Season 1 – Episode 5: Endo Symptoms Diagnosis and Misdiagnosis

Endo Symptoms Diagnosis and Misdiagnosis – Transcript

Arti Shah: Hello, lovelies. My name is Arti Shah, and welcome to another episode of A Ray of Sunshine, a journey of an endo warrior and everything in between. Welcome home.

In today’s episode, we discuss endometriosis symptoms, diagnosis, and misdiagnosis. Endometriosis is a crippling condition that affects one in 10 women impacting our relationships work and study, our physical health and mental wellbeing. Not only is it a debilitating disease, but is progressive too, meaning the symptoms can worsen with time.

The symptoms of endometriosis vary from patient to patient. Some women have many symptoms and severe pain where others have no symptoms at all. The types of symptoms and the severity of the symptoms are likely to be related to the location of the stray endometriosis tissue. Doctors do not always list the following symptoms as medically recognized symptoms, and although pain is a key symptom of this condition, it’s not a good indicator of the extent of the condition.

You may have mild endometriosis with severe pain, or you could have extensive endometriosis and little to no pain at all. It’s very important to speak to your healthcare provider if you are experiencing painful periods or any of the following symptoms: irregular or painful periods back or leg pain between or during your periods, painful bowel movements, pain with sex, constipation, excessive bleeding, pain during urination, nerve pain, digestive problems including IBS, infertility, chronic fatigue, depression or anxiety, dizziness and shortness of breath, brain fog, food intolerance, headaches or migraines, insomnia and constant nauseousness.

The symptoms I experienced with endometriosis worsened over time due to the progression of the illness. Initially, I had very painful periods, and because I was battling depression at a very early age, I couldn’t differentiate the pain that was actually culminated from endometriosis. I experienced pain in my lower back, nauseousness, insomnia, migraines, and rashes from a very early age after starting my menstrual cycle. As the years went by and as the illness started progressing onto other organs of my body, I started to experience new symptoms and new levels of pain. The pain was not only crippling, but suffocating too.

Constipation became chronic due to the interstinal endometriosis, which also led to undergoing two hemorrhoid surgeries. Because of this, I had to be very careful of not only being severely constipated, but diarrhea would lead to complications too. Now, I have learned to balance this. The progression of endometriosis onto my nerves led to neuropathy causing a whole new ball game of symptoms. The burning sensation and the painful swellings in the hands, legs, and feet were a very challenging journey that has taken a very long time to manage. This also exacerbated the migraines, the dizziness, the brain fog, the chronic fatigue and anxiety.

Depression reduced over time, as I managed to learn the tools needed to deal with that aspect of my life. I was lucky to have found a counselor who was just simply amazing, and to date I practice her teachings and apply the tools for better management of any challenges thrown my way. Doctors do not always list these symptoms as medically recognized symptoms because they vary.

Here are some of the symptoms some endometriosis experts discuss. 

Dr. Vimee Bindra: Endometriosis presents differently in different patients. Most common symptoms are pain and infertility. It may be period pain, before periods, during periods or after periods, or it may be a chronic pelvic pain. Also, symptoms of endometriosis depends on its location and adjacent organ involvement.

Sometimes there is referred pain also. The organ of involvement is different and the pain happens somewhere else. Most commonly, patients present to us with dysmenorrhea or the pain during periods, and this dysmenorrhea is something which interferes with their routine activities. Some women may have painful bowel movements, loose motion, or constipation. So different presentations can be there. Urinary symptoms can be there. Painful urination or dysuria or passage of blood in urine. There may be neurological symptoms as well when the nerve involvement is there in the pelvis. Most of these women are absolutely asymptomatic and they present to us with infertility when they’re trying to conceive.

Apart from these major symptoms, women do present with fatigue, depression, mood swings, body aches, and generalized weakness as well. 

Dr. Charles Muteshi: Endometriosis may present just like other conditions, but uh, specifically girls would, uh, experience period pains. There might be pain outside of their periods. There could be pain that come when they have periods, but associated with other activities. For example, bowel movements, emptying the bladder, those who are intimate may experience pain during intercourse. There might be vague symptoms. For example, blotting, fatigue, which may not be very much linked to endometriosis, but we do know that, uh, they’re associated.

Some ladies may experience a delay in fertility or conception, and we know there is an indirect link with endometriosis. So all this, when they come to the doctor, one needs to have suspicion of endometriosis. 

Dr. Vimee Bindra: For diagnosis of endometriosis, the first and foremost important is believing the patient, listening to them, half of the problems, what the patient tells us, from that only we can suspect that she might have endometriosis.

Then comes the clinical examination. If they have nodules or they have ovarian cysts, rectal, nodule recto-vaginal nodules, vaginal nodules, all can be detected on clinical examination itself. Listening to the patient, taking proper history, clinical examination, makes half of the diagnosis, then imaging adds to it. So if we do a good imaging for endometriosis, we can pick up most of the lesions.

But, negative imaging does not rule out endometriosis. So that is a very important point. Negative imaging, if somebody has no evidence of endometriosis on ultrasound or even on MRI still they may have endometriosis. 

Diagnosis of endometriosis may depend on, um, the combination of those symptoms together with, uh, physical signs that we may pick up.

For example, if, we are able to do an internal examination that’s a vaginal exam and look at the cervix or the back of the vagina, we may find there are deposits of, uh, cells that are very typical of endometriosis. You may find that you can feel either what we call nodules at the back of the womb or just in front of the rectum of the bow, or there might be a swelling or a cyst on the ovaries that can be picked up.

To possibly get closer to that diagnosis, if one does an ultrasound scan, which you may do in clinic as a gynecologist or have a radiologist do that for you, there are certain specific signs we look for, which will tell you there’s endometriosis, beginning from obvious cysts of the ovary. There might be a nodule.

