IS IT POSSIBLE TO DIAGNOSE AND TREAT THE DISEASE CALLED ENDOMETRIOSIS?

 

IS IT POSSIBLE TO DIAGNOSE AND TREAT THE DISEASE CALLED ENDOMETRIOSIS, WHICH AFFECTS A LARGE NUMBER OF WOMEN?

I Was 14 Years Old When I Started Having Very Painful Periods, I Used To Use Hot Packs At School To Get Me Through The Day.  Sometimes It Made A Difference.

But sometimes I lay in bed like a sick person where even the people at the reception failed to give me any suggestion to deal with the pain because I already had my appendix out.

After going through this severe pain for ten years, I have now entered the stage of diagnosis of a disease called 'endometriosis'. But despite much effort and many medical examinations, this disease, its diagnosis and treatment remain elusive.

Endometriosis is a disease associated with menstruation, in which tissue similar to the lining of the uterus is found in many parts of the body, such as the vagina, pubic area, and intestines. In some rare cases, these tissues are also found in the eyes, brain and lungs. The spleen is the only part of the body that does not contain these tissues. Symptoms of this disease include severe abdominal pain, extreme fatigue and heavy menstrual periods.

Endometriosis is one of the few diseases about which research is lacking. Around 176 million people worldwide are suffering from this disease. In many other countries, including the United States, one out of every ten women is suffering from this disease. About $60 million in research funding is required annually for research into this disease.

Endometriosis isn't just about pain.

According to a study conducted in ten countries, each patient suffering from this disease has to spend about nine and a half thousand euros annually for their health care. This disease is also associated with infertility. Due to which the patient may suffer from more diseases.

Katie Vincent, Pain Fellow at the University of Oxford, says: 'We have evidence to show that severe pain affects your central nervous system. The main symptoms of this disease are severe pain in the pubic area without any physical cause.

The disease is believed to have been discovered in the 1860s by the Czech scientist Karl von Roketansky. However, this matter is controversial because there have been records of the discovery of this disease before.

Endometriosis is also associated with a disease called hysteria, which derives its name from the Latin word for uterus. According to a study conducted on pubic pain, many cases that were dismissed as hysteria could be endometriosis.

Misconceptions about this disease in the past have informed modern medicine about this disease.

Compared to other diseases, where it is less researched, it is also less understood. The cause of endometriosis is unknown. There is no cure for it. It often takes up to 10 years to be discovered, and can only be diagnosed with laparoscopy, surgery with a camera.

'I spoke to three women in their twenties and thirties who had recently been diagnosed with endometriosis. All three women were misdiagnosed with the disease while dismissing the symptoms.

Alice Bodenham, 31, says she can't remember a single doctor ever using the word 'endometriosis' in her case or asking the right questions about it.

The real problem is how to reduce the pain when the most important symptom of this disease is pain.

'I experienced this myself when I had to have an internal ultrasound scan which was extremely painful and I told the doctors about it. I received the scan report in the mail saying 'Patient experienced mild discomfort during scan.'

Sensing the extent of pain and understanding a person's condition are not correlated. No method of diagnosis can be devised for this disease, except for a doctor who can correctly understand the description of the patient's symptoms. But in the case of women, many symptoms are dismissed by saying, 'It's all in your head.'

It is surprising that according to a survey conducted by the British government, 40% of 2,600 women with endometriosis had to see a doctor at least ten times before being referred to a specialist.

Bodenham and Crystal Rodrigues, 31, also fainted several times due to severe pain.

Kaitlyn Conyers, 24, who writes a blog called 'My Endometriosis Diary', diagnosed herself with the disease through self-research after her doctor dismissed her as having the disease.

He said: 'Three years ago I had to go to an urgent care centre. I was researching on google about different causes, one of which was endometriosis, I even told the doctor about it but she said no, it's definitely not endometriosis. I told the doctor that I have severe pain during my period, besides pain in the pubic area, but he still said no!'

Sometimes doctors also fail to diagnose this disease in the initial scans. There are many examples of wrong ultrasounds on many forums discussing this disease.

Due to lack of awareness about this disease, diagnosis may also be delayed. "There are still a lot of superstitions about menstruation. The women I spoke to said they are aware of menstrual pain but have no idea how painful it is. Can be severe.'

There are many campaigns around the world to raise awareness about endometriosis, and their efforts have been quite successful.

In 2017, the Australian Government launched the National Action Plan for Endometriosis, aimed at improving treatment and awareness of the disease. Funds of A$5.5 billion were raised under this plan, which aimed to make the disease a part of primary health professional medical education.

The British government's advisory council and the National Institute for Health and Care Services (NICE) have issued guidelines on the disease.

Annie Connolly, a specialist in women's health at the Royal College of GPs, praised Nice's move, saying doctors already have a lot of guidance on this.

World Endometriosis Society Chief Executive Lon Himlisoj says that the number of specialized centers around the world for this disease is also an important problem.

Still according to some doctors impregnating the patient is an effective treatment. This year I was told by a doctor that he diagnosed a patient with endometriosis, but we can't do anything about it until the patient gets pregnant. This is incorrect because it can only lead to symptoms of endometriosis during pregnancy.

A 2016 Danish study found that women who use contraceptives are more likely to develop depression.

Another treatment for this disease is cessation of menstruation, but this cannot be relied upon for a long period of time as it can also damage the bones. Many women who stop menstruation through various drugs and injections do not really know much about it. However, research is being done to find out its possible alternatives.

Professor Kraina Zondervan, a reproductive specialist at the University of Oxford, says that most of the focus in treating endometriosis with drugs is on hormones, but we need to do more because we know it doesn't work for many women. While it has many side effects and women are not happy with this experience for a long time.

The use of painkillers is another option, although they only reduce the pain but do not cure the disease and are also not free of side effects.

Bodenham said she has been on painkillers for three years, which has left her with anemia and high blood pressure. She says that she used to run about five kilometers every week, but now she has to go down the stairs to get water, so she feels like she is participating in a marathon.

Still, Bodenham feels fortunate to use these drugs because she knows that taking high doses of painkillers can lead to drug addiction.

The profile of the disease is rising and so are efforts to educate people about it. While patients wait for the medical system to become more proactive about it, the current symptoms of the disease are still misunderstood and attributed to serious mental and physical health consequences.

Bodenham says: 'After learning that the birth control pills have adversely affected my mental health, my next step is to decide whether to start my treatment with a low dose of Mirena Kyle hormones or to have my treatment through laparoscopy. Let me continue.

'But recovery from a laparoscopy takes several weeks and with a modest job as a freelancer I need to save more money. This is another example of the difficult choices women with pubic pain face on a daily basis.'