Pain that prevents you from living normally – my story of surgery and fighting endometriosis

It has hurt for as long as I can remember

The devastating pain started when I was a teenager. Fortunately, my understanding mother let me stay at home: she gave me a hot compress to ease the cramps, a large dose of painkillers (which didn't always work) and said that all the women in the family had it and that it went away after giving birth. Incidentally, pregnancy and childbirth grew in my mind into a magical remedy for this terrible pain during menstruation. Quite a... radical method of treatment, right? 😅

Over the next few years, things got better and worse. Unfortunately, no gynecologist I had the opportunity to see was able to find the cause of the pain, let alone completely eliminate it. I had heard that periods have to hurt and that it was my nature. Treatment consisted of taking birth control pills. I resorted to increasingly stronger prescription drugs and did whatever I could to be able to function normally and quickly return to life. Irregular periods and stress at work certainly didn't help, and it's worth mentioning that periods were always a taboo subject among my superiors. Explaining yet another "indisposition" was terribly embarrassing for me and presented me as a terrible employee. Either I was bent over, dying, stuffed with harsh medications that were carefully stored in other women's drawers in the office, or I took time off from work every now and then or switched to remote work, which was not as welcome as it used to be during the pandemic.

Getting to the diagnosis

Just before I turned thirty, the pain began to intensify: it intensified not only on the first two days of my period, but also a few days before and duringovulation . I don't know at what point I took Agnieszka Chylińska's words to heart and said enough is enough , but I know that I finally decided to find the source of my suffering and to this end I began a proper research on the Internet. At first, this disease did not fit me at all: among the symptoms, they listed not only painful but also heavy bleeding, and my period was always ridiculously scanty and lasted three to four days. In addition, they mentioned pain during sex or urination - but I didn't have any of that! It was only after some time that I connected the dots. The terrible pain in the lower back and daily bloating did not have to be the result of many hours of work in front of the computer and an incorrect diet. It could also be this mythical endometriosis. However, I did not want to play doctor Google and make a diagnosis myself. If you want to find out at this stage what this disease is and how endometriosis is diagnosed, treated and operated on, be sure to read this article .

In my search for a diagnosis, I first went to a doctor (as part of a private health plan) who does not deal strictly with endometriosis, but has experience in treating "non-pregnancy" diseases. He was the one who did the tests and detected the first changes in me: an endometriosis focus, or an endometrial cyst, also known as a chocolate cyst, on my ovary. I was referred to hospital for a laparoscopy, during which the cyst would be removed. That's when I thought it would be worth doing more research and getting a second opinion from a doctor who specializes in this disease.

The cyst is the tip of the iceberg

The visit to the endometriosis doctor was quite a shock for me. After a very detailed ultrasound, I learned that endometriosis foci are located not only on the ovary, but also in other places in the abdominal cavity: on the peritoneum, the uterine wall and the sacrouterine ligaments . I also heard that the beginnings of the disease foci can be seen inside the muscular membrane of the uterus, which has another, foreign-sounding name: adenomyosis. Then the doctor explained to me in detail what treatment we can introduce, what laparoscopy for endometriosis involves, what its risks are and whether it is possible to cure this disease at all.

First of all: endometriosis is a lifelong disease . Laparoscopy allows for the removal of adhesions and foci, but does not allow for complete recovery. However, it can significantly relieve pain. Diagnosing the disease itself is difficult, because tests usually do not show everything that is happening in the pelvic area. Some people decide to undergo exploratory procedures, i.e. diagnostic laparoscopy, but it is not recommended, as it is still quite a serious interference with the abdominal wall.

The joy of diagnosis

Here I must point out that although all this information was terrifying, after the visit I felt exceptional relief. Finally, after so many years of struggle, I received a diagnosis! Finally, someone took me seriously, did not laugh at me, did not consider painful periods as something I had to carry through life like a cross on my shoulders. Finally, a treatment plan was created and I understood the scale of the problem, which now I simply had to face.

Preparing for Endometriosis Surgery

Since the doctor specializing in endometriosis is part of the team at the private hospital, I decided to have the procedure done there. Of course, the operation can be performed on the National Health Fund, but there are few specialists who can handle more difficult cases. Many people complain that only a few endometriosis foci were removed, and the more serious ones (such as the bladder, peritoneum or intestines) were left; some, even after the operation on the National Health Fund, do not know how advanced their endometriosis is and what was removed. And although there is no point in generalizing and complaining about public health care, where there are some gems, private health care does come to the rescue.

