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Last year was one of the most difficult and the most eye-opening i had. It had nothing to do with anything financial or material but something much more important: losing people dear to me and facing my own mortality. I know very well we won’t live forever but last year i was taken so near to death i felt its breath on my face. And when you go to such extreme, you realize that you will never be the same old you again. Such experience changes you in so many ways that every little thing that matter before, every situation that bothered you, every person who ruined your day with some childish remark – they become so trivial, they won’t matter to you anymore. Because you know they are only useless disruptions taking away from your precious time that you have left around here with your loved ones. Once you realize that, your priorities will shift dramatically and you will actually see what is really important.

For me it all started when i discovered i had a tumor on one of my ovaries and my test for ovarian cancer came back positive. It was not something definitive but if you never went through such experience, you can’t possibly understand the struggle. From a person that visited the hospital quite rarely, i became the person that was there on a regular basis for tests and screenings. The scariest one was perhaps my MRI which became a bit more difficult after some complications.

I was supposed to undergo surgery but contrary to three doctors’ advice i decided to follow a medication based treatment. After six months of treatment, unfortunately, i saw no results and the second test for cancer came back positive with even higher values. At this point, i wanted to rush the surgery but the waiting time was about six months. I was blaming myself for my decision not to listen to the doctors and i did actually prepare for the worst.

Just few months after i got my first results, one of my family members died unexpectedly. I remember just talking to him about his next trip to Canary Islands and some bread i liked at the grocery store. He collapsed the same evening after a massive heart attack and he never woke up again. It was such a big shock, i still haven’t recovered from it even today. I still think i hear him sometimes yelling after the family’s dog and i dream that he is still alive. The trip we had to Canary Islands few years ago is one of the thing that makes me really happy we never postponed.

The other family member, grandpa, died after being four months in the hospital and struggling with a medical system that let him down. I went to see him all these four months and i still wonder to this very day how i managed to resist without a therapist or medication. Watching a dear person withering away and dying is one of the most painful experiences one can endure. The last time we saw him, he didn’t recognize us anymore.

I struggled for about a year in an uncertain situation not knowing exactly what was wrong with me. But in my case, things arranged themselves quite well even if i was finally diagnosed with a chronic disease.  I managed to get it under control even if the treatment is just a temporary solution and some days i need to just slow down and take it at a low pace so i can manage through the day. I’m also aware that i have to face the ugly truth: i’m more predisposed to ovarian cancer than other people and my treatment has side-effects like heart attack, blood clots, cancer and liver failure. But for the moment i’m a highly functional human being and i enjoy every minute of it.

The last year, taught me how fragile we are and how fast we can lose our dear ones. I did decide not to postpone things anymore and if i really want something in life to just do it. Spend more time with the ones you love, travel more and do the job that you love. Enjoy every moment of it because tomorrow it might be too late. Live trivial situations and people behind because they are a waste of time. Cherish what matters and what makes you happy because in end, the only things we take with us will be the happy moments.

The only thing i regret now is that it took me so long and i had to go through such experiences to realize what is important in life: people who matter and seeing and experiencing as much of the world as possible. The rest has really no importance.

*For more lecture and help on how to focus on what is important read these two books:

Mark Manson – The Subtle Art of Not Giving a Fuck

Sarah Knight – The Life-Changing Magic of Not Giving a Fuck

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Having endometriosis is hard. Having to deal with prejudiced and clueless people is harder. I’m firmly of the belief that if you don’t have a disease, you cannot possibly understand somebody who has it. And that has been proven to me so many times. Most people talk about how mental illness is not understood. I will gladly inform them that having an ignored chronic physical illness is the same. People not only will ignore, belittle, stigmatize you but they will insult you straight to your face. And without realizing it. I will leave apart doctors from this discussion as that is completely another subject. You imagine how seriously my pains were taken if it took 19 years to get a diagnosis.

First don’t expect that people will actually believe you are sick. I was told many times i’m pretending, exaggerating and looking for attention. Meanwhile, i was stuffing myself with codeine painkillers, vomiting, crawling up in pain or walking hunchbacked. And using two packs of the thickest absorbants because of too much bleeding.

You will be judged because you take painkillers…but they are not good, they will ruin your health, you will become a junkie. Look, endometriosis pains are not just period pains. Those period pains can last for months on end. Every day. In order to have a “normal” life and function “normally” because you need to go to work to get a paycheck, you will need painkillers and strong ones. That’s how i functioned half a year by popping painkillers like candies. I had not choice.

