Endometriosis: The most Common Disease you haven’t heard of!

On 22nd December 2020, V Citizens Action Network (VCAN) organized a fully digital Social Sanchar session with Dr. Abhishek Mangeshikar, Gynaecological Surgeon, and Endometriosis Specialist, Director, The Indian Centre for Endometriosis (ICE), Consultant: Jaslok, Breach, and ACI Cumballa Hill Hospitals, to raise awareness about Endometriosis.

The session was broadcast live on Facebook and YouTube, and was joined by viewers across the city and the globe.

Smt. Indrani Malkani, Chairman & Managing Trustee of VCAN, started the session by welcoming Dr. Mangeshikar and the viewers, and emphasized the importance of raising awareness about a disease/condition on which there is so much ignorance, though it is so common – Endometriosis.
It affects ALL Girls and Women of ALL AGES and can affect ALL Organs not just the Reproductive ones.
Endometriosis affects 176 million women worldwide, out of which 26 million are in India!
She reiterated that women shouldn’t have to suffer because of ignorance. It is equally important for men to know about the disease in the spirit of raising awareness.
As a community there is an urgent need to speak about Endometriosis and this conversation cannot be DELAYED!! 

Smt. Malkani, then gave a brief introduction about VCAN, mentioning its overarching objective, which is to establish effective linkages between Government and Citizens and that VCAN works in partnership with several Government Authorities, the focus areas of VCAN’s work, the interactive Web Portal and the live interactive talk show titled TogetherVCAN’s Social Sanchars.
She shared that during these uncertain times of COVID 19, many anxious questions about our health, have been raised.
With this in mind VCAN decided to expand their Social Sanchars with a new series called ‘Health and Wellbeing’ featuring leading Doctors and Healthcare Professionals as our Speakers.
However, VCAN’s regular Social Sanchar programmes, will also continue in due time.

Smt. Malkani then conveyed her grateful thanks to the Support Partner for this Social Sanchar The Indian Centre for Endometriosis (ICE), which will remain associated with VCAN to take awareness campaigns forward about this issue, to the community.

She expressed warm thanks to Citizens Association for Child Rights (CACR), VCAN’s Implementing Partner.

Smt. Malkani specially thanked the Student Council and the Students of VCAN’s College Partner Jai Hind College and all the other *Colleges who have associated with VCAN.

Smt. Malkani expressed her appreciative thanks towards VCAN’s website technology partner Teknowlegion and VCAN’s social media consultant Shri. Sumit Lulla, all viewers, colleagues and networking partners and friends in the media.

To see the list of *colleges,  click here

She then invited her fellow trustee Shri. V. Ranganathan, a former Municipal Commissioner of Mumbai, and who has also led the State of Maharashtra as the Chief Secretary, to introduce Guest Speaker Dr. Abhishek Mangeshikar.

To read the brief profile of Dr. Abhishek Mangeshikar click here

Before Dr Mangeshikar began his presentation, Smt. Malkani informed the viewers that since many questions had been received from students and from CACR, answers to the pre-sent questions have been integrated in the doctor’s presentation. Many of the pressing questions were concerned about; what is endometriosis, what causes it, is it hereditary, what are the symptoms, does it affect men etc.

The opening remarks by Dr. Abhishek Mangeshikar and his presentation were detailed and answers to many questions were addressed, please see the Video to get a comprehensive understanding.

Dr. Mangeshikar’s presentation and Q&A starts at 9:47 minutes click here

Some highlights are shared below:

Endometriosis is a very common problem, the most common gynecological diagnosis, and the most misdiagnosed and probably mistreated gynecological disease.

Referring to a comic illustration about menstruation Dr. Mangeshikar talked about the process of diagnosis for adolescents.

When girls get their first period around age of 12, some adolescents get severe cramps and can’t go to school while others are fine. The affected girls are often crippled in pain laying down in bed. There is something wrong with such severe cramps. Often, excessive use of electric blankets and hot water bottles to ease the pain also causes burns in the pelvic region. Due to lack of awareness, parents are often flummoxed by such cramps.

The symptoms can be severe and include blacking out, hyperstimulation of nerves, and even endobelly caused by bloating, making the girl look pregnant. Many doctors and adults tend to dismiss the pain as a part of womanhood and growing up. Unfortunately, as the disease progresses so do the symptoms, including longer periods of pain, sensitization of intestinal system that leads to food allergies, and pain extending from pelvic region to legs and lower back. Over the counter pain meds and birth control pills are often given as misdiagnosis, and patients suffer from serious misinformation.

