Hormones: 10 things you need to know

1. HRT comes in different forms: pills, patches, body creams, and sprays

Women with DSD who need HRT talk about how bodies react differently to different forms of estrogen. If after starting an HRT dose you are feeling low, gaining weight, having hot flashes, or feeling less than typical, ask your doctor about different doses and different forms of HRT and delivery (like pills, injections, patches, crèmes, etc).

2. Some women find that a combination of different Estrogen HRT delivery forms (like pills with crèmes) works well

Each person is different and will respond differently to HRT. Some women with complete AIS in particular have tried testosterone, although there isn’t a lot of data on it. Research is coming soon to help us know if T could be helpful for young women with CAIS who no longer have gonads.

3. What matters more than anything is that you have a doctor who is committed to working with you and adjusting HRT to what is right for your body

HRT nowadays mostly is produced with older women in mind—women who have stopped having periods. Because of this, your doctor is probably unfamiliar with how to fit hormones to a young person’s body with a DSD. Even doctors who specialize in endocrinology don’t have much research about how to best replace hormones in young people with DSD. There are a few studies going on to find out more, but our bodies cannot wait. Talk with your doctor about experimenting with different forms of HRT, different brands, and different doses to find out what feels best for you.

4. Do not smoke cigarettes!

Taking estrogen HRT combined with smoking cigarettes can cause you to have a higher risk of blood clots and strokes.

5. What kind of estrogen (E)? Premarin versus Estrodiol

Girls with DSD who need estrogen replacement are offered hormone medications to replace the estrogen that their body can no longer (or does not) make.Some are offered a specific E called estrodiol. Estrodiol is a direct match of the type of hormone a human body would make—doctors find that it matches up and works well in human bodies. Some girls are prescribed Premarin E pills. Premarin is has lots of different forms of estrogen that aren’t all perfect E receptor matches for the human body; they are horse-made hormones. Estrodiol is like 'the perfect key' that does what estrogen should do in our cells; the premarin estrogens as keys that may not work as well in our bodies (like using a car key to open things that aren't your car.)
Of course, each body responds to a prescription of E in a different way. Check the Hormones and Your Body section to check if the hormones are working or if they are making you feel sick. If you are unhappy with your form of hormone replacement, consider switching to another form (like a gel, spray, injection, pill, cream, etc) or to a different type of the hormone (estrodial, etc) with your doctor. Some people even try different forms of hormones together (pill+patch or patch+cream) and find they work better that way. Work with your doctor to find what works best for you.

6. Risks listed on the HRT packages may not be accurate for your body

Most of the time, hormones are provided to women as a contraceptive and in addition to ordinary, functioning ovaries. With DSD, doctors are replacing hormones that are no longer present in the body, either because someone has had their hormone-producing gonads removed or the gonads are not producing enough. When there are no gonads or hormones, the body absolutely needs hormones to maintain bone, skin, and general health—the medication is not a supplement, it is vital for health. Unfortunately, it’s difficult to know exactly what the risks are when hormones are given for replacement purposes in DSD.

7. Also, consider having your hormone blood levels checked when you are taking hormones

Some people with DSD have shared that their body wasn’t able to absorb certain forms of E (like pills) and had to switch the kind of HRT and delivery. So, check your hormone levels to make sure your body is absorbing them!

8. Get into a routine when taking your HRT

Some people with DSD have found that taking their HRT at the same time each day keeps them from having symptoms of hormone withdrawal (for example, hot flashes/flushes, feeling on edge, etc.) If you are taking hormones, figure out a routine that works and keep to it to avoid any short or long-term side effects!

9. If you forget it for a couple of days, don’t worry

Short term, if you don’t take hormones (we’re talking about E or T), you might experience some withdrawal symptoms like a hot flash (a.k.a. flush in the UK) or mood issues. Don’t worry—it’s not going to cause irreparable damage to you. However, get back into the swing of taking them as soon as possible, to avoid long-term issues of not taking them.

10. Some men with DSD also take HRT—usually testosterone

Some men might have had already some hormone shots early on. These injections might have helped with penis growth but probably did not influence the final penis size after puberty; if you take early hormone shots, it’s basically just jumping ahead to reach the same ‘size’ endpoint.

Some doctors think extra testosterone might help the body develop more during puberty and after. T can be taken in injections and crèmes, but each hospital and clinic does it differently. But remember, each body responds to T in its own way—no two puberties are exactly alike.

Question to our readers

Delivery methods of HRT: Where you put the patch and what to do in the shower? What happens if you have issues? What do you tell your friends? We want to hear from you at info@dsdteens.org