenberg. I drive 70 miles each way for him, and it is completely worth it.
Story by CK
After several years of doctors, tests, procedures and not feeling any better I almost gave up. After being sent for physical therapy, my therapist told me I should be seeing Dr. Echenberg. After a few years of going to many doctors I couldn't stand the thought of one more doctor. I couldn't believe the doctor that would save my life was only a half hour from where I lived. I am now 2yrs pain free and have not had any instillations since my first round of them. I have my life back and can enjoy all the things that had been taken from me. Yes! I am one of you that was ready to take my own life. It is amazing how far pain can push us. I thank God everyday for Dr. Echenberg. I truly believe if I hadn't found him I would not be writing this letter today.
Story by Cheryl P.
I was referred to Dr. Echenberg in April of 2011 after TWO years of constant pain & suffering which was not getting any better. My gynecologist DID notice the redness in my vagina, but had no idea what is was & just how painful it was until I screamed & cried when he inserted a speculum. I came to Dr E a very broken person (age 47) with a pain level which exceeded any previous injuries I've ever experienced. Being athletic, I've suffered my share of broken bones, bruises, and blown knees so I know a thing or two about pain and let me tell you, I have a very high threshold for pain. Filling out an extensive questionnaire seemed overwhelming, but I soon realized that these people really needed to know some things in my past to get an idea of what was happening to me. I took that leap of faith, never regretting that I knew there would be no overnight cure or magic pill--but a series of medications & physical therapy that could direct me to having my life back! I was diagnosed with what we called the "trifecta," lichen planus, vulvar vestibulitis & IC (Interstitial Cystitis). Taking prescription drugs was daunting (no one could believe I wasn't on any) and I was a bit more "relaxed" and "tired," but I knew because I was in so much pain, they had to get that under control. I had 10 bladder installations which really helped, but I would advise against any sports activity (I had SEVERE PAIN because I tried to play softball just 2 hours after --not smart). But it wasn't a problem with my job--and I work in route sales which means a lot of time in your car! It's January of 2012 and I've stopped the oral meds except Elmiron (google it for a 4 mo savings coupon!) which I'm told I'll have to take for another year at least. I've started taking more supplements and still going to physical therapy weekly and I'm feeling 100% better than I did in April. I'm fortunate to have an understanding man in my life, but I owe a debt of gratitude to Dr E & his fantastic staff for helping me. I also highly recommend buying an Astar coccyx cushion & using Cetaphil soap. It's a journey, but it does get better, believe me. One day at a time.
Story by J.M.
I was 15 when my symptoms first started. I had extremely painful periods, frequent false positive UTIs, and migraines at first. It took me two years and over ten physicians to finally find some answers. I remember being told it was all in my head; that I was too young to have for anything "serious" to be wrong; that this was normal menstrual pain and I needed to get used to it. On and on came the discouraging and insulting comments from insensitive or uneducated physicians. In 2005, at age 17, I was diagnosed with endometriosis and interstitial cystitis. I tried a few different medications, bladder instillations, and adhesion removals without relief. Finally, the gynecologist said there was no way I could still be in pain and that he didn't know what to do with me. My urologist at the time said my pain was gynecological so he couldn't help me. I felt helpless and hopeless for years with inadequate care visiting multiple different physicians looking for answers. In December of 2010 my parents purchased Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships by Susan Bilheimer and Robert J. Echenberg M.D. as a Christmas gift. Reading this book I began to feel less alone and lightbulbs started to click for me. I felt like I understood my body a little better and was encouraged to keep looking for answers. I contacted Dr. Echenberg's office and set up an appointment even though his office is about 8.5 hours from where I live. Dr. Echenberg and his staff have been kind and supportive in addition to being extremely knowledgeable and willing to help. Dr. Echenberg is an amazing, dedicated man and I am so grateful to have found him. If you are searching for answers and feel helpless, don't give up! You are not alone, it is not just in your head, and there are solutions to help manage the pain and symptoms. Please, don't suffer in silence anymore!
Story by Amy
Prior to seeing Dr. Echenberg, I suffered from pelvic pain for 7 years. I went from doctor to doctor, only to be told, "There's nothing wrong with you." or "It's all in your head." I felt like a freak- the only person on the planet with this problem. After seeing the 5th doctor, I had given up. A few days later, one of Dr. Echenberg's patients visited that same doctor, described the same pain I had and explained that Dr. Echenberg had made a huge difference. When the doctor called me about him, I was skeptical. Upon seeing his website, I knew this time it would be different. Dr. Echenberg believed I was in pain. He put together all the pieces of the puzzle as to why I had this pain. After 4 weeks of physical therapy and medicine, I already noticed a huge difference. Three months later, I am happy to report that (though I know this is not something that will ever be cured) my pain is managed! If you are experiencing pain, you are not alone and there is hope!
Story by M.J.
I'd like to write about my experience with Dr. Echenberg for anyone reluctant or concerned about starting his recommended treatment. I understand your frustrations and discouragement as I, too, have been to countless doctors who often dismissed my symptoms.
My reason for coming to see him was not typically what I read about. For the past 20+ years, I have suffered from hyper arousal. This constant genital arousal has no relationship to having sex, rather, it plagued me day and night. Because it was worse in the evening, I stayed awake and having sex didn't help diminish the symptoms at all. Often, sitting has been uncomfortable too. One neurologist I saw even told me having this genital sensation all the time would be "pretty good."
I found a doctor in my area who charged me $1,500 (and who didn't take insurance) and spent limited time with me, explaining next to nothing. What he prescribed for physical therapy actually made things worse. The only good result was that my physical therapist recommended trying Dr. Echenberg. Because of the distance to his office from my home (3 1/2 hours one way), I waited a while before making an appointment.
But I am so glad I did. My first visit with him was fantastic. Not only did he spend over three hours with me, he invited my husband to sit in too. I found out I had multiple problems including chronic pelvic and sexual pain disorder for decades, vulvodynia with long-term vestibulodynia and bilateral pudendal neuralgia, interstitial cystitis, and severe pelvic floor hypertonic myofascial dysfunction. He prescribed several medications, a change to a low acid diet, physical therapy, and seeing a psychologist.
For the first time I felt a glimmer of hope. I drive to Dr. Echenberg's office every other week for bladder instillations, nerve blocks and trigger point injections. And through the treatment, my bladder is much improved and I've had some days where the hyper arousal symptoms have subsided. I've come to understand that all of my problems are inter-related and I need to be patient since they are so long-term.
THere are few doctors with the dedication to chronic pain treatment that Dr. Echenberg has. I feel blessed to have found him and encourage anyone wondering if he is "just another doctor" to consider his recommendations for treatment.