Strange diagnosis

[Bookworm5790]

Hi,

I’m wondering if anyone can help me with this if they’ve maybe experienced something similar or have any knowledge of this sort of thing.

Basically, 10 weeks ago I had emergency surgery (laparotomy) for an ectopic pregnancy and had my left tube removed. I was told after surgery that my right tube and both ovaries looked normal. This was open surgery like a c section cut so they saw everything ‘in person’ rather than through a camera etc.

At my six week review I was still experiencing a lot of pain on the opposite side to where The ectopic was, so the right hand side. My GP referred me to the hospital gynae ward (different hospital to the one who did my op as I moved house 4 weeks post op And live in a different part of the country now). They were very thorough and did an ultrasound and the eventual diagnosis was possibly nerve pain, possibly adhesions, possibly I’ve been doing too much and need to rest. Anyway, what shocked me was that they said they’d seen on the US that I had polycystic ovaries. So they’ve referred me to a fertility specialist.

So I feel a little bit confused. Due to excessive hair growth I’ve been scanned, blood tests etc for PCOS about 3 times and always been told I’ve not got them. So I figured I’d ask my surgeon as he’d seen them. I left a message with his secretary and this week I received a letter from the surgeon saying that my ovaries were definitely not polycystic.

I now feel anxious and worried about why the US technician at the new hospital would have diagnosed me with polycystic ovaries if I don’t have them. I had a look online and it says it’s a condition you’re born with so you can’t just randomly develop them. Also other than the hair I don’t have any of the ‘typical’ symptoms. I was referred to the specialist because the doctor said I might have trouble getting pregnant but actually I’ve always been able to get pregnant quite easily but always miscarry or in this last case had an ectopic 💔😭

I read online that pcos can be diagnosed incorrectly but none of these stories mentioned a scan I’m just puzzled how the scan can show pcos if I don’t actually have it…

Anyone? 😔

As far as I was aware, you're not born with Polycystic ovaries. It's triggered in puberty or later by hormone imbalance, weight issues, insulin imbalance, lifestyle, stress, genetics. So potentially could have been triggered by the ectopic? Might be worth getting another scan for a 2nd opinion? Maybe ring your current consultant to ask? Or consider private if you are able.

When I was around 22 I was diagnosed with polycystic ovaries with zero symptoms. I was being scanned for a different womb-based reason. Gynae put me on the pill and told me I might well have trouble getting pregnant and that levelling out my hormones now was very important.

The pill gave me horrible side effects but I took it for 2yrs as I was told I needed it to level out my hormones. But after just over a couple of years I was feeling so rubbish I went back to my GP who referred me to a specialist for polycystic ovaries. You guessed it, I didn’t have PCOS at all! Specialist said that at certain points of the month all ovaries will look polycystic and no way should I have been diagnosed with it based on one scan and no symptoms.

In the end I had my first child at 29 and my second at 31. No issues with my ovaries that I’ve ever known of. Totally bonkers. So I would get a second opinion @Bookworm5790. Good luck.

Hi!
I came off the pill when I was around 27 and my periods didn’t return properly for about a year. I would have one and then miss a few months. I went to gp who referred me for a scan and was told I had PCOS… I was upset and worried mainly about the fertility side. Anyway I got a second opinion and was told by another doctor that everyone has cysts on their ovaries and pcos is a syndrome…just having missed periods didn’t count (as I would imagine just the excess hair alone plus cysts in a scan wouldn’t necessarily ) as a syndrome.
Anyway I got very pregnant easily and have two kids now . During first pregnancy I told them I had pcos and was referred to consultant led care. After one appointment was moved back to midwife care and haven’t had it ever mentioned again .
That’s just my experience but thought it might be useful to hear !