Nynne: “I was diagnosed with endometriosis 13 years after my first symptoms”

About 10-20% of women of childbearing age have endometriosis. Yet we talk far too little about it. So, we decided to take a closer look at the disease. Here, Nynne describes what it is like living with endometriosis.

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wawa fertility

16. juni - 2022


Nynne, 28 years old.

Works as a nurse at a hospice.

What does living with endometriosis mean to you?

I suffer from superficial endometriosis in the abdominal cavity. This means that tissues resembling those we have inside the uterus also exist inside my stomach, around my organs and on my peritoneum. It often causes pain. The tissue can soften and create a kind of inflammatory condition and fusions. The disease is chronic and therefore cannot be cured. As long as I menstruate, endometriosis tissue will develop in the abdominal cavity. It is a very complex disease, where the emphasis is on symptomatic treatment of hormonal, painful and in particular diffuse symptoms.

How did you find out you had endometriosis?

I was diagnosed in February 2020 as the result of a laparoscopy, which I had been recommended as part of a long diagnostic process. It was just the last step to a possible clarification of all the discomfort I had been plagued by for years. I’m really glad I said yes, although it was also hugely stressful to have instruments poked about in your stomach, not knowing whether they would find any endometriosis tissue at all and, if so, how much.

I was under anaesthesia for the laparoscopy. They made an incision in my navel, where they inserted a camera into the abdomen and then three more incisions in the lower part of my abdomen and in my side, near my hips. Then they inflated my stomach with air so there was more room to manoeuvre around my stomach and around the organs.

When I woke up from my operation, I asked rather sadly: “You didn’t find anything, did you?”. But they did!

It may sound really strange to wish for a diagnosis, but for me it was a release.

It meant that I wasn’t just imagining things. The operation detected superficial endometriosis tissue on the colon, on my mesentery, on the peritoneum and on the left ovary - all something that would never have been detected in an MRI or ultrasound scan, and fortunately they could remove it all in one fell swoop.

Will you tell us about the process from symptoms to diagnosis?

I had suffered badly from constipation since I was about 12. The symptoms started around the time I also started menstruating. I felt incredibly vulnerable having constipation in my early teens, so it was something I kept to myself. I gradually began to think it was perfectly normal to have lumpy stools and there could easily go a week and a half between my bowel movements. One day I looked down into the toilet bowl and discovered that there was a lot of blood; I ran crying to my mother, who reassured me that I probably had a haemorrhoid. So, I started drinking psyllium husk powder and became more aware of my toilet habits, although the constipation continued.

My first period was unbearable and painful and I remember crying for the first few days. I was given painkillers and lay huddled in bed. I was told that it was normal to have painful periods. I also struggled a lot with lower back and abdominal pain and had an X-ray taken of my back that showed nothing that could explain my pain.

A physiotherapist told me that the lower back pain was probably due to weak muscles in my back, so I had to exercise to get rid of it. This never really helped. When I turned 16, I started taking birth control pills because I had a steady boyfriend. In retrospect, it probably alleviated my symptoms a bit, because I had some good years where I was actually not as bothered by my toilet visits, although the abdominal pain was still quite bothersome at times - even when I wasn’t menstruating.

Around the age of 20, I moved to Aarhus and got a new doctor. My constipation was getting increasingly worse and that meant haemorrhoids again, so I contacted my doctor. I wanted a diagnosis for my intestinal problems, because they were extremely debilitating at the time. But the doctor dismissed it, saying: “Many women of your age suffer from constipation. You just have to take laxatives and accept that this is how your bowel works.”

The doctor thought I had an irritable bowel, so it was a good idea to think about my diet, but otherwise I shouldn’t worry. I started drinking Movicol regularly to keep my stools soft - sometimes morning, noon and evening. At other times two sachets were enough for the night. It took another six years of all this before I dared to see the doctor again.

At the end of 2018, I stopped taking birth control pills. I wanted to feel my body’s cycle without hormone intake - little did I know! A few months later, in 2019, I had irregular periods and my stools began to alternate between diarrhoea and constipation. Going to the toilet was very painful. Occasionally I was close to fainting. I had mild fever, blood in my stools, pain during intercourse, menstrual cramps and severe headaches. I lost six kilos in a very short time. I went to the doctor and insisted on a diagnosis, because I was simply feeling so bad and was on sick leave several times a month from my new job as a nurse.

I had blood tests done to diagnose intestinal diseases and was referred for a colonoscopy, which showed that I had a healthy colon, but that it was extra long and slender. This could partly explain my intestinal problems, but not the other symptoms. However, the doctor would not do anything else at this time.

