I'm having a hard time getting a diagnosis of PCOS?!
Question: I've always been a little chubby growing up and occasionally had some rough menstrual cycles. I'm 27 now.
But, the last 6 years have been crazy. I didn't have my period for 9 months and I wasn't pregnant.
I've also gained 50-75 pounds without any sort of change in my diet. It has been all in the abdomen. I have chronic pelvic pain. I went to gyno and he diagnosed me twice with having a large cyst on my right ovary. Another time I went to the hospital with severe pain and the doctor saw a bunch of small cysts on my right ovary again in a pearl necklace formation. He told that there is definitely something hormonally wrong and I needed to go back to my normal gyno for a diagnosis. I have dandruff like crazy, dry itchy oily skin, skin tags on my neck and armpits, dark patches on my knees and ankles, severe PMS, etc. And this all appeared in the last 6 years.
My doctor sent me for a hormone test and it came back perfect so, they said the rest of the stuff is in my head. Continued...
Answers: I've always been a little chubby growing up and occasionally had some rough menstrual cycles. I'm 27 now.
But, the last 6 years have been crazy. I didn't have my period for 9 months and I wasn't pregnant.
I've also gained 50-75 pounds without any sort of change in my diet. It has been all in the abdomen. I have chronic pelvic pain. I went to gyno and he diagnosed me twice with having a large cyst on my right ovary. Another time I went to the hospital with severe pain and the doctor saw a bunch of small cysts on my right ovary again in a pearl necklace formation. He told that there is definitely something hormonally wrong and I needed to go back to my normal gyno for a diagnosis. I have dandruff like crazy, dry itchy oily skin, skin tags on my neck and armpits, dark patches on my knees and ankles, severe PMS, etc. And this all appeared in the last 6 years.
My doctor sent me for a hormone test and it came back perfect so, they said the rest of the stuff is in my head. Continued...
to be honest, diagnosis, although important, is not always necessary
you already know the symptoms you experience, you already know you have cysts on your ovary
thats pcos
thats it, thats your diagnosis
doctors dont like to diagnos things, or sometimes cant
have you discussed it with them?
have you said is it pcos, i think its pcos, dont these symptoms, and cysts signify pcos
anything that puts it in their brains
,my hormones were always ALWAYS perfect too, for 10 years, but all that time i had endometriosis
and it took for ME to researce all this info, over several years, and go to THEM with the knowledge i gained
and eventually after many gyn apps, i asked for a laparoscopy , and confirmed endometriosis
i was severly anemic and they had no idea, it was so so obvious, i was losing hair, braking nails, and was pale as aghost but still they had no clue
now i know what caused my hair loss,( i didnt at th etime, cos tand the docs said oh its nothing it will go away)
now i know its caused by my endometrios, due to sever heavy bleeding which causes lack of iron
so...go through it with soemone, find one, and you will eventually, that is inclined to agree its pcos
put the idea there for them dont not say anything, otherwise it
pin them down, ask them so what is this, give itg a name please, if they dont then you say is this not extremely like pcos?
never take their word that its in your head, EVER,
or that most women dont have pain, they just say this to get rid of you and make you unsure of what you are already sure of
i know i did for too long too, but they really dont care about you, YOU do, so make them notice you
treatment is expensive (to them) and they dont want to give it
this is your life
and you know somethings wrong,
so deal with it
dont let them get away with this, be a painin their a**
they want you to go away and not come back, so come back, go to your gp and say the same things over an dover, see gyn say it over an dover, moan, whinge, get the same tests then say so why cant you figure it out then if these tests are supposed to be what tells us what it is how come they dont,
be very sure something is wrong,
dont falter in your conviction, and make it clear you wont stop untill its found and named and being treated
make them seem and feel incompetent that they cant figure it out,
but
dont be bitchy, be like you are innocently saying so why is it you cant diagnos this, why dont you know whats wrong, arnt you supposed to be the doctor
oh
and importantly
dont go to appointments alone,
take someone with you, every time,
its helpful if they are more strong in person, strong willed,agressive looking, inquistitive, talkative,
because they will treat you like c**p on your own,
they will abuse the fact that you are alone,
and probably seem helpless, desperate and listen to everything they say and will just agree and then leave
but
if you have someone to back you up, fight your side,
they are more likely to be talked round to your side
listen to your side more and consider anything you have to say
and even try to get rid of you and your new friend by going along with what ever you want and giving you tests or diagnosis or anything just to shut you both up
also once you get one agreeing about pcos, bring it up at every oportunity when you have related issues, and need to visit docs about it
remeind them this doc said its that, diagnosed it,
they dont want to write it down as this makes it official, and they will try to ignore you when you repeatedly say i have pcos when its not int heir little records, but dont let that put you off
just keep at them, keep saying it
every time anything happens, weight gain, pain 'i have pcos, this gyn
but didnt write it in the record'
(or gp or who ever confirmed it,
even if they didnt confrim it- they may only suggest it or accept your possible idea, but whos to know but you and them so dont give names dont be specific, just say the last one i saw, or maybe the one before that and repeat and seem very sure they said this)
even better if you can get them to actually confrim it
to say 'yes its likely to be pcos' or 'it is pcos'
in words to you, or writing,
and show this letter or have them call this person /source while you are at the doctors next , to confirm
or basicaly be very firm in what happened, this doctor said its pcos, and thats it, so why is nothing being written down or diagnosed officially or done about treatment etc,
be frim firm firm)
it puts the issues of diagnosis in their hands not yours and you are calling them onit and doing what most people wont do because they are too polite
use this person to help you, the are after all in the 'caring and health profession'
I sympathise with you. I too have PCOS and put so much weight on. If you are seen to have a cyst then you obviously have it. I am not sure about the hormones though. mine were all over the place. I was referred to an Endocrinologist who I felt was the only one who understood my concerns. He prescribed Metformin for me which helped me loose much weight, and I then fell pregnant! I feel you should consider a second opinon. good luck.
Sorry to say I dont have answer but a comment... I too am going through the same thing! I just KNOW I have PCOS! My ultrasound came back normal so the DR says I dont have it, but in the last 3-4 years I have gained 70+ pounds. It came in spurts... for example once I gained 10 lbs in 7 days!
Heres my symptoms lets see if we have the same...
** I am always tired, but I sleep 10+ hours a day
** I have had only 3 or 4 periods a year for the last 8 years (not on birth control but never prego either)
** My hair is falling out like crazy, I have to use a spray paint type product to look "normal" and Im only 26!
** I have hair on my chin/neck
** I have very high cholesterol
** I have hyptothyroidism
** I have NAFLD (Fatty Liver)
** My feet and legs swell all the time
** I have a small hump on the lower back of my neck
** VERY oily skin
** Cyst-like Acne that lasts for weeks
** Little to no sex drive
Needless to say over the last 4 years I have become very ugly and I hate that I cant find help!
If you ever want to talk email me.. funglamgirl@yahoo.com