All of her signs appeared random and never fairly related. That’s, till she discovered she has a uncommon situation known as autoimmune progesterone dermatitis—aka, an allergy to her menstrual cycle.

Other than pink face patches, the Austin, Texas-based artist and product designer would additionally get swelling. “My eyelids would swell up and my face would burn—if you happen to touched my face, you would really feel warmth coming off it. It felt like my pores and skin was being stretched off my face,” Haley tells Properly+Good. She’d additionally escape into intense, full-body hives and lose clumps of her hair whereas brushing it within the bathe.

She developed one thing known as Reynaud’s syndrome, the place her fingers, toes, ears, and nostril would turn into numb when uncovered to chilly. And although she was an lively athlete in highschool, she began getting joint ache and fatigue.”It felt like my bones and muscle tissue bodily couldn’t maintain me up,” Haley says. “It was laborious to easily get away from bed and make it by means of the day.”

These signs would final for a few week, fade away, after which reappear the next month, following the timeline of her menstrual cycle.

It took 13 years of coping with these mysterious signs for Haley to lastly get recognized with autoimmune progesterone dermatitis, often known as progesterone hypersensitivity (PH). This principally means she’s allergic to progesterone, a hormone made by the ovaries that hits peak ranges within the week or so earlier than menstruation (progesterone can also be thought to play a job in PMS, by the way in which).

Learn on to be taught extra about Haley’s journey with PH, how widespread it’s, and what to do if you happen to suppose you may need it.

Why does progesterone hypersensitivity even occur?

The origin of PH continues to be a thriller. “Progesterone hypersensitivity is a uncommon situation with a mean onset age of 27; the trigger shouldn’t be understood and there aren’t any recognized danger components,” says Mark Trolice, MD, board licensed OB/GYN and reproductive endocrinology and infertility specialist, founder and director of The IVF Middle, professor on the College of Central Florida School of Medication, and writer of The Fertility Physician’s Information to Overcoming Infertility. “It may be triggered both by progesterone that’s naturally produced by the ovaries, or by artificial progesterone given by means of treatment resembling fertility therapies or some types of contraception.”

PH can manifest in a wide range of methods. “The physique can expertise pores and skin lesions, bronchospasms (a narrowing of the airway that causes problem respiration), shortness of breath, low blood strain, and anaphylaxis, which may be life-threatening,” Dr. Trolice says. Based on the Nationwide Group for Uncommon Problems, folks with the situation can even get hives and bronchial asthma.

There are solely round 200 reported circumstances of PH, in keeping with a September 2023 case examine in Cureus¹, however the situation is probably going under-diagnosed. “I don’t need to over-alarm folks,” Dr. Trolice says, noting that whereas PH could also be extra widespread, it is nonetheless not quite common. (For context, he has been in follow for greater than 25 years and has not seen a single affected person with progesterone hypersensitivity.)

Nonetheless, the Cureus case examine factors out that the variety of folks with PH is anticipated to rise as a result of growing use of progestins in fertility therapies and contraception choices—together with the capsule, the ring, hormonal IUDs, and the contraception shot.

“Feeling like nobody believed me was extraordinarily nerve-racking and created plenty of psychological hardship for me for a very long time.” —Haley R.

How is autoimmune progesterone dermatitis recognized?

Unsurprisingly, this situation is difficult to diagnose. Through the years, Haley says she met with no less than 18 specialists and had numerous blood checks. “Generally I used to be misdiagnosed and placed on drugs that weren’t wanted,” she says.

Docs evaluated her for melancholy, fibromyalgia (a situation that causes widespread ache), lupus (an autoimmune dysfunction the place your physique assaults its personal tissues and organs), and mast cell activation syndrome, which causes signs of anaphylaxis. They checked out her hormone ranges and her thyroid. Every little thing got here again regular. “It was very irritating, time-consuming, and invasive,” she says.

In 2021, Haley went to see one more rheumatologist. She described her signs and shared one thing peculiar she’d picked up on a few 12 months prior. Whereas monitoring her menstrual cycle, she seen her signs flared on the identical dates each month. At first, she thought they could be triggered by a meals allergy. However finally, she realized that they appeared to coincide along with her interval, flaring up a couple of days earlier than her stream started, after which disappearing about three to 4 days in.

What’s extra, Haley acquired her first interval at age 18, which is when these flares initially appeared. She felt there needed to be a connection.

“The physician was very dismissive, however there occurred to be a med pupil shadowing him in the course of the appointment,” she says. “Afterward, she slid me a observe recommending I speak to an allergist a few attainable prognosis of progesterone hypersensitivity.”

Haley took her recommendation and met with an allergist who seemed carefully at her signs and once they confirmed up. She confirmed that the signs have been occurring cyclically, in the course of the luteal section of her menstrual cycle. The luteal section occurs proper after ovulation, when progesterone is launched to thicken the liner of the uterus in preparation for a attainable being pregnant. Haley lastly obtained a proper prognosis of progesterone hypersensitivity.

At that time, she determined to get an intradermal allergy take a look at, the place a small quantity of diluted progesterone was injected underneath her pores and skin after which noticed for reactivity. “My physician was hesitant to do the take a look at, as a result of it’s not all the time correct,” she says. “However in any case I’d been by means of, it was necessary for me to be examined, and the outcomes got here again optimistic.” She had a solution eventually.

What’s life with progesterone hypersensitivity like?

Haley is a resilient and chronic particular person by nature, however she says dwelling with PH generally appears like an uphill battle. For greater than  a decade, she carried the burden of not figuring out what was fallacious along with her and receiving insufficient therapy, which was mentally and bodily taxing. “I went to artwork college and struggled to attend class whereas managing my signs, particularly as a result of a few of the courses have been bodily demanding,” she says. “For instance, my joint ache made it troublesome to construct issues.”

