My First Clue- High Histamine and How it can Affect your Body
After going over and over my story in my mind and researching nonstop for many years, I made an unusual connection. I made several connections actually. I’ve always had allergies and allergies are an unnatural immune system response to something that the immune system considers foreign.
I woke up one morning with puffy eyes and a few hives. Not only did I have the puffy eyes, and hives, but I also had horrible stomach pain, burning muscles from what doctors diagnosed as fibromyalgia, and I felt like I was going to have a panic attack. I took the antihistamine Benadryl for the hives and facial swelling, went to bed, and when I woke up, most of my symptoms were better. Almost all of them!
It was very strange that Benadryl, for allergies, would help burning pain and my severe stomach spasms. So, I started researching how the symptoms of high histamine levels could affect your body. I already knew histamine caused allergic reactions like hives, itchy/watery eyes, stuffy nose etc. but I had no idea how close to death I had been on so many occasions. I honestly just thought that I had manifested the, “death is near,” feeling in my own mind. I picked a physically functional day for me and I immediately went running to my family doctor with the information I had found. I demanded testing for high histamine levels (Immunoglobin levels). Reluctantly, he ran the tests and found out that on a good, functional day, my IgE level (Immunoglobin E level) was 218. It was never determined what my IgE level was on days where I could not function at all or how high it was when I had to take a trip to the emergency room for anaphylaxis. Normal range for IgE is 0-100, so I was out of range even on functional days. The doctor made an emergency appointment to Allergy and Immunology and I was seen by my newest specialist within 2 days. YES, within 2 days and not a few months!
Finally Diagosed with the Progesterone Allergy- Autoimmune Progesterone Dermatitis (APD)/ Progesterone Induced Anaphylaxis (AIPA)
My visit with this new Immunology/Allergy/ Internal Medicine Specialist was the first time I had seen a doctor that listened to my story, read my emergency room records, went through my journal of symptoms with dates, and asked me hundreds of questions. He may not have had all the answers but at least he was willing to help find the answers.
Going through my journal of symptoms and dates, there was a definite pattern that I drew his attention to. All of my major symptoms were starting to occur almost exactly 10 days before my menstrual cycle (period). He spent 2 hours with me, ran tests right in the office that same day, and I had my first diagnosis. Liver disease was the first that he found right off of a CAT Scan and blood work from 3 years ago that my previous doctor had done. I had severe reactions to the quit smoking drug (Chantix) she prescribed. My previous doctor flat out lied to me about my test results because she didn’t want a malpractice lawsuit on her hands. The other condition that I was diagnosed with was the main condition that caused most of the other symptoms. It was complicated and they all intertwined with each other.
My Immunologist shot Depo Provera (Progesterone) into my upper arm and waited to see if there was an allergic reaction. Progesterone is the female hormone that the ovaries release large amounts of beginning about 10 days before menstruation. Well, I had a small external skin reaction within 10 minutes from the injections. A few hours later I ended up with very large, painful lumps under the skin from a delayed reaction. Those lumps lasted several days until my histamine level at the injection sites dissipated . The test was very obviously positive.
As the doctor explained and apologized for the diagnosis, I began crying, actually a happy cry, and explained to him that I was thrilled to just be diagnosed and have possible treatment options and quality of life. Of course, I didn't want to be sick like this, but I was and I needed answers to be able to have some sort of treatment options. It was such a tremendous relief to know what had been wrong with me for so long. It was also a huge relief to know that I had not been suffering some sort of mental disorder and manifesting all of my symptoms in my mind. The test proved that I have a condition called Autoimmune Progesterone Dermatitis. In my case the more appropriate medical terms were Autoimmune Progesterone Anaphylaxis, Autoimmune Progesterone Dermatitis with Anaphylactic Reactions, or Progesterone Induced Anaphylaxis. OK, so not all doctors are heartless, ignorant, and arrogant, just most of the ones that I had seen. I had finally found one that actually cared and was willing to put the time and tests into solving the big mystery.
Awareness for Anaphylaxis
Buy Books on Naturally Balancing Hormones
Awareness for the Progesterone Allergy!
There is no awareness for this kind of autoimmune disease which is why I’m writing this. Not even a majority of doctors are even aware that it exists and I’ll try and explain why. This is my story and documentation of the 10th diagnosed female with this disease since it was first discovered in 1921. I am supposedly only the 10th female diagnosed! There are about 50 reported cases of Autoimmune Progesterone Dermatitis which consists of skin eruptions like rashes, hives, lesions, and various infections that begin to occur anywhere from 3 to 10 days before menstruation. My case is different and the severe, extremely rare form of the Progesterone allergy.
The disease is usually not life threatening and just a constant disabling nuisance until diagnosed and treated BUT I had been suffering from full blown anaphylaxis. An example of anaphylaxis is when someone eats peanuts, shellfish, or gets stung by a bee and has such a severe allergic reaction that they require emergent injections of Epinephrine (Adrenaline) and antihistamines to prevent shock and death. I am so severely allergic to my own Progesterone that I was literally suffering from anaphylaxis for up to10 days most months.
When I began going through puberty and my ovaries started increasing the female hormone Progesterone, my immune system, due to high histamine levels (Ige level), began recognizing my own hormones as a foreign substance (allergen). It is my belief that the ignored and undiagnosed high histamine levels are the root cause and source of my autoimmune disease.
My Immunologist and Gynecologist listen to me at my appointments now and I’ve gained quite a bit of respect from the both of them. They've put the information I bring them in my medical records, research my discoveries on how I've survived, and have approved my treatments that I developed. My Gynecologist and Immunologist are currently on call for me if there is ever an emergency.
