One year after excision surgery
Sophia is one of the endometriosis patients that after more than 25 years since her symptoms have started, and after being dismissed by doctors in her country, she decided to go abroad for surgery. One year after her surgery with Dr Mitroi, Sophia is doing well and as she says, able to fight for her rights to medical care and help others as well.
At what age you have had your first symptoms?
S. I started having symptoms when I was 13 years old. I remember going to the ER and having an speculum for my first time, I fainted because of the pain, I had never had sex (I was 13) and I still remember the trauma. Nothing came up, but cysts which was “nothing” for them and I was sent home with painkillers.
Can you describe your symptoms, please?
S. I was always tired and scared of having my period; ovulation and the week before menstruation used to be awful. I wasn’t in pain everyday but my period was “there” all the time, is it coming? How is it going to be this month? Is it going to be painful? Should I make plans? I was a teenager and something that should be natural became a problem. I used to have pain during that time, but not an incapacitating pain, just 1 or 2 weeks per month. I have been suffering with anxiety and depression since I was 19, my mood changes where so abrupt, always linked to my cycle, my period.
As you probably know, most women are told that it is normal to have painful periods. When your symptoms have started, what were you told by your friends and family?
S. I can’t remember anybody being worried about my health, nor my family nor the doctors. I was just living the way I could without complaining too much because I was always told that I was an hypochondriac and a seeker attention, and that used to make me furious because I was in pain, pain was real and I was suffering.
I’ve started taking antidepressants at the age of 19 because everything was in my head and I was an “anxious woman” …but I ended living with it the best way I could, painkillers all the time during my period, sleeping and waiting till it’s gone. I remember that it was then when I started seeing psychologists and psychiatrists.
Do you remember the first time you went to see a doctor because of your symptoms? What were you told?
S. I have been going to gynaecologists since I was 13, but the one who was looking after me closer, was my head doctor. He always thought that I was a very active girl, with a big sense of well living, friendly, always smiling and doing things for others, so I think that I was never taken seriously, like, ok, its Sophia, she will cope with it because she can’t be in so much pain if she does that much. So I think I was told nothing because I didn’t used to show my pain not to be told that I was faking it. I kept it for me.
You live in Spain, a country well known for its culture, food, and tourism. What is your experience with medical care in your country?
S. I have had a very frustrating medical experience in my country. If I am completely honest, I feel I was left aside, even from my head doctor. My country was well known for its good public health care, which is quite good, but with endometriosis we have a long way to reach a “standard care”. I am not talking about having good surgeons, which is a dream, but at least about having doctors who cares about what is happening to you and are willing to investigate or ask help from others. That doesn’t happen here in Spain.
When they realise that you know about endo, they don’t want to treat you, they used to say “she knows too much”. Doctors recommend hormones and some are doing surgeries, sometimes even for hard and difficult cases, on women which are nearly destroyed by the disease. But we can imagine how these surgeries end, incomplete, followed by another surgery, because doctors here don’t have the proper skills to manage excision surgery and pelvic anatomy. I have been dismissed by the endometriosis specialist in Malaga, by the public health care and by the private doctor who did my third endo surgery and doesn’t want my case anymore. That’s why I started searching for a surgeon out of my country.
How long after your first symptoms you were diagnosed with endometriosis and how?
S. I was diagnosed with endometriosis when I was 37 years old. I have a family history of breast cancer so I do my routine check up every year and in one of those checkups my gyn did a vaginal ultrasound and she said: “Ok, you have a tumor in your uterus and endometriosis, you have cysts in both ovaries but you have a big one on your left one, please don’t jump, don’t do hard exercise because it can break and cause and hemorrhage”.
I was shocked; I had no idea about endometriosis and she didn’t explain me either. I was told I had a tumor (not knowing if it was good or not) and I was sent home. That was in February 2017. On the 10th of March, I was in an operation room with another doctor (Oncologist- Gyn) having an exploratory laparoscopy. The doctor found frozen pelvis, he detached everything, colon, left ovary, uterus from abdominal wall. It was supposed to be an exploratory lap and he ended doing something he wasn’t prepared for. Ten days after surgery I had more pain than before surgery so I thought it was the time to look for help somewhere else.
Can you tell us about the impact of endometriosis on your life?
S. Now I realise that I’ve been very strong trying not to listen to my pain because I thought everybody was just fed up of my health issues so I’ve always tried to minimise what and how I used to feel as not to be told off. I understand now, with my diagnosis why I was like I was, tired, shy, always in the back, always late, always saying no to plans, always sitting down because I couldn’t stand up for a long time.