Now that she works a desk job, her way of life is extra manageable. “I push by means of the ache, although some days I’d slightly be residence on the sofa,” she says.

Progesterone hypersensitivity has additionally taken a toll on her social life. “I’ve to cancel plans if I’m not feeling good,” she says. “And if my face seems to be wrecked, I don’t need to be out in public.” It has gotten simpler now that she’s in her 30s and feeling extra settled, however she says it was particularly troublesome in her 20s.

Nonetheless, the toughest a part of her sickness has maybe been the way in which her considerations have been disregarded again and again by the medical neighborhood. “The roughest intervals have been when medical doctors didn’t take me significantly or after I was shuffled from specialist to specialist,” Haley says. “Feeling like nobody believed me was extraordinarily nerve-racking and created plenty of psychological hardship for me for a very long time.”

Alongside the way in which, Haley realized to advocate for herself, and he or she encourages others to do the identical. “Doc all the things—get a binder to retailer the outcomes of your previous checks and the specialists you’ve seen,” she says. “It’s actually useful to have laborious copy proof if you go to a brand new allergist or rheumatologist as a result of it removes the ‘you’re making it up’ vibe.”

Finally, don’t surrender. “It has been an extended street—it took me over a decade to get recognized,” Haley says. “It’s troublesome, however keep optimistic and preserve transferring ahead.”

“The considered being pregnant was very scary for me as a result of progesterone spikes throughout being pregnant.” —Haley R.

There are some therapy choices

Should you suppose you may need PH, step one is to go to your OB/GYN. “They’ll seemingly refer you to an allergist,” Dr. Trolice says.

In case your PH was attributable to a drugs with progesterone—like contraception or fertility photographs—“the signs ought to clear up if you cease taking the treatment,” Dr. Trolice provides.

He additionally factors out that different elements within the drug may very well be accountable. “In fertility therapies, progesterone is blended with peanut, sesame, or ethanolamine oil,” he says. “Folks could be reacting to the kind of oil used slightly than the progesterone.”

What’s extra, there are a selection of various types of artificial progesterone; you could be allergic to a sure kind however could tolerate one other simply advantageous.

In fact, in case your signs (like Haley’s) are triggered by your physique’s personal progesterone, that’s one other story. “In that case, the course of therapy is utilizing treatment to cease ovulation—resembling GNRH antagonists or contraception, if you happen to can tolerate it,” Dr. Trolice says.

And if you wish to get pregnant? “An allergist can strive progesterone desensitization strategies,” Dr. Trolice says. “As an example, they could introduce small quantities of progesterone intra-vaginally to construct up your tolerance, after which monitor the way you reply.”

After Haley’s prognosis, she started taking each day oral antihistamines, Benadryl and Zyrtec, on the onset of her interval, which has helped. She’s additionally tried Zolair (an antihistamine shot), applies topical steroids to cut back the rash on her face, and makes use of calamine lotion on her hives.

Her physician additionally gave her Anovera, a progesterone-based contraception within the type of a versatile ring that you just insert round your cervix. “The idea was to shock my system with progesterone to see if it will assist my physique turn into proof against it,” Haley says. “Different folks with PH have had success with this method, nevertheless it didn’t work for me.” She ended up having coronary heart points and anaphylaxis after about two months, which took a toll on her bodily and psychological well being.

For some folks, medical doctors recommend making an attempt contraceptives to cease ovulation, however Haley determined to not go that route as a result of she hoped to have a child.

Past treatment, there are particular way of life shifts Haley has made to minimize her signs. “I eat a plant-based, anti-inflammatory eating regimen,” she says. She sticks to low-FODMAP meals and cooked greens, and avoids spicy dishes. She additionally makes certain to get loads of sleep, no less than seven hours per night time, plus each day naps. “These adjustments appear to assist preserve down the general stage of irritation in my physique, which makes the flares simpler to get by means of,” she shares.

Over time, pure progesterone hypersensitivity could cease altogether with menopause. “Progesterone hypersensitivity resolves with menopause, because the physique is not ovulating,” Dr. Trolice says, including that “hormone alternative remedy shouldn’t be given to folks with this situation going by means of menopause.”

Lastly, some folks with PH go for a everlasting, surgical answer to stop ovulation, resembling a hysterectomy (removing of the uterus) or ovariectomy (removing of the ovaries).

What occurs throughout being pregnant?

Haley acquired pregnant on the finish of 2023. “The considered being pregnant was very scary for me as a result of progesterone spikes throughout being pregnant,” she says. “Some folks with PH can go into anaphylaxis whereas giving beginning as a result of there’s one other surge of progesterone throughout labor.”

Haley’s hives did certainly improve with conception. “It was really one of many first signs that tipped me off that I could be pregnant,” she says. But because the being pregnant progressed, her signs resolved.

“Some folks expertise a discount in signs as a result of the elevated ranges of progesterone desensitize your physique to the hormone,” Dr. Trolice says. It will also be the results of adjustments in your immune system throughout being pregnant. In actual fact, some folks discover their signs disappear completely after giving beginning.

4 months in the past, Haley gave beginning to a wholesome child woman. “Being pregnant was a reprieve from my signs and solely time will inform what occurs subsequent,” she says. “However I’ve been getting extra hives over the previous week, so I’ve a sense I could be getting my first postpartum interval quickly.”

When to see a physician

Autoimmune progesterone dermatitis is fairly uncommon. However if you happen to’ve seen a sample of pores and skin points, joint ache, fatigue, or different allergy signs alongside together with your menstrual cycle, convey it as much as your OB/GYN. They could refer you to an allergist to check you for PH. Collectively together with your healthcare group, you may determine the perfect course of therapy to alleviate your signs.