March is Endometriosis Awareness Month
The campaign also includes sharing of personal experiences of women (patients) suffering from this disease – about its symptoms, treatment as well as its impact on the quality of the women’s lives. Although it is not obvious from the nature of this disease at first glance, endometriosis affects not only the lives of the affected women, but it also often decreases the quality of life of the entire family – whether it is the intimate relationship between the partners, frequent inability to perform even basic household chores due to intense pain or problems with conception.
Given that there is currently no ongoing official campaign focusing on endometriosis in the Czech Republic, I decided to get involved myself, at least remotely. Why? Because it bothers me that the patients themselves often know very little about the disease. Because it bothers me that only a few people in my life can show real understanding. For people around me, endometriosis is only a vague medical term that I occasionally mention. It is unclear to most people what exactly the sentence – I suffer from endometriosis – means. Because it is not a visible disease. I often hear responses like “Oh please, miss, you are so young, what could possibly be wrong with you?”
(Yeah. I have arms and legs so what could possibly be wrong with me, right.)
For these and a few other reasons, I decided to overcome the fear of the reactions of my friends, acquaintances and strangers, and share my own story about my “fight” with endometriosis, even though it will reveal a glimpse into the most private parts of my life.
Formation of endometriosis:
Currently, there is little consensus among experts regarding the cause of endometriosis. However, there are several theories of the formation, but neither of them has been fully confirmed.
In most patients, endometriosis reoccurs and modern medicine does not know how to cure it indefinitely.
What is endometriosis?
Endometriosis is a disease of the female reproductive system and its name comes from the word endometrium – the inner lining of the uterine cavity. In this disease, parts of the endometrium are located outside the uterine cavity. These parts are, for example, on the outside of the uterus, on the ovaries (frequent formation of ovarian cysts), as well as on the peritoneum, intestines – basically almost anywhere (there have been a few cases with the findings of deposits of cerebral endometriosis).
It affects approximately 1 in 10 women (worldwide). This disease causes in particular:
- Severe pain in the pelvic area, whether in relation to the menstrual cycle or not
- Pain during bowel movement (and related indigestion)
- Pain during urination
- Pain in the lumbar region
- Nausea, vomiting
- Headache (migraine)
- Pain associated with sexual activity
- Infertility and spontaneous miscarriage
Diagnosis and treatment:
The diagnosis is usually made on the basis of the above symptoms. It can be confirmed with certainty only based on a biopsy of the affected tissue. The biopsy is usually carried out during a mini-invasive surgery – laparoscopy.
The subsequent treatment is carried out in the following forms:
- Surgical removal of the deposits of endometriosis (sometimes removed already diagnostic laparoscopy)
- Using hormonal contraception
- Other hormonal therapy
- Using diet/exercise (complementary therapy, favoured mainly abroad)
- Alternative medicine
- In many cases, hysterectomy (surgical removal of the uterus)
However, concerning the determination of the correct diagnosis, we often encounter ignorance or rather laxity of doctors. The average time of the diagnosis worldwide is 6 years or longer, which is not a short time. The correct diagnosis is often preceded by a number of incorrect diagnoses.
Hysterectomy is very often performed in women (especially USA), in which it is not entirely appropriate (childless, under 30 years of age, without further complications). That way, these women irrecoverably lose the opportunity to have their own children.
At this point, I would like to proceed with my own experience with “life with endometriosis”.
Life with endometriosis
In the introduction of this article, I mentioned several reasons why I actually decided to write about my experiences. One of the most important reasons are manifestations of misunderstanding from people around me. For many people, I am just a hypochondriac who constantly keeps complaining. I make up pains that surely do not exist. Perhaps I have nothing else to do….Or also “Oh, really? But you look really great! There can’t be anything wrong with you…(or it can’t be so serious).”
Most patients with endometriosis face similar misunderstanding. It is a problem that is common to all patients whose disease does not have visible symptoms. A specific group are young people with an invisible illness, where the rate of misunderstanding is even much higher than in older people.
