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My experience with other doctors during my endometriosis journey was horrible

After seeing many doctors in her country, and being put on hormonal medication that caused her to bleed non stop and excessively, Josina decided she couldn’t live like that; she knew she needed excision surgery. Armed with information, fighting to convince her family on her choice of travelling for care, and supported by her husband, Josina picked Dr Kyriakopoulos as her endometriosis specialist.

Gaslighted by doctors, and same as many endometriosis sufferers, Josina was told that painful periods are part of being a woman; take a paracetamol and you will be ok. 

She was sent to see a psychologist

Her scans and MRIs were all clean, she was passed from one doctor to another, told to seek mental health therapy. Josina was a ball between various doctors. Her gynaecologist sent her to see an endocrinologist because it must be her thyroid, and her endocrinologist sent her back to her gynaecologist. She felt lost. 

When in Greece, our radiologist saw endometriosis on her MRI

How is endometriosis treated in many parts of the world? What is the “cure” that many doctors offer to their patients? Hormones. 

Josina was put on hormones that caused her to bleed non stop and excessively.

I couldn’t live like that either. And worst of all: Dinos told me that even with these hormones, the endometriosis kept on growing even though the pain symptoms were less. So basically they give you a sense of safety, a feeling of OK. I was on treatment but actually it was just a band aid to cover up some of the symptoms and the disease had free play in my body causing more harm without me even knowing it. So here we lost precious time and more damage was being done in my body.

When she asked to have surgery, she was told it was too dangerous because of the deep infiltrating nodule in the rectum.

Knowing now what an endometriosis specialist is, Josina reckons that the doctors that she saw in Spain have very limited knowledge. Although they were able to see some signs of endometriosis on her scans, compared to the other 7 gyns who said all clear, their standard treatment is to take progesterone pills. 

Before travelling to Greece, Josina made many efforts in seeing doctors in Spain. She travelled from Malaga to Madrid, to get a third opinion. She was recommended to try GnRH agonists/antagonists to put her in a temporary chemical menopause. Lucky she I knew this was a HUGE red flag. 

All this have taken a toll on her mental health

It made me feel soooo lonely and desperate. No doctor or specialist in Spain seemed able to help me. It was a long dark tunnel. I was in a lot of pain and I was in the dark. 

I have a medical trauma 

The result is that I have a medical trauma: everything related to doctor’s visits in general, to hospitals and farmacy’s. my heart starts racing, I don’t want to be there, I want to escape, I want to avoid going to the doctor in general. I am so scared that again, they will not take me seriously, they will not believe me, they will say I am exaggerating, they will not have the knowledge to guide me to a correct treatment, etc. It’s difficult because in theory you should be able to go to a doctor and feel comfortable and have trust in their abilities and their treatment plan for you. But my experiences were the opposite for many years so this is the result: a medical trauma.

She fought for her care 

She joined endometriosis communities and she educated herself on endometriosis right treatment. This helped him to find Dr Kyriakopouloshat.

“Within the first contact and meeting in Athens it was clear to me that I had finally found a real specialist, who has made it his mission to treat endometriosis seriously. I had a checklist from a book about endometriosis that listed all the green flags to look for in a specialised endometriosis surgeon and Dr Dinos ticked all the right boxes. Finally!! So the decision to get me treatment with him was made quickly: excision surgery with dr. Dinos and his team”.

Travelling for care was not easy. She had to convince her family that she is making the right choice for her health. Her private insurance refused to pay for her surgery, but Josina was determined to get her life back. 

Only in Dr Dinos specialist care would I feel safe for my endo surgery because of his experience and knowledge of endo. And because he works with a team. 

it would be a big operation… with risks .. so of course I only wanted it to be performed by the best surgeon with a good team and experience with difficult endo cases.

Do not let others influence you

As a patient, you have to be very strong to not let yourself be influenced by those opinions of family and friends and other doctors. You have to keep your eyes on your goal: to get the best medical care by a specialist team.  And if that involves travelling to Athens for my surgery… so be it. Luckily my husband supported me 100% on this decision. He had seen me suffering and he had seen with horror what the doctors in Spain proposed as “treatments” so we were desperate for a real solution. So we said: Athens here we come! It was really our last and one and only change for me to get the correct treatment.

How is her life now after surgery? 

My life has changed now after surgery: my periods are light, short and not painful most of the time. I have my life back. Knowing that Dinos and his team cut out those endometriosis nodules from my body. What a relief to be able to live without the pain! I am forever grateful for this! I hope I will stay healthy for many years to come! 

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