CHRONIC PELVIC PAIN EDUCATION

What is Chronic Pelvic Pain (CPP)?

Chronic pelvic pain is one of the most common medical problems of women, and it affects over 1 in 10 women in the United States.   More than half of the women with CPP must cut down on their daily activities 1 or more days a month and 90% have pain with intercourse (sex). Almost half of the women with CPP feel sad or depressed some of the time.

Despite all the suffering CPP causes, often doctors are not able to come up with a diagnosis or treatments to help these women.

CPP is any pelvic pain that lasts for more than six months. Often, the problem, which originally caused the pain, has lessened or even gone away completely, but the pain continues.

What is the difference between “acute” and “chronic” pain?  When constant, strong pain continues for a long period of time, it can become physically and mentally exhausting. To cope with the pain, the women may make emotional and behavioral changes. When pain has continued for so long and to such an extent that the person in pain is changing emotionally and behaving differently to cope with it, this is known as “Chronic Pelvic Pain Syndrome”. Women with this condition will have the following:

• Pain present for 6 or more months
• Conventional treatments have not relieved the pain or have given only small relief
• The pain is stronger than would be expected from the injury/surgery/condition which initially caused the pain
• Difficulty sleeping or sleeping too much, constipation, decreased appetite, “slow motion” body movements and reactions and other symptoms of depression, including feeling blue or tearfulness.
• Increasingly less and less physical activity
• Changes in how she relates in her usual roles as wife, mother and employee.

CPP is a combination of physical symptoms (pain, trouble sleeping, loss of appetite), psychological symptoms (depression), and changes in behavior (change in relationships due to the physical and psychological problems).  But, it is not “all in your head”!

Can CPP affect other parts of my body?  A woman who has had CPP for a long time may notice that she begins to have symptoms in other muscles and organs of her body as well. It is common for pain to cause muscle tension. CPP sufferers may notice lasting changes in the muscles of the pelvis and even in the tissue and skin of the pelvis. Tension in the pelvic muscles can affect the bladder and the bowel. Patients also may notice pain involving the back and legs due to muscle and nerve involvement. Once these problems have started, they may become more painful and troublesome than the pelvic pain, which started them. Doctors who specialize in treating chronic pelvic pain will examine all of your organ systems, not just your female organs.

How do I feel pain?  Injured body tissues send signal through special nerve cells to your spinal cord, and these signals then travel to the brain. The spinal cord and brain (the “central nervous system”) act like the “volume control” dial of a microphne. They can let the signals pass to the brain normally, stop the signals (“turn down the volume”) or increase them (“turn up the volume”), making them stronger or weaker. What action the central nervous system takes is influenced by other nerve messages coming in at the same time and by signals coming down from other areas of the brain. So, how you perceive pain is affected by your mood, by the environment and by other processes happening in your body at the same time.

When a person has chronic, long-lasting pain, the way that the central nervous system processes or interprets pain information may be altered.  This may cause the “volume control” to remain broken even after the injured tissue is healing. When this happens, the pain remains in spite of treating the original cause.

What are the characteristics of chronic pain?  There are four main factors:

1. Pathology at the site or origin. There is or was an injury (pathology) at the place (site of origin) where the pain first started. This injury might be endometriosis, ovarian cysts, pain from the bowel or bladder, infection, or adhesions (scar tissue from surgery).
2. Referred Pain. Your body has two types of nerves. Visceral nerves carry impulses from the organs and structures within your abdomen and chest (stomach, intestines, lungs, heart, bowel, bladder, uterus, etc.). Somatic nerves bring messages from the skin and muscles. Both types of nerves travel to the same sites on the spinal cord. When your visceral nerves are stimulated for long periods with chronic, ongoing pain, some of this stimulation may spill over into the somatic nerves, which then carry the pain back to the muscles and skin. In CPP, the somatic nerves may carry the pain back to your pelvic and abdominal muscles and skin. That means that your pain may start in your bladder and spread to your skin and muscles, or the other way around.
3. Trigger points are specific areas of tenderness occurring in the muscle wall of the abdomen. Trigger points may start out as just one symptom of your pelvic pain or they may be the major source of pain for you. For this reason, treating the trigger points, for some women, may significantly reduce the pain. For other women, the original source of injury a well as the trigger points must be treated before pain improves.
4. Action of the Brain. Your brain influences your pain symptoms, as well as your emotions and behavior. It also interacts with your spinal cord and affects how you feel the visceral and referred pain. For instances, if you are depressed, your brain will allow more pain signals to cross the gates of the spinal cord, and you will feel more pain. This influence or modulation of the brain must also be treated. Treatment can include psychological counseling, physical therapy and medications.

