From Canada to Greece, not for holiday, but for endometriosis surgery

Endometriosis is a condition that affects 10% of the population born with a uterus. A condition that can cause severe pain, leaving one bedridden. All over the world endometriosis sufferers are subjected to delays in diagnosis, incomplete surgeries or told that the pain is in their head.

In search for a better life, endometriosis sufferers are spending their time searching online for a doctor that can give a name to their pain, or to confirm that their symptoms are real. Armed with hope and very detailed knowledge of their suffering, some chose to travel outside their country, to get the much needed specialist surgery.

From Canada to Greece for Endometriosis Surgery

We caught up with Krystal from Canada, who travelled in June to have surgery with Dr Konstantinos Kyriakopoulos, after years of suffering.

She started her symptoms at the age of 16, during her maths class.
Countless visits each year to her family doctor and no real solution was offered apart from birth control pills.
She was diagnosed with IBS.
After a decade of pushing to be seen by a gynecologist only to be told to try Orillissa as a method of diagnosis.
She experienced side effects so she pushed to be seen by an endometriosis specialist to be told that her symptoms did not match endometriosis.
When she asked to have a laparoscopy, she was told that only ablation can be done.
She pushed again to have an ultrasound and afterwards the treatment option offered was hysterectomy or nothing.
She travelled to the USA just to have an MRI.
She researched endometriosis specialists around the world and after speaking with some of them, she knew that Dr Kyriakopoulos was the only one she fully trusted and she felt safe seeing.
She had surgery in June and immediately noticed a difference.
Travelling to Greece was the best decision of her life and she can not thank the team enough.

Endometriosis can affect people of all ages, including teenagers

Krystal’s battle with endometriosis started at the age of 16. She remembers very well that moment. It was during her maths class when she suddenly started to experience a shooting rectal pain. She was on her period and the pain was so severe that she could not sit up when the bell rang.

Later on, those symptoms have become a recurrence during her periods. Despite having severe pain, Krystal was too embarrassed to talk to her friends about it. She thought is normal to have pain during menstruation. Eventually she spoke with her mom, and luckily her mother realised that it wasn’t normal.

I initially thought it was a normal part of menstruation

Many endometriosis sufferers believe that menstruation is painful. Some are even told by doctors or members of their family to do so. In Krystal’s case, her mother realised that something was wrong and Krystal went to see her family doctor.

The medical trial begins

For years she went to her GP only to be put on many different forms of birth control that did absolutely nothing for her symptoms. She would visit her GP many times a year, complaining about her pain, and nothing was done about it.

She was diagnosed with IBS

One of the most frequent conditions that endometriosis patients are diagnosed with is IBS. Kyrstal was suffering from chronic constipation, bloating, abdominal distention of a 8 month pregnancy and bowel issues. All of which are endometriosis symptoms. This, of course, led to her doctors diagnosing her with IBS.

She was advised to become pregnant

My family doctor told me it might be endometriosis and the solution to endometriosis is to get pregnant.

A frequent and harmful myth about endometriosis is that pregnancy can cure endometriosis. Patients all over the world are told to become pregnant, as that is the absolute solution for endometriosis. Many do fall for this myth, sadly. Although pregnancy is a great thing for anyone that wishes to become parents, it is not a cure for endometriosis.

Same as millions of other endometriosis sufferers, Krystal had to advocate for herself, and learn to trust her own intuitions rather than what her doctors were telling her. She pushed to be referred to a gynaecologist and 10 years later she was referred to a gynaecologist.

She was offered Orilissa as a diagnosis method

After she saw a gynaecologist, Krystal was diagnosed with adenomyosis and the suspicion of endometriosis was raised, however, she was told that until she tries Orilissa she will not be diagnosed.

He indicated if my symptoms improved then I most likely had endometriosis.

She trusted her doctor, and as such she began to take it. Soon after she started experiencing side effects.

Four months after being on this drug my fingers began to lock up.

This made her research and that is how she found out the truth about hormonal treatment. The drug was dangerous and did not treat the disease. Although her symptoms have improved, she wasn’t ok with the side effects, so she went back to her gynaecologist and asked for an excision, but instead she was offered ablation.

This made her ask to be referred to an endometriosis specialist. A year later she had a zoom call with the endometriosis specialist in Toronto, Ontario, Canada. To her surprise, the said specialist told her that her symptoms do not match endometriosis. However, Krystal knew that something was wrong so she asked to be referred for a mapping ultrasound with their specialist.

It took another 6 months until she had her ultrasound. She was hoping that finally they would see that she has endometriosis. After her scan, the radiologist informed her that she has adenomyosis, and her report was unclear if she had or not endometriosis. Because she was told she has adenomyosis, she was offered tow options: hysterectomy or leave it as it is.

Surgery was too risky as well, according to her doctors and they will only do it if she agrees to have a hysterectomy. She asked for an MRI but she was denied so she travelled to the USA to have one. It was then when she knew that she had endometriosis.

She started to research endometriosis specialists across the world

In search of a better life, she started researching excision specialists across the world. After having a few consultations with some highly recognized surgeons, she knew after speaking with Dr Kyriakopoulos that he was the only one she fully trusted and and she felt safe seeing.

After almost 16 years of being gaslit by medical professionals in Canada I knew he was the one. My journey was so easy with him, he was very organised, educated, compassionate and most importantly he believed me.

How did surgery go?

“Surgery with Dinos was phenomenal. The multidisciplinary team he works with are all angels. The pre-op assessments were quick and thorough. I felt like I mattered for once with my health, which is something I did not feel in Canada. Having a pre-made package with all the gauze, sterile solutions, bandages and medications needed for surgery was so convenient and eased a lot of my stress of being in another country for surgery. The centre and the hospital are all very clean and sterile.

Pre and post op care was top notch and I could not have asked for a better experience. I noticed a difference immediately after surgery, I felt lighter. It was a strange feeling, as I did not realise how much pain I lived in for years.

I was walking 5 km in Athens five days post op. I have now had five menstrual cycles since surgery, I now know what a normal menstruation is. I do not have bloating, my constipation is gone and best of all the pain is gone. I feel really happy and thankful I trusted my health in his hands. This was the best decision of my life and I can not thank the team enough”.

Message from an endometriosis patient

Please LISTEN to your patients

Krystal’s message to doctors is to listen to your patients.If you do not have sufficient experience, refer your patients to someone that can help them.

“ Last but not least, let’s all educate ourselves on up to date treatments of endometriosis and make a change for the many women who suffer with this horrible disease”.

Krystal’s journey with endometriosis pain ends in Greece, after years of suffering. But like her there are millions of endometriosis sufferers that need proper diagnosis and treatment. It is time to change the narrative! Time to have better services for endometriosis patients!