In the summer of 2019, I had such intense pain in my abdomen, especially in the right side, that I had to bend forward, I couldn’t breathe deeply or lie flat on my back. I had a high temperature and a sense of heaviness in my abdomen. So I was admitted to the Emergency Department at AUH with suspected appendicitis. They examined me, and when I explained the symptoms to the doctors and mentioned that I had irregular periods, it became clearer to them that it had nothing to do with appendicitis. I took painkillers home with me and was directly referred for an examination for endometriosis at the Department of Gynaecology. It became a major turning point for me and I am grateful for that assessment today!

I waited four months for a consultation at the Women’s Diseases department. My diagnosis consisted of a consultation, where I had an extended gynaecological examination, where they examined for cell changes and at the same time did ultrasound scans on the outside and inside of my abdomen with a vaginal ultrasound scan. They couldn’t find anything, but because all my symptoms and my whole teenage history were a so-called ‘textbook example’, I was referred for an MRI scan.

At the same time, they started me on mini pills to prevent the possible development of the disease, if I still had endometriosis. The MRI scan was done two months later, but it showed no signs of deep infiltrates in my organs. It could not detect endometriosis at all. So, the consultant was about to sign me off until I told her how bothered I still was by stomach pain, sudden diarrhoea, bleeding disorders and constipation. So, I was called in again and it was decided to perform an operation as part of the investigation, so that I would finally know for sure.

The consultant said to me: “Nynne, everything points to endometriosis - it would surprise me if you do not have it.” She said that in my case it was possible that I had superficial endometriosis in the abdominal cavity, which would explain my symptoms since puberty. She also told me that the contraceptive pills I had taken from the age of 16 could have kept the disease at bay. After I stopped taking contraceptive pills, the disease had probably developed, which is why it had suddenly become much worse.

I had surgery in February 2020 and was finally diagnosed. Thirteen years after my first symptoms!

What is life with endometriosis like for you? Are you aware of it every day?

To me, life with endometriosis can best be described in the following words: diffuse, painful, discouraging, physically and mentally stressful, chronic.

Currently, I don’t have any major problems because I am pregnant and therefore am not having periods, but since my surgery and until January 2022 I have had many alternating symptoms, such as pain when urinating, blood residue in my urine, a feeling of heaviness in my abdomen, constipation, migraine, lower back pain, unexplained free-standing blood in the abdominal cavity, pain during intercourse and huge fatigue. My type of endometriosis has caused chronic abdominal pain and it is therefore not ‘only’ related to menstruation. It hurts almost every day, but the intensity varies. However, I will say that I have learned to fill my life with a lot of good things that give me joy, and it helps me tremendously to put things into words when things are extra difficult.

Have you been through a course of treatment, surgery or anything else?

After my laparoscopy, I had a few months of rest. During the operation, I was given a hormone IUD to keep the disease at bay. Slowly I got better and I had three months where I felt a little improvement. I went to check-ups at the hospital every two months and unfortunately in the autumn of 2020 had to admit that many of the symptoms were back, so I was referred to the Endometriosis Clinic, where one of the leading specialists in the country takes care of the more complicated cases.

The discomforts were now slightly different, because I had begun to see threads of blood in my urine and at times had difficulty passing water. At the same time, I felt an intense heaviness and was just so exhausted and simply did not feel on top. The constipation had never really abated - there could be weeks where it was fine to take two sachets of Movicol every other night, but sometimes five days would pass without me going to the toilet. It was simply so uncomfortable!

I got an appointment where the consultant examined me once again with an ultrasound scan. He could not see signs of endometriosis in the bladder or intestine, which they had suspected, but he could see free-standing blood in the abdominal cavity. It was not something that required intervention, but he explained that it sometimes happens - either because of a miscarriage or because the ovary bleeds into the abdominal cavity. He therefore recommended that my body get a break from egg production and he would start me on hormone therapy that would put my body into artificial menopause.

The medicine aims to reduce the formation of the hormone oestrogen in the ovaries and inhibits the release of eggs from the ovaries. This medical treatment has some side effects that can be extremely uncomfortable, which is why I also received supplementary medicine: for example, to regulate emotional fluctuations, bad temper and hot flushes. It upset me to have to be subjected to that kind of treatment, but I was also desperate and decided to go through with it because the doctor said: “If the medicine works, it is because your symptoms are due to hormonal fluctuations and then we’ll also know that the endometriosis is still lingering in your body, despite your surgery and that way we'll know how we can still help you.”

I got my first injection in November 2020, which worked for three months. At the start of the new hormone treatment, I experienced some intense mood swings and stomach aches (which I was informed about) and I had hot flushes at night. However, after some time the side effects became tolerable and I noticed one day, after a month and a half, that I was no longer experiencing intestinal problems. It happened gradually, so I hardly noticed it and it also meant that I didn’t need to take anything like the number laxatives I had been taking. I actually cut down from taking two sachets of Movicol per evening to taking a maximum of two sachets a week. Huge success! And the pain suddenly became less. My stomach became flat and I was no longer bloated. After three months of treatment, the discomfort returned, so I decided to take one more dose. I received the treatment for six months.

