u/Mpxxb

I’m 25F and honestly I’m at the point where I feel like I know absolutely nothing about my own reproductive health despite having been investigated for it since I was a child. I’ve had problems with my periods for as long as I can remember. I remember asking my GP when I was quite young why I wasn’t having periods and being told they would come with age. Obviously… they didn’t.
When I was around 14/15, I had an ultrasound for stomach pains. During that scan I was told my ovaries looked “bulky” or “plump” and that I would probably be getting my periods soon.

I eventually had my first period at around 15. It was extremely heavy, painful and lasted around a week.
And then… basically nothing. I have never had regular monthly periods. Sometimes I’ll have one month and then another the following month, sometimes I’ll go 5 months without one, and I think the longest I’ve gone has been somewhere around 8–12 months without a period.

So, naturally, I’ve been backwards and forwards to doctors about this for YEARS. 🫠

At one point I was referred to a hospital in another city and had blood tests which showed extremely high prolactin. I then had one of those tests where they put a cannula in and take blood at different points over a few hours, and my prolactin was high throughout. I had an MRI to check for a pituitary tumour. They couldn’t get the contrast into my arm, so the MRI was done without contrast, but apparently they were happy with the result. The doctor from another city who organised the MRI & Cannula also said I had PCOS and gave me a leaflet about Endo Cancer and sent me away 🥲

I also had another ultrasound around that time and was told there was some scarring around/in my ovaries.
I was then referred to a gynaecologist in my own city, who told me he didn’t think I had PCOS because my testosterone wasn’t high. This is where the PCOS saga gets confusing. One doctor has basically said I probably have/had PCOS. Another has said I don’t because my testosterone isn’t high. I’ve been told I fit some of the criteria but not others. At various points I’ve essentially been told “yes, probably PCOS” and then “no, definitely not PCOS.”

I was eventually referred to endocrinology, and I’ve been seeing the same doctor roughly once a year for a few years. My prolactin remained an issue and I was prescribed cabergoline, which actually caused me to have a period because I needed to have blood tests done while menstruating. I don’t remember exactly what those results showed, but apparently nothing particularly dramatic came from them.

I’ve also repeatedly been told to lose weight, which I have been working on. Earlier this year I tried Mounjaro for about a month after hearing about people with PCOS using it. I couldn’t afford to continue because I was self-employed at the time, but interestingly I did have a period while/after taking it and it helped me lose some weight. My endocrinologist was actually pleased with the weight loss and said that if I could afford to go back on it, she would support that, although obviously it isn’t routinely available on the NHS for this unless you meet the relevant criteria.

Then we get to the current situation. I had a transvaginal ultrasound in December. I heard absolutely nothing about the results. I contacted my GP and they couldn’t give me the results because they hadn’t received them from the hospital. I contacted the hospital and couldn’t get them either without going through the doctor who had requested the scan, and I didn’t have contact details for them. Eventually I went to my endocrinology appointment recently. (8 Months after scan).

She was actually about to send me on my way when I asked if she had the results from my scan.

She looked at them and basically went:
“Oh yeah… here they are.” She printed them out for me and sent me on my way.

So I’m walking back to work from the hospital reading my own ultrasound report and discovering that apparently I have a bicornuate uterus. I have NEVER been told this. I’ve had multiple scans over the years and nobody has ever mentioned it to me.

The report also says I have a cluster of small cystic components in the lower uterine segment, and that both ovaries are bulky and contain more than 20 small follicles.

Again… nobody mentioned any of this to me.

There was also another fun little surprise in the report.
When I was around 15, I was told I had a rotated kidney. I knew about that. Apparently it is also a duplex collecting system, meaning it has two tubes. Nobody ever told me that either. 😂

So now I’m sitting here thinking: What the actual fuck is going on with my reproductive system?

I’ve spent years being told:
PCOS.
No PCOS.
Probably PCOS.
Not PCOS because testosterone isn’t high.
Your ovaries look polycystic.
Your ovaries don’t mean you have PCOS.
High prolactin.
Here’s some medication.
And now apparently I have a bicornuate uterus, >20 follicles in each ovary and a bunch of other things that I apparently wasn’t told about.

I’m not even necessarily looking for someone to diagnose me over Reddit. I know that’s not possible.
I’m more interested in hearing from people who have had similar experiences.

Especially:
Has anyone else had very irregular/absent periods for most of their life but never really got a clear explanation?
Has anyone had PCOS diagnosed and then undiagnosed because of normal testosterone?
Has anyone had high prolactin alongside irregular/absent periods?
Has anyone with a bicornuate uterus had it discovered YEARS after having other ultrasounds?
If you have a bicornuate uterus, did you have further imaging to determine how severe/complete it is?
Did having a bicornuate uterus affect your periods at all?
Has anyone had a bicornuate uterus AND PCOS/PCOS-like ovaries?
And, probably most importantly, what did you actually do when you finally got answers?

I’m currently trying to get another GP appointment because I want to actually understand what is going on before I start thinking seriously about having children.
I don’t know how significant my bicornuate uterus actually is, whether mine is mild or more pronounced, whether I need further imaging, or whether any of this explains why I’ve barely had periods throughout my life.
I also don’t know whether I should still be pursuing a PCOS diagnosis or whether something else could explain the whole picture.
I feel like I’ve spent the last 10 years being passed between different doctors, getting one piece of information at a time, and somehow I’ve ended up at 25 with a reproductive system that feels like a surprise box. 😂

If anyone has been through something similar, especially in the UK/NHS, I’d genuinely love to hear what happened for you and what you eventually got investigated/diagnosed with.
Please don’t tell me to just “lose weight” or that I need to see a doctor, I am doing both. 😂 I’m mostly looking for experiences from people who’ve actually been through this.