physical therapy endometriosis

Bladder Pain Syndrome – Interstitial Cystitis

9415 views

Symptoms of pain related to the bladder, urinary urgency and/or frequency affect up to 12 million Americans and can range from uncomfortable to extremely debilitating. These symptoms can affect both men and women, although they are more common in women. Although these symptoms can be difficult to treat because there is no particular treatment that works for a majority of individuals, a range of treatment options do exist. With patient, physician, and sometimes other healthcare providers working together to explore options, relief from bladder symptoms can be achieved.

Symptoms of bladder pain syndrome – interstitial cystitis include recurring pelvic pain, pressure or discomfort. Pain may worsen with specific food or drinks, and with bladder filling. Pain can be specifically located in the bladder, urethra, or vagina, and/or more generally present in the lower abdomen, pelvis, and lower back. Pain with sexual intercourse is a common symptom. Urinary frequency (the need to urinate frequently) is often present and can be extreme, with some patients needing to urinate up to 60 times per day. Urinary urgency (a strong need to urinate) can also be present. This can also be accompanied by spasms.

Interstitial cystitis, the original name for this disease, had fairly strict diagnostic criteria that did not encompass all patients with this similar set of bladder symptoms, so other names have been proposed including painful bladder syndrome (PBS), bladder pain syndrome (BPS), and hypersensitive bladder syndrome. Some doctors now use the name interstitial cystitis to encompass all patients with bladder pain symptoms not from other causes (such as infection), and some doctors use the newer nomenclature such as bladder pain syndrome. Some doctors use the term interstitial cystitis to refer only to a subset of patients who have ulcerations in the wall of the bladder called Hunner’s ulcers. These differences can be confusing to patients.

Diagnosis of BPS can be challenging, since patients can present with a wide variety of symptoms, and the symptoms often overlap with other pelvic diseases such as endometriosis and adenomyosis. BPS is usually diagnosed through the clinical signs and symptoms of the patient, and by ruling out other conditions such as bladder infection and bladder cancer. In the past, cystoscopy with hydrodistention (slowing filling the bladder with fluid, then looking at the bladder wall using a camera scope), and the potassium sensitivity test, have been used to diagnose BPS, but these tests are no longer recommended because they can trigger additional pain in patients, and they are sometimes negative even in the presence of disease.

There is no cure for BPS, and treatments are directed at symptom control. The American Urological Association (AUA) recommends trying treatments in order from least invasive to most invasive. Treatments required for any individual may vary over the course of time, and sometimes multiple treatments at once may be used. The first line of treatments include education about normal bladder function, and self-care strategies to help manage bladder pain. An important self-care strategy for many BPS patients is to avoid dietary food triggers. There are some foods such as citrus, vinegar, tomatoes and coffee that are common triggers in individuals whose bladder pain is affected by diet; however, it is important to identify your own individualized food triggers, since they may be different for different individuals.

The second line treatments recommended by the AUA include manual physical therapy, and certain medications– both oral medications, and medications delivered via catheter to the bladder. Manual physical therapy should be performed by a pelvic floor physical therapist trained in manual therapy techniques, and Kegel exercises should be avoided. Oral medications include amitriptyline (an antidepressant sometimes used to treat pain), and antihistamines. Intravesical medications (delivered by catheter to the bladder directly) include heparin, lidocaine, and DMSO.

Third line treatments become more invasive, and include cystoscopy with hydrodistention, and surgical treatment of Hunner’s ulcers if found. Fourth line treatments include surgically implanted electrical nerve stimulators. Additional treatment possibilities include cyclosporine (an immunosuppressive drug), Botox injections, and surgery to remove the bladder. These options can have significant side effects and complications, so they are only undertaken when no other treatment strategies have worked. Pain management strategies should be used at all stages of treatment, and include over the counter and prescription painkillers, as well as stress management techniques and physical therapy.

Individuals with BPS may be more likely to have certain other diseases as well. It is highly associated with endometriosis, with some studies suggesting that up to 80 percent of patients with endometriosis also have BPS/IC. Individuals with allergies, migraines, or asthma may have a greater chance of developing BPS/IC. BPS/IC is also strongly associated with irritable bowel syndrome, and is also associated with vulvodynia, fibromyalgia, chronic fatigue syndrome, and lupus.

