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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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I remember reading a while ago an article about sanitary pads tax and how that should be lowered (from 24% to 12%), including tampons, absorbants and incontinence pads. In Finland, a pack of average absorbants (14 pack, normal size) is between 2.30-3.50 euros and here i don’t count in cheap brands which are an absolute disaster because of their low quality. Don’t ask me about tampon prices as i don’t use tampons (i did when i used to have periods but only when i was swimming and they were extremely uncomfortable). And before judging me why i don’t use a menstrual cup – i tried but it was a disaster and i guess because of endometriosis which suspicion was later confirmed by a specialist.

But, i’m writing this because it amused and somehow disgusted me the comments left by men who demanded that they should also get tax-free razors. Look, you just don’t compare sanitary pads with razors because if you take both genders into consideration, women also use razors. And quite a lot if you take into account that some of us are quite hairy. Add to that wax, hair removal creams, hair removal devices or hair bleaching. Because society sees us as disgusting monkeys if we dare to expose the smallest amount of hair in the places deemed by the almighty society not fit to show hair on. And to add to that razors for women are more expensive than men’s. I saw that with my own eyes in the grocery store one day when i compared the prices out of pure curiosity. As a guy you can go around with an unshaven face but dare to go out with hairy armpits as a woman (search for death threats that some women got because they dared to show their bushy armpits in public).

So both of us we need razors but only us need sanitary pads because well, damn biology. You can stop your period but then again you need money for the meds to stop it. And now i’m talking about lots of women who struggle with money and for whom 2.30 euros is a lot of money (not to mention women who have heavy or extended periods and they might need 3+ packs of absorbants per month). In this case about 10 euros per month is lots of money. Nobody said about giving sanitary pads for free although it might be a very good idea for the ones who live in poverty. But lowering the tax would be of great help. And whoever can stand a menstrual cup, i do advise them to buy it because even if it is a bit pricey, it will save a lot in the long run. I would use one if i could as most of sanitary pads are also manufactured from synthetic products which are not healthy for the body or environment. There are better sanitary pads namely cotton and organic pads but they are a bit more expensive than their synthetic counterparts.

In Finland the brand Vuokkoset sells organic bio-degradable and cotton absorbants and pads.

 

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This issue has been pressing me for a long while. To be more specific since i started taking regularly birth control pills in my early 20’s and noticed that one cannot get them as subsidized meds as with most of prescription pills i had. Why this issue bothered me? Because i wasn’t taking them for birth control but for a condition that was later diagnosed as endometriosis. This disease has no other treatment than hormonal one which includes birth control pills.

I tried to look into the matter and why these pills cannot be prescribed as medical treatment for a disease. In Finland, doctors tick a box on your prescription: for disease, other reason. Birth control pills with the exception of only one brand cannot be ticked under “for disease” box. Why? Right now i cannot think of any other reason than legislation which is quite complicated and involves legal aspects and the fact that birth control pills are mainly seen as used for recreation (sex) which society is still quite taboo-ish about and cannot stand women getting a free pass when it comes to it.

Still, the last reason still doesn’t have an excuse because the doctor can very well prove you have a medical condition which requires the pill as a treatment and therefore prescribe it under “for disease” category. I don’t see why it is that complicated unless there are legislation factors involved. Diane brand of pills is subsidized and used to treat, for example, acne. Why couldn’t other birth control pills be allowed to be used in treatment of other diseases?

There are lots of medications which are used for several diseases. Birth control pills are mainly used for birth control but they help with many other issues such as endometriosis, PCOS, acne, amenorrhea, PMS, menstrual cramps, heavy periods etc. The fact that only one brand is subsidized is not enough because this one brand is not suitable for all women. I couldn’t stand Diane, it made me sick. I tried several brands with no success until i came over one and i stayed on it as i didn’t have any serious side-effects. It is one of low-dose hormone BC which probably explains why my body tolerated it.