After sleepless nights because if pains, you will often hear: but you look well. This is driving me insane because it implies that i cannot be in so much pain if i don’t look like a victim caught in a car accident. This is coming to my first point, that people are not taking you seriously. Please educate yourself and stop saying that immediately if somebody says that they haven’t been well.

Being told to stop the treatment or take a break from it because it has side effects and anyway you feel better now. Everything has side effects. Basically every medicine you take. I was also judged countless of time from people i know to complete strangers because i take the pill which (the latest one) has “miraculously” put me back on my feet and allowed me to enjoy life, a thing i thought next to impossible one year ago.

On an article about the birth control pill on the FB page of Tiede a woman states that she’d rather get cancer instead of having the side effects of birth control pills and she says that they should be banned. I’ll put her comment here and i don’t care about her identity because these people really should be ashamed of themselves. I did reply to her that nobody forced her to take the pill and for some of us this is a treatment who is life improving.

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Later on she implied that i am hysterical screaming at her which led me to the conclusion that she is one of the aforementioned people who doesn’t suffer from this disease and has no idea what she is talking about. (If you suffer from endometriosis, there’s no way you would want a treatment banned, trust me, you would eat shit from a golden plate just to get rid of the pain). I don’t scream to people but i did point out her illogical way of thinking: if this has side effects, it should be banned. As i mentioned, all medicine has side effects but nobody forces you to take them. And if birth control pills are life enhancing for so many women, then why would you like them banned? Because they are an inconvenience to your beliefs? There are many things i don’t agree with or i don’t like but i don’t want them banned.

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And as about she’d rather get cancer, i would strongly advise her to be careful what she wishes for. Before finding out i had endometriosis i tested twice positive for ovarian cancer. I never wish the way i felt at those moments on anybody.

If there was one medicine that put you back on your feet and gave your life back after one year in pains would you just stop using it because of the possible side effects? The possible side effects are horrible but the disease these pills manage is incurable. What would you do? Besides these pills the only options are opioids and surgery. Opioids have also side effects, they cause addiction and surgery, needless to say has its own risks and the recovery is quite long, even if it is laparoscopy.

Unfortunately, as i saw from the comments, there are many people who think like this woman and i’m not surprised at all giving the fact that even doctors belittle women’s pain when it comes to endometriosis and it takes an average to 7-9 years until the disease is discovered. What is worse for most of women is that they do struggle to have children and the more the diagnosis is delayed the more fertility is affected.

Also the pills do not help only with endometriosis but they are used in a wider area of gynecological and dermatological conditions. Saying you want them banned is, how to put it, ignorant and immature.

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This post is inspired by The Minimalists podcast on food. They had a nice and interesting bit where they were talking with their guest Rich Roll about lifestyle and influencing people. This part remained stuck into my head because lately, I’ve been torturing myself a lot by following Finnish media, which i can honestly tell you is the most negative, shaming, guilt tripping machine I’ve ever seen. From problems related to unemployment, that I’ve been writing about recently to mass hysteria related to climate change, Finnish media basically is enough to make any average sane person slip into depression. Together with media, there are also the people who contribute to this madness as they are the most avid judges.

I’ll give you few examples: media criticizing that people are too fat, they don’t move, they are not vegans, they destroy the environment, they use the wrong products, choose the wrong careers, they are too social media addicts etc. This is enough to make every sane person go insane. Add to this the holier-than-you average Yle (national news channel) commenter and you got a recipe for i’ll-strangle-this-person-with-my-own-hands. The cherry on the cake is when they talk about banning things or raising taxes, things which have exactly the opposite effect of what they try to achieve (increased crime and destroyed economy but that’s another subject).

But there is one thing everybody seems to forget: you won’t change people with judgement, negativity, guilt or worse, banning things. You will have exactly the opposite results. You will get frustration, depression and aggression. The Minimalists and their guest, Rich Roll, were talking specifically about this. Their subject was food and the way one can influence people to follow a certain lifestyle. And it’s not by guilt tripping and shaming. It’s by offering a positive example without coercion. Rich Roll is a vegan athlete and and he is also active in social media. He mentions that by presenting what his chosen lifestyle has done for him, you get so much more chances to change people, to follow or at least try a certain lifestyle. Because you make that lifestyle appealing to people, is like selling a product. You present it in a good light and you let people to choose and judge for themselves if it is suitable for them or not.

His lifestyle includes veganism and sports. In my case, veganism would never work because it’s not suitable for my metabolism but i do appreciate when somebody doesn’t shove it down my throat. If one would do that, i would probably eat a whole steak in front of them just in spite, and i don’t even like steak. But i hate when people judge me, tell me how to live my life and blame me that i’m destroying the planet because i eat meat and cheese. For one’s information i cannot even eat that much meat and cheese because most of the meat comes from soy-fed animals and same with cheese. Cheese is also inflammatory for people with endometriosis.