My real name is Kristýna and in a few months I will be 28 years old.
I am currently childless and I underwent my third laparoscopy two weeks ago. I am well aware that there are girls/women in the world who have endometriosis at a much worse stage than mine and honestly – I cannot imagine being in their place.
But still, endometriosis significantly affected my life. In English, in most articles, endometriosis is described as a life-debilitating illness and I think that this description is very accurate.
The period of 4 weeks of sick leave, which is supposed to give me enough time to recover, gave me one valuable thing – time to think. I came to the idea that the manifestations of the misunderstanding are partly even my “fault”. Because my own shyness and fear never let me sufficiently openly (or at all) talk about problems associated with endometriosis. I am not a person who would like to discuss such intimate matters (such as the menstrual cycle and sex life) in front of people around me. However, were women suffering from breast cancer not in a similar situation not too long ago? Even in this case, there had to be an extensive campaign for people to start talking about breast cancer more publicly.
It occurred to me that if I do not learn how to talk about these things openly in relation to my health condition, it will be very hard to see any understanding. And why am I actually writing all this? Because I hope that my personal confession could one day help other women suffering from endometriosis whether to overcome their shyness to talk about the disease or maybe to receive better understanding from their family, partner, friends.
From the beginning
I had my first period…well, let’s say, pretty early. I spent the first night with severe cramps on the toilet and vomiting in a bucket in front of me. I spent most of the following days in bed curled up in a ball. I was still a kid and I absolutely did not understand what was happening – this cannot be normal, can it? The following menses looked very similar until my gynaecologist prescribed my first hormonal contraception due to my major skin problems. My skin improved and most symptoms accompanying each period also improved. However, it was still not all that great and I was one of the girls who sat in the locker room in PE classes with a white-green colour in their face and suppressed an urge to vomit for at least two weeks of each month. This was going on throughout primary and secondary schools. Most PE teachers were happily forcing me to exercise even in that condition without any problems and did not hesitate to add some personal insults. Especially in the first three days of my period, I preferred staying at home and laying in bed to avoid the embarrassing trips to the bathroom all the time and the comments about how I am lazy, do not want to exercise and that I would have a fat butt (I still hate PE teachers today).
When I stayed home, it was mostly because I was not able to even crawl to get water to swallow painkillers because of the cramps. The pain was often accompanied by nausea, vomiting and high temperatures.
Sometime in secondary school, I got some courage and started to ask why it hurts so much and whether there is anything to do about it. I was given a contraception again and I was told that it should stop, pain is normal during menstruation and I should take Diclofenac. Diclofenac did not help me with the pain at all, so I went back to the “pink Smarties”. The contraception made it at least a little bit easier on me, but I could not feel the effect every time and the thing that is a usual part of a woman’s life was still preventing me from doing normal things for at least 3 days a month. However, I came to terms with the fact that this is the way it will be and I am unlucky to be one of the girls who feel sick.
Things changed a few years ago in the fall. I started to feel terrible pain in the right lower abdomen. However, I just told myself that I must have eaten something bad and I would sleep through it. I woke up a few hours later – the pain was much worse. I was almost unable to walk. I though maybe it was an appendicitis but I was afraid to call the ambulance. Instead, I opened my computer and sent a message on ICQ to my classmate from secondary school asking if he was at home and would be able to drive me to the hospital because I was feeling terribly ill. He drove me to the hospital (I am still very thankful to him). In the general emergency room at the hospital, they managed to laugh at me, ask why I was groaning so much and tell me to stop being dramatic that it could not possibly hurt so much. The consulting room was smoky (yeah, I understand, the night shift is long, right?) and after examining my abdomen and several questions regarding my pain, I was told that it was not appendicitis: “You have probably some kind of fluid in the abdomen, go to the Gynaecology Department.” If it had not been for my classmate, I probably would have never made it to the Gynaecology Department. I would have ended up lying somewhere on a road in the hospital complex because sometimes I just saw black in front of my eyes and I was losing the ability to stay on my feet.
