In 2008, Haley R. (whose full name we’ll withhold for privacy) was just 18 years old when she started to notice strange things happening to her body. Seemingly out of the blue, she’d get flares of thick, scaly, red patches all across her face, along with other skin and full-body issues like joint pain and fatigue.

All of her symptoms seemed random and not quite connected. That is, until she found out she has a rare condition called autoimmune progesterone dermatitis—aka, an allergy to her menstrual cycle.

Apart from red face patches, the Austin, Texas-based artist and product designer would also get swelling. “My eyelids would swell up and my face would burn—if you touched my face, you could feel heat coming off it. It felt like my skin was being stretched off my face,” Haley tells Well+Good. She’d also break out into intense, full-body hives and lose clumps of her hair while brushing it in the shower.

She developed something called Reynaud’s syndrome, where her fingers, toes, ears, and nose would become numb when exposed to cold. And even though she was an active athlete in high school, she started getting joint pain and fatigue.”It felt like my bones and muscles physically could not hold me up,” Haley says. “It was hard to simply get out of bed and make it through the day.”

These symptoms would last for about a week, fade away, and then reappear the following month, following the timeline of her menstrual cycle.

It took 13 years of dealing with these mysterious symptoms for Haley to finally get diagnosed with autoimmune progesterone dermatitis, also known as progesterone hypersensitivity (PH). This basically means she’s allergic to progesterone, a hormone made by the ovaries that hits peak levels in the week or so before menstruation (progesterone is also thought to play a role in PMS, by the way).

Read on to learn more about Haley’s journey with PH, how common it is, and what to do if you think you might have it.

Why does progesterone hypersensitivity even happen?

The origin of PH is still a mystery. “Progesterone hypersensitivity is a rare condition with an average onset age of 27; the cause is not understood and there are no known risk factors,” says Mark Trolice, MD, board certified OB/GYN and reproductive endocrinology and infertility specialist, founder and director of The IVF Center, professor at the University of Central Florida College of Medicine, and author of The Fertility Doctor’s Guide to Overcoming Infertility. “It can be triggered either by progesterone that’s naturally produced by the ovaries, or by synthetic progesterone given through medication such as fertility treatments or some forms of contraception.”

PH can manifest in a variety of ways. “The body can experience skin lesions, bronchospasms (a narrowing of the airway that causes difficulty breathing), shortness of breath, low blood pressure, and anaphylaxis, which can be life-threatening,” Dr. Trolice says. According to the National Organization for Rare Disorders, people with the condition can also get hives and asthma.

There are only around 200 reported cases of PH, according to a September 2023 case study in Cureus¹, but the condition is likely under-diagnosed. “I don’t want to over-alarm people,” Dr. Trolice says, noting that while PH may be more widespread, it’s still not very common. (For context, he has been in practice for more than 25 years and has not seen a single patient with progesterone hypersensitivity.)

Still, the Cureus case study points out that the number of people with PH is expected to rise due to the increasing use of progestins in fertility therapies and contraception options—including the pill, the ring, hormonal IUDs, and the birth control shot.

“Feeling like no one believed me was extremely stressful and created a lot of mental hardship for me for a long time.” —Haley R.

How is autoimmune progesterone dermatitis diagnosed?

Unsurprisingly, this condition is hard to diagnose. Over the years, Haley says she met with at least 18 specialists and had countless blood tests. “Sometimes I was misdiagnosed and put on medications that weren’t needed,” she says.

Doctors evaluated her for depression, fibromyalgia (a condition that causes widespread pain), lupus (an autoimmune disorder where your body attacks its own tissues and organs), and mast cell activation syndrome, which causes symptoms of anaphylaxis. They looked at her hormone levels and her thyroid. Everything came back normal. “It was very frustrating, time-consuming, and invasive,” she says.

In 2021, Haley went to see yet another rheumatologist. She described her symptoms and shared something peculiar she’d picked up on about a year prior. While tracking her menstrual cycle, she noticed her symptoms flared on the same dates every month. At first, she thought they might be triggered by a food allergy. But eventually, she realized that they seemed to coincide with her period, flaring up a few days before her flow began, and then disappearing about three to four days in.

What’s more, Haley got her first period at age 18, which is when these flares initially appeared. She felt there had to be a connection.

“The doctor was very dismissive, but there happened to be a med student shadowing him during the appointment,” she says. “Afterward, she slid me a note recommending I talk to an allergist about a possible diagnosis of progesterone hypersensitivity.”

Haley took her advice and met with an allergist who looked closely at her symptoms and when they showed up. She confirmed that the symptoms were happening cyclically, during the luteal phase of her menstrual cycle. The luteal phase happens right after ovulation, when progesterone is released to thicken the lining of the uterus in preparation for a possible pregnancy. Haley finally received a formal diagnosis of progesterone hypersensitivity.

At that point, she decided to get an intradermal allergy test, where a small amount of diluted progesterone was injected under her skin and then observed for reactivity. “My doctor was hesitant to do the test, because it is not always accurate,” she says. “But after all I’d been through, it was important for me to be tested, and the results came back positive.” She had an answer at last.

What is life with progesterone hypersensitivity like?

Haley is a resilient and persistent person by nature, but she says living with PH sometimes feels like an uphill battle. For more than  a decade, she carried the burden of not knowing what was wrong with her and receiving inadequate treatment, which was mentally and physically taxing. “I went to art school and struggled to attend class while managing my symptoms, especially because some of the classes were physically demanding,” she says. “For example, my joint pain made it difficult to build things.”

