First of all, I am sorry for all the spelling mistakes etc. in this story.
To start with I need to make it clear that this is ONLY my story, and that there are many women out there that have it much worse than me. On a day to day basis I can function in a job without any sick days because I am on the pill at a minimum of three months straight before I have my period. I chose this together with my doctor because we found out that by doing this I could have a full time job (37 hours), or I could go to school without any pain, since the pill, and sometimes pain medication, keep my endometriosis pains away. This is my story of how my road from no diagnosis to a endometriosis diagnosis was, and I need you all to know that I consider my case a mild case of endometriosis because there are many women around the world who have their pain a lot more often than me, and this disease needs to be more known among doctors, so the women do not have to go as long as I did before they get their diagnosis.
Since March is endometriosis awareness month I have decided to finally tell my store about my "disease". There are not many people who know the whole story, or even know I have this diagnosis, simply because I hate telling them everything because of the damn pity that shines through their eyes. I also hate trying to explain to them what it is about. Many do not understand my pain and believes that it is me who is overreacting, and this is a big reason why I do not tell anyone about it. My family, my boyfriends family and a select few of my friends know my story, and it is because of this that it has taken me so long to share my story. But maybe my story can help another girl who suffers from endometriosis and maybe get her to seek out a good doctor to get a diagnosis or to at least get her pain checked out. Maybe she does not have endometriosis, maybe she has something different or maybe she just suffers from regular pain during her period, who knows?
I can not tell you how it began because honestly I do not remember the precise year, but what I DO remember is that I have had my pain since I began my period, which started around the age of 12 if I remember correctly. For the first couple of years I thought that my pain was natural, but because it constantly made me exhausted I ended up visiting my doctor for help. All he said was that the pain was natural and I could always take some head ache pills (which of course did not help me with the pain). I began with those pills and started to live with the pain and soon realized that I just had to live with being exhausted around my period and sometimes other days of the month.
I began to live with the thought of thinking before I just said yes to hanging out with friends because I KNEW that if it were around that time of the month I could not cope with noise or many people in my head. I just had to have some peace and quite and be able to relax and not be bothered too much.
What I recall is that my family always supported me. Of course my mother could not understand my pain either but since my doctor told us that it was normal pain and he could not do anything about it, then we did not do much more about it. I finally turned 18 and moved out and also got a new doctor so I did not have to travel 25 km to visit my doctor. Instead I got a doctor in the new town I lived in. I complained to him about my pains and he gave me some stronger pills but that was the end of it once again. I began to stay home sometimes through both public school and high school because I could not cope with anything other than just being home and do nothing.
When I graduated high school I was 21 years old and had a boyfriend who lived close to 300km from me so I decided to move down to where he lived, since I was already going to move out of town because of the education I chose. Of course this resulted yet again in a change of doctors, which I could not be more happy about because now things started to happen.
I was happy with my boyfriend but it did not take long before things began to be hard for me. I started experiencing pain during intercourse (this had happened to me nearly everytime I had sex before this but I did not think much about it). I started thinking that maybe it was not just because of the size of the man but maybe something completely different. I started thinking about cancer and everything else that could be wrong in my abdomen. My mother had much of her abdomen removed and I knew about this, so I started thinking that maybe something was wrong with mine too, and I visited my new doctor and told him about the pain during sex. He instantly started asking me all kinds of questions and one of them was if I experienced pain during my period. I was now about 21-22 years old.
My doctor told me that he had a feeling that I could be suffering from endometriosis and asked me if I knew about it. Of course I did not know anything about it, and he told me a little bit about it and referred me to the hospital where they would be doing a scan of my abdomen to see if there was any endometriosis. He then told me that if I wanted to have any children now would be the time because statistics showed that from the age of 25 and up it would become more hard to conceive. I have never had a specific wish to have children but since I now had a boyfriend, whom I had been with for 5 years I now had to talk with him because he needed to find out if he wanted to be with me and risk the chance of not getting children or part with me because he wanted children. There could always be a chance of me changing my mind about not having children therefore I felt that I needed to talk with him about it even though he knew children were not something I wanted.
