Endometriosis is a painful inflammatory condition affecting 10% of women and adolescents. Often thought of as a pelvic disease, endometriosis is actually a systemic condition that is often defined as a disease in which cells similar to the lining of the uterus, or endometrium, grow outside the uterus (Mayo Clinic).
This means endometrial tissue deposits can be located anywhere in the body, including but not limited to, uterus, ovaries, bowel, bladder, kidneys, liver, lungs, various nerves and even the brain.
These inflammatory deposits, wherever located can be incredibly painful and bleed just as the uterine lining does during a woman’s period. They are highly inflammatory at all times causing severe pelvic and abdominal pain/bloating, painful intercourse, nausea, fatigue, bowel and digestive issues, bladder pain, migraines, breathing issues/pneumothorax if found on lungs/diaphragm as well as painful periods and ovulation.
Endometriosis is also one of main culprits in women suffering from infertility and listed as one of the top 5 most painful conditions.
Ten percent of women suffer from endometriosis with an average diagnosis taking 8-10 years. There is no known cause, prevention or cure, only theories of why it occurs and treatment to reduce symptoms. These treatments often come with dangerous side effects, leaving surgical excision of the disease as the best option. Even with excision, disease can be left behind and can reoccur. Endometriosis can affect a women’s physical health, mental health and often affects their ability to work and seriously diminishes their quality of life.
How does a disease that affects 1 in 10 women, listed as one of the most painful conditions causing 200 million women worldwide to suffer physically, mentally and socioeconomically have such delay in diagnosis? There is much misinformation on endometriosis that has been ingrained into women’s health and frankly not enough research to learn more about the disease. The lack of knowledge most gynecologists have about endometriosis does their patients a disservice, delaying diagnosis and a plan for care. Even with accurate diagnosis, a plan for care does not always help patients. Because the disease is so complex, a one size fits all treatment does not work. More research is needed to learn more about the disease’s origin and complexity so women can have better, individualized treatment plans and more successful outcomes. You can become a part of that research by participating in studies if you have or are suspected to have endometriosis.
My Personal Story Living With Endometriosis
From the time I got my first period, I started having digestive issues. Issues that would take me out of school multiple days a month. Abdominal pain and migraines so severe it interfered with my extracurricular activities and social life in addition to schoolwork. These symptoms would be diagnosed as ulcers, ibs, hormonal migraines and dismissed as all girls go through this during puberty. I suffered and when puberty was over, I kept suffering.
In high school, I had pelvic pain so severe, I underwent testing for kidney stones, bladder issues, multiple STD testing even though I had never had intercourse. I had my first laparoscopy at 17.
When I woke, they said I had a cyst that had ruptured, cleaned up the residual fluid and put me on birth control. Most of the pelvic pain subsided but my digestive issues were still there, being again, dismissed as IBS. I was put on various meds for constipation and migraines. My migraines turned so severe, losing speech, vision, numbness and tingling. MRI and EMG studies ordered and they could not rule out TIA’s. Endoscopies and colonoscopies showing nothing.
This went on for years…
When I was married and wanted to conceive, I stopped the birth control. I experienced an intense shift in hormones but was pregnant within 3 months. After I had my baby, I was unable to go back on birth control due to severe side effects-acne, depression and severe bleeding on pills and mirena IUD. I decided to take my chances and if I ended up expecting again, it would be a blessing.
I was never able to conceive after.
Instead, I was suffering from debilitating pain that came on within a year of having my child. When I should have been enjoying my new baby girl, I was on a couch in a fetal position in pain most days. It got worse. My pelvic pain was intense, my migraines got worse, my joints started to hurt, my digestive issues became more severe and abdominal pain and discomfort was there, always. On top of that, I always felt like I had the flu the week leading up to my period with extreme bloating. I could not wear tampons anymore my pelvic floor was in constant spasm. Intercourse was almost unbearable.
