Endometriosis: Misunderstood, Undertreated, and Uncomfortable
By Teresa Kenney WHNP
As a women’s health nurse practitioner, I have spoken to many women who suffer with a disease called endometriosis. Most of them spent years seeking help from doctors before finally getting a diagnosis and a treatment to relieve their symptoms of debilitating pain and infertility. March is the endometriosis awareness month, so let’s start the conversation about how we can bring awareness and education to this important issue in women’s health.
Endometriosis is a physical disease where the tissue that normally lines the uterus implants itself to other locations outside of the uterus.
As the hormones begin to change in the cycle, the endometrial tissue responds by proliferating and growing. This is problematic since endometriosis is outside the uterus, implanted in abnormal places, which leads to a toxicity or state of inflammation in the reproductive system.
Endometriosis is a disease that affects women’s quality of life, fertility, and overall health. The disease affects an estimated 1 in 10 women during their reproductive years, usually between the ages of 15 to 49. This amounts to approximately 176 million women in the world.1
For both patients and providers, there is a lack of awareness of the nature of endo, and therefore it can take up to 10 years to get the correct diagnosis. Many women suffer for years before getting answers to why they are experiencing the symptoms of endometriosis, which include: painful periods, ovulation pain, chronic pelvic pain, pain with intercourse, heavy or abnormal bleeding, premenstrual syndrome (PMS) or hormone imbalance, intestinal issues like diarrhea and IBS (irritable bowel symptoms), infertility, and miscarriage. These symptoms not only reduce patients quality of life overall, but it also leads to lost productivity in the workplace due to the chronic and debilitating pain.2
There is no definitive cause of endometriosis, but there are factors that may put you at higher risk including: a family history of endometriosis, early age of first menstrual cycle, shorter than normal menstrual cycles (less than 27 days), never giving birth, and possibly low body weight and excess alcohol consumption.3
The most common approach to treating endometriosis has been to use medications that attempt to suppress the symptoms of the disease.
Birth control pills suppress ovulation, and keep the body in a steady state of hormone influence which can mask over the symptoms of endometriosis. This is symptomatic management, not treatment.
Although it may be helpful for a patient’s quality of life, it does not cure endometriosis. The disease will still be present after stopping this medication. For women who’ve never given birth, researchers have found that being on birth control for 5 years resulted in a 2.3 fold increased risk of an endometriosis diagnosis, compared to women who had never been on birth control.4
Another approach to dealing with endometriosis is to use a very strong medication called Lupron (leuprolide acetate). This drug puts a woman into a menopausal state which significantly decreases her hormone production. In some women with endometriosis, the disease will shrink and become less active. But this medication has significant drawbacks, including side effects similar to menopause like hot flashes, mood swings, and insomnia. Like the pill, it also is only a temporary symptomatic treatment, so when the drug is removed the endometriosis will return to its normal disease state in 6-12 months.
Ultimately, the best chance of cure is to remove the disease itself.
Endometriosis presents in a variety of ways on the pelvic organs, the bladder, rectum and intestines, sometimes even on the diaphragm and rarely in the lungs. These implants are visually seen and able to be diagnosed through a simple procedure called a diagnostic laparoscopy.
Spots of endometriosis can be removed from their abnormal locations by laser vaporization at the time of the diagnostic laparoscopy. This procedure is often recommended for mild and moderate endometriosis. About 50-70% of patients can be treated by laser laparoscopy and can avoid major surgery. Treatment using cautery (essentially burning off the tissue) is not recommended, as there is an extremely high recurrence rate.5
In cases of more moderate to severe endometriosis, experts believe that the most curative surgical approach to treat and prevent the reoccurrence of endometriosis is surgical excision. Excision of endometriosis is delicately cutting out the diseased tissue in
attempt to remove it fully, which is the most effective way to prevent reoccurrence of disease. This can be done with adhesion prevention techniques that prevent tissue damage.6
If surgery is done by a highly qualified surgeon, then reoccurrence rates remain below 10-20%. Surgery is also dramatically effective at reducing pain and restoring fertility in patients with endometriosis.
It is very important again to find a surgeon who is highly trained in this area, since most medical schools do not adequately train doctors in the proper diagnosis and treatment of endometriosis.
Doctors interested in excision of endometriosis have to go through advanced training in gynecologic surgery, they usually do more than 50 endometriosis surgeries a year, and their techniques involve not only the intent to treat the disease completely but learning those adhesion prevention skills, so that the surgery leads to a repaired reproductive system for years to come.7
There are physicians in a variety of practices who do have this advanced training, but finding them is difficult. One source of highly trained doctors are the fellowship trained OB/GYN’s from the Pope Paul VI Institute. A list of these physicians can be obtained at fertilitycare.org. As a provider familiar with the truth about endo, I also deeply value and recommend centers that are certified members of consortium of Pro Women’s Healthcare Centers (PWHC), because they either have doctors who can perform surgery or send you to those that can.
Pro Women’s Healthcare Centers are literate in this more natural, restorative philosophy of women’s health that believes in getting to the root of the problem.
And along with high-quality medicine, you can count on the PWHC approach, which also values you as a whole woman and understands your emotional needs and how difficult it is to face these health problems. If you are wondering if you could have endometriosis, remember that finding the right doctor is the most important step in leading to the correct diagnosis and treatment of your disease. Remember that suppressive treatments like birth control pills, Lupron or any other hormonal treatment can only offer temporary relief and not a cure for endometriosis. Ultimately the goal is to treat the woman as a holistic person in need of physical healing and restoration, and to cooperate with the fertility system rather than suppress or damage it.
Women deserve the highest quality of care when it comes to this disease, and awareness and education is the first step to healing.
Teresa Kenney WHNP is a Women’s Health Nurse Practitioner who has practiced for the last 18 years in Omaha Nebraska for both the Pope Paul VI Institute and Sancta Familia Medical practice. She is trained as a medical consultant practicing NaproTechnology, which seeks to cooperate with women’s bodies and solve the underlying issues in women’s health. She is a strong advocate for young women to learn about their fertility and their bodies and speaks frequently in her community. She is married to Daniel Kenney and has 8 kids, 5 fish, and a gecko lizard named Gilligan.
2 Nnoaham KE, Hummelshoj L, Webster P, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertility and sterility. 2011; 96(2):366-373.e8. doi:10.1016/j.fertnstert.2011.05.090.
4 https://www.factsaboutfertility.org/prior-contraceptive-use-increases-risk-of-endometriosis-among-women- without-children/ and https://www.popepaulvi.com/ncfwh-evaltreat.php
6 Near adhesion-free reconstructive pelvic surgery: Three distinct phases of progress over 23 years TW Hilgers – Journal of Gynecologic Surgery, 2010
7 Dlugi AM, Miller JD, Knittle J, Lupron Study Group. Lupron* depot (leuprolide acetate for depot suspension) in the treatment of endometriosis: a randomized, placebo-controlled, double blind study. Fertil Steril 1990;54:419 – 27.