Struggling to get a diagnosis?

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Struggling to get a diagnosis?

Postby Jpowjo » Sun Feb 16, 2014 3:41 pm


Completely new to the board and PCOS in general, so apologies in advance for any stupid questions! I just wondered how everyone had got on with the process of being diagnosed and if anyone had struggled at all?

I've had acne since I was around 13 (not unusual as a teen, but I'm now 26 and it's getting old!
I'm very happily married but have a very low sex drive and have difficulty 'doing the deed' as it can be very painful.
I also have excess unwanted hair and periods are usually every 5 weeks rather than 4 although at times last year they ranged from 4-6 weeks and went a bit haywire!
Regular BMI though and at least periods are still happening, so I'm very lucky on those two counts.

All of these combined led to the doctors sending me for an ultrasound at which, on the day, I was told everything was normal.

Months later, I went back for a routine appointment for my acne medication to be represcribed and mentioned that my periods had been a bit off (4-6 weeks rather than the normal 5). Doctor looked back at scan notes and said oh yes, they found some cysts. Shouldn't be anything to worry about though, come back if it continues.

Husband and I had started talking more seriously about children and the symptoms I was having were playing on my mind. I went back, this time to a different doctor and she arranged a blood test. Results came back with high prolactin level. Organised a second set and prolactin was back to normal but thyroid hormone (which she had forgotten to check in first test) was abnormally high.

She's diagnosed me with hypothyroidism, but assured me it doesn't affect fertility and is putting me on meds to control it.

When I told her I was surprised and that I had been fairly convinced I had PCOS, she said 'well we still can't rule that out, as your symptoms are in line with pcos'. If I could turn back the clock, I'd ask what the next steps were but I think I was so thrown by the diagnosis, my mind wasn't working as it should have been!

Should I ask to be referred and if so, who to? We're hoping to start trying for a baby later this year so I could do with knowing exactly what we're up against. I'm finding it hard work at the doctors. They're really lovely at my surgery but don't seem forthcoming with information? I'm feeling quite lost and struggling to understand both the conditions :(

If anyone else has had this problem and come out the other side, I'd really appreciate some advice!


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Re: Struggling to get a diagnosis?

Postby Hols969 » Mon Feb 17, 2014 10:12 am

I would actually ask to be investigated for endometriosis as pain during sex is a symptom of this (and not pcos) but we have quite a few ladies on here who have both pcos and endo, I presume your smears are up to date as well, if not then it would be worth requesting a smear as well. Have you mentioned the pain during sex to your GP?

Often you will not be referred for fertility until you have been trying for 6-12 months depending on your area, it can be longer if you have not been diagnosed as pcos. The thing is with the cysts is that they can come and go and are only a symptom of pcos and not the cause (v misleading name), so you could have another scan and see lots or see none. I also find it odd that your GP has said your symptoms are in line with pcos but haven't given you a proper diagnosis especially if some cysts were found during the scan. So yes I would go back, you could be asked to be referred to an endocrinologist as they deal with both endo and pcos so would be a better bet (they wont help generally with fertility though).

You do sometimes need to push GP's a bit and get the information you need (write everything down you can think of as well to ask), also the fact that sex is painful is not going to help the ttc road as well (you can cope with the low sex drive to a degree as you just do it!!) A lot of us when TTC by the end the sex drive has dwindled but it is a means to an end really and you do keep that in mind!!

Good luck, let us know how things go.
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Re: Struggling to get a diagnosis?

Postby Jpowjo » Mon Feb 17, 2014 7:15 pm

Thanks for the reply Hols, it's much appreciated. I've mentioned the painful sex several times to several different doctors - it's been ongoing since I was about 20, so almost 7 years. They've done examinations and not found any problems. I think I should be ok on the endometriosis front as it's a different kind of pain to the type listed as a symptom and I'm fairly sure it's being caused by dryness, which I think is a less common symptom of pcos (or so Google tells me! I'm having to look everything up for myself as the doctors really aren't very forthcoming!

I will definitely push to try and either rule pcos out or get a firm diagnosis. I'll try and be a bit more pushy!!

Thanks again :)
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