Endo Journey: Louise

I am Louise Heiner-van Dalen, 63 years old. I live with my husband André in Elim, a little village in the east of The Netherlands.

From the moment my periods started at age 15 I had a lot of cramps and stomach pain. I went to the practitioner, and he did some screenings of my blood and urine. Nothing was found. This was in 1964. The doctor told my mother that I was making it up to get attention. So my mother and my younger sister started telling me that they were strong and never complained, while I was weak and always had something to complain about. Every two weeks I had a lot of pain, and I felt so bad; I really was ill.My mother and sister started to call me names and to tell everybody how childish I was. I got married in my 25th year, and after two years, in 1976, we really wanted to get pregnant. In those years I lost two ‘babies’ during the first part of pregnancy.

We went to the gynecologist and examinations started. Fertility examinations did not seem to be possible for some reason, and in those years the only option was a diagnostic laparoscopy. Then they found that there was a kind of flap mechanism, which was why they couldn’t do the first examination.

During this surgery they also saw that there was a lot of endometriosis in the abdomen. They had to tap off a lot of infection humid.

When I woke up the doctor told me it was impossible to get pregnant because the ovaries were shriveled up by the endometriosis.

He gave me medicines that should stop my periods for a longer time, but after a couple of month enormous bleedings started. I was not able to take a step because of the bleeding and there was no way to stop it.

My husband and I talked about it, and with pain in our hearts we decided to that I should have surgery to take out my uterus and ovaries. We were afraid that going on like this could cost me my life, and I didn’t like to live like this. I was only 29 years old, 1978.

After we talked with our practitioner and with the gynecologist, my surgery was planned. The gynecologist told us that they would inspect everything, and it maybe it would be possible the take out the endometrioses and to keep the uterus. When I woke up after surgery, I felt the incision with my hand, and it felt empty in a way. I knew enough. In those years the gynecologist thought that leaving a tiny little piece of one the ovaries would be enough to prevent problems with estrogen hormones. We already had plans for adoption before we got married, so we started this before my surgery.

In the mean time I didn’t feel well, but it was hard to tell what it was. My muscles and joints started to give problems, and I had a lot of headaches. Every four weeks I had several days of physical discomfort and mental instability.

During that time, 1980, we had our first adopted baby boy, and we were so happy. But the doctors kept on telling me that I needed medicines because of mental problems. I refused that, because I was sure that there were other problems. The abdominal pain returned.

Another gynecologist did again a laparoscopic examination; again he found endometriosis and a few chocolate cysts.

Our second baby boy came in 1981. The gynecologist kept me monitored.

In 1992, after another surgery, the gynecologist saw during vaginal inspection that my mucus membranes were very thin and sometimes bleeding. He decided to give me Premarin, an estrogen hormone.

In a short time I felt better than ever before. We were so happy and the gynecologist told me that I had to take this throughout the rest of my life.

But then more and more the doctors found out that using this medicine could cause a greater risk of getting breast cancer. Because of my husband’s job we had to move every four or more years to another place. This meant every four years another house doctor.

In 2004 our new house doctor forced me to stop the Premarin. I refused. Then he refused to give me a new prescription. Day by day my situation got worse; there were signs of psychosis. I had a lot of pain in my legs and seven nightly perspirations in 15 minutes so I never slept. We asked the doctor to send me to an endocrinologist. He refused: it was all mental problems and I had to see a psychiatrist. I refused, and my husband went to the doctor to tell him that he wouldn’t leave before he had a referral letter for the endocrinologist. The doctor gave him the letter, and my husband told him that we would never come back to him.

The endocrinologist agreed with my need for the medicines. He did screenings of my blood and wanted to monitor my progress.

We had to look for another practitioner and found one.

Then in 2010 I planned to travel to Québec, so I brought my new prescription for Dagynil, a new name of hormones for me, four weeks before I would leave. I told them that it was important to have them in time.

Shortly before leaving, my husband went to the pharmacist to get my Dagynil, but they didn’t have to correct dosage by mg. They gave him a splitter and told him that I could simply split the tablet. I always thought that it was not good to split this kind of medicines, but if they say so …..

During my stay in Québec, I felt more and more sick, especially in the morning, with nausea, and my daughter in law was joking that I seemed pregnant.

After that month I came home, and after a week I felt another psychotic attack coming. Then I knew for sure that the pharmacist and the house doctor had made an enormous mistake.

My husband called for the doctor, and he really wouldn’t believe us. I had so much pain in my legs, I felt so bad, and was really panicking. I asked the doctor to make a phone call to the endocrinologist, but he refused. Again the same story!

It took three weeks; then I was so upset that I started to shout at the doctor as soon he entered my room. I lived in a strange world that wasn’t mine. I wanted to die to be with the two little babies I had lost. It was horrible. I kept on shouting at the doctor, and he was trying to make a phone call for a psychiatrist. My husband told the doctor that it would be better to make a phone call to the endocrinologist.Finally he agreed, and the next morning he made a phone call to us to tell us that we had to go to the hospital immediately. Thank God!

The endocrinologist felt so sorry for me. Again the same story. He agreed that I was pregnant – at least I had all the signs – but there was no baby, of course. It took several weeks before I was feeling better after this bad adventure. I had my Dagynil again and slowly I felt more myself.

In 2011 we moved again, and we found a good, friendly doctor. We told him openly about the problems we had in the past, and he listened very carefully.

About six month ago I woke up and felt strange, like another psychotic attack was coming up. I made an appointment with the doctor and told him that there seemed to be something wrong.

He was looked through blood tests from the last few months, since I need monitoring because I have collagen/microscopic colitis. Then he saw that my thyroid numbers were going up slowly but still within the margin that is normal.

I asked the doctor to make a phone call to the endocrinologist, which he did immediately, while we were sitting there. The endocrinologist explained my hormone troubles, and he advised him to prescribe Euthyrox. I was happy and felt better within a couple of weeks.

My abdominal pain is still there, and nobody knows if it is the endometriosis or the colitis, but another surgery will give more scars and troubles inside.

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Louise' story originally appeared on Project Endo, which you can find here. Very special thanks to Louis and Project Endo for sharing!

If you would like to share your personal journey with endometriosis, please comment below! 

xo Heather
Photo Credit: Megan Wilson via Endo Awareness Thru Art