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I finally got my diagnosis in 2022 after getting a surgery for a huge cyst in my left ovary. The past few months before my surgery I went to the ER 5 times and one of them was after I fainted on my way to work. Every doctor that saw me just told me I have dysmenorrhoea and I'm over reacting. They tried to convince me that nothing was wrong and would prescribe an anti-inflammatory pill and send me home. At that point I had a 8.5cm cysts in my left ovary.
I found a doctor that a friend of mine suggested and went to him. He ended up doing my first surgery. That surgery was a failure because the doctor that did it took the cyst out and didn't even bother checking everything thoroughly or explaining it to me. I kept having horrible pain afterwards and his solution was to get me another surgery to cauterize the endometriosis he supposedly found on the left ovary. The only good thing is that after 22 years of pain and agony, I finally learned that what I have seen experiencing has a name and I'm not crazy.
I ended up finding another doctor on September 2022 that a girl from the local endometriosis community suggested. I cried the first time I went there because he actually treated me like a normal human being. He felt my pain, he really cared. He did everything he could to avoid another surgery because the last doctor scarred me a lot. We did tons of tests and tried to fight it together with non invasive methods, to give my body time to heal. I managed to survive until July 2023. I had to be hospitalised in June because the pain was insane. I was vomiting, my lower back/leg and bowel were killing me. I couldn't sleep, eat or function normally. So we decided to proceed with the excision surgery. It had to be done off insurance so it was a really expensive option, but I had to try and save myself.
When I woke up from the surgery I was stunned. The whole peritoneum was infected, my left fallopian tube was taken out because it was a mess and we also had to remove a cyst from my bowel. I also found out that I have severe adenomyosis, my whole uterus is affected and it's non operable. The only solution would be a hysterectomy that my doctor doesn't want to go through because my age.
The first two months were really hard. I had to take a lot of opioids to be able to just exist and I basically couldn't do anything. The pain was insane. It started getting a little better after that and we also caused menopause with shots to help my body heal better. That absolutely killed me. I had crazy anxiety attacks, I was crying and constantly thought I would die. We balanced that with hormones to make me feel better and kept going for four months.
I'm now 6.5 months post op and I'm actually feeling better. I have pain during ovulation but it's manageable but I also suffer from really heavy bleeding (stopped my last cycle with meds because I was bleeding dangerously) and bloating. I also can't still have any sexual contact because I hurt a lot for hours after it, to the point where I need tramadol to stop it. No matter all that though, I can tell that I'm better. I'm used to my body hurting for the past 22 years and that pain is no longer here.
I know I still have a long way ahead of me but I'll manage it. I know that my adenomyosis will cause symptoms and that I will have to find a way to function and keep going on with it for the time being. I know nobody can guarantee that endometriosis won't come back sooner or later. I know that I may never be able to have kids. I know lots of things could go wrong but I also know that I finally know what is wrong with my body, I can battle it and learn to co-exist with it, depending on the situation at hand.
It's nice to have some sort of closure after being rejected and bullied/mocked for more than 20 years. And I will do my best to help anyone needing support in their endometriosis journey.
I think more awareness needs to be spread, I think girls all around the world need to know that pain is not normal, neither is suffering. We need to make sure that in the future no woman will be mistreated or denied care because doctors don't believe her. We need to make sure parents of young girls realise that endometriosis is a serious issue and do everything in their power to help their daughters get proper care and support. Especially in Greece where endometriosis seems to be some kind of taboo still for parents.
We are warriors, we need to be united to spread awareness and help sisters in need.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
It took 22 years to receive a diagnosis. It all started when I was 14 and I received an official diagnosis at 36 when I also had my first surgery as well.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
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The initial symptoms were horrible pain during my periods to the point where I would faint, or just lay down and cry in agony and tons of blood loss and bloating. They got worse over time and I got to a point where the pain was constant, I needed meds to stop the flow of my period and I could barely walk. I would vomit for days, have insane bowel symptoms and faint from the pain and exhaustion. I had my excision surgery on July 2023. The first few months I was in constant pain but right now for the past 2 months, I have pain during ovulation but it's manageable but I also suffer from really heavy bleeding (stopped my last cycle with meds because I was bleeding dangerously) and bloating. I also can't still have any sexual contact because I hurt a lot for hours after it, to the point where I need tramadol to stop it.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
I've been to so many doctors I can't even count them. I've also ended up to the ER countless times. Crying, barely walking, unable to speak/communicate due to the amount of pain I was in, after I fainted from pain etc. They all tried to convince me that I have low pain tolerance and that it's normal for a woman to feel pain during her period. They all looked at me like I was crazy, like I was stealing Time from someone who has an actual problem, like someone who just went there to get a doctor's note because they're too lazy to work. Endometriosis and adenomyosis are bad, but ignorance is even worse. Being called crazy/lazy or a drama queen for 20+ years is exhausting.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I've been living with depression for many years now. People can't really understand. Same thing with doctors. They think that when you cancel your plans it's because you're bored, they think that when you can't do something it's because you're lazy. They can't understand what it feels like being unable to move or function because of endometriosis and what it's causing to your body. I was in a really bad state, especially for the past 4 years where the symptoms got to a point of totally screwing my whole life up. I tried explaining it to friends and doctors and family. Even my family truly believed me after one failed surgery in June 2022 that lead to the endometriosis diagnosis.