Endometriosis is when tissue that is similar to the lining of the uterus, grows outside of the uterus, creating lesions that can cause extreme pain and/or infertility. This lining layer that grows inside the uterus is called the endometrium. This is the layer that builds and sheds each month with menstruation and also where a pregnancy will attach and grow.
These endometrial like lesions are most commonly found in the abdomen or pelvis, on structures like the bowel, bladder and ovaries, but they can also be found in other places such as the lungs, nasal cavity and lower limbs! These lesions can grow and become painful and inflamed, contributing to scar tissue and adhesions (1, 2).
Endometriosis has a few key characteristics. One of them is experiencing significant amounts of pain that can, but doesn’t always correlate with your period. People with "endo" may have any of the following:
- Pain on or around ovulation (Mittelschmerz)
- Pan on or around the time of your period (dysmenorrhea)
- Pain during or after sex (dyspareunia)
- Pain with bowel movements (dyschezia)
- Pain when you urinate (dysuria)
- Pain in your pelvic region, lower back, and legs
- Having trouble holding on when you have a full bladder or having to go frequently
- Heavy or irregular bleeding
- Digestion issues
- Bleeding between periods
The cause of endometriosis is believed to be multifactorial and it’s likely that hormonal factors, inflammatory factors, genetic factors, and immunologic factors all play their own role in this condition.
Getting an accurate diagnosis of endometriosis takes on average 6.5 years in Australia and can be a frustrating process for many. The gold standard and only way to accurately diagnose endometriosis is by having a laparoscopy and biopsy taken by a skilled laparoscopic surgeon. This is keyhole surgery performed under a general anaesthetic and allows the surgeon to see inside your pelvic cavity. It is not uncommon for a doctor to suggest a “clinic diagnosis” of endometriosis, based on your symptoms, clinical presentation and exclusion of other causes, without having done a laparoscopy. However remember that the only way to truly diagnose this condition is via laparoscopy. Surgeons will often also perform an excision during a diagnostic laparoscopy of any endometriosis found, which can be an effective treatment technique for many.
Not all endometriosis is the same and every case is unique in its presentation. It’s also important to remember that your level of pain and symptoms might not correlate with your stage. It’s not uncommon for individuals with stage 1 endo to have debilitating symptoms, while some with stage 3 may have more mild symptoms.
When a laparoscopic surgery is performed, endometriosis can be classified into one of four categories: minimal (stage 1), mild (stage 2), moderate (stage 3), severe (stage 4). The most used and best-known system was developed by the American Society for Reproductive Medicine (ASRM – formerly ASF). Symptoms and pain may not relate to the stage you have, so that’s also important to know.
How it appears
Stage 1 (1-5 points)
Few superficial lesions
Stage 2 (6-15 points)
More and deeper lesions
Stage 3 (16-40 points)
Many deep lesions
Small cysts on one or both ovaries
Presence of adhesions
Stage 4 (>40 points)
Many deep implants
Large cysts on one or both ovaries
Many dense lesions
So what are my treatment options? Read about how endometriosis may be treated here
These resources may be helpful to you if you currently suffer with endometriosis:
- How can dilators help with painful sex?
- Painful sex - what causes it?
- Pain in the bladder: why it hurts to urinate
- What is Pudendal Neuralgia?
- What and where is your pelvic floor?
- Pelvic Pain Mobility
- Parasar P, Ozcan P, Terry KL. Endometriosis: epidemiology, diagnosis and clinical management. Current obstetrics and gynecology reports. 2017;6(1):34-41.
- Nisolle M, Donnez J. Peritoneal endometriosis, ovarian endometriosis, and adenomyotic nodules of the rectovaginal septum are three different entities. Fertility and sterility. 1997;68(4):585-96.
- Meresman GF, Augé L, Barañao RI, Lombardi E, Tesone M, Sueldo C. Oral contraceptives suppress cell proliferation and enhance apoptosis of eutopic endometrial tissue from patients with endometriosis. Fertility and sterility. 2002;77(6):1141-7.
- Vercellini P, Frontino G, De Giorgi O, Aimi G, Zaina B, Crosignani PG. Comparison of a levonorgestrel-releasing intrauterine device versus expectant management after conservative surgery for symptomatic endometriosis: a pilot study. Fertility and sterility. 2003;80(2):305-9.