Endometriosis – patient stories

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Read the stories of women who have experienced this disease

My name is Anna, I am 38 years old and I am the mother of two fantastic sixteen-year-old guys. I have been suffering from endometriosis for over a dozen years and since I can remember I have always had painful periods. The pains were very strong, sometimes they ended with a visit to the emergency room with various suspicions (e.g. appendicitis), but no one came up with the idea to diagnose it as endometriosis.

And so years passed, I suffered, but I believed that this was my beauty (hmmm, how many were told?). Then a miracle happened, I gave birth to beautiful, healthy boys. The delivery was by caesarean section and this was the moment when my illness gained momentum as the caesarean section spread the endometrium. But still unaware of it, I enjoyed motherhood forgetting my pain.

And so, after a few years, one day I felt a lump at the level of the navel and, thinking that it was a hernia caused by lifting a weight, I went to the doctor…. and diagnosis “endometriosis”. What’s this? How? But why? How to heal?

The tumor was the size of a walnut and I was referred to the hospital for laparoscopic removal. Of course, it must always be uphill, so as a rule, a simple laparoscopy turned into a more serious procedure, because what was supposed to be just a tumor – a peanut turned out to be the tip of a mountain, the tumor grew deeper into the abdominal lobes.

After two weeks, I left the hospital armed with Danazol, but happy that I made it. Unfortunately, after a year of treatment and a year of relative peace, another attack of the disease, another laparoscopy and another use of hormonal drugs. Again, a brief period of peace. And imagine already ill, I got a second pregnancy. What a joy it was, because it’s a girl, dreams, plans, joy, I’ve already seen these braids, dresses …… and some May came and my dreams shattered into thousands of pieces, along with my heart and soul. My little girl was born too early and did not survive…. Despair, but I had to come back to life, two children at home were waiting for me, I had to pull myself together….

Months passed, followed by painful days, weeks and another laparoscopy, which detected a tumor on the intestines. Suspicion of endometriosis, but because it was the intestine, it was necessary to make sure, so further tests, unpleasant colonoscopy, tomography, etc. The pain was unbearable. Decision – surgery in which part of my rectum was removed. After leaving the hospital and recovering, I was hopeful that this was the end of my trips, but I couldn’t be more wrong. It still hurt and more unpleasant examinations, more treatment attempts, more stays in the hospital, ufff how much can you?

It turns out that it is possible, I learned to live with the disease, with pain, I learned to tolerate it, although sometimes I lack strength, but I need the support of my close friends and their awareness of the disease. Therefore, it is worth developing this awareness, it is worth talking about the disease and its impact on the quality of life, not only of sick women themselves, but also their relatives and their environment. I was lucky and understanding. I also met a group of fantastic women, also suffering from endometriosis, who work to raise awareness about the disease and give a lot of support because you know that you are not alone with the problem.

Anna Leśnik.

Agnieszka’s story

I was 28 years old, in March 2008 I did not have my period. I was a little worried, but I didn’t care yet. It was such a bit of a hectic time in my life and I thought it was temporary. Even for a moment I thought it might be a pregnancy. It was only when the next period did not come that I went to the doctor. About 14 months have passed since my last visit, because I always tried to do pap smear tests once a year. During the examination, the doctor ruled out pregnancy and gave me a referral for an ultrasound examination, as she suspected a cyst on the ovary. The study confirmed the guesswork, twice. The cyst on one ovary was 8 cm, on the other a little less.

It didn’t look good so I got a referral to test the Ca-125 marker. It was the first time that I got a bit nervous, because I already knew that their elevated condition could be a cancer. Fortunately, it turned out to be just – as I thought then – endometriosis. The doctor reassured me that they would make three small holes in my stomach, cut out the cysts and it would be over. Reassured, I signed up for surgery.

I’d never heard of endometriosis before, but when I heard the diagnosis, I started to analyze my body signals more, especially during my period. As I learned more about this disease, I realized that I had downplayed many of the symptoms, thinking it was normal. I even talked to my friends before about various symptoms and I heard that they have it too, so I have never perceived these ailments as dangerous or strange. Since I never had to take painkillers due to my period, and other friends could not function without them, it would never have occurred to me that something was wrong and should be told to the doctor during the visit. Menstruation did not adversely affect my functioning, I was convinced that such feelings are natural and that’s just the way it is. Until now, I wonder if it was because I have a high pain threshold, if it was endometriosis that developed so insidiously.

I patiently waited for the scheduled date of the operation, I was glad that the diagnosis was made within a few months, I heard that other women sometimes suffer terribly for several years and doctors send them from one specialist to another, and none of them can make an accurate diagnosis and treat them for various other diseases: stomach, liver, ovarian ailments.

One June morning, however, it turned out that I had very severe pain in my lower abdomen. I’ve never experienced one like this before, so I knew something was wrong and I can’t leave it. After a telephone conversation with the doctor, I decided to go to the hospital emergency room. I did the right thing, it turned out that my blood pressure was very low 70/40.

Since the pain was on the right side, I had to have the appendix removed, only when I mentioned the cysts it was considered a twisting of the cyst. I was given painkillers and diastolic drugs and it was found out that my condition was good enough to wait until the morning for the surgery.

