All of her signs appeared random and never fairly linked. That’s, till she discovered 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—when you touched my face, you may 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.
Consultants In This Article
- Mark Trolice, MD, Mark Trolice, MD, is a board-certified reproductive endocrinologist and infertility specialist based mostly in Winter Park, Florida.
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 although she was an energetic 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 arduous to easily get away from bed and make it via 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, also called 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 be thought to play a job in PMS, by the way in which).
Learn on to study extra about Haley’s journey with PH, how frequent it’s, and what to do when you assume 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 threat 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 Medication, 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 via treatment comparable 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 respiratory), shortness of breath, low blood strain, and anaphylaxis, which will be life-threatening,” Dr. Trolice says. In response to the Nationwide Group for Uncommon Issues, folks with the situation may get hives and bronchial asthma.
There are solely round 200 reported instances of PH, in accordance with a September 2023 case examine 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 examine factors out that the variety of folks with PH is anticipated to rise as a result of rising 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 a number 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 no 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 pieces 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 observed 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 along with her interval, flaring up just a few days earlier than her move 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 observe recommending I discuss to an allergist a couple of attainable analysis of progesterone hypersensitivity.”
Haley took her recommendation and met with an allergist who regarded intently at her signs and after they confirmed up. She confirmed that the signs have been taking place 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 attainable being pregnant. Haley lastly acquired 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 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 via, it was essential 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 protracted particular person 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 realizing 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 number 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 via the ache, although some days I’d quite 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 way in which her issues have been dismissed again and again by the medical group. “The roughest intervals have been when docs didn’t take me critically or once I was shuffled from specialist to specialist,” Haley says. “Feeling like nobody believed me was extraordinarily nerve-racking and created a number 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 thing—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 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 an extended highway—it took me over a decade to get recognized,” Haley says. “It’s troublesome, however keep constructive 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
When you assume you may need PH, step one is to go to your OB/GYN. “They’ll 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 photographs—“the signs ought to clear up whenever you cease taking the treatment,” Dr. Trolice provides.
He additionally factors out that different elements within the drug might be accountable. “In fertility therapies, progesterone is combined with peanut, sesame, or ethanolamine oil,” he says. “Individuals could be reacting to the kind of oil used quite than the progesterone.”
What’s extra, there are a variety of various types of artificial progesterone; you could be allergic to a sure sort however might 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 therapy is utilizing treatment to cease ovulation—comparable to GNRH antagonists or contraception, when you 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 might 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 simply insert round your cervix. “The speculation was to shock my system with progesterone to see if it might assist my physique change into proof against it,” Haley says. “Different folks with PH have had success with this method, however 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, 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 treatment, there are particular life-style 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 evening, plus each day naps. “These modifications appear to assist preserve down the general degree of irritation in my physique, which makes the flares simpler to get via,” 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 alternative remedy shouldn’t be given to folks with this situation going via menopause.”
Lastly, some folks with PH go for a everlasting, surgical resolution to forestall ovulation, comparable to a hysterectomy (elimination of the uterus) or ovariectomy (elimination 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 folks with PH can go into anaphylaxis whereas giving start as a result of there’s 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 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 can be the results of modifications in your immune system throughout being pregnant. Actually, some folks discover their signs disappear completely after giving start.
4 months in the past, Haley gave start 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 interval quickly.”
When to see a health care provider
Autoimmune progesterone dermatitis is fairly uncommon. However when you’ve observed 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 could refer you to an allergist to check you for PH. Collectively together with your healthcare workforce, you possibly can resolve one of the best course of therapy to alleviate your signs.
Nicely+Good articles reference scientific, dependable, current, strong research to again up the data we share. You possibly can belief us alongside your wellness journey.
- Dhaliwal, Gurnoor et al. “Progesterone Hypersensitivity Induced by Exogenous Progesterone Publicity.” Cureus vol. 15,9 e44776. 6 Sep. 2023, doi:10.7759/cureus.44776