Autoimmune Progesterone Dermatitis: Period Allergy Causes

All of her signs appeared random and never fairly related. That’s, till she came upon she has a uncommon situation referred to 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—should you 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 Effectively+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 referred to 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 tissues bodily couldn’t maintain me up,” Haley says. “It was exhausting to easily get off the bed and make it by way of the day.”

These signs would final for a couple of 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 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 frequent it’s, and what to do should 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 median onset age of 27; the trigger shouldn’t be understood and there are not any recognized danger components,” 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 writer 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 way of remedy similar to fertility therapies 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 issue respiration), shortness of breath, low blood stress, and anaphylaxis, which might be life-threatening,” Dr. Trolice says. In accordance with the National Organization for Rare Disorders, individuals with the situation may also get hives and bronchial asthma.

There are solely round 200 reported instances of PH, based on a September 2023 case examine in Cureus¹, however the situation is probably going under-diagnosed. “I don’t wish 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 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 individuals with PH is anticipated 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 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. Over time, Haley says she met with not 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.

Medical doctors 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 part 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 couple of 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 ultimately, she realized that they appeared to coincide together 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 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 throughout the appointment,” she says. “Afterward, she slid me a notice recommending I discuss to an allergist a couple of doable prognosis of progesterone hypersensitivity.”

Haley took her recommendation and met with an allergist who appeared intently at her signs and after they confirmed up. She confirmed that the signs had 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 doable 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 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 at all times correct,” she says. “However in any case I’d been by way of, it was vital 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 individual by nature, however she says residing with PH generally looks like an uphill battle. For greater than  a decade, she carried the burden of not realizing what was unsuitable together 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 number of the courses had 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 way of the ache, regardless that some days I’d fairly 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 appears to be like 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 considerations had been disregarded again and again by the medical neighborhood. “The roughest durations had been when docs didn’t take me severely or once I was shuffled from specialist to specialist,” Haley says. “Feeling like nobody believed me was extraordinarily irritating and created plenty of psychological hardship for me for a very long time.”

Alongside the best way, Haley realized to advocate for herself, and she or he encourages others to do the identical. “Doc every little thing—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 exhausting 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 hand over. “It has been an extended street—it took me over a decade to get recognized,” Haley says. “It’s tough, however keep optimistic and hold 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

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

In case your PH was brought on by 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 substances within the drug could possibly be accountable. “In fertility therapies, progesterone is combined with peanut, sesame, or ethanolamine oil,” he says. “Folks could be reacting to the kind of oil used fairly than the progesterone.”

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

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 remedy to cease ovulation—similar to GNRH antagonists or contraception, should you can tolerate it,” Dr. Trolice says.

And if you wish to get pregnant? “An allergist can attempt 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 every 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 will assist my physique grow to be proof against it,” Haley says. “Different individuals 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 individuals, docs 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 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 certain to get plenty of sleep, not less than seven hours per evening, plus every day naps. “These adjustments appear to assist hold down the general degree of irritation in my physique, which makes the flares simpler to get by way of,” 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 replacement therapy shouldn’t be given to individuals with this situation going by way of menopause.”

Lastly, some individuals with PH go for a everlasting, surgical answer to forestall ovulation, similar to a hysterectomy (elimination of the uterus) or ovariectomy (elimination 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 individuals 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 enhance with conception. “It was truly 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 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 can be the results of adjustments in your immune system throughout being pregnant. Actually, some individuals 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 could be getting my first postpartum period quickly.”

When to see a physician

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