Endometriosis:

A Guide for Friends, Siblings, and Significant Others

 

The following information was created to help you learn about endometriosis. Finding out about symptoms and treatment will allow you to be understanding and supportive.

 

What is endometriosis?

Endometriosis is a condition that occurs when tissue similar to the lining of the uterus is found outside its normal location. Common locations of endometrial implants include the ovaries, fallopian tubes, and ligaments that support the uterus and tissue covering the bladder and rectum. The location of the endometrial implants and the way in which the lesions affect the pelvic organs contribute to the symptoms that both adolescent and adult women have.

 

What are the symptoms of endometriosis?

Endometriosis causes different symptoms. Some teens may have one or more of the following symptoms:

• Severe period cramps
• Chronic pelvic pain that comes and goes (throughout the menstrual cycle)
• Painful urination (passing urine)
• Diarrhea or constipation
• Pelvic pain with exercise
• Pain after a pelvic exam
• Pain with intercourse (if sexually active)

The amount of endometriosis doesn't always compare to the amount of pain a woman may have. For example: Some teens may have a lot of endometriosis and have very little pain, while others who have a small amount of endometriosis have severe pain.

 

How is endometriosis diagnosed?

The ONLY way to diagnosis endometriosis is to have a procedure called a laparoscopy. This procedure allows a doctor to look inside the pelvic cavity with a special lens to check for endometriosis (implants). Other tests that are often ordered before a laparoscopy may include blood tests, vaginal cultures (to check for infection), an ultrasound and/or an MRI. These tests are done to "rule out" other possible causes of pelvic pain.

 

What causes endometriosis?

Although we know that some young women may be a little more likely to develop endometriosis because their female relatives have it, most of the time we do not know the cause of this disease.

 

The three most accepted theories are:

• Sampson's Theory: This theory explains that the flow of menstrual blood gets "backed up" causing some of the blood to flow in a reverse direction. This process causes blood containing endometrial tissue to attach to surfaces outside of the uterus.
• Meyer's Theory: This theory proposes that specific cells (that are present at birth) called "metaplastic cells" change into endometrial cells.
• Vascular Theory: This theory suggests that the endometrial tissue "travels" through the body via the blood vessels. It then implants in the abdomen and grows, resulting in pain.

How is endometriosis treated?

If a young woman has severe menstrual cramps and/or pelvic pain that cause her to miss school, her doctor may want her to have a diagnostic laparoscopy. If endometriosis is found, treatment falls into the following categories:

• Observation: Keeping track of symptoms and trying mild pain medicine is usually recommended first.
• Medical suppression: Hormonal treatment works by shutting off hormones made by the ovaries, which temporarily stops a woman's period and lowers the estrogen level.
• Surgery: A special instrument is inserted into a tiny incision or cut in a woman's abdomen (near her navel). Visible endometriosis is destroyed.
• Lifestyle changes: Exercise, a healthy diet, and getting enough rest helps to manage pain. Relaxation techniques such as yoga and meditation can help too.
• Pain Treatment Services: Your friend, (sibling or partner) may be referred for pain treatment services where she may be evaluated for physical therapy, biofeedback or another technique to help with pain control.
• Complementary medicine: Acupuncture, herbal remedies, etc. can be helpful and sometimes are prescribed along with traditional medical treatment.

The goals of treatment should be aimed at relieving pain, controlling the progression of endometriosis and preserving fertility for future childbearing. Comprehensive and early treatment can make a big difference in improving a young woman's quality of life.

 

How can I be helpful?

It's important to have a clear understanding of endometriosis; the symptoms, treatment, the possible side effects of medicine, and how the disease impacts your friend's (sibling, or partner's) life. Letting her know that you want to help and being supportive will make a huge difference in the way she copes with her disease. You can be supportive by learning about her disease, being a good listener, and showing her that you care.

 

Here are some examples of how you can show support:

• Keep in touch: Text or call especially on the days your friend (sibling or partner) is absent from school.
• Take notes: Offer to pick up or drop off school work and copy notes in classes you share.
• Bring the social event to your friend's house: If you're planning a get together with mutual friends and your friend or partner isn't up to going out (because of pain), consider meeting at her home.
• Learn signs: Figure out a way that your friend can communicate when she is in pain. Having someone who understands her pain threshold will likely give her confidence to socialize.

What else do I need to know about endometriosis?