My personal example comes with sports. I used to practice professional aerobics but i gave up because of lack of time. And later on i started considering sports a waste of time. I bumped into judgement and negative attitudes because of this along with the horrified scenarios of look what can happen if you don’t exercise. But they had absolutely no effect on me, on the contrary, it made me hate working out even more. Until, i went at the university physiotherapy because of my back problems. The guy holding the lesson was so relaxed and talking so enthusiastically about fitness and how his patients benefited from certain programs. That got my attention and i went along with some fitness classes. Then one of my colleagues from my first MA needed subjects for her research. You had to play Xbox Zumba. From that moment on i didn’t look back and here i am now training with both personal trainers and on my own.

Did the judgement and negativity work? No. Does a positive relaxed attitude towards a certain lifestyle work? You bet it will. Remember next time before you start barking and judging someone in the hope of changing them, before wasting your energy on that, try a positive approach. Tell them how doing a certain thing has changed your life for the better and how happy you are now. I will guarantee you it will have a much stronger impact than judgement, blaming and shaming.

One has to remember though that people are individuals with their own personalities, preferences and needs. Your lifestyle is not suited for everybody and it’s not meant to be. Not everybody will be enthusiastic about your choices or eager to follow and that’s ok. They don’t have to. But remember even if somebody is not interested, you have no right to judge them. Let them be, it’s not your job to interfere in people’s lives.

The last paragraph reminded me of my grandma when she was trying to make me eat something i didn’t want to (I’ve always been picky with food):

Grandma: This is so good! It’s just divine! I like it so much! Come on give it a try!

Me: No.

Grandma: Come on now! Maybe you will like it!

Me: No. Bleah!

Grandma: Aww, you are so stupid.

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Few days ago i read an article about endometriosis symptoms which are present in very young girls. It was one in ten girls who were complaining of bad periods pains and besides they mentioned symptoms typical of endometriosis. Roughly 5-10% and the study was done on 15-19 year old girls. What caught my eye was the statement that they present symptoms similar to endometriosis. Because i doubt an actual study to find out if endometriosis is surely present in such young has been done.

Endometriosis is almost always presented as being a disease of women of childbearing age which means 25+ years old. And from here creating the belief, which is actually a myth, that women at this age and older have endometriosis because they delayed or refused to have kids. Which is one of the greatest misconceptions of endometriosis along with pregnancy cures endometriosis which is the biggest aberration most people and even doctors still believe.

Endometriosis is such an individual disease that it differs a lot from person to person to the point that one might have severe endometriosis and have no symptoms whatsoever and the other might have an incipient stage and debilitating symptoms.

There is a very simple and logical explanation why endometriosis is thought to be a mature woman’s disease: it is so ignored by the medical community and on another hand so hard to diagnose that it takes an average of 9 years to get a diagnosis. In reality, some women wait much longer than that to be diagnosed. It took me 19 years and it spread to my ovaries forming endometriomas which were easy to spot on an ultrasound. Endometriosis starts really early but by the time it is diagnosed, you are already an adult.

According to this article:

Before the introduction of laparoscopy in the 1970s, endometriosis could only be diagnosed during a laparotomy, major surgery involving a 10–15 cm incision into the abdomen. The risks and costs of a laparotomy meant it was usually done only as a last resort in women with the most severe symptoms who were past childbearing age. Because only women in their 30s or 40s were operated on, the disease was only found in women of that age. Subsequently ‘the fact’ arose that endometriosis was a disease of women in their 30s and 40s.

It was only with the introduction in the 1970s and 80s of laparoscopy to investigate women with infertility problems that gynaecologists began diagnosing the disease in women in their late 20s and early 30s, the age group being investigated. So, they revised the typical age range for endometriosis down to the late 20s and early 30s.

Then again, laparoscopy is not quite a piece of cake surgery to do and doctors are not willingly doing it on patients younger than 20. I started having the typical symptoms of endometriosis when i was 12-13, roughly when my period started but nobody even dared to mention the possibility of surgery. It was just a bad period and that was all.

On the site of Dr. Nezhat, a specialist in the field, it also mentioned that endometriosis is so hard to detect with non-invasive tests that usually doctors and parents hesitate to perform surgery on such young girls without any hard proof of the disease. Also teenage girls are told that menstrual pain is normal and in turn they do believe that pain is normal and hesitate to look for further help. Being a specialist in the field he had endometriosis patients as young as 9 year old and mentions that endometriosis, can be found in rare-cases even in new born infants or in premenstruating individuals.

