One year post excision-Ireland to Romania
Our job is done when you don’t need us anymore and when you can say with all confidence that you feel healthy and ready to go on with your life. We are very grateful for the feedback you give us as it helps us evaluate our work. We continue to publish stories and impressions regarding the lives of patients one year after the surgery. One of our patients was kind enough to answer a few questions. She told us about her experience before, during and after the surgery and also gave some good advice and pointers for all the people traveling abroad for surgery. Thank you Irene for putting your faith in us and for sharing your thoughts and conclusions.
One year after your surgery. How are you feeling compared to the time before the surgery and how was your recovery?
I: I have been feeling great since my surgery. Before my surgery, I struggled to go to work every day due to pain and fatigue. My pain traveled into my legs from my pelvis and sometimes my legs would stop working altogether. I would wake up every hour of the night to go to the toilet as I would be in excruciating pain. Dr Mitroi found endometriosis on my bladder and I could notice instantly after the surgery that it had been removed. My first night in the Airbnb after my surgery, I slept through the whole night for the first time in years. Recovery was slow, but I was back in work 4 weeks after my surgery
You traveled from your country to another country to have surgery with Dr Mitroi. How was your overall journey of traveling abroad?
I: It was tough. The trip to Bucharest was easy enough, but traveling back to Ireland was hard. Luckily, I had a friend with me on my journey to Bucharest and my little brother traveled with me back to Ireland. It’s very important to have someone with you, to help look after you and to help you through the airport. I had wheelchair assistance on my way back which helped tremendously
How long after the first symptoms appeared were you diagnosed with endometriosis?
I: I had my first symptoms of endometriosis at a very early age. I had pain before my period arrived, so I have lived in pain since I was 10 years old. I only got diagnosed with endometriosis at an age of 34. It took 24 years for me to get a diagnosis.
How did the disease affect your life?
I: The disease has severely affected my life, not just from the severe pain I have had to live with, but also from not being believed for 24 years. I have been called crazy and a hypochondriac, I’ve been told it’s all in my head and I have been misdiagnosed with IBS. After a while, you start to think that you are imagining the pain and stop going to see doctors and stop going to the ER when the pain is so severe you feel like you are going to pass out as they will just tell you that nothing is wrong with you. At school, I was sick one week a month (At that time, at least the pain was only there for one week a month) and I have struggled with too many sick days at every job I had. As the years went by, the pain became chronic and I just got used to being in pain every day.
How was your journey through the medical system on the road to diagnosis?
I: Awful, I have had fight with doctors who told me I was making the pain up, I was advised to go see a therapist since they said the pain was all in my head. After a lot of ER visits, they gave up and said it was likely IBS. My period pain and my abdominal pain was treated as two different things (It turned out it was both endo) and treated differently. I tried the pill which actually caused me more pain, I used the depo provera injection for 10 years, I used the contraceptive implant bar and bled for 6 months straight. Then I tried another pill and my pain got worse again with added migraines three times a week. When in Ireland I decided I wanted a laparoscopy, my Gynecologist had decided by looking at me that I did not have endometriosis and said he would open me up to prove me wrong. I was desperate after being in pain for so long. When he found endo, he said he found something that could or could not be it, but it was not it. Those were his exact words. Eventually I went to Northern Ireland and saw a gynecologist with an interest in endometriosis who performed excisions. He removed a lot of my endometriosis, but unfortunately missed a bit as well, so I was only pain free for 6 months. That is when I decided to see a specialist and reached out to dr Mitroi.
You used the Treatment Abroad scheme. Please tell us a few things about the process.
I: It was actually a really simple process. You need to apply for pre-approval and it gives you a list of paperwork you will need after your surgery, Dr Mitroi filled in the paperwork, and after surgery it took 3 months to be reimbursed. The one thing to remember is that you need to have an in-person consultation with your surgeon prior to your surgery. Some people opt to do it a few days before your surgery, but I decided to do it a few months before and took a separate trip to Bucharest. It’s a lovely city to visit, especially in the summer 🙂
What was the thing you missed doing the most before the surgery and did you get to do it afterwards?
I: Go on walks with my dogs every day. I love walking and prior to my surgery, I could not walk very far as sometimes my legs would just give out due to the pain.
As an endometriosis patient, what is your message to people with the same health issues and the rest of the world?
I: Go see an endometriosis specialist. There are 176M women with endometriosis in the world and only around 200 specialists. Standard Gynecologists or fertility experts cannot treat endometriosis. Also, check out: https://nancysnookendo.com/ for all things Endo and to find an endometriosis specialist. Be your own advocate, you have to fight to get help for this disease, but trust your instincts as your pain is REAL!