Recent research indicates that different pain syndromes often occur together in the same patient, often as well as other systemic diseases. As the relationships between various pain syndromes and different diseases become better understood, this may lead to new and better treatment options that are able to treat the whole individual rather than trying to treat each separate syndrome, in patients who have multiple diseases. One common frustration in patients with multiple diseases is that each specialist only looks at and treats their own clinical area, and then patients themselves have to coordinate care between specialists and different approaches, which may sometimes even conflict with each other. Many patients would welcome the change to treat and understand their body as one system, with the help of specialist health care providers who understand the relationships between different diseases and different parts of the body. Unfortunately, this type of integrated care delivery is currently only available to patients with certain life-threatening conditions such as cancer or heart disease, and only in the most advanced hospital systems. For now, patients with BPS/IC have to take charge of managing their own way through their treatment options.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

This article was published previously on Hormones Matter on September 11, 2014. 

Share

Endometriosis, Adhesions and Physical Therapy

11450 views

Almost a year ago, I had a surgery that was supposed to fix all of my health problems, not create a whole set of new ones. My endometriosis symptoms had become severe and debilitating—I was on medical leave from work, wasn’t much help to my family, and couldn’t go out with friends. I searched out the best endometriosis specialist in Canada and scheduled laparoscopy excision surgery, a procedure where all of the endometriosis the surgeon can find is cut out. Although excision surgery is not a cure, it is one of the only endometriosis treatments that offers many women long-lasting relief from symptoms.

My excision surgery seemed, on the surface, to have been successful. My endometriosis had been extensive. It was found on the walls of my abdomen and pelvis, on my left ovary, on my large intestine, and on my left ureter. In addition, I had extensive adhesions (bands of scar tissue) that had bound those organs together and attached my intestines to my abdominal wall. My doctor had removed all the endometriosis, cut all the adhesions, and removed my left ovary and tube, which were badly damaged by adhesions and were unsalvageable. I cried when I heard the news, out of relief. My severe symptoms were explained, and the cause of them had been treated. My doctor had characterized my surgery as long, difficult, and complicated, but ultimately successful. I felt that once I healed I would have a very good chance of feeling much better.

If someone had told me that the next year would bring another surgery, several ER visits, several hospitalizations, a new diagnosis, and a new set of chronic problems that rivaled my old symptoms in severity, I might have questioned their sanity. I went home from my surgery sore, but very relieved that it was over with. I didn’t know that my battle with adhesions was just beginning.

Adhesions are scar tissue that forms inside the body in response to injury. Some adhesions are thick bands, and some are more diffuse and filmy. They can glue organs together and to the abdominal wall, which can interfere with the function of the organs that are affected, and cause pain. Many organs need to move in order to be able to function: for example, the intestines need to be able to move to push food through, and the ovaries and Fallopian tubes need to be able to move for the ovary to release an egg and have it move down the tubes into the uterus.

Surgery is a major cause of adhesion formation. One third of patients are readmitted to the hospital an average of 2 times in the 10 years following open abdominal or pelvic surgery, for conditions related to adhesions. The most common problems caused by adhesions are chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and inadvertent bowel injury in subsequent surgeries. Although minimally invasive laparoscopic surgical methods are superior to laparotomy (open surgery) for many reasons, laparoscopic surgery does not necessarily result in fewer adhesions.

Surgeons typically underestimate the incidence and complications caused by adhesions, and information about adhesions is provided in only 9 percent of surgical informed consent forms. Adhesions occur in 70 to 95 percent of patients undergoing gynecologic surgery, and post-surgical adhesions are cited as the primary cause of bowel obstruction. Adhesions are responsible for over one billion dollars annually in health-care costs in the U.S.