• Young women CAN suffer from symptoms of endometriosis. Medical studies have found this disease in teenagers and although rare, some children can have it.
• Endometriosis is NOT an STD sexually transmitted disease).
• Chronic pelvic pain is not normal. Most young women have none or mild to moderate menstrual cramps one or two days a month. If your friend, sibling or partner is absent from school or work a lot because of pelvic pain and/or menstrual cramps, tell her to make an appointment with her doctor.
• Endometriosis occurs among young and older women of ALL races.
• Getting pregnant does NOT cure this disease, but may improve symptoms for some women. Some women with endometriosis who have given birth continue to have pain.

Commonly Asked Questions

 

What is it like to live with endometriosis?

Having endometriosis can definitely add to the everyday stress of being a teen or young adult.

• Girls with endometriosis have a significant amount of pelvic pain and menstrual cramps.
• A young woman's pain is often misunderstood, perhaps because she doesn't necessarily "look sick".
• Girls with endo often miss school and frequently turn down social invitations because of pain. This can lead to feelings of isolation and depression.

How common is endometriosis among teen girls?

It's not uncommon for young women to have endometriosis. If endometriosis runs in the family, a young woman may be more likely to have it than someone else with no family history. A research study done at Children's Hospital Boston found that endometriosis was the most common diagnosis for teens with chronic pelvic pain that had undergone a diagnostic laparoscopy.

 

How often does a young woman need to be seen by her GYN (gynecology) team?

This depends on: the type of medication she is prescribed, how well she responds to treatment, and whether or not she has other gynecological issues. For example if she is on Lupron Depot®, she will need to return for her shot either once a month or every three months, depending on the prescribed dose. If she is being treated with birth control pills she will likely have follow-up appointments about every 3 months. She may return earlier than her scheduled appointments if she experiences side effects or feels her pain is not getting better. At the very least, she will need to have a check-up with her gynecologist once a year.

 

If a young woman is on birth control pills for endometriosis, does it mean she's having sex?

Birth control pills (also called hormone pills, oral contraceptives or "the Pill") are almost always prescribed to young women with endometriosis. Being on the pill does not mean that a young woman is having sex.

 

How can I help my friend, (sibling or significant other) get to school?

One of the primary goals of treatment is to successfully manage your friend's (sibling, or partner's) pain. Her treatment plan is specially designed to lessen her symptoms that often get in the way of going to school, participating in activities, and socializing with friends. You can encourage your friend (sibling, or partner) to go to school even if it means going in later or getting dismissed early. If she is absent, you could offer to pick up school-work for her.

 

You can help your friend or loved one by understanding HER experience with endometriosis and having trusting and ongoing conversations about what she is going through.

 

How can I help my friend (sibling, or partner) get out and do things?

Understanding what your friend (sibling, or partner) is experiencing in terms of pain will help you know why she may feel anxious about going out. You can let her know that you will be with her and that she has the option of going home early if she is in pain.

 

Sometimes plans you have made with your friend, sibling, or partner may need to be adjusted because she is tired or in pain. This doesn't necessarily mean that you can't get together. Choosing more relaxing activities, or meeting at her home is better than not including her in your plans.

 

How can I tell if my friend (sibling, or partner) is depressed?

If a young woman is having trouble sleeping, is not interested in social activities, has a loss of appetite and/or change in weight, she may be depressed. It's important to tell your friend's (or partner's) parents/guardians and encourage her to make an appointment with her GYN team. We can arrange an evaluation with a mental health counselor, social worker, or psychologist.

 

Are there any complimentary or alternative (CAM) treatments that might help?

Although there is limited data that supports the effectiveness of herbs, acupuncture, and other forms of CAM therapy in the treatment of endometriosis, new research studies are underway to find out if these therapies are helpful. Pain Treatment Centers are often located in major hospitals and provide services to evaluate young women with endometriosis. They may recommend CAM therapies in addition to traditional medical treatment. If your friend (sibling, or partner) chooses to explore options on her own, tell her to make sure that the CAM provider (for example: an acupuncturist) is a licensed professional.

 

Watching your friend, sibling or partner deal with pain (from endometriosis) and the possible side effects of treatment can be very hard especially if you feel you can't do anything to make her feel better. Remember, your role as a friend, sibling or partner is very important, as you can be of great support and inspiration.

 

Written and reviewed by the CYWH Staff at Children's Hospital Boston

 

Updated: 5/17/2011

 

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