adhesion

Endometriosis, Adhesions and Physical Therapy

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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.

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

Adhesions: Cause, Consequence and Collateral Damage

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Dear Dr. Wiseman,

I have been living with adhesions for over twenty years since the age of 21. After five years of period pains I was diagnosed with endometriosis and had five laparoscopic surgeries to remove it. I had relief for some while and then the pain came back. I also had adhesions, which they tried to remove, but they just came back. I don’t know what is worse – the endo or the adhesions.

At 30 I had a hysterectomy which they said would cure my endometriosis and pelvic pain. The pain only got worse and I started to have bouts of painful constipation and diarrhea which I was told was IBS. My belly was and is often bloated with a painful “pulling” sensation and severe gas.

Eight years ago my first bowel obstruction was caused by my intestine wrapping around my ovary. They tried to clean this up with surgery but I had five more obstructions and adhesions surgeries.

For about five years I have had lower back pain. Burning pain started 6 months ago when my bladder is full and when I pee, is about 14 times a day and 5 times at night. Being intimate with my husband is out of the question. My pain daily is an 8-10 and I have no quality of life. Of course the ER thinks you are a drug seeker when you come in continually for pain, but I go when I can’t tolerate anymore. I have tried hypnosis, massage therapy and acupuncture. I lost my job because I was either always taking days off because I was so tired from not sleeping, or in the bathroom. My health insurance has run out. I am taking Vicodin and Ambien.

I need to find someone who will listen to me. PLEASE, Jane

Patient Suffering

Although Jane’s email is a composite, it typifies the many we receive from patients who are at the end of their rope, having experienced some or all of these conditions: painful periods, endometriosis, generalized pelvic pain with adhesions, hysterectomy, IBS, painful bowel movements, bowel obstruction, bladder pain, lower back (sacroiliac joint) pain, painful intercourse, possibly vulvodynia and interstitial cystitis.

Many patients have endured years of suffering with confusing diagnoses. They come to us either because they are finally told they have adhesions, or after doing their own research, suspect that adhesions may be the cause of their problems.

What are Adhesions?

Adhesions are made up of scar tissue. Think of a scar as a patch repairing a punctured bike tire. The patch, or scar certainly does the job, but the tire is never the same again. Imagine being so careless with the glue that the tire is now stuck to the bike frame. This is an adhesion, an internal scar that connects organs or tissues that should not normally be connected.

Most internal organs are covered with a “non-stick” coating, but when this is damaged, organs close to one another will stick and knit together by means of reparative scar tissue.

MRI, CT or ultrasound detect adhesions only in limited circumstances.

The only way to see adhesions is by direct surgical observation. There is no blood test for adhesions.

What Causes Adhesions?

Almost any kind of trauma can induce adhesions, the most common of which is surgery. Organs can be damaged by being handled by a surgeon or surgical instruments, or by drying out in the air of an operating room or the gases used in laparoscopy. Non-surgical injuries including knife or gunshot wounds can also lead to adhesions. Endometriosis, infection (e.g. from a burst appendix), high doses of radiation, peritoneal chemotherapy or surgical sponges left behind can also cause the kind of damage leading to adhesions. Too many, too large and too tightly placed sutures cause adhesions as do many meshes used for hernia repair or organ prolapse (e.g. transvaginal or pelvic meshes).

What Problems do Adhesions Cause?

Imagine one end of your garden hose sticking to the other and you can easily see why adhesions around the intestine can cause it to twist or kink and obstruct. Infertility will result when the same thing happens to the fallopian tubes, the channels through which eggs travel from the ovary to the uterus. Sometimes they can cover the end of the fallopian tubes and prevent eggs from entering in the first place.

Adhesions make operating more dangerous and lengthy, increasing the chances of bleeding and damage to tissues. Adhesions from a prior cesarean section, will cost the newborn baby precious seconds in an emergency c-section.