I have survived anaphylaxis without proper diagnosis, medical attention, or medical treatment on numerous occasions. I was forced by the medical profession to research, treat with natural treatments, and survive on my own. It can be done by anyone, remember the mind set “I can help myself!” I have survived at least 15 full blown anaphylactic reactions in the last couple of years that would have normally caused death without Epinephrine injections.
What is really unusual about my case is that I sometimes didn’t even develop hives or swelling and my reactions were internalized, making diagnosis extremely difficult because of no external indications. My current specialists no longer bother me about quitting smoking because it could very well be one of the things that kept me from shock and death by suppressing some of my autoimmune reactions. Yes, smoking is bad, I certainly do not recommend it as a form of self medication, but currently in my particular circumstances, unexpected death from anaphylactic shock seems worse to me... Continued in Part 3 (See Below for Parts 1 & 4 and my new website for awareness of AIPA/APD)
I'm Allergic to My Hormones!- Parts 1 & 4/ My New Website for Awareness of AIPA & APD
- My new Facebook Account for Autoimmune Progesterone Dermatitis & Autoimmune Progesterone Anaphyl
Please feel free to send me a friend request!!!
- Awareness for AIPA | aipa
My new website for awareness of Autoimmune Progesterone Anaphylaxis (AIPA), Progesterone Induced Anaphylaxis (AIPA), and Autoimmune Progesterone Dermatitis (APD).
- I'm Allergic to My Hormones! Awareness for Progesterone Induced Anaphylaxis- Autoimmune Progesterone
Part 1: Im writing this hub to motivate others who've suffered similar stories and situations to get help in getting diagnosed, getting proper treatment, and know that there are many things that can be done to...
- I'm Allergic to My Hormones! Awareness for Progesterone Induced Anaphylaxis, Part 4
Part 4: Ok, time to finish my series. In Part 3 of Im Allergic To My Hormones, my preview of Part 4 stated that Yes, I have found a treatment for my rare autoimmune disease. Im happy to report that...
To get Testing and Diagnosis
List of Doctors and Clinics that are aware of, test, and diagnose Autoimmune Progesterone Dermatitis / Autoimmune Progesterone Anaphylaxis:
Dr. David Wright (Allergy, Immunology, Internal Medicine)
Central Illinois Allergy and Respiratory (AIR)
543 W Miller St Ste A
Dr. Andrey Leonov, MD
Allergy and Asthma Clinic
229 Hammes Avenue
Joliet, Il. 60435
***on a side note, if anyone traveling a distance to be tested, I would call and talk to him and let him know ahead of time. The progesterone is not something they have in stock at the clinic to test. Also, my sample was in sesame seed oil, so if you are allergic to nuts, ask for a different base. Hope this will help some people.
Dr Peter Lee (Ching Sang)
Allergy and Immunology
Suite 250, 1641 Hillside Ave, Victoria, BC V8T5G1 Canada
***There are two Dr. Lee in Victoria who both practice Immunology , so make sure you have the correct one:)
Instituto Universitario USP Dexeus
C/ Sabino de Arana, 5-19
08028- Barcelona. España (Spain)
Dr. Katheryn Brown
Allergy Clinic of Tulsa, OK
8 a.m. to 5 p.m. Mountain time, Monday through Friday
8 a.m. to 5 p.m. Eastern time, Monday through Friday
7 a.m. to 7 p.m. Central time, Monday through Thursday
7 a.m. to 6 p.m. Friday
International Appointment Offices
Mayo Clinic in Florida
Office hours: 8 a.m. to 5 p.m. (Eastern time) Monday through Friday
Mayo Clinic in Minnesota
Office hours: 7:30 a.m. to 5 p.m. (Central time) Monday through Friday
Mayo Clinic in Arizona
Call toll free from Mexico: 001-800-010-1390
Office hours: 8 a.m. to 5 p.m. (Mountain time) Monday through Friday
When arranging an appointment, please provide:
* the patient's name as it appears on the passport (last, first, middle)
* patient's gender
* patient's address
* patient's date of birth
* direct patient telephone number
* direct patient fax number
* patient's email address (if available)
* a brief explanation of the current medical problem (in English)
the preferred date of appointment
* whether the patient will need an interpreter, and if so, what language
Please check this list frequently, as I will update when I find new docs/ clinics!
Histamines Connection to other Autoimmune Diseases
- Explanation of Allergies
Explanation of allergies, autoimmune diseases caused by high histamine levels.
- 80 Types of Autoimmune Diseases
Did You Know There Are 80 Types of Autoimmune Disorders? No, I promise not to list all of them. I will briefly cover the more common autoimmune diseases that I haven't written about in the past. I have...
Other Beneficial Uses of My Treatments
More Information on Progesterone Induced Anaphylaxis (AIPA), Autoimmune Progesterone Anaphylaxis (AIPA), and Autoimmune Progesterone Dermatitis (APD)
Share Your Story and Information with Others
IrisSurvived on May 05, 2019:
I feel like I'm reading my life and anaphylaxis issues. Always revolving around my periods, compounded by food and environmental allergies. How do I approach a new allergist a about hormones and the anaphylaxic reactions that always happens before my period? Doctors can be very complicated. If you know too much about what is going on, you get labeled, if you don't know enough, you walk away with prescriptions, not answers.
Alexandra Cuthbert on September 14, 2017:
Eye bags can one of your worst nightmares, particularly if coupled with those dark circles. Eye Bags Natural Treatment therapies like rose water treatment; cucumber remedy or ice cubes treatment can be applied for treating puffiness.