However, at the Gynecology Department, three doctors attended to me and told me that according to the information on the ultrasound it was either an ectopic pregnancy or bleeding into the abdominal cavity. After that, I only remember two things – the horrible night that I spent in the hospital before they took me to the surgery room. The pain was escalating and each inhalation and exhalation led to incredible suffering (no, I am not exaggerating, yes, I am groaning, and yes, it is so bad). And then I remember the morning when they were taking me to surgery and the cheerful nurse tried to cheer me up with a few jokes and soothing words.
That was nice – I was beginning to really miss some humanity in that situation.
When I woke up after the surgery, I was briefly told how the surgery went and I actually do not remember any of it now. I had to wait for a detailed description, of what actually happened, until I was able to walk from the bed to the examination room. I was told that I had a cyst on the right ovary that burst in an inappropriate area so it caused bleeding in the abdomen. During laparoscopy, part of that ovary was removed because it was damaged. My first questions that followed was whether that ovary was still able to function normally.
I gradually recovered, physically. However, after a relatively short period of time after the surgery, I started having pain in the right side of the lower abdomen again. I repeatedly complained of the part and after a long time I was told it could be caused by adhesions and the solution is another laparoscopy. Of course, I was not thrilled, but at least I had hope that I could get rid of the pain. So I took another “trip” to the hospital (other than the last one). During the pre-surgery indication, I was told by the doctor that based on the symptoms (severe pain in the lower abdomen during and outside my period, and particularly the duration of menstruation that would take even 9 days despite me taking hormonal contraception) he would bet that it was endometriosis and he somewhat explained to me what approximately it was.
After the laparoscopy, I was told that in addition to adhesions, which were disrupted during the surgery, even the mentioned endometriosis was found in my abdomen. And subsequent hormonal therapy was recommended to me to prevent an early return of the endometriosis. For 3 months, I was supposed to use some kind of nasal spray (I think it was called Norethisteron). Along with that, I was taking two sets of tablets to reduce the negative manifestations accompanying hormonal therapy. I was quite openly told that this treatment could make me quite sick but if possible, I should try to make it through the 3 months.
The first week was without any problems. The second week was…weird but nothing terrible.
But from the second week on it started – migraines, nausea, urge to vomit, severe dizziness (almost to faint) and this continued until the last spray. From the second spray (i.e. the second month of the treatment), another effect started – my hair started falling out at a high rate. This effect continued even long after the treatment. But I made it through it. I was then given contraception which I was supposed to take without any breaks (without the usual breaks between individual blister packs) for half a year. Usually, after the hormonal therapy is completed, a so-called control laparoscopy is performed when the doctors look in the abdomen again to make sure that the therapy worked and that are no new deposits in the abdomen.
We discussed it with my doctor and agreed that a third laparoscopy would be probably quite hard on the body and we would try to do without it. The prospect of another surgery was really not very nice.
I felt fine for a long time after the hormonal therapy. No pain. So I though that the hormonal therapy was successful and that endo would not come back. Hm 🙂
I was not so happy a few months later. The pain came back. The same spot. The intensity was gradually increasing. I will not describe my individual hops from doctor to doctor and between hospitals (however, here I would like to thank Mr. M.K.). Only briefly – I was sent to a specialised facility by my doctor. In mid-January of this year, they examined me in the specialised facility and set the date for the ultrasound for the end of March. I was basically looking forward to going into surgery. (And to get rid of this piece of junk! And to feel good again!) However, they told me in this facility that I should also have an ultrasound examination done and the appointment was in two months. Given that my pain has been getting significantly worse since the beginning of 2015 (to the point where I often was not able to get up from a chair), the idea of spending two months just waiting for ultrasound was simply disastrous.
Eventually, I had the ultrasound examination done in my “old” hospital (where I had my second laparoscopy performed). I was told that I had “a small cyst on the right ovary and this endometriosis, the little bugger, keeps coming back, doesn’t it? So, what should we do with you?”
