endometriosis bladder pain Archives

Bladder Pain Syndrome – Interstitial Cystitis

Published on September 5, 2023

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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.

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

Often Injured, Rarely Treated: Tailbone Misalignment

by Leslie Wakefield, MS, DPT, CSCS

Published on May 11, 2023

157442 views

Chronic lower back discomfort. Stiff neck. Pelvic floor dysfunction such as pain with intercourse or urinary incontinence. Inability to sit squarely or for long periods of time. Pain with bowel movements. These are symptoms I see commonly grouped together in patients coming for treatment. What is the connection?

The tailbone.

Although it is a common site of injury, often taking the brunt of our many childhood and adult slip and falls, the tailbone is unfortunately an under-evaluated source of pain and dysfunction in both men and women. Once injured it can cause pain in sitting, pain with bowel movements, pelvic floor dysfunction, such as pain with intercourse, or even cause reactions up the spine, all the way to the neck and head.

What Is the Tailbone?

The coccyx, or tailbone, is the last piece of the spine. It is shaped like a triangle, and attaches to the sacrum by ligaments that run front, back, and both sides. To find your tailbone, just feel down your back, between the buttocks, until just above the opening of the anus.

In a healthy alignment it is mobile (moves slightly when pressed upon), center line, pain free, and continuous with the sacrum. However in a dysfunctional alignment it may be painful to touch it or the tissue around it, immobile, and even noticeably off-center. It may feel like it “points” deep into the body, rather than continuous with the rest of the spine.

How Does Tailbone Injury Happen?

Some patients know the moment they injured their tailbone. It is often a slip and fall, resulting in pain in sitting, and requiring the use of a donut pillow for some time until the irritation subsides. Usually, though, patients arriving with tailbone dysfunction cannot pinpoint a particular time that it was severely injured. They recall a multitude of childhood falls, none of which were particularly notable. And yet the tailbone is out of alignment and causing dysfunction.

Because the tailbone is attached to the rest of the spine by ligaments, it can be sprained just like any other joint. It can also be moved out of alignment. In many cases, a fall to the buttocks jams the tailbone forward, spraining the ligaments surrounding. As they heal the ligaments may scar down around the misaligned tailbone, effectively holding it rigidly out of place. Whether the fall was 2 months ago or 20 years ago, the tailbone may still be out of alignment.

What Are the Problems Associated With Tailbone Misalignment?

The most obvious symptom is coccydynia, or pain at the tailbone. However often patients have no pain at the tailbone until it is directly touched, and occasionally have no pain around it at all. This symptom may manifest as an inability to be comfortable in sitting. Often patients find themselves shifting from buttock to buttock in search of a comfortable position.

Pelvic floor dysfunction is common, as the pelvic floor muscles attach around the tailbone. Their ability to function optimally is affected by the positioning of the bones around them. Problems may include pain with intercourse, sensation of “tightness,” or pain with bowel movements. Bladder leaking may be aggravated by the inability of the pelvic floor to contract optimally.

Pain or tightness further up the spine is often a secondary symptom that patients don’t realize is connected. Since the spine and its contents are continuous from the skull to the tailbone, a tailbone out of place can affect alignment all the way up to the head. The most common two places I see this are the lower back and the suboccipital region, or area just below the skull on the back of the neck. Chronic nagging pain or tightness in these areas that shifts but never resolves despite care may be traced down to misalignment of the tailbone.

Treatment

The only way to treat most tailbone dysfunction is to work internally to mobilize the soft tissue around it and the joint itself. This is most directly done rectally, but sometimes can be accomplished vaginally. Pelvic floor physical therapists can do this, and some chiropractors and osteopaths may be trained to do it as well.

Why does this only work internally? Since the most common dysfunction of the tailbone is to be pushed forward by a fall to the buttocks, it needs to be mobilized in a posterior direction. This involves putting pressure on the front of the tailbone to move it back into place. In most cases the only way to access this angle on the tailbone is internally.

The therapist treating you should have specialized training to work internally, and have worked with tailbone issues before. As with all internal treatment, it is important that you feel comfortable and informed about what is happening. The practitioner will use a gloved and lubricated finger to mobilize your tailbone. You should be in a private room, draped for your comfort, and educated on what is found during evaluation and being done during treatment. Many patients are very anxious about being treated at or around the rectum. A skilled practitioner will be able to make your treatment as comfortable possible.

Does It Stay Fixed?

Usually, yes! Once the tailbone is mobilized it will not scar itself back into the old position unless there is a new injury. However, it is important to treat the ligaments, muscles, and bones around it as well, which may be contributing the dysfunction. Without treatment, these areas might pull the coccyx back out of alignment over time. The same concept applies to areas such as the lower back and the neck. Once the pressure of the misaligned tailbone is resolved, it is important to also treat the rest of the spine as it may have become tight or weak over time.

