Just because you don't have all the symptoms .....

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Just because you don't have all the symptoms .....

Postby scouse82 » Wed Jan 27, 2016 2:16 pm

Hello all,

My first post! Hope everyone is well.

I just wanted to put my story down and in the hope it will help anyone who is in the same situation I was in.

1998, I had just turned 15. I was having the most intense pain on my left hand side and inconsistent periods. 2 months and 3 week-long hospital admissions later I was sent for an ultrasound - they discovered a "mass" on my left ovary. I was operated on at 6:30am the next morning as it was on the verge of rupturing. It was a 7" cyst that covered most of my ovary and had attached to the bottom of my stomach. The majority of my left ovary was removed and they repaired what they could save. I was told by my gynae that this would in no way affect my ability to have children or indeed affect the rest of my life.

Fast forward to 2008. I'm in a relationship and we're trying for a child - still suffering irregular periods. For 2 years we tried and nothing. Then I eventually do fall pregnant and miscarry at 12 weeks. It took another 6 months, not actively trying, before I fell pregnant and had a mostly straight forward pregnancy - none of the nasty PCOS side effects. Insulin fine, no diabetes, I actually lost weight rather than gained it to start with (I was overweight to start with and had been since my teens even though I ate little and exercised a lot).

After I had my daughter I started to have problems again. Lots of pain, irregular periods ands very heavy bleeding - having to change tampons every 45 minutes even through the night. I knew it was ovaries. My doctor sent me for an ultrasound. The scan revealed that now my right ovary was covered in cysts. I was sent to see a gynae.

First visit with the gynae didn't go well. I'd had a blood test prior to the appointment - the result of which was my blood profile didn't match that of a PCOS suffer, apparently. The only PCOS "symptom" I had, excluding the cysts, was being overweight. I was discharged.

I went back to my doctor and demanded to be tested again as I was gaining weight even though I was on a strict diet. Another scan was done - my right ovary was worse. Back to see the same gynae, and another blood test. Blood test, again, was normal and apparently didn't match the profile. This time though he said despite this there was no denying the presence of the cysts and my ovaries were polysystic, so agreed on the diagnosis there and then.

I was immediately put back on the contraceptive pill, which has helped with the bleeding massively, I only get around 4 or 5 periods a year. With regards to the weight then only option they gave me was metformin, which I took at first but it just didn't work for me. I barely lost any weight and the lovely side effects were starting to affect my daily life. I have had no help or contact since - which I was shocked about as I thought they might want to keep an eye on it!

So basically, if you're reading this and you've got cysts but don't match anything else - it doesn't mean you don't have! I know the guidelines say you should have about 3 of the symptoms before you're diagnosed - I had 2. Make sure you keep on at that gynae or doctor, get those scans done. I live a good life. I'm one of the lucky ones where simply going on the pill has helped me massively. My love and hugs to those who continue to be affected daily by the problems it causes. Stay strong!! xx
Posts: 3
Joined: Wed Jan 27, 2016 1:54 pm

Re: Just because you don't have all the symptoms .....

Postby wilsoja3 » Mon Feb 01, 2016 3:43 pm


reading your story really made me feel so much better about my situation and that I wasn't alone in feeling lost about my dignoisis.

ive been told I have PCOS on the account of no periods and several cysts on both sides (the largest one my left is 12cm one and my right has a 14cm one) my doctors been as helpful as anything but im busy waiting for the gyne and due to not having any other issues im nervous they wont take me seriously. I do have other symptoms (weight loss, loss of appetite, pain regular, sickness and regular infections) but they all seem to dismiss these as other issues yet I know they are all related as last year I only had 2 periods even though I haven't taken any form of contraception since June 2014 yet it wasn't until 8 months into my symptoms they check why this was. im also rather concerned that im going to struggle with the gyne mainly due to the fact im only 22 and TTC.

if you have any tips or advice that would be so greatly appreciated as I feel rather alone at the minute as im not matching all these symptoms but know in my heart that after a year of ttc and failing every time that im going to be a uphill struggle but hearing you've managed without the help of doctors firstly has really put my mind at ease!

thanks :)
May 15 - TTC
Jun 15 - start of problems
Nov 15 - referred for US
Dec 15 - PCOS Confirmed
Jan 16 - Bloods Normal
Jan 16 - Unable to confirm OV
Feb 16 - Started Pregnacare Her & Him
Feb 16 - First Gyn App
Posts: 8
Joined: Fri Jan 15, 2016 12:46 pm

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