It turned out that this was not the case.

The next morning, during the operation, it turned out that I had a ruptured cyst and all of my organs had grown very firmly together. I needed a classic operation by dissecting the abdomen, there was one big cocoon inside me and laparoscopically it was impossible to do anything. The operation was complicated and took quite a long time. My right fallopian tube and ovary were removed, and a cyst was enucleated from the left ovary. Many adhesions were released. The peritoneum was cleaned. It also turned out that I was in danger of a temporary stoma because my intestines were badly affected. Fortunately, it was possible to sew the sigmoid on a length of 10 cm and it was not necessary to create an artificial anus.

1. See also: Living with a stoma

I woke up after the operation and was terrified: I had a mask on my face and I was connected to a mass of tubes, drips, catheter, drain, and I don’t know what yet. I did not know that it was such a serious operation, because I only expected laparoscopy and those 3 tiny holes in the abdomen … The stay in the hospital lasted 10 days. After the surgery, I felt really good. Histopathological examination confirmed that it was endometriosis. I already knew that this disease could come back. I had an obstructed remaining fallopian tube. After long reflection, I made a decision that I would not try to have a child and all I want to do is live with this disease so that it does not take away the joy of life. I started treatment with a series of injections, repeating ultrasound examinations every month and monitoring the situation. I was sure we had the disease under control. Unfortunately, after the end of the therapy and after 2-3 menstruation, it turned out that I have an 8 cm cyst on my ovary again. I made an appointment with the doctors for another operation and in July, i.e. 13 months after the first operation, almost the entire left ovary with the fallopian tube was removed. At 29, I was left with an ovarian hypha.

And this time it was not without surprises. The situation was serious because I had very strong adhesions with the vascularization of my left leg. However, I found a wonderful team of surgeons who bravely fought for me to live a normal and efficient life.

Almost three years have passed since then. He feels very well, continues to be monitored regularly. I am taking HRT (Hormone Replacement Therapy) because the ovarian hypha that I have left has stopped producing the hormones I need. I am glad that I am still here, I stopped worrying about the little things and I enjoy every day because life is so delicate and it can end unexpectedly. It’s a waste of time to worry.

I am 32 years old, I am menopausal, yet I feel like a happy woman.

Monika’s story

The first symptoms of endometriosis appeared in 2001. One afternoon, after a fairly intensive mowing of the grass on the plot, I felt a stomach ache on the right side. After visiting the gynecologist, it turned out that the cyst had formed, then (after pharmacological treatment) the cyst was absorbed.

For several years I did not have any disturbing symptoms, apart from the increasing pain during menstruation. Since I was taking birth control pills at that time, I tried to “target” the weekend period so that I would not have to take time off at work. I went to the gynecologist regularly, I had an ultrasound at least once a year, everything was fine.

In 2009, my partner and I decided that we would like to have children, I stopped taking the pills, but I was unable to get pregnant. We decided to use the help of a renowned infertility treatment clinic in Warsaw. We’ve done a lot of costly studies that show we’re basically healthy. During the ultrasound, “only” a cyst appeared on the right ovary, but it disappeared after lutein was applied. I drew the doctor’s attention to very painful periods, but she was not particularly interested in it.

In October 2009, there was a sudden twist. I was back in a follow-up ultrasound which showed that another cyst had just disappeared. Four days later, my stomach suddenly hurt on the right side. We drove to the nearest hospital. There, I was examined by a surgeon, basic blood tests were performed and I was referred for consultation to a gynecologist. During the gynecological examination, I told my story, I focused on the fact that I did have a cyst, but it was already absorbed. The ultrasound examination was not very clear, so I returned to the surgical ward, where I was supposed to have the appendix removed. It was my first hospital visit as a patient and I was terrified. In the morning I went to the operating room, there I undressed and lay down on the table, my terror was getting bigger and bigger. Then I fell asleep …

I was awakened by the doctor who had examined me in gynecology the previous night and said that I was in the gynecology department because my ruptured right ovarian cyst had been removed. When I heard about it, I started to cry terribly, which, unfortunately, is not the best idea after the surgery, so I asked something to calm me down. I was hysterically hysterical for three days when I saw the doctor. It was impossible to talk to me normally. After a few days, I started to calm down, I also managed to look at my stomach – it looked terrible, the scar from the appendix that remained in place, and the other one like after a caesarean section. I also found that it is worth finding out what actually happened to me, after all, I was healthy. In a conversation with the head physician, I found out that I had endometriosis and the adhesions in my abdomen looked “like after ten operations”.

After leaving the hospital, I was on sick leave for a month. The result of the histopathological examination was rather obvious – endometriosis. I read a bit about the disease on the Internet. I was even more scared. I had no idea who to go to for help. During one of the visits to the gynecologist, I was informed to report to a doctor who deals with such matters. It took more than 2 months to make an appointment, but I did it. At the first visit, I was immediately referred to the hospital for another operation, as I learned “in order to clean up after the previous operation”.

