Posted , 3 users are following.
this is going to be a longgggg post so I need a willing audience first... looking for as much help/advice as I can get, particularly if you are interested in female hormones or endocrinology. I will post the details once I know atleast someone will be reading it! Thanks in advance
Btw - 17 year old female
0 likes, 12 replies
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Hollaka79 isabella221
Posted
Hi. You have an audience of one thus far ??
Not sure how much help I will be as only recently diagnosed with steroid induced Cushing's but if it helps my periods have now stopped all together (38 female) after being hit & miss for a couple of months...
isabella221
Posted
Ok here goes..
I begun menstruating just before my 15th birthday.. so mid July 2015. I had roughly 3-4 normal cycles, had pms but it was manageable.
Then I have never received another period after about October 2015. A bit of background about my i haven't had the easiest childhood... parents split when I was 4 and dad committed suicide when I was 10.
Now I understand stress can affect your menstrual cycle but not for nearly 2years straight? I have always had a stressful life.. working 2 jobs and going to school full-time but I always seemed to manage ok. I moved to Australia exactly a year ago and my life turned around I was slowing down and relaxing etc. I have always been a active kid always been skinny.. my family are all very small and skinny and no history on my mums side for female problems..
my dads side- my aunty has pcos and my granny suffered endometriosis. Any how.. I gaining all this weight.. have always eaten very healthy but decided to pick up the pace and go to the gym and really focus on eating well.. This went on for more than 6 months.. i tried every diet you can imagine.. intermit fasting.. diet shakes.. diet pills.. counting calories you name it.. The weight just would not go away.. infact it just keep coming on. To date I have gained exactly 10kgs. I have not grown since I was about 12.
These symptoms i have been experiencing for a year or less :
Easy bruising
urgency to urinate/ weak bladder
easily get infections/slow healing
hugely puffy face
weight gain
stretch marks ( boobs and thighs)
absent period
increased cellulite
anxiety/panic attacks
depression
poor memory/memory loss
easily puffed w/o exertion
bloating
irregular bowel movements
What i have done about these so far:
I saw a doctor a year ago when i arrived in Au, paid $100 to see her and she's a family doctor.
She tested bloods, urine and ultrasound.. everything was supposedly normal. ultra sound questioned pcos but because it did not correlate with my bloods nothing was done. She said everything was fine and at that point i wasn't too worried.. It was only the weight gain that was bothering my.. and yes my Bmi is over and so is my body fat mass.
Again went to another doctor about 4 months later because I still wasn't happy with what was happening and started to wonder if all these symptoms and weight gain were related.. She put me on the pill ( I have refused to ever go on it but sacrificed to test the theory) she claimed these would not make me gain weight and that I would regulate and be fixed.. Because I did not want to take it long term she said 3 months would be enough to reset me.. So I take this pill.. It has now been about 5 months since I took I came off it and nothing has changed.
So anyhow I have began my own research.. I questioned her of my cortisol levels because I thought they might have been to blame.. I asked about cushings but she said it's too rare, my cortisol was supposedly fine but she noted that I may have infact had high cortisol in the past in which has made me gain weight over time.
I was again not happy with this outcome and reached out to another doctor who was into like natural alternative and chinese medicine. She said pcos.. had and bloods they were "normal" and so was scan..
Well I asked for a copy of these bloods..turns out my oestrogen levels were in the same stage as a menopausal women and so was my progesterone .. this was just after coming of the pill btw.
So I am thinking is stress induced menopause possible?
hormone imbalance?
Cushings?
i have no idea..
I have researched into pcos and it just doesn't seem fit.
The pill i was on was the 'mini pill' ( one hormone) It supposedly lightens your period and relieves pms symptoms.. we'll let me tell you those 3 months I was on it was hell.. I was in excruciating pain.. heavy periods bloating, head aches, panic attacks, you name it.
Boobs also doubled in size.
I have all of my blood test results if you want to see.
I have just had another scan and bloods done as i wanted to see my testosterone etc since its supposedly pcos.. all fine.
I am so over this i just want to feel healthy and normal again and back to my self.. Any advice at all I would appreciate so much
vicky61456 isabella221
Posted
WOW! I am hoping other like Cyclic Cushings may respond to you as well. The fact is that that Cushings is very rare which means that most GP's will not have heard of it or be afraid to diagnose it. Many of the symptoms you have are the same as me but nothing re periods etc. The weight gain sounds very like mine. If it is Cushings no amount of dieting will help. Until you have a diagnosis it will pile on. I went from being a 24" waist to 45". If it is a Pituitary Tumour once that has been removed the weight will soon start to come off. I am now a size 10 instead of a 22. PCOS does replicate a lot of Cushings but is obviously treated in a different way. You need to be referred to an Endocrinologist who specialises in this disease. If there is anyone on this forum who loves in Australia maybe they can advise you. Like I said some of the people on the forum do not check in everyday so hopefully others will reply soon. It is really a question of plodding until until a GP is good enough to test and refer you. Do keep in touch.
isabella221 vicky61456
Posted
Yeah it seems to be very slow though as my period has been absent for two years now? So musn't be very agressive as you could say..? It's only in the last year the weight has really piled on. And the symptoms have been noticeable to about a year too but I was quite fine at the beginning? Yes I am aware of pcos being similair although as I say my bloods don't match and they won't diagnose me! So therefore won't treat me... a referral for a endo is hard to get and even then a years wait to see them and it's not free
. Thanks for your reply I appreciate it xx
Hollaka79 isabella221
Posted
Firstly, I am so sorry for all you have been through in life, and still so young. You come across as a very classy, well rounded young lady so you should be proud of yourself (without sounding condescending).