Michelle on January 28, 2016:
Does anyone still update this?? Looking for help with this but it's now 2016
kathy c on July 07, 2015:
I have been dealing with the rash for 26 years (with my first pregnancy and monthly ever since) and no doctor has ever been able to help me. It's good to finally find a name for it. Now that I'm older and I believe pre-menapausal, it is getting worse. It took years but finally got better. I have also suffered from breathing problems associated with my cycle since I was 11. This is also heriditary. My mother and daughter also have the same problem and I found out my grandmother did also. I'm still trying to find a doctor that can help but haven't had much luck. I'm in the central TX area. But I will print this off and at least show it to my doctor.
Stacey on June 05, 2015:
I'm so glad to read this. Over the past ten months I have survived over 30 anaphylactic reactions on my own. There were months I was covered in hives. Since puberty I had unexplained stomach pain that has never gone away. I am 41. I had reoccurring ear infections and asthma. Then last year after so many antibiotics I came down with a systemic yeast infection. I was treated with diflucan for three weeks. But still since then I have terrible stomach pain and before and during my period I get hives and swelling. I started xolair for idiopathic urticaria two months ago. Now I only get hives around my eyes. But I still have adema and angioadema. My stomach pain never goes away. My Dr doesn't believe that my pain is related to my hives. But I know it is because if I take three singulair a day I can feel much better. I'm seeing a new immunologist soon. But since I'm on xolair they can't test me. I wonder if I should try birth control pills. This is ruining my life because most foods now cause me stomach pain. I can't function well and I'm always tired. My leg muscles always feel exhausted.
Shelby on May 28, 2015:
this is so helpful!
Gen on May 02, 2015:
Oh my goodness, thank you so much for spreading the word about this condition! I appreciated your story, since I have a similar situation with estrogen. My allergist injected both progesterone and estrogen, and the estrogen dot swelled up bigtime! It's so frustrating to think that I never would have found out what I had if I'd just relied on my doctors. They see a rash, they say eczema. They hear you have abdominal pain, they say you have IBS.
I was just wondering if you've ever experienced abdominal pain in relation to your condition. I've had chronic burning, background abdominal pain for about six years, and three years ago my doc removed a cyst and checked for endometriosis, but found no endo. Now I have a doctor telling me my pain is muscular, and I think he's wrong! I think it's internal hives related to my hormonal allergy. A few years ago my allergist put me on Lupron, and for the first time, my abdominal pain went away! I lost 3 pounds, and aside from the hot flashes, I never felt better! But because of the risk for osteoporosis, I could only be on Lupron for 3 months, and the pain came back as soon as I stopped my injections. :-(
Do you have any advice for resources I could go to for more information? The doctors are ridiculously closed-minded these days. I guess I'm on my own...
She-rah (author) from Petersburg, IL on April 11, 2015:
You're very welcome Olga! I'm sorry you have so many allergies (which is a form of autoimmunity whether you're allergic to yourself or not). They can get pretty severe very quickly. Too bad docs don't recognize them as an autoimmune disease. Most people like us are just ignored by a majority of the medical industry.
She-rah (author) from Petersburg, IL on April 11, 2015:
Hi Z, It sure does sound like ADP, actually more like AIPA (Autoimmune Progesterone Anaphylaxis/ Progesterone Induced Anaphylaxis). You don't have to have the symptoms every month or even the same symptoms. The autoimmune disease really isn't as rare as the medical industry thinks! The progesterone allergy is progressive and symptoms tend to progress every time you're exposed to any kind of progesterone whether it be from your menstrual cycle, pregnancy, birth control...I'd definitely be trying to get a positive diagnosis from a doc that has any kind of knowledge of this disease.
Karen Davis on November 21, 2014:
My daughter has had the diagnosis of autoimmune progesterone anaphylaxis for 10 years now! She has a trach because of the frequent throat swells and has been on a ventilator multiple times. The I.V. medication berinert helps her. This is usually used to treat Hereditary Angioedema types I and II. My question is if the ovaries were removed why wouldn't that stop the symptoms?
Olga on August 05, 2014:
Thank you for raising awareness!! Having multiple allergies myself, especially allergy to the ubiquitous corn which is so hard not to get exposed to, i have noticed that i get worse closer to "those" days. So important for people to know !
Priya on July 22, 2014:
Can any one plz help me??? I had been getting angioedema attacks on my face sometimes prior to my periods & at times post periods.....My periods are regular....I dnt have any urticaria or hives....Its just that swelling on my eyelids or lips....Plz let me know what exactly this condition is & how to get it treated....Am not sure if its APD coz i think symptoms of APD are pre menstrual angioedema.....Plz help....
Z on March 29, 2014:
I stumbled upon your page while googling "allergic to menstrual cycle" I think I may have the same progesterone allergy. While my symptoms are not as severe as yours, I have noticed the last 3 months I break out in hives (usually ears, face, hands and feet) about 3-5 days before my period starts. And then it dawned on me about 10 years ago I went into anaphylaxis out of the blue and I also thought it was odd that my cycle started and stopped that same day. The next month I broke out in hives but no anaphylaxis. I didn't have another reoccurrence until January of this year. Do you think this could be the same thing??
