Endometriosis expert talks about major signs and symptoms of the disease

Endometriosis patients experience a variety of symptoms like pain during their period, ovulation and intercourse, fatigue, anxiety, stomach problems, and an inability to empty their bladder on their own, says Dr. Abhishek Mangeshikar, a Mumbai-based endometriosis excisional specialist at the Indian Centre for Endometriosis. Patients may also have something called an “endo belly” or the noticeable bloating of the abdomen.

Endometriosis is a painful condition wherein tissue resembling the endometrium, or the lining of the womb, starts to grow in other places in the body. It usually occurs in the lower abdomen or pelvis, but it can appear anywhere in the body.

Dr. Mangeshikar spoke to Femoai about the most important signs and symptoms of endometriosis, and why they occur. Edited excerpts:

What are the major symptoms of endometriosis?

Pain

Apart from pain during periods, patients may experience pain in the abdomen. This type of pain may radiate to the lower back, or it can originate from the lower back, from the uterosacral ligaments (fibrous bands that attach the cervix to the sacrum bone). If there is an entrapment of the nerves or an endometriosis on the nerves, it can cause pain as well. If it is on the sciatic nerve (the longest nerve in the body which branches out from the lower spine), it produces a sciatic kind of pain, which feels like an electric bolt shooting down the leg. If the sacral nerve roots (spinal nerves) are affected, it can be a sign of very deep endo. The most important symptom of this is that the patient is unable to empty her bladder by herself or it takes her a long time to do so. These patients have to physically compress their abdomen to be able to empty their bladder; that’s a big, big warning sign because it is possibly the most difficult endometriosis to deal with. It is also very difficult to diagnose unless you know what to look for on the MRI (magnetic resonance imaging).

Pain during intercourse

Patients may also experience pain during intercourse. Usually, it is deep pain during intercourse or deep dyspareunia. This happens when there is a nodule on the back of the cervix or on the back of the vagina, to which the rectum is stuck, or if there is a nodule on the uterosacral ligaments. Usually, while examining a patient when you prod in that area, they almost jump off the table; in these cases, there is a high clinical suspicion that there is a big nodule there, which can be confirmed on imaging via ultrasound or MRI.

Pain during ovulation

Patients may also experience pain during ovulation if there is endometriosis along the ovaries or the ovaries are entrapped. These patients may experience pain with bowel movements. If there is bowel disease, there may be pain while urinating in case of bladder nodules.

Difficulty getting pregnant

The other symptom is subfertility or difficulty getting pregnant if the tube is entrapped in an adhesion. Even deep endo produces a toxic effect towards the ovaries and inhibits fertility.

Bloating and hypersensitivity

There are also what we call vegetative symptoms, which occur due to hyperstimulation of the nervous system. Endometriosis, because it’s inflammatory, produces inflammation on the nervous plexus around the intestine, causing hypersensitivity and bloating. Patients may experience food intolerances, food sensitivities or food allergies. They may also have bloating, constipation, or loose motions around the time of the period. With vegetative symptoms, they would experience chronic fatigue; these patients are always tired and anxious.

Migraines

Patients may also have frequent migraines. I don’t know what the exact relation between that is, but there have been correlations noted across some studies.

Other symptoms

Also, there could be implants on the diaphragm or in the lungs, although these are rarer, but not that rare. In these cases, the patient may experience shoulder pain, they may even present with chest pain every month. Some of them undergo something called catamenial pneumothorax. Catamenial means monthly — around the time of the period. And pneumothorax is when the lung collapses because of the endometriosis. They may usually end up in the emergency room in those situations; it’s very painful and they are unable to breathe properly. Some of the other symptoms are coughing up blood or vomiting blood.

What are the signs of endometriosis that doctors look for?

You can visualise the abdomen if the patient has bloating. My patients have sent me photographs, where they have a big belly, almost like they are five months pregnant, and these are low BMI women. That is what is called the endo belly, which is a similar symptom seen in adenomyosis and in bowel disease.

This happens because of the swelling of the intestines. On physical examination, one can feel nodularity if it is in the uterasecals and if it’s behind the cervix. Sometimes a rectal exam can reveal a nodule, but usually the rectal nodules are a little higher, so one may not necessarily be able to feel them during the exam.

When should a patient see the doctor for endometriosis?

If there is pain that is affecting their quality of life, if it’s causing them to miss schoolwork, if it’s inhibiting their ability to function properly at work, or, they are skipping out or social events because they have too much pain, these are big warning signs to go see a doctor. If you notice bleeding during your stool, bleeding during intercourse or after intercourse, or even deep pain during intercourse, it is a big sign to go see a specialist because that is usually significant for very deep nodular disease rate. Basically, any of the symptoms I mentioned are a sign that you should see a doctor.

If there is pain that is affecting their quality of life, if it’s causing them to miss schoolwork, if it’s inhibiting their ability to function properly at work, or, they are skipping out or social events because they have too much pain, these are big warning signs to go see a doctor.

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