What is endometriosis or “endo”?

Endometriosis is a disease where tissue similar to the lining of the uterus is found outside the uterus, on other parts of the body such as: bowel, bladder, tubes, appendix, diaphragm and even the lungs. This creates lesions that bleed causing inflammation, adhesions and pain. Organs are often fused together (often called frozen pelvis) and moved into unnatural places by these tough, fibrous scar tissue bands. For example, the bowel and an ovary may be “glued” together.

Endometriosis affects over 176 million (1 in 10) women worldwide. The average diagnosis for endometriosis takes ten years. There is no known cure for the disease.

What causes endometriosis?

The cause of endo is unknown, but some research shows it to be an autoimmune disorder caused by environmental toxins and epigenetics.

What are endometriosis symptoms?

Endometriosis is not just a painful period, and can occur throughout a women’s cycle or every day.  Symptoms include chronic pelvic pain, debilitating periods, difficulty with bladder/bowel function, vaginal pain, pain with intercourse, ovarian cysts, infertility, severe bloating, back pain, vomiting & more. Endometriosis is the leading cause of infertility.

There are five stages of endometriosis, which are measured by the depth of endometrial implants. Oddly, the stage of the disease does not correlate with a women’s pain. For example, one patient might have severe pain with stage 1 and another minimal pain with stage 3.  However, women with late stage (stages 3-5) are more likely to have endometrioma’s or “chocolate ovarian cysts”.

Pain from endometriosis can present itself in many ways, but can be severe and mind-numbing in each form. Adhesion’s may feel sharp, searing and pulling accompanied by labor-like cramping and aching from inflammation. Patients often report feeling unable to get comfortable in any position, and that physical movement increases pain. It is not uncommon for patients with untreated late stage endometriosis to be confined to a wheel chair. New studies have shown that pain from endo is comparable to cancer.

How is endometriosis diagnosed?

The average diagnosis for endometriosis takes 10+ years.  Aside from a lack of awareness and broad set of symptoms, the main reason for delayed diagnosis is that imaging tests (CT, MRI, Ultrasound) cannot confirm or even detect endometriosis. The only way to receive a definitive diagnosis is via biopsy taken from laparoscopic surgery.

How is endometriosis treated? 

Hormones + GnRH

After an initial diagnosis of endometriosis, the majority of patients are put on hormones or estrogen depleting medications named GnRH antagonist (Lupron).  Unfortunately, neither are a very effective treatment for the disease and only mask symptoms for a limited time.  In addition, they bring with them a slew of awful side effects and cause long term damage to the body.

Ablation Surgery

Most regular gynecologists perform ablation surgery. This technique may open up a short-term window of fertility, but is unsuccessful in treating pain and the disease long term. It only removes the surface layer of the disease, leaving cells behind and often fuels endometriosis to grow back even stronger.  The ablation technique leaves women with an 85% chance of the disease returning. Most women have a return in symptoms within 3 months to a year, if they get relief at all.

Excision Surgery

The gold standard treatment for endometriosis is excision surgery. This technique removes deep infiltrating endometriosis at the root of the disease. Excision is performed by an endometriosis excision specialist.  Although more expensive, this treatment is the closest thing to a cure, leaving women with less than a 5% chance of the disease returning, a much better quality of life than other options and fewer surgeries in the future – in many cases, none.

Why early diagnosis + treatment is important

The earlier a woman is diagnosed and given proper treatment, the better chance she has of regaining a pain-free life. If someone is in late stage of the disease with a lot of internal trauma (like myself), successful excision surgery can greatly improve their quality of life but in some cases may not take away their pain entirely. So many years of harm to the tissues from repeated ablation surgeries and tensing of pelvic floor muscles can result in nerve issues and heightened pain signals.

Pelvic Floor Therapy is a widely successful treatment option for continued pain after excision surgery and is recommended by most specialists. Some women who have not tried surgical intervention also find some relief of symptoms with PFT. This is also a great treatment option for those who are struggling with urinary or bowel dysfunction, and especially Interstitial Cystitis – a painful bladder disease commonly diagnosed with endometriosis.

Pressing Issues in Endometriosis Treatment:

  • The gold standard treatment, excision surgery, is performed by an endometriosis excision specialist. There are roughly only 20-30 excision specialist in the US.
  • Excision surgery is not recognized by health insurance as medically necessary. As a result surgeons are not adequately reimbursed for their long, tedious surgeries. Although in-network hospital bills are covered for patients, surgeon fees are not.
  • Time and time again, women share stories of having their pain dismissed by doctors and not further investigated. Women’s pain must be taken seriously.

Pressing Issues in Endometriosis Education: 

  • The lack of awareness surrounding endometriosis and excision surgery is appalling.  Primary doctors, medical students and gynecologists are severely uninformed. The ACOG is not keeping gynecologists properly educated about endo. As a consequence, patients are often mistreated, misinformed and uninformed about all their treatment options.
  • Societal views regarding female pain have led women to believe that debilitating periods are a normal part of life.  In fact, missing work, school, social activities and being in excruciating pain during your cycle is NEVER normal.
  • Outdated information and myths about endometriosis are still floating around.
  • Despite being one of the most common diseases, there is little funding towards endometriosis research, education and finding a cure.

* The information curated on this page was written by me, in my own words out of the knowledge I’ve acquired from my experiences while living with the disease, researching and speaking with doctors.  I have also provided a page of other reliable resources on this site which can, more or less, confirm the information given here.