It is important to remember that all of these 4 levels of pain must be treated together for CPP therapy to be successful.

What factors will my doctor consider when deciding how to help me?  Your doctor will consider a number of factors in deciding how best to treat your pain. Pain is in the nervous system, which includes the body AND the mind. CPP is ALMOST NEVER not caused by as single problem, but by SEVERAL problems interacting together. This means that most women do not respond with just single “treatment”.  Most women will need several different types of treatments for all the different problems that are causing pain.

It is impossible to tell how much each individual pain factor adds to the whole problem. In fact, whatever caused your pain in the first place may become only a minor factor while the chronic pain is caused by multiple secondary factors. Therefore, ALL factors must be treated, not just the original problem or the ones that “seem” the most important.

How soon will I start to feel better?  It may take a long time before you start feeling better, even though your doctor is trying to provide you with relief as quickly as possible. It took a long time for your pain to become so bad, and it may take weeks or months for it to get better. During your treatment, as you are slowly improving, try to remain calm and patient, and keep a positive attitude. It is possible, that your pain may not completely go away, and it might vary from day to day.  The main goal will be to make sure that serious and/or dangerous medical conditions are evaluated and treated.  Your doctor may not find a specific cause for your pain.  Even if this occurs, your doctor will try to help you find treatments that improve the quality of your life, help you function better, and improve your enjoyment and relationship with your family and friends.

What about my muscle aches and pains?  Treating any problems with your musculoskeletal system is an important part of your care. A physical therapist may examine and evaluate your posture, gain (how you walk), your abdomen, pelvis and legs. The therapist will do various length and flexibility. He will also determine your “trigger points” or areas where your muscles are especially tender. You will then receive a program of physical therapy using many different techniques to help you to develop healthier, stronger muscles. You may learn special exercises for specific muscles or work with special equipment such as ultrasound or muscle stimulators. You will also learn relaxation and breathing techniques. The physical therapist will work closely with your doctor to coordinate a program of exercises and pain medications by mouth and/or injection as needed.

Will I be treated for emotional pain?  Chronic pain affects all aspects of your physical and emotional life and may cause anxiety, depression sleep difficulties, sexual dysfunction and problems with your work and home life. To provide the best treatment, your primary care physician must help you address not only the cause of the pain and pain relief, but also all the other problems it has caused. A number of different therapies will be used to help you overcome these common problems in chronic pelvic pain syndrome. Learning to change the behaviors that contribute to your pain will relieve anxiety and depression, and increase your enjoyment of life.

The pain you suffer also affects your family. They should receive education about how your pain affects them and how their reactions to your pain affect you. Teaching your support system the nature of what you are going through including the symptoms, causes and many different types of treatments will help them to support you in your recovery.

What about surgical treatments?  Depending on your individual circumstances, your doctor may decide to do surgery to determine the causes of your pain and possibly to treat these causes with surgery as well. If you have conditions such as endometriosis or scar tissue these can often be treated by surgery and you can sometimes go home the same day.