Endometriosis is tissues similar to the lining of the uterus that can grow anywhere in the body. The tissues can can grow in men in certain cases as well, due to heightened estrogen levels. It is a chronic disease that destroys quality of life. An important reminder is that endometriosis is a ‘leaky roof’ syndrome: women forget about it when they don’t have their periods, but the disease doesn’t go away, instead, it keeps compounding. Endometriosis affects 1 out of 10 women, and on average takes 7.5 years to diagnose. Even though it has similar stats to diabetes, barely anyone knows about it or how widespread it is. The internalized misogyny is apparent, if this disease affected men it would probably have been far more researched and talked about than it is currently.

For the treatment of endometriosis, excision surgery is the most effective method. It needs specialized surgeons to conduct it. There are also many important steps after surgery to heal the injured pelvic floor. Physiotherapy, pain therapy and nutrition, among others, are important in ensuring post-operative outcomes.

There are many theories about what causes endometriosis. The retrograde menstruation theory is not reproducible and hence invalid.  The genetic-epigenetic theory is stronger.

Symptoms of endometriosis include:
–   Random pain in abdomen, back, legs
–   Pain during intercourse
–   Infertility and subfertility
–   Nausea
–   Pain while urinating
–   Frequent urination
–   Painful bowel movement
–   In the case of no physical symptoms, there can still be significant harms to the patient, including silent kidney loss that occurs when the endometriosis traps the ureter.

A study by the BBC that looked at 14,000 patients with endometriosis looked at how the disease and long diagnosis term affected women’s quality of life.
–   84% said there was a decrease in their quality of work
–   24% were temporary disabled because of the disease
–   40% experienced stunted growth
–   1% attempted suicide as a result of it

The Average delay of 7.5 years from start of symptoms till diagnosis has led to many pitfalls for patients, including gaslighting–
–   Failure of support from peer group and family
–   From the medical community misdiagnosing or dismissing the disease as being a woman or a hypochondriac
–   Needing to be on painkillers due to misdiagnosis
–   Adding to the gender pain gap

How medical practitioners should ideally diagnose endometriosis-
–   Listen to the patient carefully, consultations should take 1.5 to 2 hours
–   Imaging needs specialist training as normal ultrasound may come back blank
This is why patients must go to specialists if they are experiencing symptoms.

Treatments-
–   Medical treatment suppresses the female hormone but doesn’t take away the disease, and is hence ineffective in the long run
–   Excision surgery very difficult, however specialist surgery does improve the quality of life
–   Recurrence after surgery- there is less than 3-10% surgery recurrence rates from specialist centers, which are acceptable recurrence rates to promulgate surgery

FAQs
Is hysterectomy a solution?
–   Hysterectomy is not a solution as endometriosis can exist outside the uterus and continue to affect the patient even after the ovaries are removed.

Do I need an IVF?
– No, it is better to remove the disease with excision, which will improve pregnancy rates as well.

Why does medical therapy fail?
– Medical therapy suppresses estrogen, however the disease persists because endometriosis produces its own estrogen, and anyway, endometriosis is a hormone-dependent disease, not just estrogen-dependent.

Why has the medical community failed to diagnose and treat the disease efficiently?
–    There are many wrong definitions and causes of the disease taght in medical school
–    Trained OBGYN’s are still not sufficiently trained to deal with laparoscopy or endometriosis surgery
–    Diagnosis of exclusion encouraged in medical school is the wrong way to deal with such a common disease

What are food sensitivities caused by endometriosis?
–    The disease causes hypersensitivity of gastric nervous system
–    This leads to gluten sensitivity, dairy, eggs, soy
–    Stress hormones in animal meat can also trigger endometriosis

What are the warning signs in teen endometriosis?
–    Chronic absenteeism from school, activities etc. due to cramps and period pain is impacting the quality of life and hence can be seen as sufficient evidence
–    Food sensitivities
–    Depression
–    Anxiety
–    Chronic fatigue

What can we do as a society?
–    Pain is not normal
–    We should not try to only treat the symptom of underlying problem, but to treat the cause of it
–    We should reduce the taboo around menstruation and period pain
–    Create awareness programs within community about the same