Ofbengal on September 29, 2012:
I think my solution to relieving issues of hormone allergies (or sensitivity) will surprise and perhaps even leave many of you curious. I had issues with upper back muscle pain, which started right after I had a hysterectomy. And like many if you, doctors were not hearing me when I told them I thought it had to be hormone related since I never had this issue, even slightly, before the operation. So after many years of taking any path that could possibly offer relief, I found it in the most unexpected place. I went to a chiropractor who was trained to relieve patients of allergy symptoms by correcting your nervous system. I can see your squeshy face from here. Lol His test revealed (along with other allegies) that I had a sensitivity (aka alllergy) to secreting hormones! I'm going to stop there and give you a site to go to for more info for I fully apppreciate how this might sound to some. I will end by telling you that I enjoy greatly my pain free back and no more allegy meds for my seasonal alllergies. All it cost me was time and money. Fortunately I have both. So if your game to explore a new direction check out the website: www.becomeallergyfree.com Good luck
She-rah (author) from Petersburg, IL on June 21, 2012:
Thanks so much for sharing your story Dawn!!! You sound almost exactly like me from childhood on,only the docs tried to tell me I was crazy or inflicting the reactions myself. I was also rendered useless, almost completely bed ridden for 4 yrs from flu-like symptoms, pain, vomiting, siezures, cardiac, and breathing distress...It is a horrible disease with very little info out there. So happy to hear that you were able to self diagnose also. The doctors certainly do not help at all and typically add to our pain, fear, & frustration. I hope you are doing well now after the hysterectomy & your sister finds a treatment to resolve her symptoms before they become life threatening.
She-rah (author) from Petersburg, IL on June 21, 2012:
You're so welcome Susan! I hope my information helps find a resolution to your health issues. Please do feel free to use any of my info to inform your doctors of the disease and your suspicions. Good Luck too you!!!
She-rah (author) from Petersburg, IL on June 21, 2012:
You're very welcome! Please do feel free to take in any of my info to your doc. You'll definitely have to push the docs!!! Good luck & blessings to you!
Dawn on June 13, 2012:
I too have an Autoimmune Progesterone Allergy. I had a total hysterectomy about a year and a half ago. During my periods, around day 2 or 3, I would have an anaphylactic reaction that included severe facial swelling, hives, horrible stomach pain and anxiety. I suffered with this for as long as I can remember and always had some sort of "female" issue going on (I am 45 yrs old now). I remember that approximately 10 days before my period, I would experience the emotional symptoms such as panic attacks, uncontrollable rage, crying, etc. Then as soon as the period started (it was as if someone flipped a switch) the emotional stuff would disappear and the physical symptoms would start. Sometimes the pain was so bad I couldn't get out of bed. I felt like I had a severe case of the flu. Plus, when I was younger it started out as mild cases of hives during my period and then progressed over the years to full blown anaphylaxis. For many years, doctors made excuses for my hives and reaction such as, it must have been something you ate or latex in your underwear (I wear all cotton). I started keeping track and noticed that everytime I got hives, I also had my period. I fought the hysterectomy for years but finally relented and had it done since the reactions were so severe and life threatening. I was known in my town by the EMTs as the lady whose face blows up. Not exactly the title I was proud to have. Now my sister who is 2 years younger is experiencing a lot of period related symptoms that render her useless. She has not officially been diagnosed yet but has tried everything from vitamin supplements to bioidenticals to diet changes (gluten free, milk free, etc). She is in a horrible way right now. I can vouch that hormone allergies do exist and there is hardly any information and doctors do not know much about it. It was a very frustrating process for me and I pretty much had to research and diagnose myself.
Susan on May 07, 2012:
Hi, i'm getting hives around my menstrual cycle too. First it was before my periods, now its before and after. I also have muliple sclerosis, so thought maybe from overdoing it and not pacing myself at time of menstrual cycle. But now reading this, I dont like putting everything down to MS. Its awful, i have it on my ear, and eyebrow too. and that side is always itching. but the hives seems to be more prominent on my neck, then i cant do much physically. I will be going to the docs and mentioning this. I also had allergies tests with the immunologist. And tree pollen was high, aswell as hazelnut. But i dont eat any nut containing food. And not too sure whether the trees would cause the hives. Have very dry skin, which the dermatologist sais was psoriasis on my ear and face. But when i apply moisturiser it wont get better. Im soo stressed with this now, and dont go out as it is with my ms. I am in the uk, so wondering if my docs will help. Thank you She-rah for your awareness.
beep on April 24, 2012:
Thanks for the page. I have been getting facial swelling around the time of ovulation for 5 months. And I have had acne issues through adulthood. My doctor thinks the swelling might be related to my slightly underactive thyroid, which I am taking thyroxine for. She blew me off when I asked for further investigation into my swollen face/eyes issue, which I am fairly certain have to do more with my female hormones. She said she had never heard of anyone being allergic to ovulation when I postulated this and my fear of progression to anaphylaxis. But she did ask if I have asthma or hayfever (yes to both) so she must be considering auto immune. And my thyroid issue is autoimmune as well. I had been on birth control pills for nearly 10 yrs, which was maybe masking this. I will push for more investigation based on your site. Thanks!
She-rah (author) from Petersburg, IL on October 27, 2011:
Hello Helen, Thanks so much for your comment! Yes, I completely agree. I have to be very careful of certain foods, supplements, chemicals, etc. certain times of the month as I can't avoid my hormone allergy unless I have a hysterectomy. They all have a huge effect if there is any kind of sensitivity to them. I advise all my clients to avoid any other allergens that their aware of so that they don't continue to compound the condition. About all we can do to get the balance right is listen to our own bodies. Docs don't seem to have any concern about getting any kind of balance right. They love their meds to much :)
Helen on October 16, 2011:
I have noticed that the foods and aupplements I take can affect my hormones, its about getting the balance right though.
She-rah (author) from Petersburg, IL on October 12, 2011:
Hello Rose! I used to have the above symptoms,some I still do like minor breathing distress at times, frequent infection, and sore joints/back just from being autoimmune. I too, try to stay in great shape with working out everyday, taking quality vitamins/minerals...
I was 17 when I finally started my period and it was regular, had to do with my weight as well. I've always been very under weight and have to work very hard at gaining. You do have autoimmune urticaria, which is just a diagnosis that docs give when they really have no idea as to the cause or source of your hives. MOST of the cases I work with including myself and my daughter, have our worst breakouts at night. I do believe that seems to be the time when our hormones spike and a ton of other actions, especially regarding our immune system, occur within the body.