Hysterectomy is sometimes considered as a treatment option for CPP.  But, hysterectomy is not always helpful and about 1 of 4 women who undergo hysterectomy for pelvic pain still have pelvic pain after hysterectomy.  Even women who have endometriosis can still have pelvic pain after hysterectomy. Unfortunately, there are no tests to help doctors predict which women will get better and which women will not improve (or even have worse pain) after hysterectomy.   Because hysterectomy has risks of complications and because hysterectomy does not guarantee pain relief, it should only be considered if other less invasive treatments are fully tried and do not improve pain symptoms.

So…what can I expect from treatment for CPP?  First off, you need to be realistic in your expectations and hopes for treatment.  The cause of CPP may not be fully understood, and sometimes all of the tests are normal and cannot find a cause for pain.  Also, some women with CPP can never be completely cured. Some women are so uncomfortable with the evaluation and testing process that they are never able to get a significant amount of pain relief.

Don’t expect instant results. Be patient with your treatment, follow all your doctor’s instructions.  It’s important to have a primary care physician who can coordinate your care and see you for urgent issues. Your CPP specialist may suggest that you are evaluated and treated by other specialists, depending on the suspected cause of your pain.  Other specialists may include Physical Therapists, Urologists (bladder specialists), Gastroenterologists, Physical Medicine and Rehab physicians, Pain Anesthesia physicians, Pain Psychologists, Psychiatrists, and/or Sexual Health Counselors.   Your primary care physician should help coordinate these referrals and your overall care.  Treatments may take up to 3-6 months to work, so continue to follow instructions even if you don’t see results right away. During your treatment and therapies, you will have set appointments with your doctor and therapist rather than just coming in when the pain is particularly bad.  You and your doctor will decide whether your doctor visits should be more or less frequent based on your progress. Be sure not to miss an appointment as this can interfere with you treatment. If you miss an appointment and your pain becomes worse, it may take time to get it under control again.

Remember that the treatment of chronic pelvic pain is a slow process using many different kinds of therapy. It may not be possible to totally eliminate your pain. Successful treatment means decreasing your pain to a low level so that you are able to enjoy doing the things you want to do again. It means being able to be a wife, mother, or career woman with a minimum of discomfort.

Will I receive prescription pain medications and/or narcotics to help treat my pain?  We are consultative clinics that will work with your referring physician to help treat your pain.  We are not a long-term pain management center and do not manage narcotic medications.  Patients are advised to follow-up with her primary care physician to discuss use of narcotic medications.

Topical Lidocaine or Topical Lidocaine with Estrogen

Apply the cream to the area exactly as your physician or nurse demonstrated in the clinic.

• Initially, you should apply the cream every night before you go to bed. We may reduce how often you use the lidocaine after your next visit.
• If you are using a cotton ball, saturate one side of the cotton ball with the ointment and place the medicated side between the labia minora, on top of the vestibule (as demonstrated in clinic).
• If you wake up in the night to urinate, re-apply the ointment. To avoid this problem, try to refrain from liquids and caffeine after 7 pm.

3. Lidocaine may cause some burning when initially applied. If the burning continues longer than a few minutes, wash it off and call the office in the morning.

4. During your menses, it is not absolutely necessary to use the ointment. However, regular use is optimal.

5. During your first 6 weeks of treatment, you may be asked to refrain from intercourse (please ask your doctor or nurse). Once you resume sexual activity, apply the ointment after intercourse, as instructed above.  You should use lubricants with intercourse.  If you find it helpful in reducing your pain with intercourse, you may apply small amounts to the vestibule before intercourse as well.  (If you have estrogen in your ointment, have your partner use a condom).  Make sure your vulva and vestibule are clean and DRY prior to applying the ointment.

PRECAUTION:

• If you are post-menopausal and have been given estrogen in this cream, we must see you back in clinic after 4-6 weeks of using this medication. You may be receiving a high dose of estrogen and we will lower the dose once we see that it is working well.
• If you have breast tenderness or irregular bleeding, please call the office so we can make sure that you are applying the ointment correctly.