Some birth control pills are affordable but other are very expensive and given the fact that not everybody has an optimal financial situation, they should be on the subsidized meds list, if not for preventing pregnancy, at least for disease. Some of gynecological diseases are crippling as endometriosis is and because the pill is the only treatment for it, it should be recognized as one by insurance companies. Not to mention that most of painkillers are not subsidized either, the disease might cost one a lot.

On the other hand, it doesn’t surprise me that the pill is not considered medicine as endometriosis is still not understood and patients wait years for diagnosis. Also, the disease gets very few money for research although it is as common as diabetes and asthma. At least, this little help could be welcomed by many.

As about the judgement from people, i would say it should be ignored. The judgement usually comes from the fact that these pills were created and mainly used to prevent pregnancy and as i mentioned, this thing does not usually stay well with some people especially that women use them. Most things i’ve heard are usually related to side-effects. Every medicine has side-effects but when it comes to the pills, it’s so amazing how people become so suddenly worried about your well-being and need to remind you about what you do to your body. When we all know it’s not about that. You wouldn’t lecture a diabetic on their meds, right? What’s the point in judging me? If i’m not taking the pill then i have to take painkillers which are actually worse and they do not stop the growth of endometriosis as the pill does. Alternative medicine is not an option because it doesn’t work, i also tried that.

All of us who take meds for one reason or another, are very aware of the side-effects and what we get ourselves into. But as for now, there are unfortunately no better choices. I am though grateful that i live in a place and age where i have access to this treatment.

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It’s been almost 7 months since i found out i have a big endometriosis cyst on one of my ovaries. I know that the disease has already spread if it managed to form itself into a visible cyst and who knows for how long i have had it. Although i suspect since i was a teenager if i were to think of all the symptoms that doctors mistook for different issues along the years.

I’m still not fully aware of the gravity of the situation and i do deny quite a lot. This luxury is also permitted by the fact that the medication i was put on works quite well and most of the time i am pain free. As i have been reading from endometriosis forums, others are not that lucky. Of course, i don’t know yet how serious it is unless i have the surgery which i’m still waiting for. I can’t say i’m in a hurry to have it because right now i’m looking for a full-time job in my field and struggle with a society that fully blames me for the lost of my job and for this disease. Although i had no fault in it.

What did i learn though from this? First, not to take my health for granted. Today you might be completely well and tomorrow you might receive a horrible diagnosis. You are not invincible and human bodies are very fragile. It’s no guarantee that my disease won’t become worse over the time. I have to keep in mind that there is no treatment and no cure for it. The only few options available are not very efficient and i might say quite dangerous: hormone therapy and surgery.

I learned to accept the limits of my body and to come to terms with them. I had to stop doing any kind of harsh physical activity including my beloved fitness hobby. I can’t stand or sit too much, i can’t even do most of the house chores sometimes.  There are though some days when i can do pilates and mild core strength exercises. And there are days when i can just exist. I learned that if i don’t force my body and just let it be and live accordingly to its limitations, i get by much better. It was difficult to listen to it in the beginning when we live in a society that drives us to exhaustion by transforming us into overachieving robots but stressing my body and pushing it over the limits made things so much worse. I also realized that if i continue to ignore my body, i will also destroy my mind and this is the last thing i want right now.

This disease puts a huge toll on the mind as it is so by finding a certain harmony with the body, i’m trying as much as i can to preserve my sanity and be productive at the same time. The pace is much slow but i’d rather go that way than crumble for good.

I became used to carry a special bag full of medications with me all the time. I have five types of painkillers and i learned to know the pain very well and to medicate according to the intensity of the pain. I learned that taking Nurofen Plus (the one with codeine) for a week didn’t get me addicted as i was afraid it will. Now, i’m just glad i don’t have to take it.

I have the hospital emergency number set as app just in case my cyst bursts or i have ovarian torsion. Or i might have some other emergency related to the side-effects of the hormones. I also learned all the symptoms and revised the first-aid procedures just in case.

