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Marianne's Story


I'm just in the process of getting diagnosed for what sort of Cushing's Syndrome I have. I think I've had this disease for many years now (I'm 52) but was diagnosed with Ehlers-Danlos Syndrom (EDS) about 3 years ago. However I think that the bruising, thinning hair and muscular weakness are in fact CD. And I have a variety of other symptoms in terms of weight increase, moon face, memory losses, hairiness, red checks and neck, loss of libido, irritation and tiredness. I also consider myself fortunate in not having these in what I'd call an "excessive" way, and not the depression. However, having lost the function in one achilles and being severely restricted in the other, and knowing how easily my tendons rip, I'm keen to try and get treatment for CD in that will strengthen my tendons/muscles.

I have just moved to Australia and a rheumatologist I saw wanted to test me for CS. So I did the 24 hr urine test and was 'off the scale' at 1170. Fortunately in Newcastle is a pathologist / endocronologist who specialises in Cushing's Sydrome, which seems nearly a miracle as I've been trying to get someone to identify what's wrong with me for many years now having ruptured my tendons very easily (two ruptured achilles, gastronemius and hamstrings) and bruised almost without being touched.

This week I've been having blood/saliva tests and dexamethosodone suppresent test plus I'll have an MRI on my head. I spent last week very frightened at the thought of having adrenal cancer, even though my specialist was telling me it is very rare. I had a CT scan last week and my adrenals are clear. But with a very bad family history of cancer, I'm not ruling out some form of cancer as a cause.

I'm interested in hearing from any 50+ women with pituatary tumours, particularly if you have had surgery. I have also experienced, in the last month, very sore breasts. I'm not sure how this might be related, and if there's any link to this current soreness and getting CD, with having had a breast reduction 6 years ago. I also had my ovaries removed 2 years ago (as a precaution as my mother died young from ovarian cancer). So if anyone has any experience around links between breast and ovarian surgery and CD I'd welcome that being shared.

It has been wonderful to have found this site. If there's anyone in Australia or New Zealand who would like to make contact, I would love to hear from you. Not to "have questions answered" but just to share experiences.


Update September, 2008

Following a BIPSS, I have now had CD confirmed as being caused by a pituiatary tumour. I'm awaiting a date for surgery, which I'd love to have sooner than the two months it's likely to be.

In the meantime I'd welcome any information from women of around my age, 52, on how they found it. I appreciate that how we respond is very indiividualised but would still find your experiences valuable.

I'm going to try and prepare myself through exercise, relaxation and good nutrition as well as seeing a psychologist so I can pace myself mentally and emotionally over the next few months. It's been a steep learning curve, helped immensely by the information shared on this website and talking to/meeting some women with CD.

I had little appreciation when I started of the diverse and complex way in which this disease affects a person. As I develop more understanding I feel I can manage the symptoms better. And prepare myself for life-long management rather than a 'cure' after surgery

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