Suspected PCOS... Wait what?!?

[CycleGirl20]

I just got a letter from my clinic with some details on it. It says as well as a fibroid "suspected PCOS & PC like ovaries". They didn't mention that at my appointment or on any of my previous 3 ultrasounds. My periods are regular and 28-30 days. My androgen and testosterone hormones are normal according to my blood tests. I've never had oily skin, thick hair on my body or any problems with hair thinning. My BMI is 30 and I do find it hard to lose weight and keep it off even with a lower calorie diet, but then so do many women. My ovaries on my scan aren't enlarged (7-8cm).

The doctor did say that the fact I ovulate on day 17 or 28-30 usually is too late. But I didn't think that was a sign of PCOS.

Has anyone experienced similar? Did you have PCOS?

Hi lovely, I don't have experienced answers for you but I feel like I'm in the same place as you
Did your day 21 bloods come back good too?
I had an AFC for 34 at baseline and over 40 follicles when eggs collected. Ended up with 11 mature eggs from 17 collected.
When I got my day 5 update the doctor made a brief mention of PCOS but it's never been said before and he always said he couldn't confirm as he didn't know my history?
We're h explained right now with everything else coming back fine and 4 in the freezer. Wondering if PCOS might be our answer to unexplained. I do have regular periods between 27-29 days but they can be light, only last 2.5 days and no pain so I have wondered.

Did they say anything else to you? I don't know how they test for it or how to push but no one else has even suggested it to me before

Hi @willithappen. Thanks for the reply. I told the doctor I had been using LH tests and had positives with those. I've also used them on occasion outside of my normal LH spike to confirm I got a negative result and I did.

I don't know how they test for it either. It says on the NHS website that you have to meet 2 out of 3 criteria. One of the criteria is confirming PC ovaries on a scan and one doctor said I didn't then this one suggested I might. I've emailed them with questions.

Its good that you have requested further clarification.

re your comment:-
"I've never had oily skin, thick hair on my body or any problems with hair thinning."

Me also but I was still diagnosed with PCOS all the same based also on bloodwork and ultrasound. Its a very individualistic disorder that can affect each woman with it very differently. The commonality is the cystic follicles on the ovaries. The cystic follicles associated with PCOS can and do disappear, only to be replaced by further cystic follicles; this is also why regular ultrasound scans should be performed.

Have you ever had a day 2 blood test to check and compare your LH level against that of FSH?. That should have been done by now.

I am not that surprised either that it was not mentioned at your previous ultrasound scans; sonographers rarely if ever comment openly leaving it to the gynaecologist to tell the patient of the findings.

Is the doctor certain that you ovulate on day 17?. If you mean OPKs as well these can be very problematic to use at all if PCOS is suspected. These kits measure LH levels and as these are often elevated in women with PCOS to start with, the kit can give a misleading positive result. Spontaneous ovulation with PCOS can happen but cycles are more often than not anovulatory ones. It is indeed possible to have periods without ovulating.

Thanks @AttilaTheMeerkat. Do you have regular periods? I had a scan where they said they could see I was about to ovulate and one just after where they said it seemed I had. I usually have an LH spike, so no or a very faint second line on the test on day 10-14/15 then it going up to a spike on day 16 and back to barely any line or none.

How do you check LH to FSH? I had my day 3 and 21 bloods. The doctor said it was normal.

No, my periods have always been irregular since onset of menses at 14.

There can easily be more than one LH spike every month so it is not the case that a spike is followed by ovulation.

What levels did you receive on both day 3 for LH and FSH and on day 21 for progesterone?.

With a day 3 test the level of LH needs to be compared to FSH; usually these hormone levels are the same or very similar. If LH levels are consistently higher than FSH it can indicate polycystic ovaries,

My day 3 was lh 5.8 & FSH 5.5. Day 21 progesterone was 39.

I had repeat day 3 as well (by chance) which was LH 4.4, FSH 7.7, testosterone 0.8 nmol/l, Androstenedione 0.81 ug/l, AMH 4.67ng/ml

PCOS is so individual and very often missed in primary care because of the many misconceptions around it. I recently read this post about the 5 most common misconceptions which was quite interesting www.selfishdarling.com/female-body/5-common-misconceptions-about-pcos/