Recent retrospective studies found endometriosis in 70% to 73% of adolescents with pelvic pain that was unresponsive to medical therapy, while another study by Dr. Marc Laufer, found the incidence to be 95%.  The youngest girl with endometriosis reported in the literature was age 7, while Dr. Nezhat’s youngest patient so far was nine-years old.

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Although rare, it’s also important to point out that there are cases of premenarcheal endometriosis; that is, endometriosis which develops before menstruation begins. A handful of cases of endometriosis in neonates (new-born infants) have also been reported.

Such cases of premenarcheal endometriosis often strike people as surprising, since endometriosis is so commonly described as a disease of reproductive-aged women (i.e. those who are menstruating). However, just as endometriosis can occur in postmenopausal women, it is also true that it has been found in girls who have not yet menstruated.

It very interesting and actually very right when Dr. Nezhat refers to endometriosis as a disease of the adolescence as it was also believed to be in the past. I would dare and take a wild guess that this disease would have had a total different approach if broader studies would be done on younger girls and if their pain would be taken more seriously. Because in most of the cases, if this disease is left untreated for years, it will only cause more damage. But first and foremost it needs a reliable non-invasive way of diagnosis. Until then, the myth of the career women postponing kids will still persist and it’s damaging everybody.

 

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All hell broke loose at the end of March last year when i started to have constant pelvic pain. Much like a period pain from hell but instead of a week, it was everyday. I always knew that there was something wrong with my body because no normal woman ends up at emergency because of her periods. But doctors never took me seriously, just period pain, learn to live with it, all women do. Little did a know that later on it will develop into an almost 7 cm tumor.

The tumor was discovered at a private hospital and it costed me around 200 euros because the public healthcare was not really interested to know why sometimes i could barely walk because of the pain. One bored doctor just pressed on my belly and she said convinced that i’m just fine. I still fail to understand how can you not feel a 7 cm sized monster.

The fun started at the private hospital when after having an ultrasound done and being told i have an endometrioma, i was referred to surgery. The doc told me that i have a disease called endometriosis and it could be in an advanced stage if i managed to have such a big tumor. That didn’t sound new to me, i knew that i might have it but nobody listened. I tried to persuade the doctor to prescribe me a certain brand of birth control pills in the hope that maybe i will get rid of the pain and maybe it might shrink the tumor. She flat out refused without any reasons. She said coldly that it won’t work.

But why not give it a try? I was sent at a public hospital for surgery, met another doctor, same story. I could barely persuade her to prescribe the pill to me. In the end i told her i’ve been taking codeine pills for several months and i’m really afraid i will become a junkie – my pains were that bad. I did get my hand on those pills from unofficial “channels” because no doctor would believe my pains were so bad. But i needed strong stuff in order to go to work and to go on. The problem was…i really didn’t want to get hooked on them. I started taking the pill again in July along with painkillers and cancelled the surgery. I was putting my last hope in those artificial hormones.

At the beginning of August, i ditched painkillers as my pains started to fade and i could sleep better after several months of painful sleepless nights. Amazingly, i did not get hooked on codeine even after using it for about four months. Now the pains were occasional and at the last check-up in October when i also had an MRI, the situation was the same. The tumor was still there but the pains were’t that bad. I decided to have the surgery because the tumor might burst and get into more complications. The doctor prescribed to me strong painkillers that are usually given to rheumatoid arthritis patients. But i never got to take them…

On April the third i was scheduled for surgery. I started crying and thought that’s it. I was so afraid i started having nightmares and slept very bad. During these months i had several CA-125 tests, used to detect ovarian cancer, and got some positives but with the values not being so high above the limit, i was just classified as an endometriosis patient. They do test positive in endometriosis patients as i was assured by two docs.

My surgery was cancelled one week before though because the surgeon noticed that what was once an almost 7 cm tumor it has shrinked into a 3 cm cyst. She was very surprised but nevertheless she told me that in rare cases it might happen as the pill does shrink endometriosis. Although it was hard to believe that such a big tumor could be shrinked so much. She decide to just keep an eye on it and sent me for some more tumor marker tests which came back negative after two weeks.

It was also hard for me to believe it but i am very glad i stood my ground and insisted to have it my own way. I could also say i was lucky and my body just responded to the treatment. The last time i had to take a painkiller for endometriosis pain was in December last year. And since April i returned to my normal fitness schedule and biking as much as my heart wants.

Am i completely pain-free? Not really, sometimes i do have pelvic pain but not as bad as it used to be. Will this treatment work in a long term? I really don’t know. Birth control pills do have their risks and bodies respond different to them but for now i’m enjoying the fact that they work and i can have a normal life. Besides there is no other treatment for endometriosis so it’s not that i’m having too much choice to start with. But I think i’ll worry later about the future.

