Lately, I’ve been getting a lot of DMs about #Endometriosis again, so here is an overview of what the disease is, common symptoms, my personal experience, and what your first steps should be when looking for answers —
Endometriosis is a condition affecting 1 in 10 women, worldwide, in which “cells similar to those in the endometrium, the layer of tissue that normally covers the inside of the uterus, grow outside of it” (Via Wikipedia — Source: nichd.nih.gov, 2017).
Common symptoms are chronic, painful pelvic pain, heavy bleeding during menstruation and painful, long-lasting periods, infertility, dyspareunia/painful sex, back pain, leg pain, GI issues, food aversions and sensitivities, migraines, hormonal imbalances, acne, dysmenorrhea/cramping, urinary tract issues, rectal pain, pain with bowel movements, UTIs, urinary pain, inflammation, chronic fatigue, and more.
The ONLY WAY TO BE DIAGNOSED WITH ENDOMETRIOSIS IS VIA LAPAROSCOPY. YOU CAN NOT DETECT ENDOMETRIOSIS LESIONS AND/OR ADHESIONS BY ULTRASOUND, MRI, X-RAY OR CT SCAN.
There is no cure for Endometriosis and no non-invasive treatment considered gold standard or best practice. Currently, the only gold standard/best short and long-term treatment option is excision surgery of endometriosis adhesions and lesions — often found in the uterus, the vagina, the cervix, the ovaries, the fallopian tubes, the peritoneum, the bladder, the vulva, the rectum, the bowels, the appendix, the lungs, the liver, and other tissues/ligaments, and organs (in rare cases endometriosis has been found in the brain).
A HYSTERECTOMY IS NOT A CURE. PREGNANCY IS NOT A CURE. BIRTH CONTROL IS NOT A CURE. GOING VEGAN IS NOT A CURE. BEING “ALL NATURAL” IS NOT A CURE. HORMONAL/PRE-MENOPAUSE PILLS OR INJECTIONS ARE NOT A CURE. I repeat — the gold standard treatment is excision surgery with a trained specialist.
“There are multiple causes of pain. Endometriosis lesions react to hormonal stimulation and may ‘bleed’ at the time of menstruation. The blood accumulates locally if it is not cleared shortly by the immune, circulatory, and lymphatic system. This may further lead to swelling, which triggers inflammation with the activation of cytokines, which results in pain. Another source of pain is the organ dislocation that arises from adhesion binding internal organs to each other. The ovaries, the uterus, the oviducts, the peritoneum, and the bladder can be bound together. Pain triggered in this way can last throughout the menstrual cycle, not just during menstrual periods” (via Wikipedia — source: Murray MT, Pizzorno J (2012). The Encyclopedia of Natural Medicine (3rd ed.). New York, NY: Simon and Schuster.).
Endometriotic lesions “can also develop their own nerve supply, thereby creating a direct and two-way interaction between lesions and the central nervous system, potentially producing a variety of individual differences in pain that can, in some women, become independent of the disease itself” (via Wikipedia — source: Stratton P, Berkley KJ (2011). ‘Chronic pelvic pain and endometriosis: translational evidence of the relationship and implications’).
So, you think you have Endometriosis? Track your symptoms and journal them. Tell your PCP and OBGYN you suspect you have Endometriosis based on your symptoms and level of pain. Join Nancy’s Nook on Facebook and download all the files/read through them all. YOU OBGYN IS MOST LIKELY NOT EDUCATED IN ENDOMETRIOSIS AND YOU NEED TO SEE A SPECIALIST WHO IS TRAINED EXTENSIVELY IN EXCISION SURGERY. THIS CAN SAVE YOUR ORGANS AND YOUR FERTILITY. DO NOT ACCEPT A LAPAROSCOPY BY AN OBGYN WHO DOES NOT DO EXCISION. Ask for a referral to an excision specialist in your area. Write appeals if your health insurance denies you — do not take no for an answer. Consider taking out a personal loan if you have to, in order to get proper treatment and help get your life back and reduce daily pain.
You do not deserve to live in chronic pain, and also do not deserve to be in debt over a condition that affects 1:10 women, however, unfortunately, this is our reality in women’s health care right now, and you need to decide the pros and cons and risks and rewards.
Lupron is not a cure for Endometriosis. Orlissa is not a cure for Endometriosis. These drugs often have life-long side-effects, like insomnia, anxiety, depression, cystic acne, hot flashes, and may affect your future fertility.
