My Endometriosis Journey Part 2:
What is Endometriosis?
“Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder 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.”
In my last blog post, we learned that I have Stage II, which we will go into more later. I want to outline everything that I know about this in order to raise awareness about it, because it is scarily common in women, and a lot of women may have it and don’t even know. (I will link all of the sources used at the bottom of this post, so you can check them out for yourself!)
Endometriosis affects 1 out of 10 women in childbearing age (2-10% of women). The cause of endometriosis is unknown, and there is currently no cure, although there is treatment. There are some theories as to why endometriosis happens:
1. one theory suggests that during menstruation, some of the tissue backs up through the fallopian tubes, into the abdomen, like a reverse menstruation, where it attaches and grows.
2. another theory suggests that endometrial tissue may travel and implant via blood or lymphatic channels, similar to the way cancer cells spread.
3. a third theory suggests that cells in any location may transform into endometrial cells.
This disease is also genetic, and can appear in families, which is true in my case. My grandmother, mother, aunt, and myself all have a form of this disease.
Endometriosis can be found on the ovaries, the fallopian tubes, ligaments that support the uterus, the space between the uterus and the rectum, the space between the uterus and bladder, the outer surface of the uterus, and the lining of the pelvic cavity. Endometriosis has been found in every organ and anatomical structure in the body, but it is most commonly found in the places listed above. Because it can grow on every organ, this includes the kidneys, eyes, liver, pancreas, brain, bone, heart, skin, and nasal cavity if severe enough.
The symptoms of endometriosis are as follows: pain, especially excessive menstrual cramps that may be felt in the abdomen or lower back, abnormal or heavy menstrual flow, infertility, painful urination during menstrual periods, painful bowel movements during menstrual periods, or other gastrointestinal problems such as diarrhea, constipation, or nausea.
One important thing to note is that the pain that a woman experiences is NOT directly correlated to how severe the disease is. A women with Stage 4 endometriosis may experience no pain whatsoever, whereas a woman with Stage 1 may have inconsolable pain.
There is an important connection to make between women who have endometriosis and those who struggle with infertility. Having endometriosis does not guarantee that you will be infertile, but it does increase your chances. 24-50 percent of women who experience infertility are found to have endometriosis. In these cases, surgery to remove it can restore fertility. In other cases ( a very small percentage) women remain infertile.
Diagnosis begins with a gynecologist completing a physical examination, including a pelvic exam, but can ONLY be certain through a laparoscopic surgery. If the endometriosis is progressed enough, it can be diagnosed just by visually seeing it, but sometimes in stage 1, you may need a biopsy of tissue to determine. A laparoscopy is a minor surgical procedure where a thin tube with a camera is inserted into the abdomen through a small incision.
It is important to note that it takes an average of 7 years. This is insane. Not a lot of women are going to persist through 7 years of doctors in order to get diagnosis, and surgery. It should not be this hard to get a diagnosis, which is why I am trying to raise awareness, because mine took 5 years.
There are four stages of endometriosis, which I will go into further detail. The most common system used is the American Society for Reproductive Medicine Scale (ASRM). The Endometriosis Foundation of America has their own classification, but for my purposes, I will be combining the two in my explanation, because they are similar:
Stage 1 (peritoneal endometriosis): Minimal with few superficial implants. The membrane that lines the abdomen is infiltrated with endometriosis tissue.
Stage 2 (Ovarian Endometriosis): Mild with more and deeper implants. It is established within the ovaries, and these forms of ovarian cysts are of particular concern due to their risk of breaking and spreading endometriosis within the pelvic cavity.
Stage 3 (Deep Infiltrating Endometriosis I (DIE I)): Moderate with many deep implants. Small cysts on one or both ovaries. Presence of filmy adhesions. The first form of deep infiltrating endometriosis involves organs within the pelvic cavity. This can include the ovaries, rectum, uterus, and significantly distort the anatomy of the pelvic organs.
Stage 4 (Deep Infiltrating Endometriosis II (DIE II)): Severe with many deep implants. Large cysts on one or both ovaries and many dense adhesions. The other more extreme form of Deep Infiltrating Endometriosis involves organs both within and outside of the pelvic cavity. This can include bowels, appendix, diaphragm, heart and lungs, among others.
Remember, that the stage of the disease does not correlate with the amount of pain that the woman experiences.
*Personally I do not like that they use the acronym DIE in the classifications. OOF.
If a laparoscopic surgery does not succeed, a laparotomy (a more extensive surgery) can be used to remove as much of the tissue as possible without damaging healthy tissue. If this is not successful, many women use a hysterectomy to remove the uterus and possibly the ovaries to prevent tissue from growing back.
A lot of treatment for endometriosis is pain management, and laparoscopic surgery to remove the disease. There is no official cure.
If you think you have endometriosis, please reach out to your OBGYN, and if you are in the South Central Pennsylvania Region, please reach out to Dr. Harkins, he is an amazing doctor that has helped many women already, including myself.
You are not alone. This disease affects all and everyone. Here are some celebrities with endometriosis: Amy Schumer, Tia Mowry-Hardrict, Lena Dunham, Chrissy Teigen, Mandy Moore, Julianne Hough, Halsey, Whoopi Goldberg, and Alaia Baldwin Aronow.
Sources:
https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis
http://nezhat.org/endometriosis-treatment/where-does-endometriosis-grow/#:~:text=Endometriosis%20has%20been%20found%20in,anatomical%20structure%20in%20the%20body.
https://www.advancedgynaecologymelbourne.com.au/endometriosis/stages
https://academic.oup.com/humrep/article/18/4/756/596537
https://www.everydayhealth.com/endometriosis/living-with/celebrities-who-speak-endometriosis/
Some great social media resources if you want to do your own research:
@/endohealthhub on Instagram
@/endometriosismemes on Instagram
@/endogirlgang on Instagram
@/chronicallyillgoddess on Instagram
@/endohumour on Instagram
@/the_endo_space on Instagram
‘The Endo Space’ Group on Facebook
‘Endometriosis Support Group’ Group on Facebook
‘Undiagnosed Illness Support Group’ Group on Facebook
and if you are in South Central Pennsylvania, check out ‘Central PA Endometriosis Support Network’ Group on Facebook.