We can pick what we call scarring or organs stuck together. And more definitely, endometriosis is diagnosed by doing an operation called laparoscopy. It’s basically passing a telescope down the belly button and looking the pelvis to see the lesions. You may or may not be able to take them to the lab, but it’s ideal that these lesions are taken for laboratory analysis.

Not everybody will go through all the sequence to have a diagnosis of endometriosis. There are times when we have to manage symptoms, with the best probable diagnosis being endometriosis. But, uh, what this does is that you may not know whether you have endometriosis and you may require definitive treatment.

Presumptive treatment does not necessarily mean that, uh, the disease gets worse. What happens is that if not treatment is given, then that’s when the disease gets worse. 

Dr. Charles Muteshi: If you look at the, uh, data or, uh, the studies a decade back, everything was laparoscopy and a histological diagnosis. Now with advanced technology, with advanced ultrasound machines and MRI and with dedicated endometriosis protocols, if we follow, most of these endometriotic lesions can be picked up and their surgery can be well planned in advance.

Otherwise, if you ask me, uh, what is B diagnosis? It is laparoscopy and a tissue diagnosis. So we send that tissue for pathology and endometriosis is diagnosed. 

I think there are different facets to that, and this, it’s not very straightforward, uh, kind of situation. One delay is, um, recognized across the world and uh, most of it is probably because endometriosis presents in young girls.

It’s a reproductive, uh, health problem. The commonest reason why, uh, you may have pain, uh, could be endometriosis, but there might be other things, for example, pelvic infections. There could be irritable bowel syndrome. And uh, depending on where your GP directs you or the specialty of the, uh, doctor saying you, they kind of might think in that direction. 

If symptoms don’t seem to improve after following a certain line of thought, then one has to change. Rather than, you know, you have chronic PID every time you’re treated for chronic PID, cause you wouldn’t really. Some girls who have never been sexually active have been treated for chronic PID. Secondly, the presentation of endometriosis, as I said in the symptoms, also mimics other conditions.

So that can cause confusion. So you need that acquity, you need to think about it. Whereas you may want to start off by saying, I think you could have the following, eliminate it. And if it doesn’t fit that pattern, then move on to think about something else. And there are times when a laparoscopy is done and uh, you find, uh, maybe endometriosis is not very obvious.

And this could be either technical issues with equipment used or just because a doctor may not have experience. And uh, this varies right from very minimal disease, where you have to be very careful to actually pick those very subtle signs, which could indicate that there could actually be more deep, uh, endometriosis.

Or it could be from what we call a frozen pelvis. And, uh, you can just see anything and you say, Well, it’s just frozen. Is it because of previous scaring from infection? And you miss the, uh, you know, deep lesions. So this requires, therefore that, uh, doctors work collaboratively. If you aren’t sure of what you’ve seen or if you see something that doesn’t fit the picture, then it’s useful to, you know, speak or consult with colleagues who might have that experience.

Dr. Vimee Bindra: If we look at this disease, there is no definitive blood test or a biomarker with which you can diagnose. Only diagnostic where is laparoscopy and pathology. Disease presents differently. There is a wide spectrum of symptoms and presentations. It is misdiagnosed with other diseases such as IBS, PID, fibroids, and many other gynecological diseases as well.

Imaging cannot pick up in all cases, the superficial peritoneal endometriosis may be missed on imaging. So these are the factors where the disease is also responsible for its misdiagnosis and delayed diagnosis. Now, if we come to patient factors with a lot of movement, awareness is increasing, but still there is a lack of awareness.

Patients don’t want to talk about periods. They are told that painful periods are normal. They are told that, uh, we had it, my mother had it. Then you also have to carry on with it. They feel, uh, embarrassed talking about periods. So these are the patient factors. Doctors are also responsible. If we talk about general gynecologist and general physicians, they are not much aware about endometriosis.

They normalize the symptoms. Many of the doctors we have seen, they tell the patients it’ll go away with time. You have to carry on like this, or you get married, have a baby and your symptoms will subside. Also, endometriosis is still not a subspecialty in medical school. That is one of the biggest drawback where, uh, we are lacking in the proper treatment of endometriosis for patients.

If we look at the organizational factors, the guidelines which are issued by the major organizations are not well defined. What should be the treatment for the endometriomas, when to do surgery, when not to do surgery, have not been defined properly, and medical treatment is given due importance even in the guidelines.

These are, uh, factors altogether, which, uh, contribute to its delayed diagnosis. My message to everyone is educate, educate and educate. Make people aware. Tell them the right things and be your own advocate.

Arti Shah: Thank you doctors for the insights. Keeping a journal of your pain and your symptoms helps when seeing the doctor. You must listen to your body and investigate your lifestyle. Even though endometriosis is still relatively misunderstood, very under researched in the medical world, and there is no known current cure, there are a range of treatments available depending on the severity of the endometriosis, and treatments are targeted to each individual case because there is no one size fits all when it comes to endometriosis, its symptoms, its treatment plans, and its management. There is no magical, remedy, supplement, treatment, or diet capable of healing all of your endometriosis symptoms at once. And treating endometriosis with drugs and hormones doesn’t have to be your only. Here are some questions you can answer to guide you in case you may think you have endometriosis.

Do you often experience pelvic or lower back pain that limits your day-to-day activities or requires medication before or during your menstrual cycle? Do you often have painful bowel movements before or during your period? Do you have excessive bleeding during menstruation? Do you often experience pain with sex?

Do you bleed in between periods? Are you experiencing infertility? Do you have leg pain, sciatica, or shortness of breath? Do you have rectal bleeding or blood in your urine? Do you suffer from extreme chronic fatigue or tiredness that is not explainable? If you have answered yes to most of these questions, then it’s time to seek medical expertise.