Wellness & Prevention

Life, in pain: Part 2 — Endometriosis

In this six-part series, Jenni Prokopy of ChronicBabe.com joins Well Community in examining the six most common chronic pain conditions affecting women — chronic fatigue syndrome, endometriosis, fibromyalgia, vulvodynia, TMJ dysfunction and interstitial cystitis.

To read the introduction to the series and a personal perspective from the series author, click here.

Many women go through life enduring painful cramps during their menstrual periods. But the pain of endometriosis — which affects 6.3 million women in the U.S. — is on a completely different scale, described by one patient as being akin to the pain of back labor during childbirth. (Read her story below)

Endometriosis is the migration and growth of endometrial tissues (the lining of the uterus) throughout the body. Each month, during a woman’s menstrual cycle, these tissues react as though they’re inside the uterus, shedding tissue and causing excessive blood loss, extremely painful cramps, chronic pelvic pain and scarring.

For many women, endometriosis symptoms interfere with their ability to work, maintain relationships and enjoy a healthy sex life. Untreated endometriosis can result in infertility.

“It really can be a very debilitating disease, if not treated and handled appropriately,” says Dr. Kristin Dziadosz-Jones, an OB/GYN at Swedish Covenant Hospital.

Treating endometriosis
Dziadosz-Jones says that as with most chronic pain conditions, a multifaceted approach covering the physical and psychological pain has been found to be the most effective. An increase in physical therapists in recent years focusing on the pelvic floor has also brought forth a new option for controlling the pain.

Dziadosz-Jones typically begins treatment with the least invasive, over-the-counter pain medications; dietary modifications; and actions to minimize stress. Birth control medications may be prescribed to help control cramping and other pain.

Some women have their endometrial implants surgically removed, and in recent years the advancement of da Vinci robotic surgery has allowed for smaller incisions with quicker recovery times and less pain, Dziadosz-Jones says.

Despite these many treatment options, Dziadosz-Jones says the only definitive treatment is to surgically remove the uterus and ovaries to cease menstruation — but this, of course, causes infertility.

Addressing fertility issues
Faced with a treatment option that will cause infertility, women with endometriosis are forced to make decisions about childbearing on a schedule that’s not entirely their own.

“There are definitely patients who are in so much debilitating pain that they know they need to have children, so they go ahead and start their family earlier,” says Dziadosz-Jones. “Or they fight through the pain … for years, knowing that they are not going to have their ovaries or uterus removed because then they will forego their chances of having children.”

The decision is monumental. At that point, Dziadosz-Jones says, “the physician really has to focus on controlling their pain … in a way in which they could still become pregnant and have children and live a normal life.”

Unfortunately, though, Dziadosz-Jones says many women who opt out of surgery endure years of pain, only to find out later that their disease has caused internal scarring and fertility issues.

The power of pelvic floor physical therapy
No matter what course of treatment they otherwise choose, Dziadosz-Jones refers many of her patients for pelvic floor physical therapy.

“The pelvis is a very dynamic part of the woman’s body,” she says. “There are so many muscles and ligaments that can be strengthened, or may be too tight and need to relax, and that’s what a physical therapist helps to do.”

Many of those women will see Heather Baker, a physical therapist at Swedish Covenant Hospital.

“A lot of times, I start off just really looking at posture, because especially people who have a lot of pain, they start to develop a ‘pain posture,’” explains Baker.

It’s common for people in pain to tense muscles around the affected areas, a reaction known as “guarding.” Baker might work with these patients on core strengthening, or use biofeedback or manual feedback to teach them how to relax the vaginal tissues and the pelvic floor.

“Really, just giving them body awareness,” she explains, can lead to good results. Integrating her approach with the work of other health care providers provides “a nice balance of everything, which I think really just wraps the whole person in general wellness, which is best for the patient,” she says.

Emotional support from health care providers
Women with endometriosis face serious emotional issues stemming from the disease, especially surrounding fertility. Quite often, long-term success in treating chronic pain is determined in part by the quality of the relationship between a patient and her treatment providers.

Dr. Steven Kvaal, a clinical psychologist at Swedish Covenant Hospital, says making personal connections is vital: “It’s important for treatment providers to engage in trying to apply their medical or psychological knowledge for diagnosis and treatment, while at the same time making a person-to-person empathic connection with the patient.”

Given the knowledge we have about treating chronic pain, says Kvaal, “by definition, it’s something we can’t cure. I think it’s important that we offer a supportive relationship with the patients, which I think makes it easier for them to accept the limitations of our intervention.”