Now that she works a desk job, her lifestyle is more manageable. “I push through the pain, even though some days I would rather be home on the couch,” she says.

Progesterone hypersensitivity has also taken a toll on her social life. “I have to cancel plans if I’m not feeling good,” she says. “And if my face looks wrecked, I don’t want to be out in public.” It has gotten easier now that she’s in her 30s and feeling more settled, but she says it was especially difficult in her 20s.

Still, the hardest part of her illness has perhaps been the way her concerns were brushed off time and again by the medical community. “The roughest periods were when doctors didn’t take me seriously or when I was shuffled from specialist to specialist,” Haley says. “Feeling like no one believed me was extremely stressful and created a lot of mental hardship for me for a long time.”

Along the way, Haley learned to advocate for herself, and she encourages others to do the same. “Document everything—get a binder to store the results of your past tests and the specialists you’ve seen,” she says. “It’s really helpful to have hard copy evidence when you go to a new allergist or rheumatologist because it removes the ‘you’re making it up’ vibe.”

Ultimately, don’t give up. “It has been a long road—it took me over a decade to get diagnosed,” Haley says. “It’s difficult, but stay positive and keep moving forward.”

“The thought of being pregnant was very scary for me because progesterone spikes during pregnancy.” —Haley R.

There are some treatment options

If you think you might have PH, the first step is to visit your OB/GYN. “They will likely refer you to an allergist,” Dr. Trolice says.

If your PH was caused by a medication with progesterone—like birth control or fertility shots—“the symptoms should clear up when you stop taking the medication,” Dr. Trolice adds.

He also points out that other ingredients in the drug could be to blame. “In fertility treatments, progesterone is mixed with peanut, sesame, or ethanolamine oil,” he says. “People might be reacting to the type of oil used rather than the progesterone.”

What’s more, there are a number of different forms of synthetic progesterone; you might be allergic to a certain type but may tolerate another just fine.

Of course, if your symptoms (like Haley’s) are triggered by your body’s own progesterone, that’s another story. “In that case, the course of treatment is using medication to stop ovulation—such as GNRH antagonists or birth control, if you can tolerate it,” Dr. Trolice says.

And if you want to get pregnant? “An allergist can try progesterone desensitization techniques,” Dr. Trolice says. “For instance, they may introduce small amounts of progesterone intra-vaginally to build up your tolerance, and then monitor how you respond.”

After Haley’s diagnosis, she began taking daily oral antihistamines, Benadryl and Zyrtec, at the onset of her period, which has helped. She’s also tried Zolair (an antihistamine shot), applies topical steroids to reduce the rash on her face, and uses calamine lotion on her hives.

Her doctor also gave her Anovera, a progesterone-based birth control in the form of a flexible ring that you insert around your cervix. “The theory was to shock my system with progesterone to see if it would help my body become immune to it,” Haley says. “Other people with PH have had success with this approach, but it didn’t work for me.” She ended up having heart issues and anaphylaxis after about two months, which took a toll on her physical and mental health.

For some people, doctors suggest trying contraceptives to stop ovulation, but Haley decided not to go that route because she was hoping to have a baby.

Beyond medication, there are certain lifestyle shifts Haley has made to lessen her symptoms. “I eat a plant-based, anti-inflammatory diet,” she says. She sticks to low-FODMAP foods and cooked vegetables, and avoids spicy dishes. She also makes sure to get plenty of sleep, at least seven hours per night, plus daily naps. “These changes seem to help keep down the overall level of inflammation in my body, which makes the flares easier to get through,” she shares.

Over time, natural progesterone hypersensitivity may stop altogether with menopause. “Progesterone hypersensitivity resolves with menopause, since the body is no longer ovulating,” Dr. Trolice says, adding that “hormone replacement therapy should not be given to people with this condition going through menopause.”

Lastly, some people with PH opt for a permanent, surgical solution to prevent ovulation, such as a oophorectomy (removal of the ovaries).

What happens during pregnancy?

Haley got pregnant at the end of 2023. “The thought of being pregnant was very scary for me because progesterone spikes during pregnancy,” she says. “Some people with PH can go into anaphylaxis while giving birth because there is another surge of progesterone during labor.”

Haley’s hives did indeed increase with conception. “It was actually one of the first symptoms that tipped me off that I might be pregnant,” she says. Yet as the pregnancy progressed, her symptoms resolved.

“Some people experience a reduction in symptoms because the elevated levels of progesterone desensitize your body to the hormone,” Dr. Trolice says. It can also be the result of changes in your immune system during pregnancy. In fact, some people find their symptoms disappear permanently after giving birth.

Four months ago, Haley gave birth to a healthy baby girl. “Pregnancy was a reprieve from my symptoms and only time will tell what happens next,” she says. “But I’ve been getting more hives over the past week, so I have a feeling I might be getting my first postpartum period soon.”

When to see a doctor

Autoimmune progesterone dermatitis is pretty rare. But if you’ve noticed a pattern of skin issues, joint pain, fatigue, or other allergy symptoms along with your menstrual cycle, bring it up to your OB/GYN. They may refer you to an allergist to test you for PH. Together with your healthcare team, you can decide the best course of treatment to relieve your symptoms.

—reviewed by Andrea Braden, MD, OB/GYN