Cushing's for lifetime?!
Posted , 7 users are following.
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?
0 likes, 20 replies
enci
Posted
Hi there, it's been a long time...both theories are very interesting. Hereditary? Blood transfusion or antibiotics? I've had my DNA checked and they said not Hereditary. But it's only my one. I didn't really had a lots of antibiotic therapy and I didn't have blood transfusion. But I was depressed at around my 16s and after I've seen a man to die with a brain tumour I started to thinking of it a lot. As I was depresses I wished to get a brain tumour so I can die quickly. And after I've "ordered" ,about 2 years later I've got it. Not the same way as I wanted but still...So what do you think guys about this?
nblank1229 enci
Posted
Hi Enci
My name is Nikki I was just 19 when I was diagnosed with Cushings. I was always very skinny growing up and in the matter of a year I gained over 100lbs. My parents were worried that something was wrong, and I just thought that I was getting fat. I had a lump on the back of my neck (referred to as a huntchback) hair growing every where, full face, fatigue, and just all over depressed. Here I am fighting to get dressed every morning. As I stand in front of the mirror trying on 50 different outfits just looking at my self and just asking how did this happen and what was wrong with me? I didn't change my diet, I didn't start eating more I just didn't understand what was going on.
So one day my mom decided she needed to figure out what was going on with me so we went to my pcp and she didn't think anything was wrong, she put me on a strict diet and told me to start exercising more. So I did exactly what she said, after months of going to the gym and eating right nothing was happening. So mom took me to see an endocrinologist I walked in the door and almost immediately she knew what was wrong. She could see how unhappy I was and depressed. She order some test and it turns how she was right. I went to see a neurologist immediately after and scheduled my surgery for October 2009 After my surgery I was feeling better dropping weight and everything was going good until 2011 when all the symptoms came back again even faster than the last time. my happiness and hope went down the drain. I'm even more scared this time then the last. So after my second surgery everything is going great I'm back to normal more confident and most importantly happy. When I got the news from my endocrinologist that she is 99% sure I can not get pregnant Back then I thought it was the end of the world the most important thing to me in life is family and since I was a kid I always dreamed of having a big family with at least 4 kids. But now I came to terms with it I'm seeing a fertility doctor yes it will be expensive but if it gives me the one thing that I dream for then it's worth the price.
It's now 2017 I am clear from Cushing s I am just very happy I had a great support system that most people don't. I had my boyfriend (that has been there for me since before my cushings during and after) which we are still together and getting married in less then a year, I had my parents, my siblings, and my friends.
Thank you for letting me share my experience!
vicky61456 nblank1229
Posted
Hi Nikki, Nice to hear your story, the more we hear from others the more we may understand this horrible disease. I have only had Cushing's once (so far) and I wondered if they gave you any explanation as to why you had got it again?. Did you have a tumour removed first time round?
It is very sad that you have been told that you cannot have children, I had not heard this before. But I am so glad that you are not giving up. Your boyfriend must be good person. It is sometimes very hard for others to understand the dreadful distress Cushing's causes us. Do reply if you can. I would like to understand the reason for your 2nd op. Take care and be happy!