My daughter and I also have what's called cholinergic urticaria which is an allergy to our own sweat, again most times breaking out at night when our bodies get warm from being under covers. Hives also occurring where there are elastic bands or friction on our skin like the waist, wrists, inner elbows, ankles...
It does sound like you possibly have the APD since it subsided when not having a period and then started back up again when you started having a period again. Also the fact that most of your reactions are occurring before your period. You might consider keeping a journal of when your symptoms occur in correlation to when you start your period. This will give you a better idea. The birth control that you were on will only progress the autoimmune progesterone dermatitis since it contains progesterone. This will lead to symptoms becoming worse, possibly much worse ending up with autoimmune progesterone anaphylaxis like in my case.
A majority of the cases I work with actually acquired the disease from various forms of progesterone containing birth control. Yes, all they symptoms are tied together. There are symptoms for autoimmunity alone like joint pain, headaches, digestive issues (including eating disorders), and then you have the symptoms of the specific autoimmune disease like your hives from progesterone exposure.
Antihistamines do not work in most hormone allergy cases and if they do, it's temporary, just like what happened to you and the benadryl becoming ineffective. Since the disease is progressive it eventually breaks thru antihistamine treatment or you just build up a tolerance to the medicine where you have to take more and more for relief until it's no longer effective at all. I will email you with more info and please feel free to ask me anything :)
Rose on September 29, 2011:
I'm curious if anyone can relate to my story and help me decide if I may have Autoimmune Progesterone Dermatitis as well?
I am now 22 years old, had my first menstrual cycle at 16, and began experiencing hive breakouts at the age of 19. The hives occurred just about 6 months after I moved back to the US (I had lived in Latin America for a few months), and just a few months after I started receiving treatment for bulemia.
I hadn't been having periods for a year or so due to my poor health, and then they starting coming back once I began treatment and was getting more nutrients in my body. At the same time, I started taking birth control pills and anti-depressants as well. The hives began happening at night, but not every single night and I have never found a pattern to this. Perhaps I do get them prior to my period, but my cycles have never been regular so it has been difficult to track.
For the first year I was able to take non-drowsy benadryl each night before bed, and they usually would never appear. However, eventually the Benadryl stopped working and I began seeing an Allergist to find out what was going on. As of now, he has diagnosed me with Autoimmune Uticaria.
In addition to hives, I also feel as though I might have Asthema. My joints are also very sore and tense and I have chronic back pains because of this. I am now very healthly, in great physical shape, and I stretch/exercise every day so I don't think I should be in such pain... I also sometimes will wake up with one really swollen eye/cheek, and sometimes at work I will notice that my hands/fingers are a little puffy. I also experience headaches most days and a few months ago they had developed into migranes. Before discovering Autoimmune Progesterone Dermatitis, I really didn't think that all of these symptoms could be tied together, but perhaps they are?
She-rah (author) from Petersburg, IL on September 20, 2011:
Hello Missy1098 Thanks so much for your comment! Somehow I missed this one, usually don't take so long to reply...Yes, it does sound like Autoimmune Progesterone Dermatitis. So very glad the information helped. It's VERY difficult finding a doc to test and treat so please do feel free to ask me anything. I will provide as much info as I can. I've also listed doctors (above) that are aware of the disease and will test/diagnose. Hope it helps!!!
Missy1098 on June 16, 2011:
Oh my gossh! Thank you so much. Im only 14 and I just started getting my periods. The first time it happened they thought it was chicken pox or sun poisoning but hten I got it everytime I start my period, which is actually every 2 1/2 weeks. At the beginning of my period I get very VERY bad hives and my eyes swell up. I didn't know if I was just going crazy or something!
GandB on June 04, 2011:
Thank you so much for the info. I was just so excited to read this information that I wrote before I could read it all. I am just so happy that I am not going crazy and that I am not the only one. I want to try anything that might help. I know that I am going to definitely talk to my new doctor about this as well and hope that she knows what I am talking about. Thanks again.
She-rah (author) from Petersburg, IL on June 02, 2011:
Hello GandB, Thanks so much for your comment and questions!!! NO, your not going crazy, although the doctors wish/think we are. Yes, sounds exactly like the APD symptoms and even sounds like your progressing into the more severe form called autoimmune progesterone anaphylaxis or progesterone induced anaphylaxis (AIPA). APD only effects the skin, so they say, but AIPA effects the skin and also causes organ involvement like your breathing distress. Yes, I had the breathing distress as well and still do very mildly sometimes. I've been in remission for 1 1/2 yrs but still have what I call "minor" issues from simply being autoimmune. The tests that they are running will show nothing. APD is not a test that they just do and most docs do not even know if the existence of autoimmune progesterone dermatitis let alone know anything about testing/treating. They all just think were nuts and put us on antidepressants or antianxiety meds in most cases and say that it's all in our heads. My mom told the docs that I was allergic to my periods when I was 17yrs old and they treated her horribly as well. Because of their refusal to listen or even look into the possibility of a hormone allergy, I suffered for 24yrs and my symptoms progressed into life threatening and repeated near fatal reactions. The antihistamines work for only a period of time, if they even work at all, but eventually they become ineffective. My treatment is all natural,organic, and bioidentical estriol that I simultaneously extract/infuse. Not sure if you saw the ebay capsules above, but those are my treatments. In parts 3&4, there is info on how I was tested/diagnosed with the hormone allergy and how I developed my treatments. Please do feel free to contact me via email for questions or further information: email@example.com
You can find the links to parts 3&4 above in my hub! I hope this helps and have a great day!