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My family is really supportive and they try to learn, understand and evolve. My partner really tries as well. He ensured two surgeries, menopause, lots of pain, misery and expenses. Always trying to understand and help me. Same for my close friends. The thing is that every single one of them got to that point after the excision surgery and the mess my doctor found inside of me. Before that everyone thought I was overreacting. I'm thankful though, because they are trying and are becoming aware. Better late than never.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I finally found a doctor who actually believed in me, an amazing person that actually gets endometriosis and has helped a lot of women in Greece (and not only Greece). I went to him after a failed surgery in 2022 because I read that he does wonders for endometriosis. He's the first doctor that treated me as a person who was suffering and he's been with me every step of the way. He did an amazing job before and during my excision surgery and is still here, guiding me ever since. He's always there, no matter what. When I went to him I had just undergone a bad surgery for a cyst excision and I was in worse shape than before that surgery. He took me in, helped my body heal and tried to do everything to avoid a second surgery within a few months from the previous one. Everything failed and we decided to move on with the excision. We have a long way to go, because I still have a severe case of adenomyosis that isn't operable but I have him and I trust him with all my heart.. We will figure it out, together.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Every single area of my life. I'm currently trying to rebuild everything.. I was fired from my previous job because they actually thought I was lazy. Lots of friends "left" because I got to a point that I could barely do anything so they just thought I was lazy and boring. As for the hobbies, my depression got so bad for the past few years, because of the pain and misery that I stopped having any hobbies. I'm really trying though, one step at a time, for the past 5 months, to start over.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
What also worked for my case as well was the menopause shots, especially after the surgery. We stopped my period for 4 months and it really helped my body heal better. I'm currently not taking any meds though, for the past 2 months. Only some tramadol, if I feel really bad during the first day of my cycle. Anti-inflammatory diet and walking really make a huge difference for me. And my doctor is all up for trying to improve everything through proper dietary options, working out and taking care of myself. He will prescribe hormones and meds again if necessary but after talking about it we are trying a more natural approach for now. We're trying to see how my body responds and evolves.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
The one thing that didn't help me at all was contraceptive pills. They were totally useless and did not offer any kind of relief. The only thing they gave me was Extra bloating and weight. What also was a huge fiasco for me was the Mirena device. It made my pain way worse and it caused me to bleed for months and want to kill myself. I managed to keep it in for 2 months before going crazy and having it taken out immediately.
What do you wish you knew earlier in your journey?
I wish I knew that endometriosis is normal, that it's real. That we are not crazy and that we deserve proper care and treatment. I also wish I knew that doctors will often try to keep you in loops to gain money and that may result in unnecessary and not useful meds or surgeries that will actually hurt your body and soul even more. I wish I knew that it's a chronic issue and that you have to educate yourself about it in order to help yourself.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
After getting my diagnosis I turned to an endometriosis group in Greece. I asked about doctors and opinions and someone from the community suggested my current doctor. The one that actually saved my life. I think it's important that you can share experiences and questions with people who know your pain and your suffering. It can give you strength and clarity at times. No woman should go through this hell alone. I wish there was more awareness in my country and I'm actually thinking about it a lot for the past 1.5 year. Trying to find ways to help with that. We don't have an active endometriosis community though, not one spreading actual awareness and doing things for it's members. I promised myself last year that I will try to find ways to fix that after recovering and feeling better. We really need a stronger community to support one another.
Are there any misconceptions about endometriosis that you've encountered?
Yes, most people and unfortunately that includes health care professionals as well think endometriosis is just another word for dysmenorrhoea. It's something I've heard thousands of times in my life. Also lots of people seem to think that endometriosis will be cured if you get pregnant and won't stop suggesting that you do. It's exhausting trying to explain that none of the above is accurate.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
Try to educate yourself. Read, understand, be ready to ask the right questions when you get to a doctor's appointment. Don't let anyone try to convince you that the pain is normal. Don't let anyone make you feel like you're the problem. If your current doctor is not understanding what you are going through, then it's not the right doctor. Demand better care and search for a new professional, who will be willing to diagnose you and help you heal. If you've just been diagnosed: Be patient and try to listen to your body and cherish it. Rest when you have to, it doesn't make you lazy. Try reaching out to your local community and/or online communities to talk with people who have been already battling Endometriosis and/or adenomyosis. Choose your surgeon carefully. It has to be the right person and they have to genuinely be there for you. Ready to listen, responds and support you in this difficult journey. Talk to the people close to you. Explain the situation and try to educate them on your condition. Whoever cares will want to learn and will make an effort. If you have a life partner, include them in the appointments with your doctor. It will help them understand and become more aware as to what you are going through exactly. It will also help them feel included and realise that it's a difficult journey if they decide to stay by your side.