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Michelle's Story

I used to be a fat child, but as soon as puberty set in, I lost all the ‘puppy’ fat, and was quite thin.

When I was 14, I developed a orange-sized cyst on my left ovary, and this was surgically removed. During the surgery, endometriosis and PCOS was also diagnosed. I have been on birth control and several hormonal treatments during the years, and had eight laparoscopies and lazer treatments, the last one dating March 2000. I was also treated with Tridomose, and then Synarel, hoping that it would help the endometriosis, but after 6 months of this, I threw in the towel (much to the delight of the people I have been screaming at!).

I have been suffering from depression since age 12, and have been hospitalized a few times. It usually comes in cycles (especially in winter times), but now it is a here all the time. I have been taking Prozac again (I hate taking medicine), and it seems to hold the worst anxiety and severe depression under control, although it does not take it away.

1992 - Age 14

1996 - Age 18

Last year (2000) age 22, I started gaining weight slowly. I though it was due to the PCOS and endometriosis, and then it was also blamed on the hormonal treatment I was receiving. My stomach started swelling – some days I looked about 6 months pregnant. These swellings would come and go, but by August 2000, they were a constant daily occurrence, and I sought medical help.

The OB-Gyn took a sonar, and suspected that my endometriosis has infiltrated my colon, and this was causing the problem. A subsequent colonoscopy revealed nothing, and I was told it was due to irritable bowl syndrome. I was given a lot of tablets and a diet to help regulate this. I followed this programme for 5 months, but no improvement. I gained more weight.

Then in December, the swelling got worse. I had to buy new clothes, and gained a lot of weight in a short period of time. I was very tired, developed severe headaches and generally felt unwell.

I again sough medical help in January, and when my blood tests came back, I was diagnosed as insulin resistant. I was given Glucophage and Glucobay, and a diabetic diet to follow. My health was getting worse. My periods also disappeared during this time (last period mid-December 2000). I paid to visit to the OB-Gyn and was told that my periods had stopped because I was so FAT!!!!! But then why was I getting so fat?????? I stormed out of his office screaming obscenities, and have not been back since.

During this time, the headaches and pains and aches started to increase. I was getting tired more often, and had difficulty sleeping. The stretchmarks also appeared – first on my abdomen and breasts and then spread to my hips and buttocks.

At first I attributed these marks to the severe swelling, figuring that I had delicate skin that could not handle it. I still gained weight, and the headaches increased. My vision got so bad, and my feet would just go dead – even when standing up.

Since March 2001 up to now (July 2001) I gained about 18kg (about 40 pounds), totalling a 40kg (about). The stretchmarks are now on my abdomen, breasts, arms, hips, thighs, buttocks, knees. In a year’s time I have gone from a size 14 to a size 26.

I have become a total social recluse. I live alone with about 20 cats. I have almost no friends left, and my family is starting to get tired of my constant complaining, although they try to be supportive, but feel helpless because they cannot help me. I spend all my time at work or sleeping.

March 2001 - Age 22

June 2001 - Age 23

June 2001 - Age 23

Pictures below
04 July 2001


I have a few pages of symptoms at the moment.

My face has become very round (see photos, double click on them to see them full size), I have gained about 45kg (about 100 pounds) in the past 10 months – mostly in my abdomen and upper body (my wrists and calves are still the same measurements), I am 4cm shorter than I was in January, I have terrible striae covering about 40% of my body, and the rest have burst capillaries and veins, my face is red and puffy, bruises and cuts takes ages to heal, painful skin rashes, terribly oily skin on my face, with acne, and dry skin on the rest of my body. I am terribly itchy, a hump on my neck (still small but growing), terrible sweating and hot flushes, intolerance to extreme cold and heat, night sweats. I am developing weakness in my arms and legs, I cant even carry my shopping home anymore, and I am struggling to climb the stairs to my office.

All my muscles ache, my joints are sore, backaches, severe fatigue, lack of energy, my feet and hands go dead (even when standing up), swelling of the abdomen, 25% loss of peripheral vision (tested last week). I am growing a moustache, while the rest of my body hair is disappearing (I think it is just relocating to my upper lip….), and my hair is falling out in bunches.

Some days my heart beats terribly fast and I feel like I can’t breathe. I get short of breath, and have pains in my chest. I often phone my family members in the middle of night thinking that I am dying.

I have chronic bronchitis, flu or colds. I anyone with a sickness or infection comes near me, I am assured to have it the next day. I am insulin resistant, and cannot take sugar. I wake up about 5-6 times per night to urinate, and also urinate frequently during the day.

I have debilitating headaches, that keeps me in bed for about one day per week. I often feel dizzy and lose my balance and walk into objects that I didn’t see. I have sores on my tongue, and my fingernails are terribly thin and breaking (and I used to have strong nails).

My breasts are very sore, and I have had a milky discharge from my right breast since 1996. It recently also started in the left breast. My prolactin has been tested about 8 times, all ‘normal’.

My depression is very bad at the moment. I am very suicidal, irritable and have terrible anxiety and paranoia. I cannot concentrate, and has lost interest in my hobbies. I am a social recluse and have no sex drive. Some days I cannot remember certain words, even if I can see the person’s face or the object clearly in my mind. I forget birthdays, anniversaries, telephone numbers, people’s names etc.

Some days I cannot sleep at all, and then other days I cannot wake up. I wake up feeling worse that when I went to bed and sweat a lot. During the day I am sleepy and tired. I cannot walk far as I get exhausted much more easily. My periods have been gone for about six months now.

I have seen about 10 doctors now – all kinds from GPs to Surgeons – and nobody has been able to explain these symptoms.

On the 1st of June I went to see Dr H Schwalb – a surgeon – and he mentioned Cushings. He hospitalized me for a week and ran a bunch of tests. He mainly tested my insulin and glucose levels, and did one 24 hour cortisol urine test. He also had a CT scan of the abdomen done and a MRI of the pituitary.

All these tests came back ‘normal’. All that they could pick up was my insulin (which soared to 61,4 – normal level 0.1 – 9). The cortisol came back ‘normal’ and the MRI and CT scan was ‘clean’.

The doctor admits to being stumped. The second set of tests came back today (10 July 2001) - normal.

Today I had a screaming fit of rage - I crapped all over a colleague, had a fight with my boss, and then spent the rest of the afternoon crying hysterically.

I referred myself to an endocrinologist – appointment is on the 1st of August. Hopefully she will be able to help me. I think it will help a little that she is a woman as well. Hopefully.

Luckily I phoned my aunt (my fathers' youngest sister - a GP) and she listened to all my symptoms and complaints and agreed that it most definitely sounds like Cushings. She will try and set up an appointment for me with somebody who has some experience with this.

I am now 22 years old (will turn 23 on October 7), and I live in South Africa. I am not married, and I am single at the moment. I don’t have any human children (only 20 cat-children). I am a press media monitor, which means I monitor the press for certain clients. That involves reading all the printed press in SA (magazines and newspapers) and then transferring the information onto websites for the clients. I really love my job, and spend a lot of time here.

Furthermore I am very happy to have found this wonderful site. It gives me hope in the days that I feel like jumping from a building (like today). Thank you for that.

I will update this story as we go along and I receive more info and (HOPEFULLY) a diagnosis. Please keep your fingers crossed for me!

If (or when) I get diagnosed, I want to work towards raising awareness of endocrine diseases in South Africa, since nobody around here seems to know about them. Maybe it could just help a few people….

Well, this is my (boring) story up to now. I will keep you updated.


10 July 2001

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