What did I do for my Endometriosis? After 2 years of agony and my primary care doctor convinced I was bat-shit crazy, she finally said, “Maybe you have Endometriosis??” I had never heard this term before and was sent BACK to my OBGYN to discuss options. I demanded to be opened up so they could tell me what was going on inside my body. I had previously tried practically all naturopathic and holistic options: acupuncture, cupping, massage, going vegan, cutting out sugar, carbs, dairy, red meat, carbonation, my soul…as well as taking birth control, taking anti-inflammatories, seeing a therapist, and being referred to psychiatry because clearly, “this pain was in my head.”
I finally had a laparoscopy by my OBGYN. He was clueless about Endometriosis, did not do excision (burned the lesions and adhesions), and made my pain worse. I also had two post-op infections and couldn’t even get through to their office to get proper antibiotics or a follow-up appointment. I literally flew from San Diego to Sacramento and had to see a random OBGYN off of YELP to make sure I wasn’t sepsis or dying. Disgusting way to treat a patient, especially when my surgery was done by the Head of the OBGYN Department at one of the top hospitals in San Diego. Despicable, really. I was never given photos from surgery or a proper diagnosis/post-op report. I was never given a stage of my Endometriosis — “a complex point system that assesses lesions and adhesions in the pelvic organs…that assesses physical disease only, not the level of pain or infertility; A person with Stage I endometriosis may have a little disease and severe pain, while a person with Stage IV endometriosis may have severe disease and no pain or vice versa” (via Wikipedia; Source: Vercellini P, Fedele L, Aimi G, Pietropaolo G, Consonni D, Crosignani PG (January 2007). “Association between endometriosis stage, lesion type, patient characteristics and severity of pelvic pain symptoms: a multivariate analysis of over 1000 patients”. Human Reproduction).
My first surgery was extremely traumatic, however, I was given a diagnosis of Endometriosis (the first time I have heard about this term besides from my PCP mentioning it once), and I was given a fire under my ass to become educated, empowered, and do whatever it took to get the care I deserved for this hellish condition. I moved from San Diego to northern California for family support for my son and me.
I found 2 excision specialists in the bay area — one did not accept insurance at all, and one needed a referral from my health insurance. I got the referral from my new primary care physician to see the specialist at Stanford (as they were part of the same health system/company I see), but Sutter denied me. They said my OBGYN had “extensive training in Endometriosis.” The only thing he had extensive training in was telling people there was no surgery that would help and that pregnancy and birth control were the only cure. He also said it was “too bad I was divorced so I just couldn’t have another baby.” Wow — welcome to 2020.
When open-enrollment came around, I found another excision specialist off the Nancy Nook list who was only 40 minutes away from me. It was also the first year ever my work offered health insurance to us. I immediately enrolled and paid for the most expensive HMO Plus insurance plan since this OBGYN/excision specialist was miraculously on it. I had an appointment with him and felt heard and understood for the first time EVER.
We came up with a plan to tide me over until surgery, and scheduled surgery when I had zero will to continue living in the pain I was in. Daily tasks were impossible and my chronic pain and chronic fatigue were stealing my motherhood and my spirit.
I had excision surgery in December 2019, and have taken continuous birth control since to stop periods and ovulation. The combination of these two “treatments” gave me my life back. Gave me my professional career path back. Gave me my journey through mom-life back. Brought the most wonderful partner into my world, and I now live more days pain-free than in pain, which I lost hope of.
Please remember to keep fighting for yourself. Keep speaking up. Read, study, and examine EVERYTHING ABOUT ENDOMETRIOSIS.
Then, decide what’s right for you…
You can read more about my personal experience in an interview for ABC and Good Morning America, here, and hear more about my story in an article in SHAPE, here, and an article in sheknows, here.
P.S. — If you have a laparoscopy and no lesions or adhesions / Endometriosis is found after your tissue samples are sent to pathology, look into the following conditions: adenomyosis, pelvic adhesions, pelvic inflammatory disease, congenital anomalies of the reproductive tract, and ovarian or tubal masses (via Wikipedia — Source: Practice Committee of the American Society for Reproductive Medicine (April 2014). “Treatment of pelvic pain associated with endometriosis: a committee opinion”. Fertility and Sterility).
P.P.S. — Please follow @speakupspeakendo on Instagram or Speak Up Speak Endo on Facebook so you never feel alone. It’s a collaborative space where women all over the world speak up speak endo, sharing their voices and their symptoms, daily life with Endometriosis, and their overall experience living with a chronic illness.
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