What is endometriosis and why is it often misdiagnosed?

The most common symptom of endometriosis is pain. As many as 90% of women with endometriosis experience pain, either during their period, before it, during ovulation, or throughout the month, says Dr. Abhishek Mangeshikar, a Mumbai-based endometriosis excisional specialist with the Indian Centre for Endometriosis. He says the condition is also likely to be misdiagnosed or go undiagnosed as most doctors are not trained to read it on imaging or ultrasound.

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.

Some of the common symptoms of endometriosis are pelvic pain, painful periods, constipation and bloating, pain during or after sex, pain during peeing, or difficulty getting pregnant.

We spoke to Dr. Mangeshikar about what endometriosis is, what is the kind of pain women experience from it, why is it often misdiagnosed, and the common symptoms. Edited excerpts:

• What is endometriosis?
• What exactly happens when you have endometriosis?
• When you talk about the pain in endometriosis, could you explain what kind of pain it is?
• We have also read and heard that it often goes undiagnosed or is misdiagnosed. Why does that happen?

What is endometriosis?

Endometriosis is a condition or a disease, wherein tissue that resembles the endometrium, the lining of the uterus, starts to grow in other parts of the body. It undergoes repeated injury and repair, which causes inflammation around it. 

There’s a misbelief, which is even prevalent in the OB-GYN circles, that it is the endometrium that is implanted (outside the uterus), which is not correct. And it also doesn’t bleed every month like a period. The inflammation and the swelling on the cellular level is what causes the capillaries around it to rupture, which may cause bleeding. That injury forms scar tissue. Imagine somebody getting a cut and being healed every couple of weeks. This forms deeper and deeper scar tissue, which causes pain and the sequelae (an aftereffect of a disease) that accompany endometriosis.

What exactly happens when you have endometriosis?

To understand that, we should talk about the symptoms. A few women may be asymptomatic as well; they have absolutely no symptoms and may be diagnosed accidentally.

The most common symptom, seen in 90% of women with endometriosis, is pain. It could be pain during the period, before the period, during ovulation, or pain throughout the month, they may even be in constant pain. What we need to understand here is that pain is not indicative of the stage of the disease or the severity of the disease. For example, someone with early stage disease may have severe, crippling pain, whereas someone with very severe or advanced stage of disease may have minimal or no pain.

Pain is not indicative of the stage of the disease or the severity of the disease. For example, someone with early stage disease may have severe, crippling pain, while someone with very severe or advanced stage of disease may have minimal or no pain.

The pain can also be related to intercourse. There could be pain on penetration. That is indicative of the involvement of the back of the uterus, the vagina, and possibly the rectum. If there is pain on insertion or throughout the active intercourse, that may be suggestive of nerve infiltration along the uterosacral ligament (these support the uterus and hold it in place). If there is bowel involvement, there will be pain related to bowel movements. There may be constipation, there may be loose motions, especially during the onset of the period because the estrogen hormone causes the endometriosis to flare. The pain may be at its peak during the estrogen flare up. 

But it’s not only estrogen sensitive, it is hormonally sensitive. This is relevant for when you talk about medical management or the hormonal suppression that is given for endometriosis.

The other symptom we should talk about is pain while passing urine. This is a tricky one because it doesn’t necessarily mean (you have endometriosis). Yes, an endometriosis nodule in the bladder will cause pain but if there is pain while urinating or inability to empty the urinary bladder, it is a much more severe symptom of a lesion on the nerve roots which supply the bladder. These nerves also supply the leg, the vagina and the rectum. That is a very, very difficult type of endometriosis to deal with; in my opinion, probably the most difficult type of endometriosis to deal with.

There may also be bleeding rectally, if there is a lesion that involves the rectum. There may be bleeding while passing urine if there is a nodule in the bladder or in the vagina. If there is bleeding after intercourse, it is a telltale sign. Some women also have vegetative symptoms, which are often overlooked. These patients have chronic fatigue, they’re very anxious, they’re tired all the time, they have nausea, vomiting, especially during the period, because of the hormonal surges.