I was repeatedly dismissed and told I had a new baby, I was stressed. My body had changed and would get to a new normal. It did not. None of this felt normal.
It was taking me out of living my everyday life, enjoying time with my family, my hobbies, working. A day did not go by when I wasn’t in some form of debilitating pain or serious discomfort.
In addition to my other symptoms, I began bleeding nonstop and after 3 months, my OBGYN finally ordered an ultrasound, said I had a small cyst, negligible. The bleeding and pain did not stop and I was so nauseous, I could not eat. I had lost 10lbs. My sister had undergone a serious reproductive surgery the year prior so when I visited her in another state, she insisted I see her Dr. He did another ultrasound and the cyst had doubled it’s size in a month. He said it needed to come out or my ovary could possibly rupture.
I took these records back to my Dr who scheduled me for surgery. She drained the cyst and told me I had a little bit of something called endometriosis. “a few powder burn spots but not much, not enough to really be an issue.” What did that mean? How can something foreign in your body not be an issue? If it wasn’t an issue, why was I in constant pain? And why did she want to put me in medical menopause with hormone injections?
I was not confident in my surgeon so I started researching on my own. I found a reputable resource online that lead me to all things endometriosis. I learned that there was a lot of misinformation on the disease, from it’s origin to how it is diagnosed and treated. That it can appear in a variation of colors.
There is no 100% cure and treatments are not always effective and can have serious side effects. I learned that this was most likely the reason I could not conceive again. I also discovered that most OBGYN’s are not properly trained to identify nor treat the disease. Most have a lecture in med school and just prescribe more hormones to either suppress your period or put you in menopause for periods of time.
All of this sounded wrong, just medically wrong and criminal. I learned most dr’s will burn the disease rather than cut it out, resulting in fast recurrence and repeated surgeries. Some women I met on this journey had had surgery every 2 years for more than a decade! I also found that there are Dr’s who dedicate their life to studying this disease and that if I wanted proper care and treatment, I would take matters into my own hands, advocate for myself by locating an expert and traveling for care.
I did just that, sent my records and all imaging to a surgeon who specialized in endometriosis, diagnosing and excising it property to limit recurrence. I travelled to Boston, MA and after my surgery, I learned that I did not have “a little bit of” endometriosis but that it was covering my bowel.
He had to cut it out of my sigmoid colon and stitch it back up. HELLO! DIGESTIVE ISSUES, finally explained!
My biopsies came back positive all throughout my pelvis and I had deep infiltrating endometriosis (DIE) is my recto vaginal area. I did get a lot of relief from that surgery but unfortunately my fertility never recovered and I was never able to have another child. I reconciled that in just needing to be well and healthy for the one I was so lucky to already have. He also put me in pelvic floor physical therapy. It changed my life.
But this disease has no cure and just eight years later , I am experiencing recurrence of disease, confirmed by MRI. When you have DIE, it can show up on an MRI and recurrence is higher even if excised properly. I was 13 when I started having symptoms. I had several laparoscopic surgeries during these years. Not to mention MRI’s, CT’s, ultrasounds, colonoscopies, endoscopies, various lab testing, various meds for IBS/Migraines. I was 31 when diagnosed with Endo. 34 years old when I had my first proper surgery. 18 years from onset of symptoms to receive a diagnosis and even more to be able to receive proper care.
This is not a woman’s lot in life, this is pure dismissal of women’s health issues and neglect by our providers. Some of this dismissal in just frankly lack of knowledge by our providers and birth control being a catch all med for anything reproductive health related but a lot is due to lack of research and funding. My endometriosis surgeon said, “a man wouldn’t last a week with what you have had to endure. If it were a male disease, there would be a cure.” Luckily, more and more women are advocating for themselves and demanding more research on a disease that affects 200 million women across the globe. It is with their perseverance and persistence that there is becoming a demand for endometriosis research. I am thankful and grateful. No woman or young girl should have to wait 18 years for diagnosis and proper treatment.”