GandB on May 27, 2011:
I am so glad to have found out that I am not going crazy. I told my ob/gyn that I think I am allergic to my periods and he just looked at me like I was nuts. He said you cant be allergic to your periods. I have always had irregular periods. They are happening every two weeks now and I was never able to take the pill to control them cause they always made sick with migraines and rapid heartbeats and just made me really horrible in general. I went through this dramatic change like 4 years ago and started having horrible migraines every time I was pmsing. That went on for a year or two and then I started always breaking out in hives a few days or a week before each period. Now my periods are so frequent I break out in hives everyday and have to take antihistamines everynight in order to get through the day. I also started getting dermagraphism. I have had many ultrasounds and blood tests and things have turned out normal. I also always seem to have a sneezing fit right around the time I am about to start too. I am 39 and I think I might be starting to have perimenopausal symptoms. But now I am feeling sometimes like I cant breath. I just moved to another state not to long ago and that symptom didn't seem to start until a few months after I got here. So I dont know if they are related. But it seems to me now that I sometimes have these breathing problems right around my period as well. Did you have this symptom too? I would love to get rid of this or help this situation in anyway. Right now I am taking antihistamines during the day every few hours just to get through the day.
She-rah (author) from Petersburg, IL on May 12, 2011:
Hello Nicole! Have you seen an allergist/immunologist? VERY few doctors are even aware of the progesterone allergies existence. Yes, you sound like I did during pregnancy but what caused my remission was mainly the increase in estrogen. Estrogen only is the hormone that should be used, so I'm a bit concerned that endocrinology put you on progesterone. It could be capable of causing you to build up a resistance in minute amounts and building up but didn't work for me. Typically, the more progesterone you're exposed to the more the autoimmune progesterone dermatitis progresses. That's what happened to me after many years of misdiagnosis. The test for APD/AIPA is very specific and will not show in any other tests at all leading docs to believe there is nothing wrong with you or it's all in your head. My treatment is all natural/organic bioidentical estrogen from Pueraria Mirifica. Not sure if you got to part 4 of my series where I mention my treatment?! I've been in remission from anaphylaxis for 1 1/2 yrs now, woohoo! Please do feel free to ask me anything! Have a great day!!!
Nicole L on May 11, 2011:
Oh my! I can't believe I found this and it sounds to me like it's exactly what I have been dealing with for years. I have always thought I had acne because these rash-like symptoms never really go away. I have been to several dermatologists and have tried treating it like allergies or acne with no success.
I noticed when I became pregnant with my first child, within a few months, my skin was clearer than it had ever been and it stayed that way until after a stopped nursing her (about a year after giving birth) and once my cycles started up again. Then I became pregnant with my second child and had clear skin again until after I stopped nursing him and starting having periods again. Another symptom for me besides the rashes are migraines. When I was pregnant, however, I had no migraines.
I am in the process of being seen by an endocrinologist and have had blood labs done and have found nothing really "wrong". He started me on progesterone to see if it would help. I have only been on it for about a week now and have noticed a slight difference in the severity of the rashes and migraines. I am also going to look into the natural ways you have discussed to see if it helps me too! Thanks so much for this information! If I can change this, it will change my life!
She-rah (author) from Petersburg, IL on April 08, 2011:
Hello! Yes, I have had that repeatedly! I would either get infections like strep/staph in my throat or acid from my stomach spasms was rising up my throat and into my sinuses causing blisters in my throat, puss pockets, blistering of my mouth and lips. I had multiple organ involvement before my periods from anaphylaxis before I was diagnosed and started treatment. If you are able to find a doc that knows about APD/AIPA (progesterone allergy)and they test/diagnose you with it, then they typically offer to do a hysterectomy/oophorectomy (removal of ovaries), lupron injections, prescribe male hormones, or put you on high doses of synthetic estrogen. I could never take any form of synthetic hormones and the other treatment options were not feasible for me either. If you look above before the comments, you'll see items listed on ebay. Those are my natural/organic treatments that I developed out of a plant called Pueraria Mirifica. This plant contains a very potent bioidentical estrogen that I use to control my symptoms and maintain remission. It is not a synthetic estrogen like the prescriptions from the doctor and so far my body is tolerating it very, very well. I've been in remission and able to control severe symptoms for almost a year and 1/2. I hope this helps and please feel free to ask me anything!!!
Rhiannon on April 05, 2011:
Have you ever heard of anyone having sore throats and having sever internal allergies before their periods? If so what did they do
She-rah (author) from Petersburg, IL on April 05, 2011:
Hello Lori! Thanks so much for your question and comments! Actually the migraine with auras, slurred speech, face/mouth numbness, and numbness in extremities were all things that I used to suffer from every month before my period when my progesterone was rising. I had several CAT scans done to rule out strokes/TIA and found out that my progesterone was causing me to have simple-partial seizures with stroke like symptoms that lasted for up to 7 months at one point. My memory, especially short term, is still effected from repeated seizueres. ER always just told me that I was having panic attacks and never once treated me for anaphylaxis.
The bio identical estrogen, the kind from pharmacies, is still processed and altered from it's original state. More powerful that the natural sources like those found from phytoestrogens. I'm guessing since you said bio identical estrogen that your not on Premarin or Prempro?! Both of those are derived from the estrogen found in female pregnant mares (horses) and are very well known for their risks of causing female related cancers. The forms of estrogens from the pharmacy can cause a condition called estrogen dominance, which is what you seem to be suffering now. No, the docs are absolutely not knowledgeable! The bio identical estrogen I am on is a completely natural, organic, and unprocessed bio identical estriol (the safest and most beneficial estrogen in the body). It increases estrogenic action within the body and at the same time, blocks harmful estrogens from binding to the receptors balancing estrogen dominance. I can not use any kind of progesterone supplement and am doing really well on just the Pueraria Mirifica treatments for my autoimmune progesterone anaphylaxis. Seems to me, with your listed reactions to progesterone, that you also suffer an allergy to progesterone as well. The Pueraria Mirifica controls a majority of my progesterone allergy symptoms without overdosing my body on too much estrogen. I would have to say that my hormones are pretty balanced now and I'm on REALLY high doses of the Pueraria Mirifica treatments to maintain remission. I hope this helps and please feel free to ask me anything!
