1. What were the first symptoms you had before you knew you had endometriosis? That is, what was it that made you decide to go to the doctor? At what age did these symptoms begin?
“The first symptoms I had were incapacitating pain, I remember getting into a fetal position because of the pain. Another symptom I had was irregular periods with heavy bleeding. In fact, I could have my period several times a month.
Those first symptoms appeared when I was 12 years old, the pain was so great that sometimes my mother had to come and pick me up from school.
Because of all this, we decided to see a specialist.”
2. What was the process of diagnosing endometriosis? Would you know approximately how long it took the specialist to decide that you had endometriosis from the first symptoms?
“When I went to the gynaecologist they did a series of tests and saw that I had many cysts, the size of a tangerine. They performed a biopsy of these cysts and the doctor concluded that it was endometriotic tissue. That is when I was diagnosed with endometriosis.
The whole diagnostic process took about 2 – 3 months private health care, during which time I had many visits. From the first symptoms it was maybe 6 months, so it was relatively quick.”
3. What treatment did your doctor prescribe for your endometriosis? Was it the definitive treatment or did you have to change until you found the one that most relieved your symptoms?
“The gynaecologist told me that an effective treatment is the IUD, which helps with the pain of endometriosis. They tried to put the IUD in up to 8 times and it was not possible in my case. So I was prescribed oral contraceptives, along with painkillers. I am allergic to NSAIDs so I was prescribed painkillers that were not NSAIDs.
With oral contraceptives the cysts decreased in size, but after a while they had to stop the treatment because I was at risk of cardiovascular accident, because of family history and because I had migraines with aura. So for a long time my only treatment has been painkillers.
I was never operated on for the cysts.”
4. Have the endometriosis-related symptoms you had in the past evolved in any way from those you may feel now?
“The short answer is yes. As a teenager I had very severe pain that improved with oral contraceptives. When I took off the contraceptives because of the cardiovascular risk the symptoms got worse again. Then when I got pregnant my symptoms improved a lot. I have had two pregnancies and during both pregnancies I did not notice any endometriosis pain.
Years after giving birth the symptoms reappeared, I again have irregular and very heavy periods and stomach pains. When these symptoms appear I take painkillers.”
5. Since endometriosis can sometimes have an impact on pregnancy, what has your experience been like? Has it influenced pregnancy and gestation in any way? Did the treatment change?
“At first the gynaecologist told me that it was likely that I would not be able to get pregnant. So, when I became pregnant it was a surprise. During the pregnancy I didn’t have to change my treatment since I had already been taken off oral contraceptives before the pregnancy. However, I stopped taking painkillers and for tummy aches I took chamomile and turmeric.
I’ve had two complicated pregnancies, but I didn’t notice endometriosis pain during the pregnancies.”
6. How does endometriosis affect your day-to-day life? Have you had to make any lifestyle changes?
“Since I couldn’t use the IUD or oral contraceptives, the doctor thought maybe I could make some dietary changes. I was tested to rule out some food intolerances where they prove that I have anisakis. I was put on a special diet and my lifestyle changes indirectly because of the endometriosis. I did not eat fish for years, which also improved my pain.
I go to the gynaecologist every so often to follow up on my endometriosis and see the progress. I will probably decide to have surgery in the future.”
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