Living a Healthy Life with Chronic Pain (45 page)

Pelvic pain refers to pain in the lower part of your abdomen and the structures related to the pelvis. This pain affects the area directly below your belly button down to your hips. The pelvis includes organs involved in reproduction and sexuality such as the womb or uterus, the vagina, and the vulva in women and the penis, testicles, and prostate gland in men. The pelvis also includes the bladder, bowel, and many muscles, nerves, bones, and soft tissue. Chronic pelvic pain can occur in any of these structures as well as in the lower back, buttocks, or thighs.

Most women experience pelvic pain at times because of menstruation. But there are many other possible reasons for pelvic pain. In women and men, reasons for pelvic pain include infection, abnormal tissue growth, and diseases of the urinary tract or bowel. Pelvic pain can also be caused by damage to nerves, tissues, or bones, or injury that causes tender, tight, or weakened
muscles in the lower abdomen, lower part of the pelvis (called the pelvic floor muscles), or the buttocks. In men, chronic pelvic pain can be caused by prostatitis, or inflammation of the prostrate gland. If your pelvic pain is due to a known cause, treatment is specific to that cause. Treatments can include various medications to cure the infection or disease or to manage troublesome symptoms; surgery to remove a growth, cyst, or tumor; and physical therapy and exercise to stretch tight muscles and trigger points.

Sometimes the cause of pelvic pain is complex and treatments do not work. The pain persists and becomes chronic. Like other kinds of chronic pain, chronic pelvic pain is a condition in its own right because of abnormal nerve activity patterns in the pelvic region, the central nervous system, and the brain.

Chronic pelvic pain is different for everyone. It can be mild to severe. It can feel dull, sharp, burning, or cramping. It might be there all the time or you might only notice it at certain times such as when having a bowel movement, passing urine, during sexual activity, or after you sit for long periods of time. It may not be very bothersome most days, or it may frequently interfere with sleep, work, and enjoyment of life.

There are two additional challenges that people with chronic pelvic pain face. First, it is often difficult to talk about pelvic pain to other people, even your health care professionals. The relationship of pelvic pain to sexual, urinary, or bowel functions can stifle conversation and make you want to hide it from others. Researchers refer to this as a “culture of secrecy.” This can be problematic because just like anyone who experiences any kind of chronic pain, people with chronic pelvic pain need supportive relationships and need to be taken seriously. Secrecy means that you may not talk openly to friends, family, or even your doctor about your pain problem. This can leave you feeling isolated and alone. This can be compounded by the second special consequence of chronic pelvic pain, which is that some symptoms can be potentially embarrassing. Symptoms such as unpredictable urinary or bowel incontinence or gynecological discharge can lead to fear of embarrassment or damage your self-confidence. These issues can contribute to your solitude if you decide to avoid social occasions.

While chronic pelvic pain is complex and challenging, there are many things you can do to improve your quality of life. Your role in the management of pelvic pain begins with open communication. Open communication will help you build a trusting relationship with members of your health care team so that you feel comfortable talking with them. You will likely be referred to medical and other specialists. Prepare for these visits by reading
Chapters 11
,
pages 181
–
185
. It is important to be aware that you may be asked about any past or current sexual or physical abuse, because abuse is associated with pelvic pain for some people. If you are a victim of abuse, it may be hard to talk about these things, but it is very important that you do in order to get the help you need.

Chronic pelvic pain has been described as an emotional roller coaster of anger, depression, guilt, anxiety, frustration, and fear. Sometimes, the cause of pelvic pain results in infertility and related feelings of loss and grief. The management of these difficult emotions can be aided by the self-management tools described in
Chapter 4
,
pages 57
–
69
, and
Chapters 5
on how to use your mind to manage symptoms. Sometimes, self-management is not enough and you may require additional help to deal with your emotions. A support group or professional counseling may be the answer. Talk to your health care provider about your feelings, and seek emotional support from family and friends.

Your health care provider may recommend analgesics and other medicines to manage your symptoms. Review
Chapters 15
and
16
so that you understand the pain medications and other medicines you are advised to take and your key role in medication self-management. Your provider may also suggest other forms of treatment or products. When deciding on what treatments to try, refer to
Chapters 17
on evaluating treatments and
Chapters 2
,
pages 22
–
23
, on decision making. This information can help you if you feel unsure of what path to pursue in seeking treatment.

As with all chronic pain conditions, when you experience chronic pelvic pain you need to pay attention to your overall health, including issues relating to nutrition, weight, and exercise. Eating well, maintaining a healthy weight, and getting enough physical activity will improve your overall sense of well-being, increase your energy, and improve many other symptoms. Read
Chapters 13
and
14
on nutrition and
Chapters 7
,
8
, and
9
on physical activity. In addition to a flexibility and aerobic exercise program, you may be referred to a physical therapist for assessment and treatment of pain in the muscles and tissues of the lower abdomen and pelvic floor. Ask if there are specific exercises you should not do or exercise machines you should not use. For example, to reduce nerve irritation, you may be advised not to do abdominal “crunches,” not to use an elliptical machine, and to avoid bicycling or to use a well-padded seat or padded clothing if you do bicycle. You may also be given special pelvic floor and abdominal exercises that will help relax and strengthen muscles in this area.

Sexual concerns are common with pelvic pain. Read
Chapters 10
on communication and
Chapters 12
on sex and intimacy for more information about concerns relating to this area of your life.

