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Caroline's Story

Hello to everyone,

I've been around on these boards on and off since late 2006 when I started to think that I might have Cushing's Syndrome as the doctors I have seen over the last 15 years can never seem to agree about what is causing my problems.

I have now found that I do have a pituitary tumour which is 5mm in diameter, and although Cushing's is not yet confirmed I felt it was time to add my bio.

I had my first rapid weight gain when I was 17 years old (1987), I got lots of stretch marks at that time. I then lost the weight and was fine up until I was 23 (1993) when my periods stopped and I gained 40lbs over 8 weeks. I was working as an outdoor instructor at the time and was mortified when the kids started to call me 'the bearded lady'. Needless to say, this is when the hirsutism began. When I look at photos of me at the time, I definitely looked quite cushie then, my face was flushed and rounded and I remember having the worst chest infection I have ever experienced. I was given progesterone and clomiphene and my periods came back, but have not been regular since. My GP also gave me some slimming pills and I managed to lose the weight and looked pretty healthy again. The gynae said I 'probably had PCOS' I then took cyproterone acetate for years, but the beard continued to get worse, although quite gradually.

My weight did fluctuate too, but never as extremely as it had in the beginning, so I would just have soup only for a few weeks and manage to lose it again. I got married to a lovely man in 2000 and stopped taking the cyproterone acetate in the hope of gettting pregnant. My beard got worse quite quickly after that and hairgrowth increased on other parts of my body too - I felt like I was turning into a man! By 2004 I sought help from a fertility clinic, I had all the tests over and over, at first they said I had mild PCO but by the end of it I was told that it was unexplained infertility because there was no evidence of PCO and all the plumbing was in order! I was put on the NHS waiting list for IVF. This was now 2005. My beard was really bothering me now and my confidence was shattered. I longed for a child and couldn't accept 'unexplained infertility'. I had laser treatment which didn't work, so I had electrolysis. After 3 months, the therapist gently told me that it wasn't working and she thought I should seek further medical help. She said she had never seen chin/neck hair anything like it and she had been doing electrolysis for over 20 years. I am very grateful to her.

I was referred to an endocrinologist and basic tests were done over the next 12 months. They said I had PCO, then not PCO then idiopathic hirsutism. I had been having severe loin pain so demanded an MRI of my adrenals (I had started my own research by then), and this came back query left-sided adenoma, so I had a CT scan which was clear. I just wish I had demanded a pituitary scan at this time too, but didn't know enough then and didn't realise that if it was cushings it was far more likely to be pituitary. I felt pretty embarrassed after the clear scan and tried to forget about cushings or anything else and just get on with it. I had been having other strange symptoms too, but didn't realise they could be related. Bowel problems, nausea, insomnia, sweating, increasing thirst, occasional horrible chest pain, tingling hands and fingers, manic behaviour at times, severe depression, agoraphobia, emotional lability, poor circulation in my lower legs and feet, periodic mild swelling of my feet, bad headaches, severe loin and right upper quadrant pain at times and of course, still no baby. I lost interest in sex and couldn't get aroused, I put this down to depression, but now I'm not so sure. I seemed to be feeling more and more unwell so sought a second opinion. I had also started reading everything I could find about pituitary disease and cushings - and of course this site. I started with a new endo in July 07 and placed my faith in him as he is quite a renowned academic. I didn't mention cushings to him, but to be fair, he did do far more intensive testing than my previous endo including dex suppression, but I suppressed, and by the end of August 07, I was told that I had a 'mild variant of PCOS'.

Thankfully, being involved in this forum, and everything I have read taught me not to give up, I knew that mild PCOS was unlikely to be causing my severe hirsutism and infertility along with everything else. Whilst on holiday I paid for an MRI of my brain and it came back showing a 5mm adenoma and that this is displacing the pituitary stalk. I am still in shock and although I know this doesn't mean cushings, it does mean that I am finally getting somewhere in finding the answer to my problems. I don't think I would have come this far without this forum and can't express my gratitude enough. I have taken my radiology report to my endo and am now hoping that he will help me.

I will definitely be sticking around here now, whatever the outcome, and look forward to getting to know you all better. I will also try to help anyone who needs it as all the others have helped me. My husband has been fantastic and I am so lucky to have him. I still can't really believe how patient he has been, as I have been very difficult at times to say the least! He has always believed in me though and never dismissed my suspicions. I really feel for those of you whose loved ones have been less than understanding. I think my hubby just wants his active and sociable wife back now!

There is good news too, for those of you who suffer the beard problem. I have been having Epilight or IPL treatment and finally something has really helped. I am starting to feel slightly feminine again now!

I'll update this bio as things progress.

Love to you all,

Caroline from the UK