My mental health has suffered a lot. I have been battling not knowing what I was fighting against but my life has always been like a mountain, nothing was easy because my body and my mind couldn’t follow my desires. I just wanted to have a normal life and it’s been a fight to have something similar. Still is. I left my partner, I left my job (3 years ago now), my relation with my family is nearly broken, my relations with friends have changed too much and my relation with my own self is a constant work because I know I will never be the one I dreamt. I know now that I can live better but it’s been too long and very exhausting and frustrating, but never too late.
It is now 1 year since your surgery with Dr Mitroi. How are you now?
S. Regarding my endometriosis I feel a new person, I don’t have those two awful points of constant pain in my lower back and in my left flank, I can walk for hours without pain, my knee doesn’t hurt. I feel relieve, now I can rebuild not my life but a new one knowing that I don’t have to live with pain 24/7. That surgery made possible to discover that I have complex digestive issues generated by the late diagnosis. At least now I know and I can treat them with a good specialist that knows that endometriosis can cause SIBO, Imo, eating disorders, eating intolerance, and that’s what I’m healing now, trying at least.
I have some urinary problems due to the late diagnosis that I’m trying to fix, maybe I’ll need a surgery to fix problems from my third surgery. I have to say that for me the first three months after excision surgery with doctor Mitroi were complicated. I was in so much pain, the pain was completely different from before, rawer, but still painful. I remember witting to Doctor Mitroi, defeated because I thought nothing had changed but the fourth month was unbelievable, no pain, more energy, super happy feeling, so it was just a question of time.
How was your recovery?
S. It was slow, as I said, the first three months after surgery were very difficult for me, I had pain and I was thinking that after all that effort nothing had changed. I was happy because my constant pain went away right after the surgery, but when I came home and I had my first period after, wow, I felt destroyed. I talked with Doctor Mitroi and he told me to be patient, that each body has different rhythms and that after being with endometriosis for so long and after three surgeries my body will need more time to readjust. And that’s what happened; everything changed the 4th month and still counting!
I have things to resolve (digestive, urinary, tiredness) but I can say I don’t have pain, my character has changed for better. I can go out with friends, I can read a book something that was impossible for me before due to a lack of concentration, brain fog. I can now go to the countryside with my dogs like before and enjoy that simple things I used to enjoy before the incapacitating pain. So many things have changed but life’s still not easy because of the “chronic” label that makes it really hard to find a formal job. But the feeling that I took my life back and that I’m not in pain 24/7 anymore is so encouraging.
As you know, travelling for care is not easy and most people are worried, scared and so on. What advice will you give to people in similar situations as you about travelling for care?
S. I will tell them that living with pain is not the choice, that, sometimes, you have to jump out of your comfort zone to get your life back. I thought that travelling to Romania would be much more complicated than it finally was. Fear is always there, even more when you can’t trust your body, but once you land there you awake all the energy and the strength you have within you and in one week (in my case it was in three days) you can feel the difference and I assure you that that feeling is so worthy, inexplicable, liberating and overwhelming.
They have everything prepared for making you feel comfortable, safe, and in good hands, they can organise even the taxi that picks you up at the airport to take you to your apartment. Everything is easy there to make you feel at ease. Believe me, it’s scarier in your head that in reality, and above all you are fighting for you, your health and your life. I felt so well that I took advantage to do some tourism, a thing that I couldn’t do for a long time. IT IS SO WORTHY.
Tell us something positive about having endometriosis, from your experience. Like making friends, raising awareness, etc.
S. Having endometriosis had made me stronger, more empathetic. I have learnt so much that now I feel I can help others to find a way to live better, without that much pain because now I know that there are alternatives out there, you just need to investigate, do some research and make a decision. I know it must sound easy but it is not, I have done that job and I’m always willing to help others so I supposed that endo has made me a better human being.
Another amazing thing is the amount of nice people I’ve met, doctors, therapists, nurses, endosisters that are now my family. I eat better, I look after my body and my mind as a priority like never before, I’m not shy anymore in front of a doctor. I can now stand my grounds and ask for help. It’s been a year now and sometimes I ask myself, did I do it? And I feel capable again, empowered and useful. No, it wasn’t in my head and now I know it, for sure. Don’t give up and fight till you don’t feel pain, that pain is NOT normal.