The price of surgery in a private hospital specializing in the treatment of endometriosis varies depending on the hospital and the extent of the disease: I have heard of amounts of around PLN 15,000, but also PLN 50,000 . People who cannot afford this type of expense start online fundraising or take out loans to finance the surgery. However, surgery in a private clinic is often not just a whim, but a necessity - for example in the case of deeply infiltrating endometriosis. Some patients, after unsuccessful surgeries on the National Health Fund, decide on a more professional, comprehensive approach to laparoscopy in hospitals in Warsaw, Wrocław or Dortmund. You can learn a lot about the disease, recommended specialists, the course of the procedure, surgeries on the National Health Fund and in private hospitals from the Facebook group: Endometriosis - how to live with it?. I highly recommend it to anyone looking for answers to their questions.

What does endometriosis surgery look like?

In the case of surgical treatment of endometriosis, the most frequently chosen procedure is abdominal laparoscopy . It involves the excision of all endometrial lesions and adhesions of internal organs located in the pelvis.

Before the surgery, you need to do some qualifying tests: extended blood tests or an interview with an anesthesiologist. After sorting out all the bureaucracy and paperwork, I was ready for the procedure. I was admitted to the hospital the day before the surgery. I couldn't eat for a dozen or so hours, they also gave me an enema and... I waited until the source of my problems finally diminished a little.

In my case, the laparoscopy was quite quick, about three to four hours, but that was because I didn't have heavy bleeding during it. Importantly, it was only during the abdominal laparoscopy that it turned out that the endometriosis was more serious than we thought . The disease had already attacked the intestines, the wall of the rectum and the peritoneum, a new cyst appeared on the other ovary, and the changes on the ligaments were already strong and deeply infiltrating, which means that the tissues of the organ had been deeply penetrated and destroyed.

I know that many people with a uterus also have endometriosis foci on the walls of their bladder, colon, or in the scar from a cesarean section. Endometriosis can attack many organs and cause real havoc in normal functioning.

A first-class patient

After the procedure, the nurses made an unsuccessful attempt to get me back on my feet. My attending physician had mentioned that I would be encouraged to stand up a few hours after the laparoscopy: standing up reduces the risk of adhesions, so you have to force yourself to do it , although it is not easy. The only thing I did not expect was the overwhelming pain in the shoulder area, which no medication had any effect on! It turned out that this was due to the injection of carbon dioxide into the abdominal cavity during the procedure, so that the surgeons could more easily reach all the organs. And since the body position during the procedure is head down, the carbon dioxide migrates up the body, causing a strange pain, and then disappears after a few days.

I remember the hospital stay, the team of nurses and doctors, and even the food very fondly. Although visits were unfortunately impossible due to the pandemic, and because of the larger scope of the procedure I had to stay there longer than expected, the time passed quickly.

Back to life

Everyone recovers at different times after endometriosis surgery. Some people function normally after 7 days, others return to full activity after 20 days. In my case, the first days after the surgery were hard and if it weren't for the help of my loved ones or delicious, easily digestible dinners from my mother, it would have been much harder for me. I mainly lay down and occasionally got up to prevent adhesions. I couldn't sit. I tried walking, if that's what you can call moving very slowly around the block, which tired me out more than a 60-kilometer bike trip. In the meantime, I washed the wounds with octenisept and overcame the fear of sticking a needle in my stomach - I had to take anticoagulants, and here my mother's capable hand didn't want to help 😉 The entire recovery after endometriosis surgery lasted about a month in my case. Then I also had a check-up with the doctor, during which he checked if everything had healed nicely inside, and I was officially given permission to... start having sex ;) Since then, I've only managed to have sex once and I'm glad that my internal organs are ready - now it's time to prepare my head more and give in to pleasures.

After the procedure, I attend manual therapy with a physiotherapist, but an osteopath or urophysiologist is also useful, who help reduce adhesions in the abdominal wall and massage scars after the surgery. Although I am almost 2 months after the procedure, one wound has not yet healed completely and I feel that I can expect a large scar there.

What's Next? Me vs. Endometriosis

Endometriosis will be with me my whole life and there is currently no cure for it, so I am prepared for the pain to return – whether in a few or a dozen years . I may have to decide on further surgeries. At the moment, endometriosis requires me to change my daily functioning: a well-chosen, anti-inflammatory diet, daily exercise and taking hormonal medications for the next few years. And although I am able to reduce the risk of the disease recurring, I do not know when it will attack again. However, I would like to raise awareness about endometriosis and I believe that we should not only normalize talking about painful periods, but also educate others about the existence of this disease – after all, periods should not hurt so much !