Several weeks ago, during Endometriosis Awareness Month, 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 (the live version also addresses what it’s like to live with endometriosis, as shared by Casey.) Distilled down, here are some of the most relevant points presented as well as the follow up information requested by the viewers and participants.
The Top 10 Things You Need To Know
1) 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 is highly idealized to each woman experiencing the disease.
2) 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, to help guide you to an appropriate specialist.
3) While medical treatments (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.
4) 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) In Vitro Fertilization has been shown to be the most successful treatment for those patients wanting to conceive who are struggling with endometriosis and infertility.
6) 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) For patients who present complex versions of this disease, being referred to multidisciplinary providers, such as q surgical excision specialist, 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) An 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 places to operate like the bowel or ureters, looks to preserve reproductive organs, and can inform a patient about other helpful multidisciplinary care providers.
9) Facebook patient support groups such as Nancy's Nook Endometriosis Education, Endometropolis, and Endo Warriors, work to connect endometriosis patients with specialists as well as support and educate patients.
10) Both endometriosis and infertility are two diseases that can both be physically and emotionally challenging. Having a compassionate team of providers and a strong support system in place can help patients meet these difficult challenges!
#FliptheScript: Talk About Endometriosis All Year Long
National Infertility Awareness Week (NIAW) is later this month- April 22-28. Resolve: The National Infertility Association’s theme this year is #FliptheScript and RMACT will be taking that on with endometriosis. #FliptheScript by signing the pledge to empower all those with this disease. #176Million1Voice
Talk about endometriosis all year long. Keep the conversation alive.