Endometriosis: 10 Things You Need To Know
Dr. Shaun Williams, Partner and Reproductive Endocrinologist at Reproductive Medicine Associates of Connecticut, and Casey Berna, Advocate and Counselor in the Endometriosis Community, had a dynamic discussion on Facebook entitled, "The Elephant In The Room: Endometriosis." During this conversation, Dr. Williams and Casey talked about the challenges that diagnosing and treating endometriosis presents to both patients and providers.
As a woman with endometriosis, Casey shares a personal account of the struggles she faced and what it's like to live with the disease. Dr. Williams, an endometriosis specialist at our practice, brings medical expertise and solution-focused advice to one of the biggest hurdles women with endometriosis face: difficulty with building their family.
Want to learn the basics of endometriosis?
Watch the original Facebook Live with Dr. Williams and Casey to hear the entire conversation, or check out the ten helpful takeaways below.
The Top 10 Things You Need To Know
1) Endometriosis is a personal, unique journey for everyone.
Endometriosis is a challenging disease to treat and can often be seen as an enigma to both patients and providers. There is no one, clear path on how to live with, diagnose, or treat endometriosis - each course of action is highly customized to each woman experiencing the disease.
2) Speak up for yourself.
Patients should talk to their health care provider if they are having any pelvic pain, painful cramps, diarrhea, constipation, painful sex, bladder or back pain, or fatigue. These could be symptoms indicative of endometriosis. Depending on where the pain is, that health care provider could be a Primary Care Provider (PCP), an Obstetrician/Gynecologist, or another specialist. Your PCP may be the best health care professional to start with, helping guide you to an appropriate specialist.
3) Treating endometriosis, a disease without a cure, can be tricky.
While treatments and medications can alleviate some symptoms of endometriosis for certain patients, these medications do not cure the disease, and most are not an option for patients who are actively trying to conceive. It is important to find an endometriosis specialist who listens to your goals (whether those are to become pregnant, alleviate pain, increase energy, seek mental/emotional support, or all of the above!) and guides you with options.
4) Protect your fertility.
Patients who have been diagnosed with endometriosis or have suspected endometriosis should see a reproductive endocrinologist immediately to assess fertility. Egg freezing is a treatment option available for patients who are concerned about the potential impact of endometriosis on their eggs, but who are not ready to try to conceive.
5) You can become pregnant with endometriosis, whether through Assisted Reproductive Technology (ART) or naturally.
According to a study in 2010, 30-50% of women with endometriosis can experience problems with fertility. In Vitro Fertilization has been shown to be the most successful treatment option for women with endometriosis who are struggling with building their family.
6) Seek expert care when treating endometriosis.
Endometriosis is a disease that occurs outside of the uterus. Having a hysterectomy does not treat endometriosis. If you are being given that treatment option, it is important to seek out an endometriosis specialist who can offer more effective options that also spare reproductive organs. If you have not built your family yet, removing the reproductive organs eliminates the option of becoming pregnant or carrying a pregnancy.
7) It is important to add variety to your endometriosis support.
For patients who present any versions of this disease, being referred to multidisciplinary providers, such as a pelvic floor therapist, nutritionist, and mental health support expert can help patients have an improved quality of life as well as improved fertility outcomes.
8) Know what to look for in an endometriosis specialist.
Seeking expert care can be overwhelming, confusing, and, for some, frustrating enough to indefinitely delay seeking help at all. According to Berna and Dr. Williams, there are specific of things you should look for in an endometriosis specialist, easing your research.
A thoughtful, effective endometriosis specialist is someone who performs excision surgery in a high-volume center of excellence, strives to identify and remove endometriosis throughout the body, even in difficult-to-operate places like the bowels, looks to preserve reproductive organs, and can inform a patient about other helpful multidisciplinary care providers. Make sure your endometriosis specialist is giving you highest quality care available to you.
9) Find support with other women who have endometriosis.
Online patient support groups such as the Facebook groups Nancy's Nook Endometriosis Education, Endometropolis, and Endo Warriors, work to connect endometriosis patients with specialists as well as support and educate patients.
10) Find a care team that treats the whole patient.
Both endometriosis and infertility are two diseases that can both be physically and emotionally challenging, requiring a team across multiple disciplines. Having a compassionate team of providers and a strong support system in place can help patients meet these difficult challenges!
It's clear from these takeaways and the full-length Facebook Live that Casey and Dr. Williams share a common belief: be your best advocate. Endometriosis is unique to each woman, so it's important to speak up about how you're feeling, and it's important to share your goals with your care team. Additionally, seeking support through multidisciplinary providers and support groups is a great way for you to not only cope with this disease but to help other women in a similar situation.
Together, with the help of a thoughtful, expert care team, the backing of the endometriosis community, and your own advocacy, you give yourself the best shot at overcoming your symptoms and moving forward in life.
About Virginia Hamilton Furnari
Virginia Hamilton Furnari is RMA of Connecticut’s Brand Specialist and has a background in writing, marketing, and content production. In addition to helping mold the RMA of CT brand through blogs, videos, and events, she is also a patient and has undergone many fertility treatments. Given her professional and personal involvement in the fertility community, she has immersed her mind, body, and soul in family-building education.