PCOS with High Testosterone - Should we start trying earlier?

[7upname]

Me [F29] and my husband [M30] are planning when would be the best time to have kids. Ideally, we don't see ourselves becoming parents for another 2 years. But knowing that I have PCOS, I am a bit anxious if we are putting it off too far. I got some hormonal tests done during my annual this year and found that I have pretty high testosterone, bioavailable 9.6 NG/dL and testosterone, total at 43 NG/dL. I also have high AMH - 10.75 NG/mL.

I have been on birth control pill for the last 3 years and took a break to see how my body reacted (not well). My GYN advised me to go back on the pill to prevent cysts popping up and stop just before we want to start trying.

Would this be the safest way? Am I taking a risk by putting off pregnancy for so long? Would it be beneficial to get on birth control, fix my lifestyle, and then start trying when I am in a better place?

My PCOS is really making me worried about concieving Would love to hear experiences of people who were in the same situation!

 

[kuskus1]

@7upname I’m a 31 year old woman with PCOS — I think you’ll be fine at 31-32, honestly. I don’t view a two year wait in your late 20s/early 30s as “putting off pregnancy for so long” — would be different if you were 10 years older! But a lot of times, women with PCOS have higher ovarian reserves later in life, for lots of reasons (irregular periods, etc.) (source here32097-6/fulltext#:~:text=It%20has%20long%20been%20assumed,reasons%20explained%20below%2C%20speak%20differently)!) Keep watching your bloodwork and trying different (safe) supplements and other interventions — one of the ways to lower testosterone medically is spironolactone, which you can’t take when TTC anyway, so having other ways to manage the hormonal imbalances is important. If you’re really worried, you could ask for a transvaginal ultrasound (antral follicle count) and use that to make decisions, both objectively and compared to the average for other 29-year-old women. I did this and I have like 50+ follicles compared the average 31 year old’s 13-25. I attribute this to a lot of things, but ultimately knowing this helped me turn down the temperature a lot on the biological clock of needing to conceive soon/“running out of time.” Maybe similar info could be helpful for you too.

Best of luck, thinking of you!

 

[blezzed]

@kuskus1 I looked at the journal article you cited and I think it actually says the opposite of what you're claiming.

It is indeed a lingering die-hard belief that women with PCOS enjoy an extended window of fertility as compared to their regularly ovulating counterparts. However, actual facts, sparse for reasons explained below, speak differently [. . .]

Remarkably however, the Finland study revealed that PCOS women delivered at the same age as controls. Furthermore, as it could have been expected, women with PCOS symptoms had more often consulted for infertility than their matched controls. Ultimately however, PCOS women had a lower rate of having ≥2 deliveries than their cycling counterparts thus, ending up with smaller families. These findings therefore challenge the concept that ultimate fecundity is unaltered in PCOS and that just its accomplishment is delayed [. . .]

Women whose AMH is high despite being >35 years of age, whether fulfilling PCOS criteria now or in the past, should not be told that they have 20-year old ovaries. Such comment and particularly the underlying thinking that there is time is not just erroneous, it is more importantly misleading. Based on Ahmad et al.’s and other data, we have to consider that women with PCOS have a more rapid decrease of their ovarian reserve parameters and similar age-related decrease in fecundity compared to normal controls.

The lesson that ovarian reserve parameters decrease more rapidly in PCOS women should be heard loud and clear together with the awareness that the extended window of fertility may not exist in PCOS.

Tl;dr-- women with PCOS may exhibit higher ovarian reserve parameters, but this doesn't translate to higher fertility later in life. Furthermore, at least one study (the Ahmad et al cited above) found that women with PCOS experience a more rapid decrease in ovarian reserve parameters compared to non-PCOS comparators.

I have PCOS myself, so I totally get the anxiety surrounding it. I'm also a biomedical researcher and think it's super important to understand the science surrounding PCOS and fertility so we can make informed choices that balance fertility stats against our other, very real life considerations. I'll write a separate comment about what this looked like for me!

 

[7upname]

@kuskus1 Hmm, I think getting an ultrasound would definitely be helpful, thanks for the suggestion!

 

[someofthem]

@kuskus1 Are antral follicle counts on birth control accurate?

 

[blezzed]

@7upname I'm a 29 yo grad with PCOS. In case you're interested in my experience, I started TTC my first at 26 and took 15 months (10 ovulatory cycles in that time). My cycles were incredibly irregular, which made TTC difficult and stressful. Exercise, Ovasitol supplements, and metformin all helped me get pregnant. (The latter two were prescribed by my endocrinologist, though Ovasitol is available over the counter.) We started TTC #2 much earlier than we otherwise would have based on this experience, and were lucky enough to get pregnant right away that time!

I was off the pill for 2 years during the first round of TTC and never had an issue with cysts (and my RE never brought that up). It might be worth consulting a reproductive endocrinologist, who is specifically trained in conditions like PCOS, to ask their opinion for the best way to regulate your cycle before TTC. A lot of OBGYNS have very rudimentary understanding of the hormonal profiles behind PCOS.

Ultimately, I think your decision should come down to how many children you and your partner would like to have, and how ok you'd be if you had fewer than that number. If you'd only like 1 or 2 children, I think waiting until 31 to TTC is likely pretty safe, even with known PCOS. As Prestigious Swan said, waiting 2 years will likely not make a huge difference in your fertility. In our case, we definitely wanted at least 3 children, so it was important for us to start as soon as we both felt comfortable to give ourselves plenty of runway (which I'm very glad we did).