Forty Years of Pain and Still No Diagnosis

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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.

The Pain of Puberty

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 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.

Miscarriages and Endometriosis

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. 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 have stopped my periods for a longer time, but after a couple of months enormous bleeding 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, it was 1978.

Hysterectomy

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 endometriosis and to keep the uterus.

When I woke up after surgery, I felt the incision with my hand, and it felt empty. I knew. 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.

Post-Surgery- Cycles of Pain

I could no longer have children. We planned on adopting before we got married, so we started the process 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.

In 1980, we adopted our first baby boy and we were so happy, but I was still in pain.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 a laparoscopic examination again, and again he found endometriosis and a few chocolate cysts.

Our second baby boy came in 1981. The gynecologist monitored my condition.

Premarin, Other Hormones and Psychosis

In 1992, after another surgery, doctors conducted an intra-uterine inspection and discovered 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 for the rest of my life. But then more and more the doctors found out that using this medicine could cause a greater risk of developing breast cancer.

Because of my husband’s job we had to move every four years or so. This meant every four years I had to find a new 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 perspiration in 15 minutes, so I never slept. We asked the doctor to send me to an endocrinologist, but he refused saying 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 find another practitioner.

Prescription Mishap – Pseudo Pregnancy and Leg Pain

In 2010, I planned to travel to Québec, so I took my new prescription for Dagynil, a hormone, to the pharmacy four weeks before I left. 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 the pharmacist said it was safe.

During my stay in Québec, I felt more and more sick, especially in the morning, with nausea, and my daughter-in-law joked that I seemed pregnant. After the month long trip, I came home and a week later I felt another psychotic attack coming. I knew for sure that the pharmacist and the house doctor had made an enormous mistake.

My husband called for the doctor, and he didn’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; by 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 was prescribed the correct dosage of Dagynil and slowly I felt more myself.

Today

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 months 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 looked through blood tests from the last few months, since I needed 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. Forty years of pain and problems and I still do not have a diagnosis and my treatment plan changes often.

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10 Comments

  1. Oops, forgot to write that the surgeon inspected my belly before starting the proces of taking out the gall bladder. It looked fine, no endometriosis was found. Which is a very good thing.

  2. I found the warning of dr. Peter Tunbridge of 29 April 2013. Still thinking of MTHFR.
    What the doctors finally found was gall stones! Very ordinary. But they never looked serious enough. My liver has a different model as most people so it was all hidden under an extra piece of liver. The surgery went well but was not easy. It was all infected and dirt what they had to take out. Unfortunately some little pieces of gall stone found a way out. So I went home on the same day as the surgery. Almost three days later in the middle of the night an ambulance had to bring me back to hospital with breeze taking pain around liver and pancreas. The little pieces of gall stone were playing some game there inside. I was very ill, or at least liver and pancreas were. I was there for two whole weeks.
    Now I’m home and untill now no pain again and my very swollen belly is almost flat, while my weight is the same.
    The doctors were telling me that the gall blader problem must have been there for many many years, with a lot of pain.
    So nothing between my ears or all that kind of stuff.
    Why my blood didn’t gave the sign of an infected gall blader, nobody knows.
    I’m happy to feel much better now and looking forward to a normal live.

    Louise

  3. Dr. Peter Tunbridge,
    As I promissed I react about the idea of my doctor. In The Netherlands we don´t have a full MTHFR test, but the doctor thought it was a good idea to do parts of this test. Tomorrow I go to the hospital for the test: TSH(regular screening) and MMA (Hb,MCV,ferritine,vit.B12,folaat)
    The results are expected in 3 or 4 weeks.

    1. Louise, this is a copy of the post i put up on the BHT group i share with Chandler on Linked-in in reesponse to your horrific treatment. Dr PETER TUNBRIDGE • Chandler, this is yet another case demonstrating the current classical medical 2 dimensional algorythmic thinking process. I was lucky emough to have been taught my medicine by Consultants who had grown up practicing medicine without bits of paper and fancy imaging techniques who taught me how to diagnose by touching feeling examining and above all by LISTENING to every word the patient told you,(“It’s their body, boy, they wouldnt be here if they didnt know that something was wrong with it, Lay a hand on them and feel their pain!”, And if they dont get better with the treatment you give them, then it means your diagnosis is WRONG, so dont blame the patient, blame yourself. Go back to the beginning again and start afresh with a blank slate. Common things occur commonly, but if it isn’t common then bloody well go and look it up. Your greatest diagnostic tool is in your head!)
      This poor lady’s journey of personal horror is a classical case of carrying some form of the MTHFR gene polymorphism. Having this means that she cannot upregulate her oestradiol metabolites, and therefore suffers the consequences of hyper oestrogen stimulation throughout her life. TWENTY PERCENT OF THE CAUCASION POPULATION CARRY IT IN THE HOMOZYGOUS FORM! OVER 90% IN INDIGENOUS POPULATIONS.From several small studies, it has been estimated that 90% of all inpatients in any hospital carry this gene polymorphism.They are the sickest people in our community. Why aren’t we targeting this group? The physiological effect ot the gene defect can be entirely bypassed by the daily administration of a simple vitamin derivative – folinic acid. If this lady had been commenced on folinic acid at the age of menarche, then it is likely that she would never have gone down the pathway that she has had to suffer.
      All the clinical trials have been done. WHERE! WHERE I hear the screams . Well in the context of treatment with methotrexate that causes exactly the same defect. NO! NO! They scream. The algorythym for the use of folinic acid is only for counteracting the negative effects that MTX causes. Yes! but the biochemical pathway is exactly the same as that effected by the MTHFR gene defect! NO! NO! They scream! You are not allowed to use your brain and extrapolate, none of those studies actually say the words MTHFR, and therefore it cant be put in the algorythm for use of folinic acid.
      But it is exactly the same !
      No! Until someone publishes it , we will ignor it.
      But what about the patient?
      The patient has been given correct medical protocols.
      But the patient hasn’t got better!
      Well! Thats their fault – isn’t it!

    1. Dr. Peter Tunbridge,
      Thank you for your reaction and giving an idea. I really don’t know if the doctors ever did this blood test. I see my doctor next week and I shall talk about this.
      If there comes a specific reaction from my doctor I will inform you on this site.
      Sincerely yours, Louise

  4. I feel your journey is similar to mine when it came to the mental health and being rejected by many doctors saying it was in your head. There were so many times that I wanted to commit suicide because people just kept dismissing me and not at all listened to a single word I said. I have so much anger still from how I was treated. I dont have colitis I have “IBS” which I still dont believe but I too dont do know the difference. It really is sad that we have had to go through our lives in this much pain only to have no one believe you.

    1. Thank you, Angela, for your comment. It is sad where we have/had to go through, and to be honest it’s unfair!
      I recognize your anger too. I don’t know why we waited that long before writing about it. But we had to fight together for women health. After all this years and writing my story I have some questions for my doctor and I will ask them next week!
      Angela, we keep on fighting even when it’s a little late! Love, Louise

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