And It's About Time There Was Some Support For Cushing's!
I'm 26 years old and have been suffering with a fair few of the Cushings related symptoms for at least 4 years. The first thing I noticed was the frequent urination. I go especially during the night when I feel most bloated, and when It hurts to lay and put pressure on my bladder. During night time it is not unusual for me to visit the toilet 6/7 times.
I spent well over a year visiting doctors/nurses/specialists who seemed baffled with the problems I was having. I was subjected (as I'm sure many of you are familiar with) to test after test, and had to undergo some horrendous attempts at treatments. At one point I was told I 'probably' had weakened pelvic floor muscles, and was made to use a vaginal probe for months. When this still did no good, I was told that basically there was nothing wrong with me and nothing more they could try to help me.
Several months later I noticed leaking from one of my breasts. As well as these symptoms I'd been feeling very depressed, gaining weight, continually tired & stressed, back aches, irregular periods, bruising. However I never linked all of them, and was just made to feel like a 'hypocondraic'. Anyways, after noticing the leaking from my breast I immediately panicked that I was pregnant. The doctor confirmed the test as negative. I was then given more and more blood tests, and waited for ages for results, which all came back negative. I started to feel that maybe I was imagining all these problems, or blowing then out of proportion. But i was persistent because I knew that something was wrong!
Had mores tests, and eventually they found extremely high leveles of prolactin in my blood. At this point my doctor referred me to the endocrinology dept at our local hospital. I waited for my appointment for about 2 months. When the appointment finally came round I saw the specialist for approximately 2 minutes (after waiting all this time to be able to speak to someone who might understand!), he then referred me for an MRI scan, and prescribed me Cabergoline tablets. All this time, despite asking the specialist, & my GP, nothing was ever explained to me. I was left feeling worried, and scared that at worst I may have a brain tumour.
I waited for about 5 weeks for the result of my MRI scan (5 weeks of panic and tears), and eventually received a letter to say that it was clear, and that the specialist would make an appointment to see me again in a few months. That was now 12 months ago. I have heard nothing, I have called on several occasions, and written but had no reply. I've been back to see my GP, who has not been very supportive at all.
I'm still taking Cabergoline, which makes me feel ill. Anyway, I've been so fed up recently, I have put on even more weight, my confidence is at an all time low, I'm still going to the loo all the time, and suffering the rest of the symptoms. I finally made myself go back to my doctor last week, and explain that I was not happy with lack of support, and lack of contact from the Endo ward. She called them immediately to complain on my behalf. Their excuse was 'we have a backlog of nearly 900 patients who are waiting to be seen'. That does not excuse the fact that they had not written in reply to my letter to explain this, or that it was now 12 months later!!
My GP then had me do a blood test for underactive thyroid which has just come back negative. I'm really hoping she can give me somthing - at least to help me loose weight whilst i'm waiting to see the Endocrimologist again. I'm so unhappy, and desperately need someone to take me seriously. I'm scared that the weight gain is irreversible, that I am possibly infertile, and that I will feel this low forever.
I'm sorry for rattling on, but this seems like the first place where I've found other people who may understand the way I'm feeling. Would be so grateful for any feedback from anyone.