Autoimmune Progesterone Dermatitis: Period Allergy Causes

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

Aside from purple face patches, the Austin, Texas-based artist and product designer would additionally get swelling. “My eyelids would swell up and my face would burn—in the event you touched my face, you could possibly really feel warmth coming off it. It felt like my pores and skin was being stretched off my face,” Haley tells Effectively+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 referred to as Reynaud’s syndrome, the place her fingers, toes, ears, and nostril would change into numb when uncovered to chilly. And regardless that she was an energetic athlete in highschool, she began getting joint ache and fatigue.”It felt like my bones and muscular tissues bodily couldn’t maintain me up,” Haley says. “It was arduous to easily get off the 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, also referred to as progesterone hypersensitivity (PH). This mainly 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 role in PMS, by the best way).

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Learn on to be taught extra about Haley’s journey with PH, how widespread it’s, and what to do in the event you suppose 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 is just not understood and there are not any identified threat elements,” says Mark Trolice, MD, board licensed OB/GYN and reproductive endocrinology and infertility specialist, founder and director of The IVF Center, professor on the University of Central Florida College of Medicine, and creator of The Fertility Doctor’s Guide to Overcoming Infertility. “It may be triggered both by progesterone that’s naturally produced by the ovaries, or by artificial progesterone given by remedy akin to fertility remedies or some types of contraception.”

PH can manifest in quite a lot of methods. “The physique can expertise pores and skin lesions, bronchospasms (a narrowing of the airway that causes problem respiratory), shortness of breath, low blood strain, and anaphylaxis, which will be life-threatening,” Dr. Trolice says. Based on the National Organization for Rare Disorders, folks with the situation also can get hives and bronchial asthma.

There are solely round 200 reported instances of PH, in line with a September 2023 case research in Cureus¹, however the situation is probably going under-diagnosed. “I don’t wish 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 research factors out that the variety of folks with PH is predicted to rise as a result of growing use of progestins in fertility therapies and contraception options—together with the capsule, the ring, hormonal IUDs, and the contraception shot.

“Feeling like nobody believed me was extraordinarily irritating and created numerous psychological hardship for me for a very long time.” —Haley R.

How is autoimmune progesterone dermatitis identified?

Unsurprisingly, this situation is tough to diagnose. Through the years, Haley says she met with at the very least 18 specialists and had numerous blood exams. “Typically I used to be misdiagnosed and placed on drugs that weren’t wanted,” she says.

Docs 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. 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 observed her signs flared on the identical dates each month. At first, she thought they is perhaps triggered by a meals allergy. However finally, she realized that they appeared to coincide along with her interval, flaring up a number of days earlier than her move started, after which disappearing about three to 4 days in.

What’s extra, Haley obtained 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 through the appointment,” she says. “Afterward, she slid me a notice recommending I discuss to an allergist a few attainable analysis 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 taking place cyclically, through the luteal part of her menstrual cycle. The luteal part 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 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 below 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 finally.

What’s life with progesterone hypersensitivity like?

Haley is a resilient and chronic particular person by nature, however she says dwelling with PH typically appears like an uphill battle. For greater than  a decade, she carried the burden of not figuring out what was incorrect along with her and receiving insufficient therapy, which was mentally and bodily taxing. “I went to artwork faculty and struggled to attend class whereas managing my signs, particularly as a result of a few of 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 way of life is extra manageable. “I push by the ache, regardless that some days I might relatively be house 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 wish 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 best way her issues have been disregarded repeatedly 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 irritating and created numerous psychological hardship for me for a very long time.”

Alongside the best way, 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 exams and the specialists you’ve seen,” she says. “It’s actually useful to have arduous copy proof while 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 quit. “It has been an extended highway—it took me over a decade to get identified,” Haley says. “It’s tough, however keep optimistic and maintain 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

For those who suppose you might need PH, step one is to go to your OB/GYN. “They’ll doubtless refer you to an allergist,” Dr. Trolice says.

In case your PH was attributable to a medicine with progesterone—like contraception or fertility pictures—“the signs ought to clear up while you cease taking the remedy,” Dr. Trolice provides.

He additionally factors out that different components within the drug may very well be in charge. “In fertility remedies, progesterone is blended with peanut, sesame, or ethanolamine oil,” he says. “Individuals is perhaps reacting to the kind of oil used relatively than the progesterone.”

What’s extra, there are a variety of various types of artificial progesterone; you is perhaps allergic to a sure sort however might tolerate one other simply high-quality.

After all, 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 remedy to cease ovulation—akin to GNRH antagonists or contraception, in the event you can tolerate it,” Dr. Trolice says.

And if you wish to get pregnant? “An allergist can strive progesterone desensitization methods,” Dr. Trolice says. “For 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 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 scale 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 speculation was to shock my system with progesterone to see if it could assist my physique change into resistant to it,” Haley says. “Different folks with PH have had success with this strategy, 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 counsel 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 remedy, there are specific way of life shifts Haley has made to reduce her signs. “I eat a plant-based, anti-inflammatory diet,” she says. She sticks to low-FODMAP foods and cooked greens, and avoids spicy dishes. She additionally makes positive to get plenty of sleep, at the very least seven hours per evening, plus each day naps. “These adjustments appear to assist maintain down the general degree of irritation in my physique, which makes the flares simpler to get by,” she shares.

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

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

What occurs throughout being pregnant?

Haley obtained 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 may be one other surge of progesterone throughout labor.”

Haley’s hives did certainly improve with conception. “It was truly one of many first signs that tipped me off that I is perhaps 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 may 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 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 perhaps getting my first postpartum period quickly.”

When to see a health care provider

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