A few patients also present with sub-fertility or infertility; it is usually due to a distortion of the anatomy that the disease causes, by causing adhesions and upsetting the relationship between the tube and the ovary. 

When you talk about the pain in endometriosis, could you explain what kind of pain it is?

It is important to distinguish it from normal cramps. The pain is severe. If it’s severe enough to cause absenteeism from school, or a social event, or you need to lay in bed and watch Netflix with a hot water bottle and a blanket, that is something you should be concerned about. I spend a lot of time in my consults talking about the nature of the pain, the relieving factors and exacerbating factors. First, the most common thing that patients describe is that it’s in the lower abdomen. They can’t point to one particular spot, they say it’s like a band in the lower abdomen. They will make a twisting, kind of knife-like stabbing gesture with their hand, and say that’s the kind of pain they are feeling. It is usually described as a sharp, stabby, twisty kind of pain.

Also, if there is nerve involvement, there may be sciatica (pain that radiates along the path of the sciatic nerve) kind of symptoms. That is pain which feels like an electric bolt radiating from the lower back down to the leg.

Bloating is a very characteristic symptom. Patients often say they get an endo belly, they look and feel very bloated or they can’t wear jeans during that time. That is a big telltale for possibly intestinal disease. The pain may be relieved by compression or pressure but usually patients have already tried all sorts of painkillers and maybe hormonal medication to no effect. It  is a progressive pain. Sometimes if there is an involvement of one particular side, they may feel variation more towards that side.

We have also read and heard that it often goes undiagnosed or misdiagnosed. Why does that happen?

I think it comes down to medical training; it’s difficult to see on imaging. Not everyone is trained to do an endometriosis-targeted ultrasound. Most people have heard of a chocolate cyst or the ovarian cyst which anybody can pick up on an ultrasound. Almost all endometriosis cysts are accompanied by deep endometriosis.

If you don’t have the ability to read the imaging yourself, to read the ultrasound yourself, or to read the MRI by yourself or by someone who is skilled at it with regard to endometriosis, you are probably as a doctor going to just say that the patient has a cyst, is going to do a cystectomy and be done with it. That is going to lead to incomplete treatment, which is why women believe that endometriosis has this high rate of recurrence, and they need repeated surgeries every year or every couple of years. 

The ability to identify deep lesions is something that very few medical centers and a very few specialists are able to do. Very few can pick up deep endometriosis and identify if there is a nodule on the bowel or on the bladder. There are, in fact, a lot of MRI reports with very obvious disease that have ‘normal’ written under them.

At our centre, we do own MRIs. I see patients from all over the country and some parts of the world, I request them to send their MRI plates to me so that I can diagnose it myself.

There is a big gap in diagnosis, because the first line of treatment is that you give painkillers, which is what is taught in med schools. I think gynaecology would benefit a lot by just assuming that every patient who has any pain, who walks into your clinic, will have endometriosis. If you work with that assumption and work backwards from there. I think we’ll have a lot more diagnosis than the other way around.

What we’re taught in gynaecology is to treat everything else except endometriosis. In India, you see doctors giving treatment for pelvic inflammatory disease and I have never seen pelvic inflammatory disease in my life. But endometriosis is the most common gynaecological disorder yet we will not treat it until they actually have evidence of a cyst of some kind.

Secondly, experts believe that for endometriosis the first surgery should be done at a specialised centre and it should be the only surgery a woman undergoes because you don’t want to have repeated surgeries and deal with scar tissue, which has its own host of problems. But that kind of got misconstrued and misinterpreted as — we should delay surgery, delay her treatment until the time that she is ready to get pregnant. This is a big travesty and a tremendous leap of faith in the wrong direction, in my opinion. We have so many fertility specialists throwing their hat in this ring of endometriosis that they will only do enough surgery to optimise pregnancy outcomes and not really treat the disease to deal with the pain and the fertility.

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