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Hi all! I'm happy that I found this group as I hope there's people who can understand me and we can share experiences with each other. Let me introduce myself. I'm 29 yrs old mum to a gorgeous 13 maths old little girl and one been diagnosed with Cushing's disease when I was 21. But my story starts when I was 18. Firstable I had an Irregular period and my weight gone up from 50kgs to 94 kgs my moon face was covered with acnes all over. I was frightened and hopeless. I managed to see and endocrinologist and he diagnosed with PCOS however my gynaecologist didn't believe me that I didn't have a chance to get pregnant and every time when I went to see him he just sent me for pregnancy test. So I gave up, I was tired of explaining myself all the time and nothing happened. But then when I started to seeing the endocrinologist I got the hope back. After years they treated me for PCOS but no improvements happened they admitted me in the hospital astaff they said I don't keep my diet and that's the reason why I'm not improving. But after weeks in hospital they've seen that I can deal with my diet but still no changes in my general condition they didn't have a guess what is going on. As I couldn't sleep at night times I've done a lot of research on the Web and found Cushing's disease so on my next appointment I asked my endocrinologist to have an MRI cause I thought I have Cushing's he agreed and sent me for urgent MRI. I was right so I got hope again however I was scared of the transphenoidal surgery. After my MRI I had am consultation with a neurosurgeon and he decided to do the op ASAP cause the macro adenoma was going to be dangerous for my optic nerve. So one had my 1st surgery when I was 21. It took about half year to get better but I've got. Even I've lost 27kgs within 4 months without any diet or exercise. I didn't even realise just one they my trousers fell off from me. Lol I was so happy. My depression is gone and I was myself again. I was taking Hydrocortisone for several years. I met my husband when I went out to celebrate my health with my friends and we've got married in 2011 then we moved to London. I had to have MRI every year for the years. They said if the scans clear for 5 years it means I'm cured. I went for my last MRI in December 2013 and was clear. I was so proud and happy. But my symptoms started again. I was pregnant in 2014 when they found the tumour grown again. I broke down. I even lost my baby at 8 wks of pregnancy. I can't tell how I was broken. Do they've done the 2nd surgery on me but they were recommend to have radiotherapy even after the surgery as the tests shown is a fast growing tumour. I asked for a 2nd opinion cause I was frightened to loose my fertility. So they decided I don't need radiotherapy. After few months of the operation I lost weight again just like a balloon. My husband didn't want to believe his eyes. Lounge a new person, I've changed a lot, no acnes, no dry hair, got generally well, no depression. After 6 months I've got pregnant again and note she is a healthy baby. As I went for DNR test as well they found out my Cushing's is not related to it so our children likely won't get this horrific disease.
It's still 2016 and my scan was good in March but I've had this feeling that something is not quiet right with me. I'm depressed, fatigue, acnes and dry hair started, can't lose my weight, hair started growing on my face, my muscles are killing me, I have Recurrent infections, Eczema, Fungal infections and my period has changed. But my new Dr saying I'm alright. But I'm not. So I asked myself back to my first draft and unfortunately she diagnosed the Cushing's again. Just before Christmas. My ACTH level is in the sky again and in waiting for my MRI very soon. To be honest this is different. I'm fatigue like never been before and struggling to concentrate and my short term memory. My family knows what's happening but they don't know what's happening inside of me. How I'm feeling or how tired I'm. Sometimes I feel like I'm just a problem for them. Is very difficult to co-op south my working life, my baby and other daily routines. I sent them a leaflet and I hope they will understand me better and accept my condition and behaviour cause even I know myself how difficult with me. I got anxious from time to time and shouting on them and breaking the staff in the house bit I'm ducting inside. I don't know how will I co-operate later after the 3rd surgery and now it's clear that I need radiotherapy. How will I looking after my daughter when I can't even stay awake and how will I co-operate at work or at home with all the houseworks???!! I just feel lost at these days until I know more. And not at least how will my husband accept the situation again? We were planning a 2nd baby and now it seems to be a dream only. Will he still see me as a woman if I lose my fertility? All our plans seem to be flyaway. I'm shocked, frightened, alone and very very fatigue. I just wanna runaway and screaming out or sleeping for days lol.
Is anyone else feel the same??? Anyone else who had the 3rd operation done?
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