Expert advice on navigating your healthcare options when menstruation causes distress and dysphoria.
Research shows that puberty causes increased distress for transgender and non-binary patients, however very little research has looked at the distress caused by periods. A recent study looked at how trans and non-binary youth experience periods and found that 93% experience distress related to having their periods. Many reported a desire for medical assistance to reduce or eliminate periods altogether. While some components of this experience can be alleviated with medical care, navigating the healthcare system can be difficult for transgender and non-binary teens. While many adults’ periods stop when using hormonal gender affirming care such as testosterone, many teens are too young or not interested in testosterone, leaving the best treatment options for trans and non-binary youth unclear. Difficulties in accessing specialized gender care providers or clinics can further complicate the path to treatment for transgender and non-binary adolescents.
To gain more insights on gender affirming care relating to menstrual dysphoria, we spoke to the lead author on the paper, Jefferson pediatric and adolescent gynecologist Dr. Beth Schwartz. Dr. Schwartz is also part of the Gender Wellness Program at Nemours Children’s Hospital in Wilmington.
What advice would you give to someone who is experiencing distress about menstruation but may not have access to a specialized gender care clinic?
I would encourage young people to feel empowered enough to mention their concerns to the provider they are seeing, whether that is a pediatrician, primary care doctor or OB-GYN. You don’t need to use any fancy words; just say I’m really bothered by my periods and then go from there. I think it is important for patients to say what their goals are. One of the things we learned from this research was that the majority of our patients were interested in amenorrhea, or not bleeding at all. I think saying to a provider “I’m very bothered by my periods. I would really like to stop my periods completely,” is a great start.
Is there a specific provider that is best to reach out to such as an OB-GYN or primary care physician?
I think they should reach out to anybody they feel comfortable with or already have a good relationship with. That’s where I would start for sure. I think a gynecologist is the first person I would recommend just because all gynecologists are used to using hormonal medication to improve or potentially stop periods, whereas not all primary care providers may feel comfortable with that. But I think starting with whoever they feel the most comfortable with to at least talk through some things is good, and then hopefully they’ll point them in the right direction of somebody who can assist.
Are there certain treatments someone can advocate for to alleviate menstrual distress?
I can tell you what I do, but the problem is there’s no real data. I don’t know exactly what the right thing is yet, which is why we are studying this systematically now. We have research in the works looking at what medications people have chosen and what the outcomes were with different options in terms of rates of bleeding, side effects and satisfaction. So we will have more answers soon.
What advice would you have on how to advocate for yourself or a loved one? What works well with doctors and what tends not to in these situations?
Being clear about your goals, what you want, and not trying to say what you think the right thing is. On the flip side, also trying to be open-minded to a variety of solutions. A lot of times patients, whether gender diverse or cisgender, will come in specifically for menstrual management with some preconceived notions and sometimes myths about things that they do or absolutely don’t want to use. I really encourage everyone to listen to information about all the options before deciding. Sometimes people pick things that surprise them. Other times, patients or parents start out totally opposed to one option and then hear about it and say, “oh, I didn’t know this information. Maybe this does sound like a good option.” So I think being clear about your goals, but also being open-minded about avenues to achieve those goals.
What options are there for patients who are uninsured? Are there treatments that are more accessible at low-cost clinics? If you don’t have insurance to see a primary care physician or gynecologist, is this something you can go to urgent care for?
I don’t think you can go to urgent care for any of these treatments, but places like Planned Parenthood or other Title X clinics do provide gender affirming care, menstrual management and reproductive health for variety of reasons. That’s why it’s so important to keep these programs open to patients who otherwise can’t afford medical care. Jefferson OBGYN does have a Title X reproductive health clinic where patients can get medical care without going through insurance or for any other reasons might need confidential care that isn’t billed through their insurance. There are other places in the city and surrounding areas where you can receive similar care. To locate a Title X clinic near you, you can use this website.
What steps should parents take when they find out their child is experiencing menstrual dysphoria?
Make an appointment with a provider who feels comfortable discussing and managing it. Also, I would congratulate them also on having a kid who is comfortable enough discussing that with their family. Sadly, menstruation is really taboo for a lot of reasons and people often don’t discuss it unless it’s brought up. So that is pretty awesome that they have been able to talk about that. And then just again, usually starting with a primary care doctor who they already have a relationship with to say, “hey, this is something my kid’s experiencing, is this something that we can talk about with you? Is this something you can address or manage? Or is there someone else you would recommend?”
If patients have unsupportive parents, what options are available to them to receive care?
Teens are able to consent to confidential reproductive care on their own, and menstrual suppression fits into that. So technically, although we want the support of our patients’ parents for everything, patients are able to consent to any of these treatments on their own. Most of the time parents are supportive. About three quarters of parents in our study were explicitly supportive of menstrual management and very few were not supportive at all. Even though most parents were supportive, many of them had some concerns, mostly about side effects and long-term effects. Parents can be reassured that this treatment is completely reversible and side effects are not common. I think parents should be involved in decision-making whenever possible, but for certain situations, there is also ability for youth to get confidential care.
What would you say to a parent who is concerned with possible long-term risks of treatments of menstrual dysphoria? Are there treatments that have lower long-term risks?
This is a concern for the parents of most of my patients regardless of gender identity. I think that there are a lot of concerns about side effects and potentially long-term risks when you are starting your child on any medications. I reassure parents that most people don’t experience any side effects with these medications. If they do, we can always stop them, change the dose, or switch to something different. All of these treatments are short-acting and are out of your system pretty quickly. The most important thing to know is that there are options.
[Main illustration credit: iStock.com/Nadzeya_Dzivakova]