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Struggling to get diagnosis help?

PostPosted: Fri May 27, 2016 9:45 am
by salbritt91
Hi, I'm afraid this is a bit of a long story but I will try condense it a little.

So I've had PCOS symptoms for around the past 10 years (since i was about 14 or so). My symptoms are really bad facial hair, moderate amount of hair on abdomen and a small amount on my back. Thinning of the hair on my head, I used to have gloriously thick hair and now it's virtually transparent. I have acne. I didn't have a period until I was about 21 (I'm 24 now), I got a proper cycle every month like clockwork and I put this down to the fact I lost 5 stone and I did lose the weight extremely easily though I am still very overweight, I weigh around 210lbs.

So when I was younger I wasn't in the right mind frame to deal with the PCOS symptoms and go to the doctor to get this looked into as I had agoraphobia at the time. 3 years ago, all better from the agoraphobia I decide enough is enough and I go to my Dr tell her my symptoms and she orders bloods and a pelvic ultrasound, both came back normal. No explanation for my symptoms, basically told I just have to live with it, given Diannette and an antibiotic cream for my acne.

Roll onto December last year, despite being on my contraceptive I fell pregnant (to be honest I wasn't taking my pill at the same time everyday so that more than likely contributed). Unfortunately due to circumstances ( me only being with my partner for 2 months, financial and housing and all other factors) me and my partner decided to have a termination which I had in January of this year. I never thought I would ever have an abortion and I regret it more than I could ever possibly express! it was the single most horrific thing I have experienced and if I ever have the fortune to fall pregnant again there is no chance on this earth I would ever do that again. But I digress.

I had the implant put in at this point. So during the scan for that they found a cyst on my right ovary measuring arounc 7cm by 6cm. And I was told to go and ask my GP to refer me for another scan just to check it out but I was told it just looked like a normal fluid filled cyst nothing sinister. So went to GP reffered for scan, had scan, scan showed one small 1cm cyst and a few follicles, nothing major!

I also had my bloods done again which showed raised testosterone and low FSH and LH levels. so my doctor said that she would prescribe me metformin to try and help my symptoms but did not give me a firm diagnosis. However before she would prescribe anything she said she wanted to write to gynea at my local hospital and see if they wanted to see me first.

inbetween my drs appointment and my appointment at gynea I had my implant removed as it is the worse thing I have ever come across and am now back on diannette. So I had my appointment with gynea yesterday. They took my history and examined me and said that it was odd that my FSH and LH levels were so low, I forget exactly what they were. The consultant I was said it may actually be an issue with my adrenal glands, hinting toward congenital adrenal hyperplasia, the possibility of a tumour, or it being PCOS. So she took a swab to check for infection, redid my blood work with some added bits I think and I'm being sent for a scan of my abdomen and pelvis.

I'm aware that my blood work from yesterday is back and all my levels are normal. And I have a sneaking suspison that my scan results will be the same.

All I'm wanting is to finally know what it is that is wrong with me. How can a person have all these symptoms and all test results come back normal. I was told I will only be diagnosed with PCOS if I meet 2 of the 3 criteria, So I have to have the symptoms, dodgy blood work and or a dodgy scan to back it up.

I just feel in limbo land not reall knowing what it is that is wrong with me and what will be done about it. Has anyone else been through a similar thing? had all test results come back normal but had all the symptoms?

The next soonest appointment with my gynea is the 11 of august so I wont know anything till then. Seeing my GP next week as the gynea worried me by saying Diannette isn't a very good contraceptive, and i get no other benifits from being on it acne and facial hair show no improvements whatsoever.

Oh to of been born a boy with none of these issues haha. Thanks for reading, any advice would be hugely appreciated

many thanks!

Re: Struggling to get diagnosis help?

PostPosted: Fri May 27, 2016 10:23 am
by Hols969
Cysts are only a symptom and not the cause so can come and go - blood test can also be hit and miss too - was the specialist a gynaecologist or endocrinologist?

Re: Struggling to get diagnosis help?

PostPosted: Sat May 28, 2016 11:42 am
by salbritt91
It was a gynaecologist that I saw. My blood work and scans always seem to be miss rather than hit sadly.

The gynaecologist I saw seemed to think it would be more likely an adrenal issue as my FSH and LH levels were very low. But on the blood test ive just had the levels are FSH 7.4 and LH 2.4 so within normal ranges.

I've got to wait now until August for my next gynae appointment.

Re: Struggling to get diagnosis help?

PostPosted: Sat May 28, 2016 1:19 pm
by Hols969
I would ask to see an endocrinologist as pcos is their area and not a gynaecologist- lots of ladies are diagnosed by symptoms only especially as the cysts are a symptom and not the cause and blood tests can vary hugely- some ladies have normal blood tests but have cysts so if you don't have any joy see an endocrinologist