The Indian Center for Endometriosis (ICE) adopts a multidisciplinary approach to endometriosis, and a social approach to create awareness
–    It encourages partnerships between primary cares, patients, endometriosis centers, and awareness groups
–    Acts as a knowledge-based resource for patients and physicians to identify centers and resources to diagnose and treat the disease
–    Strives to manage patients and not just symptoms- ensure that incomplete surgical therapy is avoided
–    Its goals are- awareness, education, empower women, network, and research

Click here to view the PDF version of the Presentation** of
Dr. Abhishek Mangeshikar

Q&A Live Session:

After Smt. Malkani thanked Dr Mangeshikar for his extremely thorough presentation, Shri. Ranganathan started off the question session by asking-

Q. What are the factors that trigger epigenetics and what preventive measures can be taken?
–  Predisposing factors are confusing but epigenetics is often caused by hormonal imbalance when puberty kicks in

Q. How is the staging of endometriosis done?
–  It is done surgically when you use a laparoscope

Q. Is endometriosis an autoimmune disease?
–  One of the theories is that it is an autoimmune disease. Gut health and nutrition help, and reducing inflammatory foods is a good post-surgical therapy

Q. Can the disease be detected in annual check-up?
–  Endometriosis be accidentally detected in a fertility setting, however it is usually not detecting during annual check-ups unless by accident. This is because the diagnosis is specialized and cannot be done easily via ultrasound or MRI.

Q. What is the cost of setting up a specialized center?
–  The infrastructure is very expensive. ICE aims to bring down the cost of diagnosis and treatment for women. In Mumbai, ICE has access to hospitals that allow the center to be flexible with budgets, and many anonymous groups donate to make the treatment accessible to underprivileged patients.

Q. How frequently do I need to get checked for recurrence after stage one laparoscopy?
–  It is advisable to follow up yearly with a specialized ultrasound depending on symptoms

Q. Does a pap smear help with endometriosis?
–  No, but should be done yearly by women, start from age of first sexual activity

Q. How many ICE centers are there in Mumbai?
–  There is one center, but it is attached to many hospitals and surgeon vetting programs are helping expand endometriosis knowledge and making it accessible.

Q. Is CA125 an effective marker for endometriosis?
–  CA125 marker not most effective, any inflammation can cause this marker.

Q. Can endometriosis occur after menopause?
–  Yes, it can. The disease it often left behind after natural and surgical menopause (removal of ovaries). Endometriosis produces own hormones, and hormones also persist till age of 60-65.

After the session ended, Smt. Malkani thanked Dr. Mangeshikar for his clear and informative and easy to understand answers.
She appealed to the viewers, to join the TogetherVCAN group on Facebook and directly post questions and Dr Mangeshikar will answer himself. This direct interaction with Dr. Abhishek Mangeshikar is an important step to keep the dialogue open for community awareness.

Smt. Malkani then concluded the session, affirming that there was much work ahead and that VCAN would make sure to take the awareness campaign forward in association with The Indian Center for Endometriosis.
She also made an important appeal for voluntary financial contributions that will be used to fulfill the objects of the trust, and primarily for health and well-being initiatives. She also requested viewers to Subscribe and Like TogetherVCAN’s YouTube channel.

An online memento of appreciation was presented to Dr Mangeshikar on behalf of VCAN. Smt. Malkani then thanked VCAN’s trustees and the viewers for joining the session and ended the digital Social Sanchar.

To view the video of the session, click here

To view the PPT** of Dr. Abhishek Mangeshikar, click here

**Please be advised, the information in the presentation was prepared by Dr. Abhishek Mangeshikar, Gynaecological Surgeon, and Endometriosis Specialist
Director, The Indian Centre for Endometriosis (ICE)
Consultant: Jaslok, Breach, and ACI Cumballa Hill Hospitals, Mumbai India, and was presented at the TogetherVCAN’s Social Sanchar held on 22nd December 2020.
All Rights are reserved with the Author and due acknowledgement is to be given to the Author should this presentation in part or in full be used by anyone anywhere. The contents of the slideshow presentation are by the Author and not by VCAN.
The presentation file is lengthy, therefore please wait for it to be fully downloaded before clicking on individual slides. It is advisable to use Google Chrome to download the presentation.