After my excision surgery, I had complications due to an undiagnosed bleeding disorder (see my story here) that resulted in another surgery 7 weeks after the first. Adhesions were once again found and cut during that surgery, but despite that, about 6 weeks after the second surgery I started to experience symptoms that eventually turned out to be adhesions again. The conundrum of adhesions is that surgery is both a treatment, and a cause. Multiple surgeries can increase the number of adhesions, although there are some surgical techniques that minimize adhesion formation to the extent possible. My problem with adhesions was likely exacerbated by my undiagnosed bleeding disorder, since meticulous control of bleeding during surgery is one important way to minimize adhesion formation.

By four months after the second surgery, my symptoms were once again greatly affecting my quality of life. I had severe pain in the left lower pelvic area that prevented me from doing many activities. I had severe lower abdominal pain and nausea after eating, even when eating only small meals of food that should have been easily digested. When my intestines would get partially blocked due to bowel obstruction, the pain was intense and I couldn’t eat without throwing up.

The pain I would get after eating would come on suddenly and intensely. It was waves of sharp, stabbing, knifelike pain that would leave me doubled over. I was afraid to eat while I was out of the house because sometimes I would end up on the bathroom floor, unable to move without throwing up due to the intensity of the pain. I started to hate food and avoided eating whenever I could.

My doctors (a general practitioner, an endometriosis specialist, a gastroenterologist, and a pain management doctor) all agreed that I likely had a problem with adhesions, but they all also agreed that little could be done about it. Unanimously they said that although I might get better with another surgery to cut the adhesions, I might also get worse. I was offered the typical array of medications, including antispasmodics to decrease the intestinal pain I had, antidepressants, which can sometimes be helpful for visceral (organ) pain, and the fibromyalgia/anti-seizure drug Lyrica.

After doing some research, I decided that a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage Physical Therapy) was probably my best hope. I travelled to Miami twice for treatment with an amazingly compassionate and skillful physical therapist. I was amazed on my first trip to notice a big difference in my symptoms fairly quickly—on my second day I was able to walk up a small hill and a set of stairs without any pain, something that hadn’t been possible since the problems with adhesions had started. I also started being able to eat a little more normally. By the end of the second trip, my symptoms had improved very significantly.

I still have to watch what I eat quite carefully, and even as I write this I am recovering from another partial bowel obstruction. I don’t think my intestines will ever be the same as they were before my surgeries; they may always be affected to some extent by adhesions. However, I have to keep in mind that the gastrointestinal symptoms I had due to endometriosis on my large intestine prior to surgery were also very unpleasant and affected my quality of life. So fear of adhesions is not a reason to avoid surgery, but it is important to be aware of the potential for problems. I was lucky that my doctors recognized the problem as adhesions very quickly, since many doctors do not. And I was also fortunate to receive physical therapy treatment that finally, a year after my excision surgery, has allowed me to feel like I am really getting my life back.

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

This article was published originally on Hormones Matter on July 22, 2013.

Share

Pelvic Therapy for Endometriosis, Adhesions and Sexual Pain

7614 views

While doctors disagree on the exact cause of endometriosis, theories include heredity, environmental problems, or retrograde flow of endometrial tissue from the uterus, out the fallopian tubes, and into the body. Whatever the cause, most doctors agree that endometrial implants and adhesions (internal scars) are frequently found together. Adhesions are tiny but powerful structures that act like straight jackets wherever they form, causing pain or infertility – or both; because adhesions do not appear on any diagnostic test (x-ray, MRI, CT scan), they can elude even the most savvy physician. Thus, our patients often tell us “my doctor says he can’t find anything” or even “he says it’s all in my head.” The truth is, the pain is exactly where you are feeling it.

Endometriosis adhesions
Endometriosis (left) and adhesions (right) can cause pain and infertility.

Endometriosis Pain

While there is no consensus as to the cause of endometrial pain, increasing evidence from the studies published from our clinic and elsewhere indicates that the pain is caused, or significantly increased by adhesions – internal scars that form where endometrial tissues attach to underlying structures. In the past, the only method to treat endometrial adhesions was surgery. However, physicians and their patients are stymied by the fact that, no matter how skilled the surgeon, surgery to decrease endometriosis or adhesions tends to cause more adhesions to form as the body heals from surgery. A large retrospective study of post-surgical outcomes [Digestive Surgery, 2001] reported that between 50% and 100% of all pelvic anAdhesion Formation after Surgeryd abdominal surgeries created additional adhesions.