As for your symptoms, it does sound like Cushing's and as I'm learning fast, Dr's aren't so willing to go with this diagnosis as it's so rare & I don't know about Oz but here in UK they have to report it to the health organisation so more paperwork so less diagnosis. Politics 🙄
I was diagnosed with pcos 12 years ago, having tried to get pregnant for years to no avail, back then all they did was a scan on my ovaries which were covered in cysts. She put me on clomid & 10 months later my now 11 year old arrived! Was told I'd never conceive naturally- 9 years later my surprise 2 year old popped out! So don't loose faith when it comes to fertility ( not that you're even thinking about that right now but just wanted to share my deal with pcos). I never had the hump or moon face, just literally missed periods constantly & had horrible pms/acne & every now & then a cyst would burst & by god did that hurt!! I know supposedly Cushing's & pcos is similar but in my experience Cushing's is worse (in my opinion). I have been diagnosed with Cushing's due to steroids & never felt this crap with pcos...
On another thought (as I'm laying in bed here with Ice pack on my hump having brain blips) have they checked your thyroid? I'm sure they probably have but if not it'll be worth getting it checked & also do some research on thyroid problems as not all thyroid conditions can be checked on the "standard" thyroid blood test.. just a thought.
I would definitely push to see an endocrinologist who specialises in Cushing's if possible, or at least an endocrinologist. Not sure if your GP can run the 24 hour cortisol urine test, my GP did all the tests prior to referring me to an endocrinologist (who is now making me wait til I taper the steroids 😡 But that's a whole other story) , it may be worth asking as it's a pretty straightforward test & will at least show if your levels are high over a 24 hour period. Then if that comes back positive they may start making moves. Unfortunately, like so many ailments nowadays you have to keep pushing or the Drs won't bother so please don't give up, there is good health & life at the end of this tunnel. I wish you all the luck & hopefully you'll find a Dr who can help you... xxx
isabella221 Hollaka79
Posted
Thank you that is so kind of you to say!
Well yes here in Aus it seems like a hassle to diagnose someone and most doctor don't want to know about it just pass me on to the next! Where abouts in UK are you? I have relatives there and did some travelling about 2 years ago it was the best.
Oh I am so glad to hear about the fertility! That did worry me and although obviously I'm not thinking about kids now it was a scary future thought! How lucky were you though that is great! Well I just had another scan for pcos recently.. there were lots of little "cysts/follicles" although there was only about 22 and you need 24 to be diagnosed with pcos! How crazy😂. But see I am not suffering acne or hair growt/loss, I do not seem to have any classic pcos symptoms- so I don't feel content just sticking with pcos and having nothing done about it...
I have had my thyroid check just in bloods 3 times I can show you my results in you like but it seems to be pretty fine, I could go into more depth testing but it costs a lot of $$... I was thinking hypothyroidism but doctors are reluctant to say anything.. I have heard of the 24 hour testing although I do not think they will do me as my 8am cortisol wasn't elevated.. but I know you can buy them online and do it and send it back to a laboratory so I may actually try that instead.
I woke up to your message this morning and you know what your right- I'm not giving up. I just made another appointment at a new clinic with a female doctor who used to be a gyno so she may be some help in getting me referrals! Thank you so much for your message though it's nice to not feel so alone in this whole thing...💖
Hollaka79 isabella221
Posted
Awesome! Hopefully this gyn will get u on your road to recovery...
I live in the south east of England, we're so lucky here having free healthcare! I'd be screwed if it wasn't (I'm on Humira for my crohns & just one injection is £1200!) I did used to live in Florida so I understand what it's like living with "paid" healthcare, it becomes a joke where u have to debate whether to eat or see a Dr! I hated that, especially with my daughter then when I got pregnant I decided to leave & come home. Which as it turns out was the right decision as been sick pretty much ever since!
Where in Oz are u? I have family in Adelaide & have been a couple of times to visit. I love it down there, initially our plan was to move to oz but too hard to get in so went to Florida (me & my now ex husband) in hindsight should've stayed put in the uk lol but that's a whoooole other story!
Anyway, I'm glad you're still pushing, like I said, you know your own body & when something's up you know it... Keep us posted with how you get on xxxx
isabella221 Hollaka79
Posted
Oh nice! My family live in London and York! I'm living in Brisbane over here
I love it too, its beautiful. Yes that's so true and I just wish the doctor could just feel how I feel or look inside cause something is not right 😩😂. I will definitely let you know how I go! Thanks again, talk soon 💖 Xx
vicky61456 isabella221
Posted
Hello Isabella, I am here and listening and will be of any help I can. Hopefully others will reply but we all come to the site at different times and days. We are always eager to hear your story and to help and learn from it. Do please let us know, doesn't matter how much you say!
isabella221
Posted
Guys I've just had my first appointment with the endocrinologist last week. Now have woken up and seem to have a period??! Has been absent for two years.. Do you think it is still worth investigating? I don't see the endocrinologist for 6 weeks so will see if I ovulate again between that time.. Bit annoyed though as I was just getting somewhere and now my period is back.. after two years?? Does this still indicate that something could be wrong or should I not worry?
?
Hollaka79 isabella221
Posted
Keep the appointment hon. May be a one off but still go regardless having waited this long... Good luck & let us know how you get on 😃
vicky61456 isabella221
Posted