Adhesions and Adhesions Related Disorder (ARD) and CAPPS

Adhesions patients with severe, long-standing disease develop what we call Adhesions Related Disorder (ARD): chronic abdominal or pelvic pain, recurrent bowel obstruction and sometimes malnutrition. With many doctors unable to provide a diagnosis, or unwilling to tackle adhesions, psychosocial issues abound from unemployment, poor insurance coverage, lack of disability benefits and alienation by friends and family who only see a malingering, drug seeker. ARD patients with bladder, pelvic, bowel, genital or sacroiliac joint pain become practically indistinguishable from those with similar constellations of symptoms arising from initial diagnoses of IC, IBS, endometriosis, etc. We call this CAPPS: Complex Abdomino-Pelvic and Pain Syndrome.

How Common are Adhesions?

Over 90% of patients having any kind of surgery may form adhesions and problems, many occur only decades later. Who develops adhesion-related problems and why is not fully understood.

The over 400,000 annual adhesion-related hospitalizations in the USA rival those for heart, hip and appendix operations with annual direct costs to the health system over $5 billion. Fully 35% of women having open gynecologic surgery will be readmitted 1.9 times in 10 years for secondary operations due to adhesions, or complicated by adhesions (Ellis et al., 1999; Lower et al., 2000). There are similar risks in laparoscopy (Lower et al., 2004) and in men also, but for a variety of reasons the problems appear to impact women more devastatingly from an economic and social perspective.

Over 2000 people die every year from intestinal obstruction due to adhesions.

Do Adhesions Cause Pain?

While patients suffering with adhesions are quite clear about whether they cause pain, within the medical community there is great debate. Much of the debate stems from a flawed study and the recognition that surgical removal (adhesiolysis) of the adhesions doesn’t always work. The lack of effective or complete pain relief after adhesion removal has led some to suggest that adhesions do not cause pain. For a full discussion about the problems with adhesion research click here. Additional considerations confusing the relationship between pain and adhesions include:

  • Adhesions can form again after surgery, so pain may return.
  • Adhesion removal may not correct scarring below the surface of affected organs or tissues. Scarring can entrap and tether nerves, preventing them sliding around in tissue as they need to during normal movement. When nerves are stretched because they are tethered, pain often results.
  • Not all adhesions cause pain. Patients may have pain, and they may also have adhesions. One may not be the cause of the other, but may be the product of the same cause.
  • Adhesions pain, may be “referred” – sometimes the pain is felt in other locations and not where the adhesions are.
  • Chronic pain is different from acute pain. The mechanisms of chronic pain are not well understood but once pain has persisted, the system goes on auto-pilot and the biochemical and nerve changes induced by long-term pain become very difficult to undo with surgery. Furthermore, because of the interconnections between the nerves in the pelvic area, where many adhesions develop, pain or disturbances in function in one organ may “spread” to other organs.
  • Bowel pain, a common symptom of adhesions patients is difficult to diagnose. In some cases, it is related to constipation from chronic opioid use. In other cases, it can be related to an adhesion caused bowel obstruction. (Bowel obstruction caused by adhesions or anything else, is an emergency often treated with surgery. If you have a history of obstruction you should identify a general surgeon to work with and plan as much as possible for these sorts of events).
  • Long term use of opioids increases the sensitivity to pain which makes slight pain feel more painful and requires more medication to alleviate. It’s a vicious cycle that is very difficult to break.

What to do about Adhesions?

Prevention is the best treatment. If the only reason for surgery is pain, whether it is adhesiolysis (cutting of adhesions), hysterectomy or placement of an electrical neurostimulator (e.g. INTERSTIM®), be sure to exhaust all non-invasive options first and be aware that there are problems with each option.

  • Adhesiolysis (surgery) has helped some patients but there is the risk of no effect or recurrence.
  • Hysterectomy, in addition to incurring some long term health risks is likely to exacerbate the problems. Although it has helped some patients with pelvic pain, evidence concerning its efficacy, is minimal (Andrews et al. 2012). See here, here and here to learn more about the long-term consequences of hysterectomy.
  • Neurostimulators carry their own number of risks and may preclude you from using non-invasive treatments like therapeutic ultrasound.

