Ana, another endometriosis sufferer that decided to take matters into her own hands and travelled to Dr Kyriakopoulos for surgery. Ana is one of millions of endometriosis sufferers that are ignored by the medical society. Her surgery with Dr Kyriakopoulos was a success and her message to doctors is to stop gaslighting their patients.
ACE: Endometriosis is a condition that affects women of all ages. How old were you when you had your first symptoms and what were the reactions of your friends and family when you mentioned the symptoms/pain?
I’ve always had some indications that there might be something wrong, ever since my first period at 11 years old, my cycles were always difficult and irregular, but my first serious symptoms and pain started when I was 31.
ACE:Many women go through multiple surgeries, waiting for years to receive a diagnosis, and so on. What is your story with endometriosis?
I started my search for answers when the unbearable pain started, going from gastroenterologists to gynaecologists, when I finally got a hint that it might be endometriosis since I had a smaller chocolate cyst on my right ovary. Since it wasn’t “big enough” surgery in my country was not an option, so I was put on contraceptive pills for 16 months before finally finding Dinos and scheduling my surgery. My surgery happened after almost 3 years of intense symptoms.
ACE: What were your symptoms and how/when did you realise you might have endometriosis?
My periods were always irregular, intense and painful. But the first symptom that affected me most was extreme pain in my lower abdomen, pain during intercourse, persistent UTI’s that would come back every few weeks, very painful periods with extremely intense flow, fatigue… I already had a suspicion I had endometriosis since my aunt had it, but having a chocolate cyst was a pretty clear indicator, accompanied with most of my symptoms.
ACE: As you know, endometriosis is not easily recognised by doctors and most of them recommend hysterectomy or pregnancy as a cure, sometimes from a young age. What’s your story with doctors?
I feel like all our stories are quite similar. Not being heard or believed, and being told it is all in our head, or that a pregnancy would solve our symptoms and “cure” us. When in reality even living a normal life is difficult most of the time, getting pregnant is almost impossible starting with the fact that the pain can be so intense that having sex is often not an option, but then the medical side of getting pregnant with endo which can prove to be quite difficult… It’s just very frustrating being gaslit while going through such a difficult time.
ACE: Endometriosis it’s a whole-body condition affecting a person’s life on all levels. How did endometriosis affect your life, both personal and professional?
It affected my life in many different ways, starting from my ability to work the job I used to work, since standing for a long time was out of the question. It also affected my relationships, both with friends and family who couldn’t always understand what I was going through, and with the love side of things, since I was affected physically in a lot of ways. It affected my future plans too, since I couldn’t imagine the same future I could while I was healthy.
ACE: Living with endometriosis is not easy, the disease can take a toll on the personal life, especially emotionally. How did you feel when you realised you are finally having surgery with a specialist?
After my first conversation with Dinos I finally had hope. I felt like I got a second chance and like I was very lucky. I felt understood, believed, I finally didn’t feel insane, and all the hardship I went through was validated and made more sense.
ACE: You had excision surgery with Dr Kyriakopoulos. How are you now after your surgery and how was your overall experience with our team/centre?
My experience was amazing. I would do it all over again if I had to. I have never trusted a medical professional as much as I did with him. Since the first time we talked. Even though at first it sounded like it was too good to be true. He is someone who believed me right away and had a solution for me, who is kind and patient, just an incredible human being and such a professional. The whole experience was very nice, considering the seriousness of going through a surgery. After waking up from surgery I knew I was better, I had no pain, my head was clear, my face changed, I looked less tired. My recovery has been pretty good, most of my symptoms are a thing of the past now. I had to relearn what my body feels like without endo. Any kind of pain still scares me, but I try to find a difference in the type of pain I feel. I wish I had an opportunity in my country to also get some physiotherapy after surgery, but even without it my quality of life has gotten so much better, I was able to get back to working intensely, I am more active, feeling amazing most of the time.
ACE: If you go back in time, what would you say to a younger you and what’s your advice for anyone who is new to endometriosis?
I think about this often, I don’t know if I would do anything differently, since I didn’t really have a lot of opportunity to learn about it sooner. But my one advice would be to educate yourself. I noticed if I try to talk to people who have been told that they might have endometriosis, I get a bit too intense. I try to push my experience on them, since I know that excision surgery is the only thing that will work in the long run. But I realised that my story can be very scary for someone just hearing about it for the first time, and that I also had a few years to accept it, to see what endo does to your body and to your mind, and I also had time to educate myself and to see what to avoid and where to go next. So now I just say: “do what feels right for you, and if you ever want to talk to my doctor I will put you in touch with him.” It is just very sad that there is so much unknown, that the knowledge is not readily available for everyone, considering 1 in 10 women have endo, it is not talked about enough, and medical professionals are not prepared for it at all in most places.
ACE: What is your message for doctors?
My message to doctors is to stop gaslighting their patients, try to listen more to how they feel and believe their pain. I wish more doctors had the opportunity and the desire to learn more about such a common illness, and that excision will become the golden standard everywhere.
