I’m Allergic to My Period, and It Took Me 13 Years to Get a Diagnosis. Here’s How I Finally Figured It Out

All of her signs appeared random and never fairly linked. 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 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—should 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 Nicely+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 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 onerous to easily get off the bed and make it by means 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 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 job in PMS, by the best way).

Learn on to study extra about Haley’s journey with PH, how frequent it’s, and what to do should you assume you might need it.

Why does progesterone hypersensitivity even occur?

The origin of PH remains 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 elements,” 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 Faculty of Drugs, 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 remedy reminiscent of 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 issue respiration), shortness of breath, low blood stress, and anaphylaxis, which could be life-threatening,” Dr. Trolice says. In line with 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 accordance 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 anticipated to rise as a result of growing 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 tense 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. Over time, Haley says she met with a minimum of 18 specialists and had numerous blood checks. “Generally I used to be misdiagnosed and placed on medicines 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. The whole lot 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 may be triggered by a meals allergy. However finally, 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 received 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 scholar shadowing him throughout the appointment,” she says. “Afterward, she slid me a be aware recommending I speak to an allergist a couple of doable prognosis of progesterone hypersensitivity.”

Haley took her recommendation and met with an allergist who appeared carefully at her signs and after they confirmed up. She confirmed that the signs have been occurring cyclically, throughout 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 doable being pregnant. Haley lastly obtained a proper prognosis of progesterone hypersensitivity.

At that time, she determined to get an intradermal allergy check, 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 check, 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 vital for me to be examined, and the outcomes got here again constructive.” She had a solution ultimately.

What’s life with progesterone hypersensitivity like?

Haley is a resilient and chronic individual by nature, however she says dwelling with PH typically looks like an uphill battle. For greater than  a decade, she carried the burden of not figuring out what was improper together with her and receiving insufficient remedy, 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 troublesome to construct issues.”

Now that she works a desk job, her life-style is extra manageable. “I push by means of the ache, regardless that some days I might slightly 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 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 troublesome 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 group. “The roughest intervals have been when medical doctors didn’t take me severely or once I was shuffled from specialist to specialist,” Haley says. “Feeling like nobody believed me was extraordinarily tense and created numerous psychological hardship for me for a very long time.”

Alongside the best way, Haley discovered to advocate for herself, and she or he encourages others to do the identical. “Doc every part—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 onerous 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.”

In the end, don’t hand over. “It has been a protracted highway—it took me over a decade to get identified,” Haley says. “It’s troublesome, however keep constructive and hold 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

For those who assume you might need PH, step one is to go to your OB/GYN. “They are going to possible refer you to an allergist,” Dr. Trolice says.

In case your PH was attributable to a medicine with progesterone—like contraception or fertility photographs—“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 might be guilty. “In fertility remedies, progesterone is blended with peanut, sesame, or ethanolamine oil,” he says. “Folks may be reacting to the kind of oil used slightly than the progesterone.”

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

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—reminiscent of GNRH antagonists or contraception, should you can tolerate it,” Dr. Trolice says.

And if you wish to get pregnant? “An allergist can strive progesterone desensitization strategies,” 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 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 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 grow to be 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 remedy, there are particular life-style shifts Haley has made to reduce her signs. “I eat a plant-based, anti-inflammatory weight loss plan,” she says. She sticks to low-FODMAP meals and cooked greens, and avoids spicy dishes. She additionally makes positive to get loads of sleep, a minimum of seven hours per night time, plus every day naps. “These adjustments appear to assist hold 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 might cease altogether with menopause. “Progesterone hypersensitivity resolves with menopause, because the physique is not ovulating,” Dr. Trolice says, including that “hormone substitute 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, reminiscent of a hysterectomy (elimination of the uterus) or ovariectomy (elimination of the ovaries).

What occurs throughout being pregnant?

Haley received 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 delivery as a result of there’s 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 may 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 may also be the results of adjustments in your immune system throughout being pregnant. The truth is, some folks 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 may be getting my first postpartum interval 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 together with your menstrual cycle, convey it as much as your OB/GYN. They might refer you to an allergist to check you for PH. Collectively together with your healthcare workforce, you possibly can determine the perfect course of remedy to alleviate your signs.