Eating healthy and staying fit is not totally going to protect you from diseases. Of course, i don’t want to turn into a bitter person and eat all the junk food which comes at hand. I still take care of my diet not to worsen the endometriosis. But, in many cases, lots of people will blame you. You must have eaten healthier and exercised much more. I learned not to listen to them because they are not the sick ones and automatically they don’t understand a thing. And as I later learned some of well-known fitness trainers also struggle with endometriosis.

This goes to the next lesson and i think the most important one: people will not understand you. They can have mountains and oceans of empathy, if they are not the ones dealing with this disease, they won’t understand. And this also made me realize how little society knows in general about endometriosis from the reactions i usually get. It angers me to see so much ignorance but i still try to calm myself down and understand that these people have not idea what they are talking about. Sure, they could just keep their mouth shut but not everybody knows the fine art of diplomacy.

This disease doesn’t mean the end of life. It makes it a bit more difficult but in no way i thought of giving up everything i like doing. I am able to study and work as i did go to school and held down several jobs while having this disease (i just didn’t know what i had back then), rarely missing any days. Doing something i like usually has even improved my spirit and made me more resistant to the disease, in a way, completely ignoring it. There are lots of us struggling with this but somehow we manage to live normal lives or at least as close as possible to normal.

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Magnetic resonance imaging (MRI) is a technique that uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body. Most MRI machines are large, tube-shaped magnets. When you lie inside an MRI machine, the magnetic field temporarily realigns hydrogen atoms in your body. Radio waves cause these aligned atoms to produce very faint signals, which are used to create cross-sectional MRI images. (Mayo Clinic)

I don’t know how many of you have seen an MRI machine in reality. I did see lots of those but only in movies. The latest that comes into my mind right now is House. I didn’t have any strong thoughts about them besides that they are cool and then i was just curious to read how they work. Of course, i couldn’t see myself in one of those, only the thought of it made me claustrophobic. I was supposed to have a knee MRI last year, but the doctor i complained to of knee pain thought i have nothing serious so he just send me home. (That’s what they also said about my endometriosis).

So, after being diagnosed with a 7 cm tumor on my right ovary, the last doctor i went to see (was it maybe the fourth one this year) sent me to an MRI to see if i have deep infiltrating endometriosis or any other tumors for that matter. I took some blood tests before and got an instruction sheet which didn’t tell me much i didn’t know already. I knew the test was lasting about an hour, i knew MRI machines are very loud, i knew about the contrast dye, and i knew i had to sit very still throughout the whole procedure. And i knew those machines give you a very claustrophobic feeling. That was the thing i was most afraid of. One hour in that thing? No way i could manage.

But things weren’t quite as I’ve expected. The preparations before the MRI took about half an hour and included making sure i have absolutely no metals on me, this was quite logical, huge magnet there. I thought i’m going directly into the MRI room but instead i had to lie down on a special bed in the preparation room and of course, change into hospital clothes. I had an IV put into my right arm for the contrast dye (that really hurt; note that i am very sensitive to pain). Then the doctor came and i was given some kind of gel in the area down there for better imaging. Now, i know why they gave me hospital clothes, because that gel started to come out from my insides – needless to tell that was very uncomfortable. Some kind of frame was also placed over my abdominal area and tied to the bed which gave me the impression i was actually tied to bed. I was also given a device so i can contact the nurses of i have issues and headphones with rock music on.

After that i was taken into the MRI room, the IV was connected to some device containing contrast dye and had to stay inside, lying on my back without moving for an hour. The only time i was taken out, was to be given an injection to calm down my guts as they were quite active and it was disturbing the image quality. That hurt very bad and it still hurts now after about three days.

