Diagnosed with PCOS after 23 Difficult Years

by Jade
(Herefordshire UK)

(Ed. Note: This story exemplifies the ignorance and misunderstanding that some doctors and family members have about PCOS. Don't let others make you feel "wrong". You have to doggedly persist in your quest for better health, regardless of what others say.)

I started my periods at 13. Right from the beginning they were irregular and heavy. I seemed to be constantly having a bleed. I also got really bad spots on my face and i started getting really bad Depression. It was like flicking a switch, from a normal girl to a Depressed, aggressive, exhausted heap!

When i was 14 my mother took me to see my GP as my periods were taking over my life, and i was having six week bleeds at a time. Everytime i went out i would flood heavily and soak through my clothes. My parents could not understand it, as my elder sister had normal menses.

The GP i saw was totally unsympathetic, and when my mother asked how i could do Physical Education at school, as i bled so heavily, i was told to wear two tampons and a sanitary towel! A further two GP's were equally unpleasant.

At 18 my mother took me to see a gynaecologist whom prescribed Northisterone.( A few years later, i was reading my medical notes, at my doctors surgery, only to find this gynaecologist had written back to the GP, that she should stop sending him patients, with nothing wrong with them!)

I married at 20 and saw a second gynaecologist who did a D and C, and of course found nothing physically wrong with me. As it is an endocrine condition.

During that time because i was four stone over weight, i did a strict exercise and diet regime. Without knowing it i was actually doing the correct thing for pcos.For six months i had no depression, or irregular bleeds. So i became pregnant quickly with my son.

While pregnant my blood pressure shot up and i was in hospital for six weeks with preeclampsia.
When i came home my periods became prolonged and heavy again and my depression was so bad i had severe postnatal depression.

For the next dozen years i gave up going to my doctor with it.

The condition totally affected my life. My husband and i decided to have no more children as my depression was so severe, i felt suicidal most of the time, and physically i could not work and even cooking meals etc i could not do i was so tired. This made me feel guilty and worthless as i was letting my husband down and i did not know what was wrong with me.

I was put on anti depressants for years and even tried things like hypnotherapy as i was trying to change my mind set, as i thought it was all in my head!

I became practically a recluse unable to go out because of my bleeding. Having in desperation to wear nappies/ diapers cut up, as sanitary towels could not protect me. We also were below the poverty line for a long time as i was unable to work because of the bleeding. This caused huge rows between my husband and i because of the stress. And my son witnessed these arguments which i feel so guilty about even though it was years ago.

We nearly lost our house and it was only scrimping with money that got us back on track. I have done some work recently. My job is on my own with access to a toilet. And i am on anti depressants and beta blockers to cope with it.

This last year my bleeding got so bad and i was sleeping all the time, i was put on iron tablets as i had become borderline anemic.

Then i got a beard. The hair came from nowhere, i was horrified. Constant plucking and shaving and then having electrolysis for it. No one knew i had it as i was constantly removing it, but i was devastated.

I was sent to another gynaecologist because of the anemia and excess hair. The consultant did not even have my notes with him, and told me to have a hysterectomy as he thought i had fibroids from his physical examination of me!

I had a second opinion as i did not think this was right and this gynaecolgist took my bloods and tested them. He could not believe no doctor or gynaecologist, had ever taken blood tests in 20 odd years. When he got it back last week, he told me my hormones were wrong and it was the highest level of testosterone he had ever seen.

He said i displayed pcos all along and i was to read up about it on the internet. Which is where i found this site. I have been told to do a special diet and exercise and have been told i am more at risk of diabeties because i am so high in testosterone and my weight is up.

I have brought the PCOS natural diet solution book and i am going to do the diet.

I am overjoyed to know what is wrong with me but so angry it has taken a chunk out of my life by not being diagnosed earlier.

My sisters and mother have been so supportive, also my husband, and are all 'action stations' to help me with the diet and stress management.

Unfortunately my mum-in-law and sister-in-law think i am over reacting to the condition. They queried whether i really had it. And thought i should just get on with it. They think i do not need to do the diet and that i was no more at risk of diabetes than any one else! My sis-in-law even said that men don't get diabetes from having testosterone!

Though i know for my health i must do this. I shall take my own food to their house if they cannot support me. As i was so upset by their attitude. But that is life. And when i am better from the main symptoms, i know it is not curable. I will give a update on here.