Thus, while the surgery may help some women, the relief may be temporary; recurring, and sometimes greater pain can appear as the body forms internal scars to heal from the surgery. Some evidence indicates that endometrial implants tend to recur with greater frequency at the surgical site.

 

Endometriosis and Pelvic Pain

In our own published studies, we have come to understand that the pelvic, abdominal, hip or back pain often associated with endometriosis comes from the pull of tiny but powerful cross-links, the building blocks of adhesions. Where endometrial implants appear, adhesions tend to bind the foreign tissue to the underlying structure. As the tissues swell with each menstrual cycle, the adhesions pull on the delicate underlying structures, causing pain. Our manual physical therapy appears to detach the adhesive bonds so endometrial tissues can expand and contract naturally, without pain from the adhesive bonds.

Post therapy release of endometriosis adhesionsHormone medications such as birth control pills can stop the menstrual cycle totally. Since the endometrial tissue does not swell, it does not pull on the adhesions and pain is relieved. However, if the woman wants to have a child, she has to stop the birth control pills and the pain returns. Thus, the medications address the symptoms, but not the cause of the pain.

 

 

Pain with Sexual Intercourse: Definitions and Therapies

Our patients tend to report three different types of intercourse pain:

  1. Pain with initial penetration
  2. Vaginal pain during intercourse
  3. Pain with deep penetration

The body creates adhesions (tiny internal scars) wherever we heal – whether due to an infection (e.g., bladder, bacterial, yeast, STD), a trauma (abuse, fall onto the tailbone or perineum), or a surgery (abortion, C-section, laparoscopy) – or due to inflammation from the endometriosis itself. These adhesions can be small enough that they form between muscle cells, causing pain when your partner pushes on them.

Vaginal pain and adhesionsBecause of its unique position in the body, a woman’s vagina is subject to numerous traumas in life. Falls onto your bottom cause adhesions to form. Once your body heals, the adhesions remain there for life, causing tiny but powerful straight-jackets that can cause pain when pressure is exerted on them – such as during intercourse.

With the warm, moist environment, the vagina tends to be a perfect place for bacterial infections. Again, adhesions form as the first step in the healing process – to help contain the infected area so your body can heal more easily. Once you have taken antibiotics or are otherwise healed, the adhesions that formed remain in the body for life – unless removed by a skilled physical therapist who specializes in work in this delicate area.vaginal pain and adhesions 2

Women who have pain with deep penetration say “it feels like my partner is hitting something,” – and he is! The usual cause for this deep pain is either a stenosed (adhered) cervix caused by adhesions following a healing event (shown in the drawing below), or a forward tailbone – caused by a fall, trauma, abuse or surgical scars.

Physicians are generally stymied to cure intercourse pain. Their prescriptions generally consist of any of a combination of therapies that address the symptoms, but not the cause. Physicians may suggest:

  1. Abstinence
  2. Pain relievers
  3. De-sensitizing drugs

These approaches do not help a woman get the pleasure or function (desire, lubrication, orgasm, pain relief) that should be hers. Many of our patients feel their lives deeply impacted; some are concerned that the pain will impact or even end their relationship with their partners.Sexual penetration pain adhesions

Fortunately, there is now a non-surgical, drug-free treatment for endometriosis pain. The Clear Passage Approach® has been examined for treating pelvic, menstrual and intercourse pain associated with endometriosis for decades. In a recent study update in the Journal of Endometriosis, this therapy was found as effective as surgery – even a year after therapy.

Besides studies in that journal, studies on this work are published in WebMD’s Medscape General Medicine, and housed in the U.S. National Library of Medicine (see study results below). In all of our studies, the treatment is a manual physical therapy that can feel like a deep massage. A brief look at the results are provided below. Learn more about treatment for endometriosis pain.

 

Improved sexual function after manual therapy for adhesions

Pain Decrease and Function Improvements from a study on the Clear Passage Approach, Published in WebMD’s Medscape General Medicine, 2011.