Complex regional pain syndrome (CRPS) is a difficult chronic pain condition. It is also known as causalgia or reflex sympathetic dystrophy (RSD). CRPS most often affects a limb—an arm, hand, finger, leg, foot, or toe—but it can occur in other parts of the body as well. If you have CRPS, you may have continuous burning or “pins and needles” type pain in the affected limb, have increased sensitivity to even light touch, and experience changes in the skin around the painful area. The skin can change color and look pale, blotchy, blue, or very red. It can feel cold or very warm compared to the unaffected limb. The skin might look swollen, shiny, and thin. There can be changes to fingernails and toenails and even changes in hair growth in the area. You might also have abnormal sweating near the painful area. Muscles and joints in the affected area can be become stiff and go into spasm. In some people, CRPS moves up the limb and spreads to the opposite limb.

The exact cause of CRPS is not known but is likely due to multiple causes. There is often a triggering event that starts the pain in the first place. The most common initial causes are crushing injuries, sprains (even mild ones such as a twisted ankle or wrist), bone fractures, or surgery. It is also attributed to other causes such as heart attack, stroke, or infection. A key indicator for the presence of CRPS is that the pain is much more severe than expected from the original injury or illness. CRPS results from damage to nerves that travel from the limbs to the central nervous system in the spinal cord and brain. The nerves in your limbs are part of the sympathetic nervous system. Among other things, the sympathetic nervous system controls the flow of blood to limbs, skin temperature, and our response to stress. The skin changes in CRPS can be caused by damage to nerves in the sympathetic nervous system. This damage is also why being cold makes the pain of CRPS feel worse.

CRPS is not easy to diagnose, especially in the early stages. Other conditions have similar symptoms, so your doctor will conduct a careful examination to eliminate other treatable conditions such as arthritis syndromes, muscle diseases, a blood clot in a vein, or diabetes. CRPS is most common in women who are in their 40s and older. For most people, CRPS symptoms go away after a year, especially in younger children and teenagers or in adults if they are treated early. But for others, CRPS can linger for many years and lead to disability.

Managing CRPS is a learning process for both you and your health care team. You may need to undergo multiple tests, procedures, and treatments before finding ones that provide some pain relief. Review
Chapters 15
and
16
that discuss your role in managing medications and other treatments for chronic pain. Because CRPS is difficult to manage, it is very important for you to work closely with all members of your health care team and keep them informed about what is working and what is not improving your quality of life. Along with symptoms that accompany all chronic pain conditions
such as those discussed in
Chapters 4
, CRPS can pose some especially difficult problems and concerns. These include the impact of heightened emotions, negative thinking, and fear and avoidance of movement. In the following material, we talk about these one at a time.

High levels of emotion and stress can make the pain of CRPS much worse. The sympathetic nervous system that controls our response to stress is directly involved in CRPS. This is not the case for many other chronic pain conditions. That is why managing your emotions and monitoring your stress levels is so important when you have CRPS. Read more about depression, anger, and stress in
Chapters 4
,
pages 57
–
69
. If you are dealing with the stress of unemployment, also read
pages 70
–
73
. Learning and practicing self-management techniques to reduce stress and quiet the mind and the nervous system can really help with the stress that is part of CRPS. Examples of techniques that employ the mind to address stress are found in
Chapters 5
. Another useful strategy is pacing. The suggestions in
Chapters 6
can help reduce your stress while still allowing you to achieve the things you want and need to do.

Another challenge you might have is excessive negative thinking, sometimes called catastrophic thinking. This happens when you can’t stop thinking about pain and how bad it is. Read the sections in
Chapters 5
on the use of distraction, positive realistic thinking, and relaxation. If these techniques do not work for you, talk to your health care provider and seek professional help.

The third major challenge for people with CRPS is fear and avoidance of movement. Because the affected limb is often very painful, you may want to protect it by moving as little as possible. But not moving the affected limb will cause many problems, including muscle wasting, weakness of muscles and bones, joint stiffness, and contractures (shortening and hardening of muscles that can lead to deformed and rigid joints). It will also decrease your daily functioning. A physical therapist needs to be part of your health care team as soon as you are diagnosed with CRPS. She or he will start you on a program of exercise to maintain the function of your affected limb as well as help you develop an exercise program for your overall health. Read
Chapters 7
,
8
, and
9
to learn more about starting and maintaining an effective exercise program.

A recent research study in the journal
Chronic Illness
asked men and women with CRPS what advice they would offer another person recently diagnosed with the condition. The people in the study said they would tell newly diagnosed people that they must play an active role in self-management. Patients who have had CRPS for some time cautioned that effective self-management can only happen if a person feels in sufficient control of the condition and his or her life. They identified three important things that help a person with CRPS feel more in control. The following is their advice:

• First, accept the condition.
  Once a diagnosis is established, you need to stop looking for a cure and accept that you have this condition. Part of acceptance is setting realistic goals and being kind to yourself. Another important point: acceptance is hard and it takes time to get there. Review
  pages 92
  –
  96
  in
  Chapters 5
  to learn more about coming to terms with your condition.
  

• Second, gain the right support.
  Getting support from members of your health care team and from family and friends is critical. You need people to talk to—people who understand. Sometimes this means building a new support network. Read
  Chapters 10
  on ways to improve communication and
  Chapters 3
  on resources to learn as much as you can about finding the support you need.
  

• Third, become informed about the condition and learn what works best for you.
  Being informed and learning more about CRPS from reputable information sources such as the ones in this book (including those listed in the “Complex Regional Pain Syndrome Resources” list below) can provide reassurance and help you accept and live a good life with this condition. Your CRPS symptoms are also experienced by others. You are not alone.