There are no easy answers and there is no magic wand. We advocate a multidisciplinary approach. Start with a gynecologist, urologist or urogynecologist that specializes in pelvic pain and who works closely with a general surgeon and a physical therapist specializing in pelvic pain/pelvic floor dysfunction and visceral manipulation (e.g. the Barral method). The team should also include a pain management doctor, psychologist, gastroenterologist, and a dietician/nutritionist. Pain or other difficulty with intimacy is common – do not be ashamed of talking about this, preferably with someone who specializes in sexual medicine.

Many patients have been able to achieve some relief and avoid surgery with pelvic floor physical therapy and/or visceral manipulation, careful control of diet, well placed and timed nerve blocks (e.g. pudendal nerve) and judicious use of opioids. We have found that a wearable therapeutic ultrasound device has brought relief to patients suffering with adhesions and other painful pelvic, bladder and genital symptoms (Wiseman and Petree, 2012).

If Surgery is the Only Option

If you must resort to surgery, insist that the surgeon uses powderless gloves and humidifies and warms the laparoscopy gases using a device called INSUFLOW®. Insist that an adhesion barrier be used where possible. Think of an adhesion barrier is a degradable type of “internal Band-Aid” that is placed over organs at risk of forming adhesions. Once the tissue has healed, the barrier dissolves because it is no longer needed. Adhesion barriers are not 100% effective and cannot be used in all situations. There are three approved in the USA – INTERCEED® Absorbable Adhesion Barrier, Seprafilm® Adhesion Barrier, and ADEPT® Adhesion Reduction Solution, the last of which appears to have limited utility. Other materials are used “off-label” which you can read about here.

Whether your adhesions are the cause of the pain, the consequence of pain or just happen to be there, you are still in pain and you are suffering. Educate yourself and those close to you about adhesions. The International Adhesions Society and the International Society for Complex Abdomino-Pelvic & Pain Society (ISCAPPS) provide the most up-to-date information on these conditions. We’ve also found these books to be useful:

Stay active as much as possible. Walk, garden, and exercise lightly. Stop smoking. Watch old funny movies. As difficult as it may be, it is important that you maintain a circle of family and friends, through a religious community or other group.

Above all, remember you are not alone and this is not in your head.

The information provided here is not intended nor is implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.

References

Andrews J et al: Noncyclic Chronic Pelvic Pain Therapies for Women: Comparative Effectiveness. AHRQ Comparative Effectiveness Reviews 41. 2012 Jan; 11(12):EHC088-EF. http://www.ncbi.nlm.nih.gov/pubmed/22439157

Ellis H et al. Adhesion-related hospital readmissions after abdominal and pelvic surgery: a retrospective cohort study Lancet 1999; 353:1476. http://www.ncbi.nlm.nih.gov/pubmed/10232313

Lower AM et al. The impact of adhesions on hospital readmissions over ten years after 8849 open gynaecological operations: an assessment from the Surgical and Clinical Adhesions Research Study. Br J Ob Gyn. 2000; 107:855. http://www.ncbi.nlm.nih.gov/pubmed/10901556

Lower AM et al. Adhesion-related readmissions following gynaecological laparoscopy or laparotomy in Scotland: an epidemiological study of 24 046 patients. Hum Reprod. 2004; 19:1877 http://www.ncbi.nlm.nih.gov/pubmed/15178659

Wiseman, D. M. Disorders of adhesions or adhesion-related disorder: monolithic entities or part of something bigger–CAPPS? Semin Reprod Med. 2008; 26:356. http://adhesions.org/Wiseman2008SeminreprodMed26p356CAPPS.pdf

Wiseman, DM and Petree, T. Reduction of chronic abdominal and pelvic pain, urological and GI symptoms using a wearable device delivering low frequency ultrasound. International Pelvic Pain Society; Chicago, IL. 2012. http://www.kevmed.com/resources/Wiseman2012-IPPSMeetingChicagoPainShieldCPP-Thumb.png

 

This post was published previously July 2013.