We are glad to provide 30-minute phone consultations to interested women, at no charge. Simply visit the website www.clearpassage.com.

Join us for our next posting on endometriosis and Infertility.

Useful Website Links

Share

Endometriosis and Adhesions: A Story of Hope

3713 views

Sometimes the holiday season causes us to feel more reflective than usual. As I was on my way home from my work holiday party, I was struck by the difference between this year’s holiday party and last year’s. Last year I spent the party surreptitiously downing painkillers and trying to look happy. I was barely recovered from the two surgeries I’d had for endometriosis a few months prior, and the complications that ensued, and I was already starting to suffer from the problems that I would eventually realize were caused by adhesions as a result of the surgeries.

This year I spent the evening enjoying the party, socializing, eating and dancing, without any pain at all. It was actually the first time I’d been able to enjoy a holiday party in several years, because somehow every year my endometriosis always seemed to spoil the fun. It still feels a bit unusual to me to be without pain—it’s like being shoved from the middle of a noisy crowd into a soundproofed room—the absence of sound/pain becomes extremely noticeable. Although I’m not completely free of pain every day, or even most days, it’s remarkable to me that it can happen at all, after many years of daily pain to some degree.

They say it takes a village to raise a child, and I think the same is true for a patient with chronic disease: it takes a team of people, health professionals and support people, to help make the patient’s disease manageable. I have been helped by so many amazing people along my journey, and I am quite sure that I would not be at the point I am at today, if not for the help of all of them together.

For me, one of the first steps in getting better was laparoscopic excision surgery, to treat my endometriosis.  In addition to being an extremely skilled surgeon, the doctor who did my excision surgery was truly an unusually dedicated and compassionate doctor. When I experienced surgical complications due to an undiagnosed bleeding disorder, he was at the hospital morning and night, and calling me to check in several times per day. After a fainting incident late one night, he was at the hospital 20 minutes later, at 11 pm. When a technician couldn’t take my blood within the time frame he wanted one weekend day, he came to the hospital to do it himself. He always had a reassuring smile and a hand on my shoulder, saying, “hang in there, you’ll get through this.” I’m not sure what would have happened if I’d been in the hands of someone less experienced and committed.

Although the excision surgery had provided me with a lot of relief from endometriosis pain, adhesions caused by that surgery, and a subsequent surgery to remove a hematoma caused by my bleeding disorder, began to cause as many problems, if not more, than I’d had before the surgeries. I had severe pain in my left lower pelvic area, severe pain and nausea after eating, left chest and rib pain, and eventually severe bladder pain. Simple, basic activities like walking and eating were too painful, and I was in the ER multiple times because of pain and gastrointestinal problems.

The problems with adhesions led me to seek treatment with a physical therapist who also ended up exceeding my expectations for her level of skill, commitment and caring.  After being told by my doctors that the only treatment they could offer for my adhesions was more surgery, which might actually make the problems worse, I traveled to Miami for a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage physical therapy). This treatment was very successful and reduced all my pain tremendously, restored my ability to eat, and reduced my constant nausea to merely occasional. I was very lucky that my physical therapist was extremely compassionate and sensitive, and through many hours of conversation during treatment she helped me make sense of the emotional consequences of so many years of pain. She also provided an invaluable self-treatment program that I continue to do at home to help maintain the benefits of treatment, and continues to be an ongoing long-distance resource when I have questions or problems.

Finally, the support of family and friends, coworkers, and online and in-person support groups is also invaluable to me as I continue to navigate through the journey of chronic illness. Everyone with chronic illness has felt those moments where they feel isolated and lose hope that things will get better. In those moments a shoulder to cry on, or a message that we are strong and can move forward despite obstacles, or even an offer to keep the faith for us when we can’t, are what keep us afloat.

My reflection on holiday parties past and present helped me realize how fortunate I have been to have a team of skilled and compassionate healthcare professionals, and caring support people, to help me through this difficult journey. To anyone reading this who also suffers from a chronic disease, I wish you the best in assembling your own team, and many happy holiday parties for the future.

 

Share