In March 2010, about three weeks before the planned surgery, my period began, obviously painful, on the third day it was so bad that I couldn’t sleep (and I don’t have any problems with that). It was Saturday at 5am when the pain became unbearable, I asked my partner to drive me to the hospital. During the examination, I almost jumped into the chair, my stomach ached so badly. I was accepted. I lay as white as a wall connected to an antibiotic drip. Research began on Monday. During the ultrasound it turned out that there was something in the bladder, in addition, the results of the markers were very bad – the doctor suspected that it might be cancer (he did not say it directly, but after the words that with endometriosis it is 100, and I have over 500, I checked on the Internet for what purpose such research is done). I cried all night, thought about my will. Then there were more examinations, magnetic resonance imaging and cystoscopy (a piece of a tumor was taken from the bladder to see what it was). Luckily for me, the results were pretty quick – it was “just” endometriosis. After 10 days, I left the hospital, and in three weeks I was supposed to be back for surgery.

I’m back. During the qualification for surgery, I learned that there is a possibility that I will have an artificial anus, my reaction was not difficult to predict, I signed the consent to the operation with tears in my eyes.

During the operation, cysts were removed from the right and left ovaries and a tumor from the bladder was removed. The day before Easter, I left the hospital with a little extra – I had a catheter in my bladder for two weeks. I was on a month-long vacation again. I was given drugs to induce menopause, the doctor warned me that I would feel terrible. It wasn’t that bad, but the first flush of heat surprised me a bit.

After the medications, I was supposed to visit the infertility clinic, because according to my doctor, I absolutely should get pregnant, but the only way to do that was in vitro. I decided to try, the first attempt was unsuccessful. I was through it a lot, I was unable to recover for two weeks. After the failed attempt, the cysts began to appear again. For starters, I got birth control, it didn’t help, so we repeated the menopausal drugs again – this time I felt really terrible, it all hurt like I had the flu.

The cysts did not disappear, but they decreased so much that I could make a second IVF attempt, which was unsuccessful again. Stress and depression again. I was slowly learning to live with the disease, I found the Polish Endometriosis Association on the Internet and signed up. I met girls like me, who had a history but with a positive outlook on life.

The cysts were still there, and the attending physician decided to perform another – third operation in two years. It scared me a bit, so I consulted it with another doctor, but he, too, said after having an ultrasound, that surgery would be necessary.

This time, almost immediately after the surgery, I was supposed to consult on another IVF. I was admitted to the hospital on the scheduled date. The operation was quite long, I felt great when I woke up. In the recovery room, I found out that I had too many tubes. I asked the doctor what was actually cut out of me. This time, in addition to the cysts from the right and left ovaries, the appendix and a piece of the intestine were excised. So the black scenario has come true. I went home with my stoma, it healed after about 2 weeks.

When I came to my senses, we tried IVF for the third time. The test was performed the day before Christmas Eve, unfortunately it was not possible. I didn’t want to see anyone on Christmas.

Now I am taking medication for endometriosis again, I feel tolerable, but I have a headache quite often. I am planning another IVF.

Monika Braniewska

My name is Ania and I am 25 years old. It started when the pains that I always had during my period started to extend to other days (beginning of 2008). First 3 days before menstruation, then a week and two weeks before…. Now it is so that in a month I have 4 days pain free. The pain grew longer and stronger. I went to the gynecologist who said that everything was fine. So I went to the family doctor who did some basic research for me and also said that everything was fine. And I was still suffering, I fell asleep in a bathtub with warm water because it brought relief, and I couldn’t sleep because of the pain, I didn’t function properly … After some time I went back to my family home, because no painkillers or diastolic medications helped anymore. The doctor asked me directly. Are you sure you are in pain? I was shocked. I was sent to the gynecologist who said again that everything was fine. So I changed my family doctor. She took care of me. She said I might have irritable bowel syndrome or polycystic ovaries, but as I had already consulted my gynecologist, I was referred to a gastroenterologist. The gastroenterologist tried to look for a solution under stress, but the other doctor gave me a referral for a colonoscopy. The test went well, but I only know how much I suffered. However, Mrs. Dr. said that there is such a disease, endometriosis and everything fits her, but she cannot diagnose her because she is not a gynecologist. I returned to my family, who said it was very possible and that I should visit the gynecologist again (end of 2010).

The doctor was very annoyed that someone was questioning his competence, but he said I will give you hormonal drugs – contraception, if the pains decrease, we are actually dealing with endometriosis, if not – it means that I was right and gynecologically you are fine . The tablets worked. The doctor diagnosed endometriosis, but only six months later. He was at a symposium and finally got some knowledge of the disease, then he understood. However, if every gynecologist knew as much about endometriosis as needed, there would be no situations like mine. If I had known about the existence of this disease in advance, I would have been able to push him towards it, but I didn’t even know there was such a disease. Now I have endometriosis not only in the reproductive organs but also in the intestines. Maybe if I was diagnosed earlier… Therefore, the awareness of endometriosis must increase, so that women who have been suffering for years would know what is wrong with them, and could at least try to alleviate the symptoms of this chronic disease. – Anna Mieńko