Lori on April 04, 2011:
I have been put on synthetic progestins and bio-identical progesterone and each time I get so sick. I get a horrible migraine with auras. I then get the neurological symptoms of slurred speech, facial numbness, hand/finger numbness, etc.
I had an ablation and was told my estrogen was low. Due to the ablation, I was told I did not have to take progesterone. I have been on bio-identical estrogen Since July, 2010. Now my estrogen level is too high and my progesterone level is too low.
Has anyone experienced this? I can't find a doctor that is knowledgable in dealing with this... Now I am being told I will get uterine and breast cancer.
She-rah (author) from Petersburg, IL on January 26, 2011:
Hello Jill, Thanks so much for your comment and question! Yes, I have a few ideas and questions as well. Hope you don't mind. Are you on synthetic progesterone like the kind found in birth control??? The synthetic form is known to cause an acquired form of Autoimmune progesterone dermatitis. My guess would be that somehow you've developed an allergy to the progesterone, not born with it like me, but more than likely acquired it from exposure to a synthetic form. You can not use progesterone, especially a synthetic form, if you have the hormone allergy. Are you on any kind of estrogen treatment??? Usually after a hysterectomy, estrogen supplementation(synthetic) is prescribed to prevent hot flashes, osteoporosis, cardiovascular disease, depression... but they have found that the synthetic estrogens are a major cause of female related cancers. That's why I use a beneficial bioidentical natural form of estriol to control the symptoms of my autoimmune progesterone anaphylaxis. I can't have synthetics of any kind and a hysterectomy could have caused more serious problems for me. You sound like you have the more severe form, the AIPA, swelling with organ involvement like cardiac, breathing distress are signs of anaphylaxis. It's not just causing skin manifestations like with the milder form, autoimmune progesterone dermatitis. I highly advise getting off the progesterone, the more exposure to it, the more progressive the hormone allergy becomes. To the point of being life threatening! This is just my opinion, of course, I am not a doctor but am very knowledgeable of the progesterone allergy. You can find out about my treatment in parts 3&4 of this series. The links are above. Please feel free to ask me anything and I'll do whatever I can to help! Have a great day!!!
She-rah (author) from Petersburg, IL on January 26, 2011:
Hello AngelaYM, Thanks so much for your comment! No, your not crazy, most of the docs just don't have a clue regarding the hormone allergy. It's an "orphan disease". Actually, it does sound like you have Autoimmune progesterone dermatitis (the same hormone allergy as me). Sounds crazy, I know but I had to increase my estrogen/ progesterone levels in order to go into remission and stay there. Would like to know what kind of birth control your on??? More estrogen related or progesterone related. In some cases of the APD, there were women that they treated with synthetic estrogen to control the symptoms, my treatment is a natural bioidentical estriol treatment that I developed from a plant found in Thailand (I couldn't have synthetic hormones of any kind). When my hormones increased during pregnancy, my symptoms subsided and I went into remission because my body built up a tolerance to an increase in hormone levels. Would work like that with birth control as well, so it seems that the additional hormones from the birth control, allow you to go into remission and when you go off of the birth control, your symptoms emerge. Seems you may be like me and had the progesterone allergy since puberty but the birth control was controlling your symptoms for the most part by increasing your tolerance. Not sure if you read Parts 3 and 4 of my series but I do have a natural treatment for this condition and have been in remission now from the severe form of the hormone allergy for a little over a year. I hope this helps and please feel free to ask me anything (firstname.lastname@example.org) Have a great day!
Jill on January 25, 2011:
I am 43 and had a total hysterectomy three years ago. I also have interstitial cystitis and had toxemia during my pregnancy. I have been struggling to get my hormones balanced and recently increased my progesterone significantly. I have been suffering with facial swelling especially around the eyes and forehead.Also heart palpitations and slight wheezing. Any thoughts??? thankyou
AngelaYM on January 25, 2011:
I'm so glad I came across this site! I've been an allergy sufferer all my life, food, dust etc., but when my hormones kicked in at 11/12 years old they got progressively worse.
I went on birth control when I was 15 years old and when I went off of it at age 20, 2 months later I got INSANE hives. Nothing else had changed in my diet or habitat, I knew deep down it had to be related to hormones/birth control. The hives lasted months (at least 3) and covered my entire body, moving and changing daily. I was put on very strong antihistamines but the hives did not go away until I went BACK on to birth control.
Even when I was on the birth control, the week when I had my period and didn't take the pill each month...the hives came back and then would go away again when my period finished and I took the pills.
Now, six years later I've tried going off the pill again and two months after going off the pill I have these TERRIBLE hives all over my body again. Some days they are on my face, today my lips are completely swollen, along with huge hives on the rest of my body. I'm hesitant to go to any doctors because when this happened 6 years ago all I got were more questions, and no answers, so many tests with no solution. When I told doctors about the connection to the hives and my birth control they laughed and told me that was definitely NOT connected. I've been feeling hopeless, and this is the first bit of information I've come across that has a connection to what I've been experiencing!
I'm located in Toronto, Ontario Canada, and I HAVE to find a doctor who will listen to me! It sounds like it's different from what you have experienced but at least now I know that it is very possible that hormones and allergies are connected and I'm not crazy like my doctors suggested.
