Trans-competent health care doesn’t stop after medical transition. As trans people, we still have medical needs like everyone else: we can still get colds and flus and COVID-19, we still need routine preventive care and we still manage an array of chronic conditions. In all those cases, it helps to have a provider who’s trans-competent—someone who can help us navigate our health needs in the context of the emotional, hormonal and surgical alchemy that’s made us who we are.
Amy Weimer is the medical director and co-director of the University of California, Los Angeles’ Gender Health Program, which offers comprehensive medical services to transgender and gender-diverse people. She helped found the program in 2016 to make trans health care easier for people and their families to find. It’s a one-stop shop for primary care, hormone management and surgical procedures for both Los Angeles residents and those in the general area who can’t find care locally.
Weimer is board certified in both internal medicine and pediatrics and provides primary care and hormone management for people of all ages at her UCLA clinic. Many of her patients have polycystic ovarian syndrome (PCOS).
Xtra spoke with Weimer about the intersection of PCOS and trans health care.
How would you describe polycystic ovarian syndrome (PCOS)?
We diagnose PCOS when a person meets two out of three criteria.
The first criterion is oligomenorrhea—infrequent menstrual periods—typically with at least 35 days between periods, or less than eight periods per year.
The second criterion is androgen excess, either via a lab test that shows testosterone is too high or a physical manifestation of high testosterone, like hirsutism (abnormal hair growth) on the face or the chest, severe acne and male pattern hair loss.
The third criterion is polycystic ovaries. It’s normal for the ovaries to develop multiple follicles every time the ovary is preparing to ovulate or release an egg. Once the egg is released, all the other follicles shrink. With PCOS, the egg doesn’t release consistently, and so these follicles grow and grow and grow, then eventually wither down and appear as multiple cysts. The cysts are visible on an ultrasound.
Some articles mention abnormal bleeding, like excessively heavy bleeding, as a symptom. Can somebody with PCOS have abnormal bleeding without 35 days between periods?
Somebody with PCOS can have irregular bleeding, like bleeding in between cycles or unusually heavy bleeding. But to meet the first criterion for diagnosis, they would have to have infrequent bleeding.
Is there ever pain associated with those ovarian cysts?
No. Those cysts should not be painful.
It’s actually pretty common for people without PCOS to have an ultrasound that shows a couple of cysts on the ovaries. In people with PCOS, we typically see 20 or more cysts on each ovary. In either case, though, cysts should not be painful.
Cysts can develop on the ovaries when a follicle has grown and it doesn’t shrink down the way it is supposed to. If the follicle continues to grow and the cyst gets too large, it can cause some pain.
When we say elevated testosterone in somebody with PCOS, how elevated are we talking?
Not very elevated. It’s usually within two times the upper limit of what’s considered the normal range for cisgender women.
If we’re seeing testosterone levels that are more elevated than that, then we need to be thinking about other causes. For example, tumors can develop in the body that produce androgens, and extraordinarily high androgens will result in much more significant virilization or masculinization of the body.
In PCOS, it’s relatively subtle elevations in androgens.
Going on testosterone raises androgen levels. Does that mean that people on T are going to experience the same issues as someone with PCOS?
That’s a great question. The answer is that it doesn’t seem to.
If I take my population of people not on T who have PCOS, they’re much more likely to have prediabetes or diabetes or be obese than my patients who are on T.
So clearly PCOS has more going on biochemically than just the elevated androgen levels. I think that’s what that observation really can show us.
Right, and we don’t know what that other biochemical process is.
We don’t. We definitely do not know all of the puzzle.
Are PCOS and gender dysphoria somehow intertwined?
For quite some time, we thought that PCOS was more common in masculine-identifying people, but when well-designed studies are done, people who have PCOS aren’t more likely to have a gender identity other than female. They are more likely, however, to report feelings or experiences of not aligning as much with femininity. PCOS doesn’t necessarily change their sense of what their gender is, but it can change their experience of their gender.
Conversely, when we look at transmasculine people, they do not appear to be more likely than cis women to have PCOS when we use good diagnostic criteria. But transmasculine people are more likely to have higher androgen levels even before starting treatment with testosterone. There are other medical conditions besides PCOS that can increase androgen levels in the body. And we know from other data that if a person is exposed to androgens, either in utero or later in life because they’re overproducing them, somehow they are less likely to have a female gender identity.
Are there instances where people come to you saying, “I’m pretty sure I have PCOS” and it turns out it’s something else?
Yes. Some people come in because they have a family history of PCOS, or what’s presumed to be PCOS, and their periods are irregular. But when we do a workup, we either don’t find all of the criteria or see that their thyroid is out of whack, so we treat the thyroid and then periods start to become normal again. Other things can definitely drive some of the symptoms.
We can get into danger in medicine if we get too laser-focused on one possible diagnosis—we always need to be thinking broadly about what else could be causing these symptoms.
Do we know why PCOS develops?
There definitely seems to be a hereditary component to it. If a person has a parent with PCOS, it’s more likely that they will have PCOS as well. Several genes seem to be directly related to PCOS, but even those probably account for less than 10 percent of PCOS cases. So, there are many more contributing causes that we don’t yet understand.
