This series was originally published in March 2020
If you haven’t read the previous posts in this series, find them here: Abby’s Story, Part 1: Diagnosis and Treatment, Abby’s Story, Part 2: Infertility and Hope, and Abby’s Story, Part 3: Endometriosis Advocacy
We are so grateful to both Abby and Dr. Khan for their work to raise awareness of and treatment for endometriosis
1. What is endometriosis?
Endometriosis is a common gynecologic condition, often painful, in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis- the peritoneum. In its infiltrating and aggressive forms, it can involve the bladder and bowel. Rarely, endometrial tissue may spread beyond pelvic organs. Common locations outside the pelvis include the diaphragm, lungs, and abdominal wall. Endometriosis can cause pain especially during menstrual periods, though the disease can be asymptomatic in certain women. Fertility problems also may develop and most women with endometriosis need treatment for infertility.
2. What causes endometriosis?
The exact mechanism by how disease processes start is unknown. There are, however, several proposed theories for development of the disease process. None are universally accepted.
Retrograde menstruation: In retrograde menstruation, menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity, instead of out of the body. These endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.
Transformation of peritoneal cells: In what’s known as the “induction theory,” experts propose that hormones or immune factors promote transformation of peritoneal cells — cells that line the inner side of your abdomen — into endometrial-like cells.
Embryonic cell transformation: Hormones such as estrogen may transform embryonic cells — cells in the earliest stages of development — into endometrial-like cell implants during puberty.
Surgical scar implantation: After a surgery, such as a hysterectomy or C-section, endometrial cells may attach to a surgical incision.
Endometrial cell transport: The blood vessels or tissue fluid (lymphatic) system may transport endometrial cells to other parts of the body.
Immune system disorder: A problem with the immune system may make the body unable to recognize and destroy endometrial-like tissue that’s growing outside the uterus.
3. How common is endometriosis?
Around 10% of women have endometriosis. This number is sometimes criticized as women without symptoms may go unnoticed. Some speculate that the actual prevalence of the disease could be around 30%.
4. What are common symptoms of endometriosis?
Most common symptoms include:
-Pain with menstrual cycles (pain often time worse a day before period starts)
-Pain with intercourse
-Urinary and bowel irritability around menstrual cycle
-Inability to get pregnant
-Daily pelvic pain
5. How do you tell the difference between “normal” period pains and endometriosis pains?
This is the million-dollar question! My response to patients with this question is very simple. I think if someone is seeking medical attention for “painful periods” they deserve a full workup. Whether the patient has pain due to endometriosis or not, any menstrual cycle that causes pain and distress to the patient should be taken seriously, and the patient should be evaluated for a list of conditions that can cause pain- endometriosis being on the top of that list.
6. How do you get diagnosed? Is surgery the only way to officially diagnose someone with it?
Diagnosis of disease is key. The gold standard for diagnosis is an outpatient surgery with laparoscopy, removal of disease implants, and evaluation of them under the microscope by a pathologist. Your provider may also use imaging modalities that can give more information and raise suspicion for disease (typically performed before surgery for diagnosis). These imaging modalities most often include an ultrasound and a more sensitive technique called MRI (magnetic resonance imaging).
7. What age is endometriosis typically found in a girl/woman?
This can vary a lot, however most young girls are unfortunately told that painful periods are a “normal” thing. Most young girls will hence be put on birth control pills. The disease is typically not discovered until these young women go off birth control in their late 20’s-early 30’s.
8. How long does a diagnosis usually take?
This is extremely variable but with some preliminary and unpublished data from our clinic, we think that on an average it can take 3-7 years before a true diagnosis for endometriosis is made in majority of women.
9. Many people think endometriosis is only found in your “lady parts” but this is not true. Where are other places that endometriosis can be found in the body?
Endometriosis is truly an enigmatic disease. Even though the pelvis is the most common area for growth of the disease, extra pelvic locations have been described. Even though this is not as common, endometriosis can involve non-gynecologic pelvic organs like the bladder, ureter, and bowel, and other extra pelvic areas that include the abdominal wall, diaphragm, lung, nasal cavity, and brain, to name a few.
10. How is the disease treated?
The primary approach to treatment of this disease is surgical diagnosis and excision (cutting out and removing diseased areas). Recurrence of disease can be treated with surgical and medical approaches, and is handled on a case by case basis, and primarily depend on whether fertility treatments are being considered.
11. How does endometriosis affect fertility?
There is no one agreed-upon mechanism by which endometriosis affects fertility. There are several proposed mechanisms for this phenomenon. Blockage of fallopian tubes, lower quality eggs, non-ideal environment for sperm, eggs and embryos, and issues with transport and implantation of embryos are all proposed theories for endometriosis-related infertility.
12. Is endometriosis hereditary?
Though the exact mechanisms remain unknown, there is a strong genetic component to the disease process. A first degree family relative (mother, full sibling) with the disease makes it more likely for the disease to be present in the patient.
13. What are some tips you have for women trying to find a specialist?
In my opinion, endometriosis deserves subspecialty care just like other subspecialty areas (cancer and infertility, etc.). It is crucial for women to speak up for themselves and be their own advocate. Finding an endometriosis specialist is key for treatment of this chronic disease. I always tell my patients to stick to the following key principles:
a) If you are not getting answers, get a 2nd opinion
b) Be an advocate for yourself and other women around you
c) Empower yourself with the correct information (beware of all kinds of information)
d) Look into patient advocacy groups and other online patient support groups that have excellent information
e) Find an endometriosis specialist near you
14. What tips do you have to help a woman be prepared for a meeting with a specialist? What should she bring or have ready to share?
Having a thorough history with a historical record of sequence of events is most useful. Other things that are very important to have for your first consultation:
a) Have a timeline of sequence of events, how your pain started, and how it got to what it is today
b) Have operative notes and if possible pictures of your previous surgery. I cannot emphasize enough on the importance of having pictures.
c) If any medications have been used, bring a complete list of what medications, and when they were used
d) Bring digital copies of films from previous imaging tests
e) List any dietary and non-medical coping mechanisms used
15. What lifestyle changes can be made to help manage endometriosis?
The medical literature supports several lifestyle changes that have proven beneficial for endometriosis related pain. These include but are not limited to the following:
– Use of cognitive behavioral therapy – to deal with daily pain
– Use of coping mechanisms like deep breathing and meditation
– Use of acupuncture
– Use of an anti-inflammatory diet
16. What advice would you give to girls/women who don’t feel heard either before being diagnosed or after?
Don’t give up. Continue to be an advocate for yourself and don’t lose hope. Get to a specialist and get to the root cause.
17. Endometriosis is not a widely-understood disease which can lead to individuals feeling very vulnerable and uncomfortable talking about it. What advice would you give to these individuals to help them feel more comfortable speaking up?
Empowering oneself with knowledge is key. Get to the correct resources and patient advocacy groups. Seek out the right doctors and continue to have an open dialogue with your health care providers. This is just the beginning. We are going to continue to understand this disease better, and through medical research and patient advocacy we will be more equipped to fight it in the years to come.
Dr. Zaraq Khan, M.B.B.S. is a Gynecologist and Reproductive Endocrinologist at Mayo Clinic, in Rochester, MN