The day came where I went and they scanned me, but they could not see anything and I instantly thought that I was set back to square one. Instead they told me that sometimes there could be endometriosis even though it could not be seen on a scan and they told me that they could go forth with a laparoscopy and asked me if it was something I would consider. Of course I said yes because I needed to find out where all my pain came from and I had now had this for over 10 years without anyone doing anything to help me.
I got the laparoscopy and there the doctors found endometriosis. They had removed the endometriosis and some cysts that had been in my abdomen, but they also told me that it would most likely return (but I knew this already because I was told this before I accepted the operation). The pain became better and could be held down with strong pills. When the final diagnosis came and I had a name for my pain I was 25 years old and had been living with my pain for the half part of my life. I do not with this for anyone else. It was hell to live with the pain and not knowing if it was me who were overreacting or if I had a disease I did not know about.
Even though this was a disease and they removed the endometriosis I was way beyond happy and thrilled to have this disease. Do not get me wrong, I quite often (nearly always) absolutely HATE this disease but now I had a name for my pain, I knew what could be done and what was ahead of me. Since I got my diagnosis I have been happy and peace in my mind, because I no longer live in the unknown. I have a disease but I am so much more than my diagnosis. There are days where I have to stay in bed because the pain is too much and I can not do anything but curl in to a fetus position, but then there are the happier days where I do not have any pain and I can make all the plans with my friends that I want.
During the time where the doctors tried to find out what was wrong with me I had a work. I worked 37 hours a week, often more, but occasionally I called in sick (during my period). It needs to be said that I only have my period every third month, sometimes even less, because when I am on the pill I do not experience so much pain, that I can not function at work. My boss often laughed at me when I called in sick, which I found very humiliating because it was not something I chose, but I knew that if I ended up at work I would not be worth much because of the pain. This resulted in me showing up to work even though I was in severe pain with a boss who did not understand me, thought I was lying and tried to lie to me and tell me that it was not because of me calling in sick that he was laughing but because his girlfriend was there when i did. This I know is not true because it happened nearly every time I called in sick. These experiences was horrific to me because I felt I HAD TO show up at work even though I was in severe pain, and had a boss who did not give a shit.
I am truly happy with my life, even though I am 31 and do not have any children. I love my boyfriend and I believe that we can still be happy without children. My point on having children have not changed, so maybe someone will say that I am lucky I do not want them so I do not experience the loss and grief of not being able to conceive, but that is just not true. I also live with the thought that IF I DO change my mind the next year or two then my chances are VERY slim and that is not a happy thought to have. I choose to live my life and not think about that too much. I can always get a dog :) Which I truly want and I will get that dog one day :-D But to end it all on a happy note, I try to live my life to the fullest so I will not have any regrets when it is over.
This post became a lot longer than I thought it would but I hope some of you read it all the way through and I hope my story can help some of you who suffers from pain. Just remember that your life moves on and you do not have to let the diagnosis control your life. You have to try to live your own life even though it can be truly hard sometimes.
ENDOMETRIOSIS:
It is said that 4-7 % of all women have this illness. The diagnose is very hard to make. It is a serious illness that can lead to infertility and can cause great pain before/during/after menstruation. Here is some of the symptoms of Endo (taken from endo.org):
Pain may be felt:
- before/during/after menstruation
- during ovulation
- in the bowel during menstruation
- when passing urine
- during or after sexual intercourse
- in the lower back region
- Other symptoms may include:
- diarrhoea or constipation (in particular in connection with menstruation)
- abdominal bloating (in particular in connection with menstruation)
- heavy or irregular bleeding
- fatigue
The other well known symptom associated with endometriosis is infertility. It is estimated that 30-40% of women with endometriosis are subfertile
