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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.

[…]

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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Just found out that some people are very criticizing regarding getting anesthetic for certain procedures. That was on a forum about dental procedures as i googled for how long my jaw will be stiff after local anesthesia. I always take it for every procedure (dental or another). It’s 21st century and life is too short for suffering. Nobody is going to build you a statue anyways. There are though people who are simply terrified of getting a shot in the gum and they would rather suffer than being stung. I do understand them because it is really uncomfortable to have a shot in your gums but i prefer being numbed throughout the entire procedure than feel pain, drilling and scratching.

As some of you might have guessed i did have very unpleasant encounters with dentists especially when i was a kid and the procedures were not so advanced as they are now. At my first dentist appointment, he pulled out two teeth without any anesthetic and i was around 5 or 6. You imagine that after that, i wasn’t a dentist-friend anymore. And as a result i lost one of my permanent teeth. Times changed, procedures changed and after i had my first dental procedure under anesthesia, i never looked back. Even the so-dreaded, wisdom tooth removal was piece of cake because half of my face was numb and it went really fast.

If you ask me if the anesthetic shot hurts, i would say no. It is uncomfortable but nothing i couldn’t stand. Maybe it’s because i’m used to have extremely painful periods due to endometriosis and this is nothing compared to some stinging needle. There was one time when the shot hurt me so bad i screamed but my tooth was infected and it was hurting anyways. Otherwise, the anesthetic starts being active within the first 5 minutes and it lasts for about 5 hours. It’s really funny to talk and very weird to drink, you feel like drinking with half of your mouth.

The anesthetic is weirdly enough optional and you have to pay separately for it but as some people don’t understand my easiness in taking in, i won’t understand either their refusal in taking it. The only unpleasant thing is maybe afterwards as my jaw is sore for the first day and stiff for about 3-4 days but i’ll take that over pain, drilling and scraping.

P.S. Not afraid of needles and stand the sight of blood extremely well.

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