Community Voices for Health

By: Dr. Tanvi Maharaja

March is National Endometriosis Awareness Month, a common but often misdiagnosed condition that mostly affects women of child-bearing age. This condition is characterized by endometrial (inner lining of the uterus) or endometrial-like tissue deposits located outside of the uterus, usually in the pelvis, but occasionally elsewhere too. 

Literature suggests that tissue migration as far up as the shoulder, the lungs, and even the brain has been noted. We do not know definitively what causes endometriosis, but we do know that environmental, nutritional, and genetic factors have a key role. Early menarche (start of menstruation at a younger age), short menstrual cycle with longer menstrual flow are some of the known risk factors. About 30% of women in their child-bearing years suffer from endometriosis and exhibit symptoms such as increasingly painful periods, pain with deep penetration (when wearing tampons, with sex, with Ob/Gyn exam), pain with bowel movements, and difficulty getting pregnant. 

Symptoms may initially correspond to their menstrual cycle, but eventually become more constant. Pain during the ovulation phase, back and leg pain during menstrual period, rectal pain/bleeding, blood in urine, infertility, fatigue, nausea/vomiting, pain during/after orgasm could be some of the other symptoms of endometriosis. Non-specific or vague low back pain is one of the other common presentations of endometriosis. These vague symptoms often lend themselves to delayed diagnosis of this not-so-uncommon condition.

Women are often noted to have “endo belly”: they are hunched forwards because of abdominal pain, or laying in bed for a few days every month, almost in a fetal position, clutching on their bellies. 

There are a lot of myths surrounding this condition. Women are often told that it is normal to have pain during periods, that sex can sometimes be painful, and “to get over it.” They are often advised to get pregnant and told that that will solve their problems. And when women feel pressurized to get pregnant, things usually do not end well.

Pelvic pain can often be non-specific and women may have a hard time pointing out where exactly their pain is. We have to remember that though some conditions may be common, it does not mean that they are normal. Women may sometimes feel dismissed, further sending them into a spiral of anxiety, fear, depression, and chronic pain. Delayed diagnosis often means longer treatment, years spent trying to conceive, and years spent living with pain. 

Pelvic conditions sometimes present in clusters. PCOS (polycystic ovarian syndrome), PID (pelvic inflammatory disease), IBS (irritable bowel syndrome), and IC/PBS (interstitial cystitis, now more correctly called painful bladder syndrome), PD (pudendal neuralgia) often co-exist with endometriosis, protracting the course of treatment. Indeed, PD, IC, and endometriosis are aptly called the “Evil Triplets” since they all appear at around the same time in a young woman’s life. 

Treatment of endometriosis has changed over the past decades. Earlier, surgeons used to resort to hysterectomy. Just take out the uterus and things will be fine! But, since endometrial tissue may have already travelled outside by the time this was diagnosed, adhesions formed elsewhere outside the uterus still continue to present a problem. So a woman would end up in a woeful situation where her uterus is gone, she cannot have children anymore if she wanted to, and her pain is no better. Thankfully, those days are behind us. 

Treatment of endometriosis involves medical/hormonal treatment, physical therapy, and surgical management. Medical management involves hormonal treatment to manage estrogen levels. Patients also avail nutritional management and physical therapy (PT) treatment. PT treatment involves the myofascial system, the visceral, lymphatic, respiratory system, and the nervous system. 

Laparoscopic surgery is a less invasive, more successful in removing adhesions, improving general health and fertility, and improving a woman’s psycho-emotional status. The skill of the surgeon is key, as it is said that removing all extra endometrial tissue is harder than removing cancerous tissue! Occasionally a hysterectomy may be done, and it is categorized progressively from sub-total to total to radical to hysterectomy with bilateral salpingo-oophorectomy where the fallopian tubes and ovaries are also removed. 

PT treatment is also key to return to normal function post-surgery. Pelvic floor muscle dysfunction, ergonomic/toileting hygiene, treatment of sexual dysfunction such as painful sex (dyspareunia, vaginismus), sexual ergonomics, breathing mechanics, and manual therapy for the pelvic floor and abdominal myofascia are all part of physical therapy treatment for endometriosis. 

This blog is written with the intention to make all women with endometriosis feel heard, to validate their symptoms and their psychological responses to this condition, and to raise awareness about this condition. If you or anyone you know and love is experiencing these symptoms, know that it is a commonly occurring condition that needs to be looked at. Healthcare professionals are trained to diagnose and treat these conditions. And do not forget to ask your doctor for pelvic physical therapy. Pelvic PT will help you meet your goals to a better quality of life and maximize the potential to return to normal. We are here for you!