And so I got to the point where I am right now. I underwent my third laparoscopy (adhesions, endometriosis and sacrouterine ligaments shortened due to the endometriosis) and I really hope that this bugger…this bugger does not come back.
In this text, I did not get to – besides the initial description of the unpleasant experiences during each menstrual period – the description of other symptoms of endometriosis that significantly affected the quality of my life. Of course, it is the pain. When I started having pain after the first and the second laparoscopy – it was not just severe menstrual pain. My abdomen was hurting all the time. On some days more and on some days less. The migraines, from which I have been suffering since I was 6 years old, also came back in substantial extent. And fatigue. And depression.
At the moment, when you have been for weeks and months suffering from pain about which you are just ashamed to talk but yet it spoils every single day for you, you somehow stop enjoying most things. And even if you want, it just hurts. And it hurts a lot. Sometimes, you toss and turn in bed for two hours and look for a good position how to lie to make it hurt as little as possible. And you start walking down the steps really slowly. You stop wearing tight clothes to minimize the pain in the abdomen. You sit in a chair all crooked trying to reduce the pain. And you take painkillers (which only supports the opinion of your surroundings that you are a hypochondriac who wants to be felt sorry for by the doctors and load up on pills). And somewhere in between…your intimate life stops as well. Because sex becomes a painful experience. Something, what should be a pleasant manifestation of intimacy for the couple, becomes something feared. Along with that, you begin to feel guilty because you are not capable of something that every other woman can do. An absolutely natural thing and for you? Thank you, but I prefer not…
And then the infertility… better not to think about it. I thought about it every day. What if I cannot get pregnant? What if it is too late now? Concerns about the future possibility of conception are one of the most stressful factors of the entire disease.
I do not think I can count the nights that I cried in despair hoping that this pain would miraculously go away and everything would be good. Depression goes hand in hand with chronic pain lasting nearly several years. A few months ago, in one moment, the feeling of frustration also started to take on the form of anger. From the moment, when I was told in the office by my supervisor something like: “Do you know what your problem might be? You never smile and therefore you should not wonder why people do not want to help you. You have to look joyful, go to work positively charged and smile!” This well-intentioned advice fell on fertile ground but other than expected. At that moment, it just passed through my head that I would like to see her smiling ear to ear with pain 24/7 for several years in a row.
Like most people, I always had many different wishes – more or less real. Eventually, they formed into only one wish – to be healthy. Here, I would like to thank my loving partner M. again who supports me, tries to understand me and since the pain came back he has been assuring me that everything would be okay and we would get through everything together.
I still realize that there are women in the world whose suffering is much greater than mine. They spent weeks lying in bed and because of the pain they are not able to attend to their children, do any household chores, etc. This is only one of the moments when “life with endometriosis”does not affect only the patient herself but also her loved ones – husband, children…There are numerous couples who are trying to conceive despite endometriosis. Given the absence of a definitive treatment of endometriosis, there are many women who have undergone the same surgery, which I have undergone three times, even 7 or 10 times.
There is one more wish I have – for the sharing of my experience to make a difference. Maybe overcoming the shame to talk about one’s problems with the doctors, loved ones, partner… And for the patients not to be afraid to demand respect and proper examination, diagnosis from their doctor and not to be happy with “menstruation hurts, that is normal” and “take something for the pain” like me for many years. And perhaps not to be afraid to call an ambulance…
Links:
http://www.endometrioza.cz/
https://www.facebook.com/endometrioza/timeline
http://www.endofound.org/endometriosis
http://en.wikipedia.org/wiki/Endometriosis
http://endometriosis.org/
https://medtube.net/tribune/endometriosis-migraines-bad-sister/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3165129/
https://www.psychologytoday.com/blog/turning-straw-gold/201109/the-challenges-living-invisible-pain-or-illness
https://www.psychologytoday.com/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness
http://www.endomarch.org/
silver snowflake 