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).