I think they injected the dye only once, i didn’t feel anything. But the hardest part was being still for an hour. My back started hurting me, the air conditioning inside the MRI made my hands so cold and as much as Kurt Cobain was screaming, i still heard the MRI machine and heard it very well. I tried to close my eyes, make time go faster but i got the feeling that i was running of of breath and at one point i wanted to call the nurse but i just started to focus on my breathing and meditate (thank you pilates) so i could just get over with it. Then i noticed that keeping my eyes opened and focusing on the machine’s ceiling was much better. I tried to keep away the thoughts about the results because they gave me so much anxiety and instead think at something else.

It was an experience that i’d rather not repeat but given my situation i highly doubt so. I was though quite amazed that the tight space was not the actual problem but the standing still, needles and gel thing . With these exceptions, maybe, i can say the experience was cool in a weird way. *plays House intro*

After the procedure i was taken back to the preparation room, had my IV taken out and given some pads as that gel came out of me for about the rest of the day. I didn’t feel weird at all and continued my daily activities as if nothing happened. So in that way it was very ok.

Later on my friend texted me and she said that the way i described it to her, made it sound like i was abducted by aliens. *plays X-files intro*

Later edit: I just got the MRI results this morning and besides the cyst, which is a bit smaller than seen on the ultrasound, there is nothing suspicious. That is the best news I’ve had in a while.

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It took me a while when deciding to write this post but i finally decided for it because of two reasons: if there is anyone out there who won’t feel so alone with their pain, it’s a step forward, please know that you are not alone, and second, there is so much ignorance and taboo surrounding this issue that i can’t remain indifferent.

It all started when i was just 12, a kid basically. You know when girls get their periods and it’s celebrated like some kind of rite of passage. For, me it was nothing to celebrate. It was the beginning of a life of pain and nightmares. All my memories about it are blurred because i wanted to forget the horror, the pain, the misery.

I remember my dad picking me up from the floor, i fainted because of the pain. It was like a thousands of knives were shoved into my belly. Regular painkillers didn’t help me anymore and i had to take much stronger ones which made me sick. The bleeding was horrible. Two times i landed in the hospital with severe anemia. Instead of finding relief, i met horrible doctors. The first and last time i was to see a gynecologist, i got so humiliated and traumatized that for the next 14 years i would avoid them like plague.

I just learned to live with the pain because random doctors told me it’s normal: “That’s a woman’s life – get over it.” I was given random birth control pills by GP’s who didn’t even bother to send me for further tests as there was basically no test to determine what was wrong with me. I tried fours different brands; they all made me sick and the last one, Diane, send me directly to emergency room with severe stomach aches and vomiting. It took me three months to recover. I swore i would never take those things again.

I had to skip classes, couldn’t join sports activities anymore. The real reason was not accepted as a valid medical explanation so i usually came with medical certificates which stated: stomach disease. When i started university, sometimes, i had to go to the exams after a sleepless night. Because i was crying in pain waiting for the painkillers to kick in. Sometimes i had to leave the lectures because of too much pain or bad hemorrhage. But i passed all my exams and graduated with good grades.

Meanwhile, during my university years, i was told about a very good endocrinologist and i went to see her. I thought that this is useless, it won’t help me but i said let’s give it a try and so i made an appointment and told her the whole story. She sent me to all kinds of tests that would take about six months and lots of money. It was a private hospital. To my disappointment, the results were inconclusive. But at one of the last appointments she told me that i might have endometriosis. Unfortunately, because the tests were clear she couldn’t send to to surgery which is the best way to diagnose endometriosis. She gave me instead birth control pills and assured me that these one would be ok because of the low hormone dose.

I gave them a try although i was afraid the previous unhappy episodes will follow. They didn’t. Instead my pains were gone and everything started to be normal. For the first time in my life, i felt that a huge black veil has been taken off me. I knew what it meant life without pain and it was awesome. I went off and then on again on these meds and about two years ago i decided to just stop them. I wasn’t comfortable using hormones for so long and i thought, well, maybe my body has changed and it’s not that bad anymore. And yes, somehow it wasn’t that bad. Until six months ago.