I was told that it could take up to six months before the medicine was out of the body, so after six months of treatment I wanted to stop again and only continue with my hormonal IUD. We so wanted to become parents and to start ‘project baby’ soon.

How has your endometriosis affected your fertility?

Ever since I was diagnosed, I’ve been very worried about my fertility and I would be lying if I said I didn’t shed a few tears at the thought that I might have trouble getting pregnant.

Endometriosis is a hormonal disease that is so invasive in everything that makes me a woman and also the physiological preconditions for being able to get pregnant naturally. Therefore, I have also been really concerned about the future and whether my boyfriend and I could actually become parents. There have been many considerations associated with it and thoughts about when we should start, because in my situation, it would mean that I would have to be without medication, which could also potentially cause the endometriosis to flare up again and complicate the process and give me debilitating pain.

For most women, a course of treatment for endometriosis involves hormone therapy that prevents pregnancy - in other words, hormone prescriptions, such as birth control pills, a hormonal IUD or artificial menopause. Some women are so debilitated by their disease that they have frequent surgery and some even have to have a temporary ostomy bag. The disease can be so pervasive in your daily life, so having to think about pregnancy on top of all this process means you have to think carefully about it.

We made the decision to remove the hormonal IUD in September 2021. Unfortunately, the disease flared up quickly. It was painful for me and I was off work for several days. It worried me very much and quite honestly took the spark out of my life. I went to a consultation with a specialist at the Endometriosis Clinic, who told me that I would probably have to make up my mind how long I would be able to endure trying on my own, now that the disease had flared up.

Fertility treatment therefore came up for discussion a month into the process and I was already completely exhausted just by the thought of it. Several years of medical treatment, surgery, artificial menopause (not to mention mental healing), a body that did not feel like mine, really shook me to the core. I simply couldn’t get my head around the idea that my body should once again be subjected to treatment, measurements and checks. Fertility treatment is not exactly something I would wish on anyone and therefore not something I could imagine myself undergoing after several years with a sick body, now that I finally felt that the disease had become more under control.

We decided to give it a few more months before being referred for fertility treatment and I think, in retrospect, it gave my body some peace of mind. Honestly, I was pessimistic at this point, but I gave my body a chance to just stabilise without medication.

In January 2022, at an early pregnancy test, I could see two lines. I was pregnant! It was hard for my brain to embrace this amazing and very surprising news, but a little sprout had come to stay. We are going to be parents by the autumn of 2022 and we feel hugely lucky and grateful that it went so fast.

What helps you in your daily life with endometriosis?

Heating pads are worth their weight in gold - I have an electric one that I can turn up and down.

Yoga exercises and Pilates are a really comfortable way for me to move my body - the pain is often aggravated by immobility, so it helps me move. However, it’s often also necessary for me to lie down and take a rest and take the day one hour at a time.

Surrounding myself with loving and caring people who understand me - my boyfriend is my rock! I also love knitting, sewing and messing around with small creative projects. It gives me so much joy and often removes focus from the pain. And getting out into nature. Even on just a short walk, the fresh air works wonders.

Also accepting any feelings that may arise and giving myself space. I remind myself that it is perfectly acceptable to be sad, and that it is natural to have difficult days, but that those days can also easily contain small ‘crumbs’ that are worth holding onto. It can be anything from a good TV series, great food or a little knitting project, to a bird chirping or the sight of the sunset.

Stress triggers my illness and therefore I am very aware if I start getting stress symptoms, especially work-related ones. In practical terms, having the 56 clause from the municipality has helped me a lot work-wise. If I have to report sick due to endometriosis, the workplace will be reimbursed for the lost working hours. It relieves the bad conscience that is unfortunately a part of my life with illness.

What can a partner or close relative do to provide support and help in the best possible way?

I have found that good, honest communication is essential. It is important to be able to talk about the pain associated with the disease - not just the physical but also the mental pain. It can affect one’s relationship and particularly one’s sex life if the challenges are not put into words. Listen to the woman’s experiences. Offer massage, warm a heating pad and help her with practical chores, if needed. And remember the presence and all the little joys of everyday life that you can enjoy!

Speak up if you’re finding things difficult - communication cuts both ways.

What would you say to a young woman with painful periods or even the diagnosis?

Dear woman. Most importantly: You are so strong! I want you to take yourself seriously - if your symptoms are bothersome and debilitating, then it IS serious, even if others say otherwise. It is important to insist on an investigation if you have not already done so. Menstrual pain is NOT normal and you are not supposed to lie in bed desperately every month. Keep in mind that you do not have to have all the symptoms - you may have some of them - some women have the disease without noticing it, but only discover it when they have been trying to get pregnant for a long time. Whatever the outcome, remember to be kind to yourself and talk to someone about what you are experiencing so that you don’t go it alone. It can feel hugely lonely and that’s not how it should be.

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