Often patients describe a sensation of “lightness” and ability to stand taller after being treated for tailbone dysfunction, as if a pressure was released. If you suspect that you have tailbone dysfunction, it is worth it to have an evaluation. You may find a connection piece in the puzzle for other symptoms you didn’t think were related.

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 post was published originally on Hormones Matter on September 10, 2014.

Pain After Endometriosis Excision Surgery

by Philippa Bridge-Cook, PhD

Published on June 11, 2014

15900 views

When an endometriosis patient takes the step of having laparoscopic excision surgery to treat their endometriosis, they have often already been through a long journey with many failed treatments. This journey often includes treatments such as multiple rounds of different types of birth control pills, stronger hormonal medications designed to suppress menstrual cycles (such as Lupron or other GnRH agonsists), multiple cauterization or ablation laparoscopic surgeries, and various different complementary alternative medicine approaches.

Most patients who undertake excision surgery after trying many or most of the above, do so on the basis of their own research, since many gynecologists are misinformed about endometriosis treatment, and are not trained to do excision surgery. A recent worldwide consensus paper on the management of endometriosis states that “there is unanimous consensus over the recommendation to excise lesions where possible, especially deep endometriotic lesions, which is felt by most surgeons to give a more thorough removal of disease.” Sadly, there are fewer than 100 surgeons in North America currently practicing expert excision of endometriosis.

Patients come to excision surgery with hope that this treatment will finally bring them relief. And when pain persists or recurs after excision surgery, patients may feel disappointed, hopeless, and confused. However, there are many causes of pelvic pain that are not endometriosis, which can continue to cause pain even after expert excision surgery, and once these other causes are treated, excellent pain relief and relief of other symptoms may be achieved. Although it may be natural after previous surgeries have failed, to assume that endometriosis is still the cause of the pain, if surgery was performed by an expert, it is prudent to rule out other potential causes of pain before assuming that endometriosis continues to be the culprit.

Adhesions After Surgery

Adhesions are a very common occurrence after laparoscopic excision surgery. Adhesions occur in 70 to 90 percent of patients undergoing gynecological surgery. In some cases, adhesions may be present but not cause pain, but adhesions can also cause chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and more. Adhesions are the primary cause of bowel obstructions and are a common cause of hospital admission for people with a history of abdominal or pelvic surgeries.

Pelvic Floor Dysfunction

Pelvic floor dysfunction is also a common consequence both of endometriosis itself, and of the surgeries used to treat it. The pelvic floor is a group of muscles and other tissues that form a sling from the front to the back of the pelvis. When the muscles are too tight, too relaxed, or a combination of both, it can result in problems with urination or bowel movements, pain with sex, pelvic pain, genital pain, back pain, and/or rectal pain.

Adenomyosis

Adenomyosis is a disease of the uterus, where the inner lining of the uterus (the endometrium) is found within the muscle wall of the uterus. There is no clear association between adenomyosis and endometriosis, but it is possible to have both conditions. Adenomyosis may be underdiagnosed because it is difficult to see using imaging techniques such as ultrasound, and the symptoms overlap with many of other conditions causing pelvic pain.

Interstitial Cystitis

Interstitial cystitis is a disease of the bladder that can cause pelvic pain, bladder pain, urethral and/or vaginal pain, painful sex, urinary frequency and urgency. Some doctors have found a very high association between endometriosis and interstitial cystitis, where many patients have both conditions. This has led to the two diseases being nicknamed “the evil twins.”

Vulvodynia and Pudendal Neuralgia

Endometriosis patients may also be more susceptible to pain syndromes involving nerves in the pelvic area, such as vulvodynia, a condition associated with pain in the opening of the vagina, and pudendal neuralgia, a condition involving pain, burning, and/or numbness in the genital area and rectum. The potential cause and effect relationship between endometriosis and these other conditions is not clear; however, some doctors theorize that chronic inflammation, immune system dysfunction, and neural pathway sensitization may play a role in the development of multiple pelvic pain syndromes.

Not All Pelvic Pain is Endometriosis

Unfortunately, although endometriosis is a painful and often debilitating condition all on its own, in many patients other conditions also contribute to pain and other symptoms. For doctors and patients alike, it can be tempting, once a diagnosis of endometriosis is made, to blame every symptom arising in the pelvic area on endometriosis. However, pain after careful excision surgery can often be caused by one or more of these other pelvic pain conditions, and a correct diagnosis of the underlying cause of the pain is crucial to successful treatment.