It was the last day of March and i needed to go to the grocery store but i felt this weird pain in my lower belly. It got worse over the next days and i called the local health center. The nurse said to come immediately the next morning. I had some basic tests and the suspicions of ectopic pregnancy, appendicitis and urinary tract infection or any other infection for that matter were shut down. But the pain continued and soon i was able to function only with over the counter painkillers which were useless. During the following two months i completed my chemistry studies and went to work although the pain was present 24/7. In the end, i called a private hospital and made an appointment there.

I told my symptoms and the doctor nodded: “I can’t get anything concrete but let’s have an ultrasound”. A procedure they didn’t two months earlier. After few minutes i see the doctor frowning: “You have a 7 cm cyst on your right ovary”. At that point i froze, i saw the screen and that thing was huge. She continued saying it’s most likely an endometriosis cyst and i need surgery. She sent to the central hospital for further tests. I did have further tests including CA 125 for ovarian cancer which turned negative and i was given birth control pills again to manage the pain. The diagnosis was confirmed by a second doctor. I told her i want to wait and see how the meds are working. She said they won’t work and i also need to consider the small chance it might be malignant. She told me to stop any harsh physical activity because the cyst might burst or i might have ovarian torsion. I had to stop my dear fitness hobby and alter my life around this thing.

The meds though helped me to get my normal life back and in one month i was back to doing pilates. I did have though occasional cramps and the one time i took the 7 day break from the pills, hell broke loose. At this point i knew, i still had the cyst which was confirmed at the follow-up. So, right now i’m on the surgery waiting list, having more tests and trying to stay sane as this is my first major surgery and there are lots of scenarios passing through my mind.

So, it’s not 100% sure what it is but according to my symptoms it sounds very much like endometriosis. A disease whose cause is unknown, which doesn’t have any cure but very bad treatment options (hormones and surgery) and which affects lots of women. I think though that the hardest part is accepting it and learn to live with it although it has been there for long. Before it was a regular inconvenience that just passed but now it has a name.  Before, i had the mindset that this is normal and i should be ashamed for crying out. After 19 years, i learned that i lived with something which i should have never endured alone. This disease is still brushed aside, not taken seriously and patients face lots of judgement from both medical professionals and random people. But i’m tired of being silenced, judged and ashamed. So I decided to speak out.

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I decided to write here some of my thoughts on presents for loved ones, be it Christmas, birthdays or other occasions. My principle when buying presents is very simple: keep it simple and don’t complicate yourself. For the people I know and sometimes acquaintances I have the following rules:

  1. Keep it minimal. Buy few things but usually quality ones. I sometimes buy just one, maximum two items but I take care that the quality is very good. For example, handicrafts, handicraft shops or fairs are perfect to buy presents. The presents can be also food.
  2. Ask the person. I do that almost all the times in order to avoid buying unnecessary stuff or stuff they don’t like. The can tell me few things and I choose something from those things. Of, course it might now be a surprise but I prefer to offer them something they will really use instead of a disappointing surprise. In case you don’t know the person, money can be a very good idea. At least here, we do that quite a lot. I also received money for my birthday and I didn’t mind because it came in really handy, for example I once loaded my bus card for a month during winter.
  3. Presents don’t always have to be things. I got this idea from my friend who invited me to a cake buffet. You paid a certain sum and ate as much cake as you wanted. You could invite your friend to a restaurant, a concert, a trip, a movie etc. Experiences can make the best presents sometimes.
  4. Gift cards. Different shops have gift cards for different sums of money. This is a bit similar with money offering but it can be used only in that certain shop. It works great for people you don’t know that well and it could be for a shop with a wide profile of products so they can choose from. Gift cards saved me from situations where I was invited to different occasions by people I didn’t know very well. It is an honor that they thought of me but sometimes it can be challenging when it comes to presents.

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