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

Other than crimson 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 get away 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 grow to be numb when uncovered to chilly. And regardless that she was an lively athlete in highschool, she began getting joint ache and fatigue.”It felt like my bones and muscle mass bodily couldn’t maintain me up,” Haley says. “It was laborious to easily get away from bed and make it by 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 identified 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 task in PMS, by the way in which).

Learn on to study extra about Haley’s journey with PH, how widespread it’s, and what to do if you happen to assume you might 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 threat elements,” says Mark Trolice, MD, board licensed OB/GYN and reproductive endocrinology and infertility specialist, founder and director of The IVF Heart, professor on the College of Central Florida Faculty of Drugs, and creator 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 remedy corresponding to 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 issue respiration), shortness of breath, low blood strain, and anaphylaxis, which might be life-threatening,” Dr. Trolice says. In line with the Nationwide Group for Uncommon Problems, individuals with the situation may get hives and bronchial asthma.

There are solely round 200 reported instances 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 individuals,” Dr. Trolice says, noting that whereas PH could also be extra widespread, it is nonetheless not quite common. (For context, he has been in observe 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 individuals with PH is anticipated to rise as a result of rising use of progestins in fertility therapies and contraception choices—together with the tablet, the ring, hormonal IUDs, and the contraception shot.

“Feeling like nobody believed me was extraordinarily traumatic and created a whole lot of psychological hardship for me for a very long time.” —Haley R.

How is autoimmune progesterone dermatitis identified?

Unsurprisingly, this situation is tough to diagnose. Over time, Haley says she met with not less than 18 specialists and had numerous blood exams. “Typically I used to be misdiagnosed and placed on drugs that weren’t wanted,” she says.

Medical doctors evaluated her for despair, 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. All the things got here again regular. “It was very irritating, time-consuming, and invasive,” she says.

In 2021, Haley went to see yet 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 is likely to be triggered by a meals allergy. However ultimately, she realized that they appeared to coincide along with her interval, flaring up a number of days earlier than her circulate started, after which disappearing about three to 4 days in.

What’s extra, Haley bought 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 throughout the appointment,” she says. “Afterward, she slid me a word recommending I discuss to an allergist a few potential analysis of progesterone hypersensitivity.”

Haley took her recommendation and met with an allergist who regarded carefully at her signs and once they confirmed up. She confirmed that the signs have been occurring cyclically, throughout 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 potential being pregnant. Haley lastly obtained a proper analysis 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 beneath 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 isn’t all the time correct,” she says. “However in spite of everything I’d been by, it was necessary for me to be examined, and the outcomes got here again optimistic.” She had a solution ultimately.

What’s life with progesterone hypersensitivity like?

Haley is a resilient and protracted individual by nature, however she says residing with PH typically appears like an uphill battle. For greater than  a decade, she carried the burden of not understanding what was fallacious along with her and receiving insufficient remedy, 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 among the lessons have been bodily demanding,” she says. “For instance, my joint ache made it tough to construct issues.”

Now that she works a desk job, her life-style is extra manageable. “I push by the ache, regardless that some days I might 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 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 tough in her 20s.

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

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

In the end, don’t surrender. “It has been a protracted street—it took me over a decade to get identified,” Haley says. “It’s tough, however keep optimistic and maintain shifting ahead.”

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

There are some remedy choices

In the event you assume you might need PH, step one is to go to your OB/GYN. “They may doubtless refer you to an allergist,” Dr. Trolice says.

In case your PH was brought on by a drugs with progesterone—like contraception or fertility pictures—“the signs ought to clear up whenever you cease taking the remedy,” Dr. Trolice provides.

He additionally factors out that different elements within the drug may very well be responsible. “In fertility therapies, progesterone is combined with peanut, sesame, or ethanolamine oil,” he says. “Folks is likely to 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 is likely to be allergic to a sure sort however could tolerate one other simply high-quality.

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 remedy is utilizing remedy to cease ovulation—corresponding to 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 illustration, they could introduce small quantities of progesterone intra-vaginally to construct up your tolerance, after which monitor the way you reply.”

After Haley’s analysis, 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 simply insert round your cervix. “The speculation was to shock my system with progesterone to see if it will assist my physique grow to be proof against it,” Haley says. “Different individuals with PH have had success with this method, but it surely 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 individuals, medical doctors recommend attempting contraceptives to cease ovulation, however Haley determined to not go that route as a result of she hoped to have a child.

Past remedy, there are specific life-style shifts Haley has made to reduce her signs. “I eat a plant-based, anti-inflammatory food regimen,” she says. She sticks to low-FODMAP meals and cooked greens, and avoids spicy dishes. She additionally makes positive to get loads of sleep, not less than seven hours per night time, plus each day naps. “These adjustments appear to assist maintain down the general stage of irritation in my physique, which makes the flares simpler to get by,” she shares.

Over time, pure progesterone hypersensitivity could cease altogether with menopause. “Progesterone hypersensitivity resolves with menopause, for the reason that physique is now not ovulating,” Dr. Trolice says, including that “hormone substitute remedy shouldn’t be given to individuals with this situation going by menopause.”

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

What occurs throughout being pregnant?

Haley bought 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 individuals with PH can go into anaphylaxis whereas giving delivery as a result of there may be one other surge of progesterone throughout labor.”

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

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

4 months in the past, Haley gave delivery to a wholesome child lady. “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 is likely to 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, carry it as much as your OB/GYN. They might refer you to an allergist to check you for PH. Collectively together with your healthcare staff, you possibly can determine one of the best course of remedy to alleviate your signs.