Exactly what’s contributing to PCOS and why it develops is unclear. It seems that the underlying process is an abnormal signaling from the brain to the ovaries that causes the ovaries to produce too much testosterone, and the adrenal glands to produce too much DHEA-S, or DHEA sulfate (a hormone that’s produced by the adrenal glands and downstream metabolized into testosterone—it can become the active testosterone molecule). In many people with PCOS, we see elevated levels of both testosterone and DHEA-S.
All this is to say: we are still learning.
So it seems like the ovaries overproducing testosterone, and then the adrenal glands overproducing DHEA-S, results in higher than normal concentration of testosterone in the body, which creates all of these other effects. Why does this cause problems?
Four groups of health consequences can arise because of elevated testosterone and DHEA-S.
Let’s start with the direct effects on the uterus: whenever a person is not ovulating regularly and having regular menstrual cycles, the lining of the uterus can build up between periods. Over time, this becomes an abnormal thickening of the uterine lining—we call this endometrial hyperplasia—which increases the risk for endometrial cancer. That’s one very well-known potential complication.
The second group of complications has more to do with the metabolic system, and we care about these complications because they are associated with cardiovascular disease, heart attack and stroke risk.
It remains unclear exactly why these occur in association with PCOS. Obesity is much more common in people with PCOS, and when a person has obesity, they tend to carry more of that weight in the abdomen rather than in the hips and pelvis. And we know that an increase in abdominal fat has more negative health associations.
We also see insulin resistance. Our bodies become less reactive to the insulin that we typically produce in order to keep our blood sugars in the typical range. Over time, our blood sugars start to increase, and that results in a higher risk for developing diabetes. We see abnormal cholesterol panels often, and we also see elevated blood pressure. Some of these things may be directly related to obesity, but some of them also seem to be independent of whether or not a person has obesity.
The third group of complications has to do with fertility. Infrequent ovulation can result in difficulty getting pregnant, or retrieving eggs for fertility care.
Finally, we definitely see people struggle more with mental health. In people with PCOS, depression and anxiety rates are higher, disordered eating is more common and body image distress is more common.
So the four groups of health consequences are endometrial cancer risk, metabolic complications, fertility concerns and mental health concerns. How do we address the endometrial cancer risk?
If the person’s not menstruating regularly, then we start something to help shrink down the endometrial lining and prevent the risk of cancer. The most commonly used tool is combined oral contraceptive pills that have both estrogen and progestin. The combination really works to shrink the endometrial lining; it doesn’t feminize the body, it just regulates hormone levels and controls bleeding the best, which many of my patients like.
I ask patients, “Are you comfortable taking a combined oral contraceptive?” And if they say, “I just really don’t like the idea of having an estrogen pill,” then we talk about other options, like progesterone-only methods. Some medical conditions, like a predisposition to blood clot formation, also suggest that a person shouldn’t take estrogen. So we’ll use other methods in those circumstances as well.
If a person isn’t comfortable taking those sorts of hormones, there are other ways to monitor endometrial risk. For example, you can do periodic ultrasounds to keep an eye on the thickness of the endometrial lining, and then if it does start to get too thick, reassess the need for medication. And if a person’s considering a hysterectomy for other reasons, then obviously that would address the endometrial cancer risk.
How do we address the metabolic risks?
That’s individualized based on whether a person’s showing any metabolic complications. We keep a close eye on prediabetes screening, blood pressure and cholesterol. If those things fall significantly out of the normal range, we treat each one separately.
Those are things that are common in humans, and so we’re often monitoring them anyway with annual physicals. It usually doesn’t require much beyond that, but I am more vigilant in my folks that I know have had a diagnosis of PCOS.
I want to zoom in on the intersection between the metabolic and mental health components. If somebody has PCOS, metabolic complications and disordered eating, where do you go from there in management and treatment?
We see a lot of people who have obesity and also have a history of disordered eating or active disordered eating. We have to be really, really careful about how we support these patients, because we don’t want to worsen the underlying psychological processes that may be leading to disordered eating. So my preference is to get patients connected with an eating disorder recovery program, where they have nutritionists and mental health professionals in one space to help.
That’s hard to find, though. Those resources are rare. So the next best thing is to refer them to a mental health professional to start working on the disordered eating brand patterns, and start to shift those so that we can provide support around some of the lifestyle measures.
But we do need to tread quite cautiously. Most primary care providers don’t have the time or the training to drill into the detail that’s required beyond medication management.
How should transmasculine folks who have PCOS approach fertility?
The fertility discussions are becoming more common as we see more gender-diverse people interested in parenting. The message that I give my PCOS patients is: if you want to pursue parenting at some point in your life, get engaged with a fertility expert early on in the process.
In people without PCOS, we might say: stop your testosterone, give it two or three months, and you’ll probably start ovulating again and you can try to get pregnant.
In people with PCOS, we would say it’s best to get a good fertility assessment done, because there are medications we can give that improve pregnancy rates.
