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ENDOMETRIOSIS: The Pain is Real, Endo is Real

Endometriosis

Statistics on the World Endometriosis Society’s website reveals that Endometriosis is a disease that affects over 176 million women worldwide. It further states that 1 in every 10 women is affected by the disease. 

In The Gambia, while the statistics of the disease is unknown, that does not mean women in The Gambia are not affected by the disease.

Diagram explaining Endometroisis

According to the National Health Service (UK) website, endometriosis is a condition in which tissue similar to the lining of the womb start to grow in other parts of the body like the ovaries and fallopian tubes. The endometrial tissue may grow in the vagina, cervix, bowel or bladder, and in rare cases, it may spread to other parts of the body, such as the lungs. 

Dr Hassan Azadeh

In a conversation with Dr. Hassan Azadeh, a gynecologist, he disclosed that the causes of endometriosis are unknown, but research has found several theories in relation to the causes. “One theory is that during menstruation, blood with endometrial cells flows back into the fallopian tubes, the cells are rooted there and grow a new lining.”

It is also possible that problems with the immune system contribute to the development of endometriosis, when the immune system does not properly detect and destroy endometrial tissue outside of the uterus. 

Another theory is that it can be genetic in that Endometriosis sometimes runs in families and it’s theorized that a person’s genetics can contribute to the development of the condition.

When asked about the possible symptoms of the disease Dr. Azadeh said that “the most common symptoms of endometriosis include cramping during menstruation, pain during or after sex, fatigue, painful urination, bowel movement, and bleeding between periods. He also said that some women do not experience all these symptoms, but only find out when they are unable to get pregnant.”

Endometriosis symptoms

There is a significant delay from when a woman first experiences symptoms to when she is diagnosed and treated due to the “normalization” of these symptoms by some women and health providers. 

The disease has no cure right now, but there are pain killers to help reduce the pain, birth control pills for people who are not planning to get pregnant and surgery.

Fatou Jome

The Chronicle engaged Fatou Jome, a woman battling with endometriosis. Jome is also the founder of the Let’s Fight Endo campaign in the Gambia. 

The Chronicle:  What were the symptoms you experienced before being diagnosed with endometriosis?

Fatou Jome:  I was having excessive cramps before and after my period and severe pelvic pain. At that time, I thought it was normal, but the pain kept getting worse. Sometimes the pain was brief, but at other times, it could last for three days or more. The pain later progressed to my back and my period got heavier. I hid it from my family as I didn’t want it to seem like I was belaboring an issue every girl goes through in life. The pain continued to get worse so I had no choice but to open up to them, but even then, it was still considered regular period pain.

How endometriosis is treated

The Chronicle: How long did it take you to be diagnosed with endometriosis? 

Fatou Jome: I was in and out of the hospital emergency rooms and urgent care for many years. At some point, my doctor got frustrated at me as he couldn’t figure out what the condition was. Even he thought it was a painful menstruation. At the height of his frustration, he concluded it was constipation. I kept going back to him until he referred me to a specialist. It took eight years before they confirmed I was suffering from the disease.

The Chronicle: And how was the experience like? What treatments have you tried or currently trying? What helped and what didn’t help?  

Fatou Jome: The experience is horrible, painful and leaves you with unanswered questions. When I was diagnosed, I was never told what to do by my doctors or my gynecologist. All they said to me was, endometriosis is common in women. I wasn’t given any medications or any therapy session on how to live a life with the disease. I was just told to google the disease and was handed a printout of what the disease is about. 

I knew there would be more to it, so I combed through the internet researching the disease. After I discovered that there was no cure for the disease and how it can alter a woman’s life and future, I almost went into depression. Managing the disease could be very challenging as it also affects your diet. Over the years I have had to eliminate dairy, red meat, flour, gluten, and processed foods. This has improved my health tremendously. Exercise is one of the best treatments for endometriosis and eating healthy, multivitamins, flax seeds and evening primrose, all of these helps manage the pain. I used to take pain medications, but not anymore due to the fact that I don’t want to be addicted to the medications. 

The Chronicle: Are there any effects that the disease has on you as a person and the people around you? 

Fatou Jome: Yes, and no. During my school years, missing three or four days of class was normal, but all of my professors knew my conditions and were understanding. One of my professors even shared her story with me, because she lived with the same condition. Another effect the disease had on me was my difficulty in getting pregnant. As we know, not all men marry for better or worse, only for the better. 

This was my experience in marriage, but God knows what is best for all his creations. So, I am not too worried about it. Disease or not, a child will come when the time is right. My family is always there for me. The conditions are very painful, stressful and depressing, but God and my supportive family are always there for me. 

The Chronicle: What will you say to women experiencing endometriosis symptoms and women already under treatment? 

Fatou Jome:  My advice to women, especially mothers, pay attention to your young daughter’s period pains and talk to your doctor; find a good doctor that will take your health seriously and don’t be scared to tell your doctor it might be more than a menstruation cramp. Also, change your diet once you suspect what it is or after diagnosis. Stay away from processed foods, red meat, dairy, and flour, plus exercise as much as you can and listen to your body and see what works and what doesn’t. Don’t feel like you can’t speak up. Share your story, sharing stories can help other women because the disease is not your fault.  

The Chronicle: Why did you start the “Let’s Fight Endo” campaign in The Gambia?  

Fatou Jome: The campaign is to educate the general public about the disease and support women who are dealing with the condition. I want to share my story to inspire other women who are suffering in silence, to let them know that they are not alone. Also, to help with treatment options and support groups to share ideas.

Endo Campaign photoshoot

The Chronicle: So far with the “Let’s Fight Endo” campaign, were you able to get statistics of how many women are facing the disease in the Gambia?

Fatou Jome: In The Gambia, I only know of three women who are suffering from the disease and that’s because they reached out to me. I know one that I talk to all the time and she has stage 4 endo. It has affected her personal life and her marriage. The way our society is, most women are suffering in silence because of the way society views us and always put the blame on the women. This is why most of the women are scared to come out and talk about it. 

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