Local Resources for Endometriosis Sufferers

By Christine Frackelton

Endometriosis, a chronic, painful disorder of the female reproductive system, may seem like a topic not in the realm of doula work.  Doulas, after all, are generally attendants at childbirth and servants to the postpartum mother.  Why then, is it worthwhile for me to consider endometriosis?

  • An estimated 6% – 20% of childbearing-age American women suffer from endometriosis.
  • 176 million individuals worldwide suffer from endometriosis, costing and estimated $119 billion annually.
  • Endometriosis results in abnormally severe pain.  Pain most often occurs during menstruation, around menstruation, and after sex.
  • Those with endometriosis endure longer menstrual periods.  It is frequently dismissed by those who do not really understand the disease as laziness and whining about “just” the period.
  • Endometriosis can adversely impair quality of life, ability to work, and procreate.  It affects physical, mental, and social well-being.
  • Endometriosis is a major contributor to infertility.  An estimated 21-44% of women facing infertility have endometriosis.
  • Endometriosis is a leading cause of the 600,000 hysterectomies performed each year in the United States.

If I want to be entirely selfish about this, I could admit that, hey, maybe I would have more clients if fewer women had endometriosis-induced infertility.  Maybe there would also be more women unafraid of labor, which is often likened to menstrual cramps.  That would certainly make my job easier, and may result in more women actively preparing for natural labor than medicated labor, which could result in improved birth outcomes.

However, I have seen the pain on friends’ faces.  I have seen the heartbreak over their inability to have more children.  These are the reasons why Endometriosis Awareness Month exists, and why I am boldly blogging about it.

Therapies exist, of course.  From medication that suppresses the disease (treating symptoms without curing the disease), to physical therapy, to a range of surgeries (excision of the disease or even of the reproductive organs themselves), there are options to give a woman hope.  Unfortunately, the hope has its limits.  Hormone therapy is associated with a higher risk of osteoporosis (loss of bone density), bone and joint aches, mood swings, hair loss, breast tenderness, hot flashes, vaginal dryness, loss of libido, bloating, nausea, weight gain (which seems counterproductive, considering a lower body mass index may aid with relief of endometriosis symptoms), and other potential symptoms.  Surgery comes with an even greater list of risks, including potential infection and death.  Women facing endometriosis are often desperate for a solution, yet the conventional therapies are not always all they hope for, and the desired results are unfortunately not guaranteed, even with the best surgeons.

Complicating matters, a woman who conceives a baby after a laparoscopy may have a slower and potentially less smooth birth.  Laparoscopy is a procedure used for diagnosing endometriosis as well as excising mild to moderate growths of endometriosis. Like other minor surgeries that require insertion of a device into, and later out of, the cervix, it puts the cervix in a vulnerable position that could result in minor injury.   Cervical scar tissue is not commonly talked about as a factor in birth, but I am personally aware of cases where natural labor was impeded by cervical scar tissue that required a physician breaking up the tissue during labor for healthy progress to finally occur.

On the bright side, though, pregnancy itself may help balance out the hormones that cause endometriosis, potentially relieving the pain for 9 months (or longer, if the mother has lactational amenorrhea, or lack of menstruation due to breastfeeding).

So, we have pain, risks, challenges, and a glimmer of hope.  What else?  

More hope.

I am, thankfully, not suffering from endometriosis myself, nor have I ever in the past. I have, however, been learning about it, as I listen to more women’s stories.  I have much more to learn, too.  I realize that.  The more that I listen to women, the more I am humbled by the great challenges so many wake up to each day, be it in the trials of their work or home or the trials of difficult pregnancies, dark postpartum months, and other health battles, like endometriosis.  I am not a doctor, midwife, therapist, social worker, insurance actuary, hospital administrator, legislator, newspaper editor, or other person in a powerful position to diagnose and treat conditions or bring widespread attention, sympathy, and change for those who need it.  I am merely a doula.  I have a growing set of skills, tools, and knowledge, and I have this little platform, my blog.  Mainly, though, I have my ears and my heart.  I am here, and I want to listen to you.  I believe that great health can take place when a person is recognized, validated, understood, and cared about.  With that, I humbly confess that I don’t have all the answers for those who are dealing with endometriosis, or any other wellness issue.   However, I have dug around and found a few extra resources for those who are looking for more hope:

  1. Acupuncture.  A holistic, oriental practice developed over thousands of years to heal the body by restoring healthy, balanced energy (chi) flow, the risks of acupuncture are minimal, and at the very least (in my opinion), the experience is very relaxing.  Feel free to ask me for my recommendations for local acupuncturists!
  2. Diet & nutrition modifications.  The majority of medical doctors never take a class in nutrition, so if your diet is contributing to your disease, you need resources from others who have used nutritional therapy to heal their endometriosis.  The Endometriosis Research Center’s Diet & Nutrition Sub-Group is a great place to start asking questions and reading others’ stories.
  3. Follow the Endometriosis Research Center on Facebook.  The Endometriosis Research Center is a non-profit organization that promotes and protects the interests of those with confirmed and suspected cases of endometriosis.  They even reject money from the manufacturers of medications designed to treat endometriosis, ensuring that the research supported by ERC is unbiased.  The Facebook group is a particularly encouraging place to visit, because it provides daily updates including the latest research, and helpful resources — even a list of celebrities with confirmed endometriosis!  It could also be a good place to make some sympathetic friends; more than 30,000 people are fans.
  4. Mayan Abdominal Massage.  Based on ancient Mayan therapies, physical manipulation of your abdominal organs by massage could bring healing and increased fertility to those who suffer from endometriosis and other reproductive diseases.  We are fortunate to have practitioners in Palm Beach County who are trained in the technique, and from my conversations with local mothers and from some of these therapists myself, I know that this technique can be very effective, with almost no adverse side effects!
  5.  Herbal Steaming.  Also called yoni steaming (yoni is the Sanskrit word that refers to the all of the woman’s genitals and womb), chai yok (based on the Korean tradition), vaginal steaming, and v-steaming, the relaxing ancient ritual delivers warmth to the pelvis and reproductive system, increasing blood flow (and thereby oxygen) to the region, relaxing the soft tissues in the pelvis, and cleansing the reproductive system.  Results are anecdotal so far, but promising.  Would you be interested in trying it?  You will need some herbs, boiling hot water, and a seat with an opening in the middle.  If you’d like to make it easier, I can bring over everything you need to your home, guide you through the process, and even watch your children or take care of light household tasks while you get pampered.  Contact me, if you’re interested!

Empathy.  Support groups.  Alternative therapies from complementary or traditional medicine.  These are the things that women should have available when they face endometriosis, in addition to the choices that obstetricians, certified nurse midwives, and nurse practitioners offer.

We need each other, as is the case with any tribulation or adversity that we swim through in life.I have needed others, and will need others again, to be my support during my trials.  At this time, I have freedom to be that support to others.

I may typically work with pregnant, birthing, and postpartum families, but as a full-spectrum doula, I will not limit myself.  If you or someone you care about is interested in having a support person through endometriosis or any other trial, I am here for you.

 

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