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When it comes to sports i do not keep journals, i do not measure steps, kilometers, calories or anything. For me this would get so boring and time consuming and it would eat all my energy and enthusiasm. I usually use the calendar that Fitness Blender offers and i’m scheduling there the workouts i intend to do during a week. I do not plan more than a week because of my health issues and i do not take it hard if one day my body just says no. I learned to listen and respect it. After all there is nothing i can do when it decides that not today. I’ll just make it tomorrow if i fell better or depending on how tired and in pain i am, i take on a less demanding workout.

I usually do between 3-5 workouts per week, sometimes even six but some of them must be pilates as i cannot do high impact workouts 6 days in a row. It’s too much. The lengths of the workouts are between 30 to 50 minutes or even up to one-two hours if i am running. If i do 30 minutes workouts, i usually schedule them one day after the other but i’m making sure to work different body parts on different days to avoid tiredness and injuries.

This week i took five days and scheduled them in the following way:

Monday – Lower body workout

Tuesday – HIIT Cardio and abs workout

Wednesday – Fat burning cardio, butt and thigh workout

Thursday – Upper body workout with descending reps

Friday – Break

Saturday – Break

Sunday – Running (running and walking)

This week i call it a lucky one as i could do all workouts and didn’t feel tired at all after them. I did have though pelvic pain few days in the mornings and i thought i might not make it to do the workout but luckily that was not the case in the evening.  All of the workouts above, besides running, are from Fitness Blender but sometimes i also do my own DVD’s.

Do i choose the easier or the more advanced part in a workout? Well, it really depends on the exercise. I try to do the challenging part but if it is too challenging i switch to the easy version, if i get too tired – i switch to the easy version. There is no use to strain myself and do the exercise incorrectly. Better do the easier version and do it correctly than strain myself and most likely get injured. The same goes for the amount of weights i’m working with. I use weights that are challenging but not wearing me out. Probably the most important part in all of this is getting to know your body well and workout accordingly. To be honest, i’d rather use lighter weights than heavier ones. Also when you live with a chronic illness, you learn the limitations of your body quite fast.

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Very few people know that i used to practice aerobics (so-called cardio) at a very advanced level for several years. I gave up because of lack of time and mostly because i took up other activities. The whole fitness thing started in 2013 after a visit at the physiotherapist; lower back pains have plagued me for a while but then, at that very moment i had to face a very unpleasant truth: i had very weak lower back muscles. With just two exercises (that i failed completely) he proved me that i had a lot to improve. It was not late but it all depended on me.

Being at the gym, i told him: show me how to use these machines. We went slowly through every single machine in the gym and i also got tips for exercising on my own. I got all kinds of fitness DVDs from thrift shops and some i borrowed and copied for my own use as i couldn’t find them anywhere. And so i re-started my journey. It was a bit difficult because i had to read and watch the tips the virtual instructors had in order not to hurt myself, start slowly and build my strength gradually as my back couldn’t have stand a high impact training immediately.

The whole fitness routine was not only for the back but also to get rid of negative thoughts and energy. It does feel like every ounce of dirt from your mind goes away with the sweat and you are replenished with good energy. To add to this, i also noticed my body changing. I didn’t have in mind losing weight as i didn’t have problems with it but my problem was, like many others’, sedentarism. And it was destroying my body.

That was up until last year when i had to stop almost completely after i was diagnosed with endometriosis (at which point the disease was so painful even walking hurt). I was so angry because something i really loved was taken away from me and i couldn’t do anything about it. Part of me accepting the surgery, was my desperate hope to get back to the fitness routine without even taking into consideration that the recovery might be as long as six months; abdominal surgeries are very hard to recover from and i’m not a top star in recoveries.

But my luck and stubbornness managed to get me out of this situation and i cancelled the surgery because my body responded to medication that three doctors considered useless. After one year of not doing almost anything besides some occasional pilates i decided to re-start my routine with low-impact exercises. Everything went better than expected and now i’m on one month of 3-5 weekly workout routines. I did have some less than optimal days when my disease decided to show who’s the boss but i did complete my workouts and even running with mild tremor pains.

For the moment i don’t have any steady plans because i’m very well aware of the fact that this disease can ruin everything again so for the moment i’m enjoying my painless workouts and give myself a break if i see i can’t carry on. But it’s good to be back to my old self!

For the ones interested in my fitness routine, i use FitnessBlender.com and i compile my own workouts which consist, besides of videos, running and my own DVDs.

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