We don’t want to make assumptions about what our patients’ fertility goals are. People often feel differently about this part of their life when they’re 30 than when they’re 18 or 20 and just starting testosterone.
Let’s say you have a patient who wants to start testosterone. How does a conversation about PCOS start?
When I’m working with my trans and gender-diverse patients with ovaries who have not yet started on hormone therapy, we always try to get a history to elucidate whether PCOS may be pre-existing. That’s because once we start testosterone, we lose the ability to do most of our diagnostic tests.
Estimates are that about 10 percent of ovary-bearing individuals will have PCOS. And so it’s helpful to take a moment and make sure, prior to a starting treatment: Are your periods regular? Are you currently showing any signs of unusually high androgen levels?
If someone in my clinic has already started testosterone, sometimes I will go back and ask those questions just to see if we can nail down whether PCOS may have been pre-existing.
What’s the number one question you get from PCOS patients who want to take T?
If a person is coming in for gender-affirming care and we’re having a conversation about PCOS, the most common question I get is, “When can I start my treatment?”
Aside from the counselling about, “What are the health implications of this for me?” people ask, “Is this going to interfere with my ability to access the gender-affirming care that I need?” And the good news is that PCOS does not prevent access to gender-affirming care.
If somebody has infrequent periods, I recommend that we do an endocrine evaluation to figure out what’s going on. It’s not just PCOS—things like thyroid problems and a hormone called prolactin can also make periods irregular.
Typically, we’ll do some lab work and a physical exam. If a person’s not comfortable with me examining their body, at least I can get a history from them about whether they have a more masculine pattern of hair growth on their body.
And then we may consider doing an ultrasound to look at the ovaries. The best way to do an ultrasound to visualize the ovaries is to use a probe that goes in the vagina. And some of our patients can’t tolerate that. So then we’ll try to do an ultrasound across the abdomen, but it can be a bit limited.
Sometimes we don’t find anything abnormal. If we do find out that someone has PCOS, it helps me to know that I probably need to be vigilant about some of the metabolic consequences with this person. And I may need to counsel them that down the road, if they decide they want to pursue pregnancy or having their eggs retrieved for someone else to carry a pregnancy—it might be more difficult for them because of underlying PCOS.
We can start testosterone in either case. It just helps our counselling and monitoring to find out whether PCOS is present. That workup only takes a week or two, so we can still get T started in a very timely manner.
Are there instances where PCOS symptoms or complications persist after starting testosterone?
All of the things that we use to diagnose PCOS are things that we expect testosterone to do. Testosterone can suppress periods or make them less frequent. Testosterone, obviously, causes signs of androgen levels being elevated—that’s typically the goal. And it actually causes cystic changes in the ovaries, which, on an ultrasound, look very similar to the cystic changes we see with PCOS.
But when we actually remove the ovaries of people who’ve been taking testosterone and look at them under a microscope, they look different than the ovaries of people not on T who have PCOS.
It’s very unclear what effect testosterone has on all of those risks that can come with PCOS. We don’t know if it worsens or improves the metabolic issues compared to what a person would’ve experienced had they not started testosterone. We don’t know if it worsens the fertility issues if they were to stop testosterone down the road.
The one place where it is likely to actually improve the risk is with the uterine lining. That’s because testosterone actually causes atrophy or thinning of the uterine lining, which probably reduces that endometrial cancer risk.
Let’s say you have a PCOS patient who doesn’t want to take testosterone. How do the treatment conversations differ from what we’ve already discussed?
In cis women who have PCOS, the clinical effects they get from high androgen levels may be bothersome to them. We may treat facial hair development, severe acne and hair loss more proactively.
In contrast, many of my patients who are gender nonconforming will say, “Oh, I’ve always had some facial hair. That never bothered me. I kind of like that.”
In any case, treatment begins in the same place. Oral contraceptives will often reduce acne and hair growth by bringing down androgen levels. Sometimes we need to leverage other treatments as well, and those are the treatments that we have for everyone.
For example, it’s been explored whether anti-androgen treatments like spironolactone improve acne control or hair growth in proportion to oral contraceptives. Turns out they don’t appear to. But if somebody can’t tolerate oral contraceptives, we can use anti-androgen agents to address some of those symptoms.
And then things like minoxidil, which is the active ingredient in Rogaine, can help replace the hair loss that people might have experienced.
And then of course the whole litany of acne treatments that are available to everyone are available for use with PCOS, too.
Someone who isn’t on T who starts oral contraceptives will start to notice significant changes after two to three months. They should have pretty well-controlled periods by then, and they should be starting to see a reduction in acne and a slowing down of unwanted hair growth.
Any last thoughts?
We’re seeing more and more people present at a younger age for gender-affirming care. And [a PCOS] diagnosis is really hard to make in adolescence. It can take a couple of years for periods to become regular after they first start, so having irregular periods is a common experience for a teenager. Similarly, severe acne is common during that first puberty. And some of the lab markers that we use for adolescents are different.
So we may miss the diagnosis in some folks. Not that that would change our management—we start testosterone when it’s indicated that testosterone needs to be started.
This interview has been edited and condensed for length and clarity.