For many people with chronic pain, it’s easy to feel isolated or unheard. A strong relationship with their health care provider can make a big difference in a patient’s attitude about a future that does not include a cure.

Research: what’s on the horizon for endometriosis?
In the U.S., 6.3 million women have endometriosis, yet research grant funding from the National Institutes of Health in 2010 was only $16 million — a disproportionately small amount, according to a 2011 report by the Chronic Pain Research Alliance (CPRA).

Dziadosz-Jones says her interest in endometriosis-related research is focused on examining the benefits of robotic surgery: “I’d be interested to see more on how patients do after having endometrial laser oblation of endometrial implants by robotic surgery, because they’ve shown that recovery time is so much faster.”

She says other research is focused on trying to determine the pathogenesis of the disease; right now, there are many theories, and finding a genetic tie would be helpful.

Baker says she’s optimistic about the increase in popularity of pelvic floor physical therapy, as it offers patients another treatment option.

“The pelvic floor world is still fairly new and fairly young in terms of therapy, and I think there’s a shortage of therapists, let alone therapists to do research,” she says. “I fully support the need for more research; I definitely think it’s underfunded and underrepresented.”

The Endometriosis Association has posted some information on its research partnership with the Vanderbuilt University School of Medicine; for a more comprehensive list of current research projects, check out the NIH’s ClinicalTrials.gov site.

Deana’s story: Life with endometriosis
Even as a very young girl, Deana, a 29-year-old living in the northwest suburbs, experienced symptoms of endometriosis. Her first periods started when she was in fifth grade and were extremely painful, lasting almost three weeks at a time. In her late teens, birth control pills helped temper her symptoms.

Around her 25th birthday, Deana started experiencing even more extreme symptoms. Her gynecologist performed a laparoscopy, during which he diagnosed her definitively with endometriosis and removed migrated endometrial tissue that was causing pain with her cycles. The procedure provided some relief.

“People don’t realize…that dealing with pain on that level is really tiring and draining. It takes a lot out of you,” says Deana. “So it is kind of this snowball effect: my uterus hurts a lot, OK, fine. Then I’m tired and I don’t want to get up, I don’t want to eat, I don’t want to do anything. Fatigue sets in; it affects your mood. It just really is multi-dimensional.”

When Deana and her husband started planning a family, “we didn’t necessarily have the luxury of time,” says Deana. She discovered that to become pregnant, she would have to endure induced periods and medication to force ovulation.

The process was challenging for both Deana and her husband: “As time went on and it became apparent we were going to have some difficulty getting pregnant, every facet of our life got examined a little more closely.”

She eventually did conceive, and now has a 14-month-old son.

Deana says as a younger woman, despite the pain, having endometriosis didn’t seem so dramatic.

“It wasn’t until I found myself in a serious relationship and contemplating our future together where it became apparent to me, this is so much more than just having crappy periods — that it could really affect my life and the outcome of my relationship and whether or not I would have a family.”

Now she and her husband are trying for another child. She wonders what she’ll do for treatment later in life: a premature hysterectomy may be the only way to cease her symptoms.

*Editor’s Note: The patients we interviewed for this series asked that we protect their privacy by not sharing their names. We felt it was important to share these testimonials to help shed light on the day-to-day impact these conditions have on local women.

5 tips on searching for chronic illness support groups
1. Look for a group that contains a mix of people from different backgrounds, including some who are near your age; this will help you gather different perspectives and find people you can relate to.
2. Ask your health care providers if they know of any reputable groups in your area; their recommendations are often trustworthy.
3. Check with local hospitals to see if they host support groups near you.
4. Be prepared to use support groups as a supplement to the other support you may receive from friends, family and your health care team — not as your only source of support and encouragement.
5. If you join a group and realize it’s not really a good fit (it’s too far to drive, or too many people are negative), quit it! Your time is precious. You’ll be able to find another.

Endometriosis support group resources
• Daily Strength offers a vibrant online support group for those with endometriosis.
• More information on local supports group can be obtained by contacting the Endometriosis Association directly.

More resources online
• Endometriosis Association 
• Pelvic Floor Disorders Network
• International Pelvic Pain Society
• Healthy Women
• Endometriosis Research Center
• For Grace: Empowering Women in Pain 
• American Chronic Pain Association 
• American Pain Foundation
• U.S. Pain Foundation 
• Campaign to End Chronic Pain in Women

• Login
• Comment