She-rah (author) from Petersburg, IL on December 26, 2010:
Hello Sherri, Thanks so much for your questions and comments. I would honestly have to say, Yes, that the symptoms you are experiencing seem to be related to an increase in your progesterone causing an allergic reaction. It can take up to 3 weeks for histamine levels to drop back down to normal and completely stop reacting. By that time, our progesterone increases again and we start reacting again about the time they're almost gone. The symptoms of this autoimmune disease are very vast ranging from mild like the hives you're describing to severe and life threatening reactions like the ones that I suffered. Not sure if you finished reading my series on the AIPA/APD but I developed a natural treatment and I've been in remission for a year now. This month marks my 1 year anniversary in remission and avoidance of my anaphylactic reactions. Heat will make the hives worse and they also seem to be the worst in the evening time for most. Splashing your neck in cold water or taking cold showers may help keep the flaring down and reduce itching, Brrrr, lol. I only get about 2 or 3 hives a month now, a few days before my period and that's only if I take a hot bath or shower, as soon as I cool, they disappear. Seems to be more related to my sweat allergy and the combination of my progesterone increasing at the same time. Parts 3 and 4 tell you about my treatment and how I've been able to go into and maintain remission. I hope this helps and please feel free to ask me anything!
Sherri on December 25, 2010:
I have just recently (in the last 3 months) been perplexed by the appearance of hives on my neck around 7-10 days prior to my last 3 periods. The hives seem to almost fully disappear by the time of the next outbreak, and they are painful at their onset (first day), then just itchy for the remaining period of time. They seem to flare up every time I wash my face or shower (around warm water). I have always been prone to acne/breakouts around that same time frame (a week prior to my periods), too. Other than the skin issues, I do not seem to have other symptoms. Does it seem possible that I have some sort of hormone allergy, given the cyclical skin symptoms (though mild)?
She-rah (author) from Petersburg, IL on December 14, 2010:
HI Viky! Found me I see :) Just click on the one your interested in, you'll want one with the 500mg caps for breasts. Don't worry about the bids, that's the price. They're all buy it now, I don't auction them. I'll send you 5 pages of guidelines/instructions as well. They're just things I've found out along the way that have worked best for me but you will want to modify according to what your wanting. I can help you with that if you like. Thanks for looking me up and have a great day!
veronica(viky) on December 13, 2010:
please,explain to me how to order my products for my breast i saw theres a bid what does this mean!please dont delay thank u
She-rah (author) from Petersburg, IL on November 28, 2010:
Hi Carrie, Thanks so much for your comment! It does sound like you have APD. Sometimes the hives won't subside completely between your periods because it can take up to 3 weeks for histamine levels to drop and the reactions to subside. Before your histamine ever drops completely your going back into another cycle with your progesterone raising causing increase in flares. Not sure if you finished reading my series on the AIPA/APD (Parts 3&4)I do have a treatment, very effective for most, and it's all natural and organic. Several women, including myself, have had great results with either complete remission of symptoms or significant relief. I have currently been in remission for almost a year. I still have a few health problems just from being autoimmune but NOTHING compared to the multiple organ involvement and seizures from anaphylaxis. As long as I avoid other allergens that I have, especially before my period, I do pretty well, same as the others. I may be able to help but I of course can not guarantee results as each case is very different. Please do contact me further info! Have a great day!!!
carrie on November 27, 2010:
I was truly touched by reading this! I have had problems with hives since 2007, I have seen so many doctors and specialists, with no real answers. I have been tested for lupus several times, as they said I had all the symptoms, but the tests has always came back neg. they tell me that it dont really mean that I dont have it, as the tests might not show it. I have told the doctors that about a week to 10 days before my period it gets really bad, I have hives 24/7, all month long, but at times it is unmanagable. They have treated me with 75 mg. of atarx 3 times a day to keep me from looking like an alien and diagnosed me with chronic uticaria, they said its just something that I'm going to have to live with. It has been over 3 years now and I'm still in the same condition that I was then, but my hives are under controll as they say. For me its not under control unless its diagnosed. My hives cover my whole body, face, head, arms, legs, chest, stomach, back...etc. everything except the palms of my hands and the bottom of my feet. It is so uncomfortable and has really effected me mentally, I just want some answers!! If anyone can help, please do!
She-rah (author) from Petersburg, IL on November 18, 2010:
Thanks again! Yes, I read that they just started posting the trained docs on NAET, maybe I'll get lucky and find one of them not listed, really interested in trying it for my hormone/sweat/other allergies. I'll have to take a look at the other method too. I'm doing quite well but still having a few minor problems, nothing like before. I've managed to avoid anaphylaxis for almost a year but it sure would be great if I could just be cured completely and not have to keep up with my daily routine of everything to maintain functionality. I have NO willpower, :) I live in Springfield, IL and it's not to up and up on alternative methods of treatment. Looks like St. Louis or Chicago would be the closest but that was just checking their website list. There are several acupuncture/acupressure clinics so maybe luck will be on my side and one of them is trained in the NAET. Thanks so much for the info and links, I will check them out!!!
Jennifer on November 18, 2010:
Know that there are MANY Naet practioners who are not listed on the site. Only those who took a workshop in the past year. That leaves out many who are trained.
Where do you live? Another promising treatment is called AAT, but I don't have first hand experience with it, and I'm not sure if they have treatments for body organs, glands and excreations.
But I hear from people who had great results with other allergens. Just another tool to investigate.
She-rah (author) from Petersburg, IL on November 18, 2010:
Hello Jennifer, thanks so much for your comment! I had another person comment on my hub about the NAET. I had heard of it before but I've read so much that I was getting it confused with the allergy elimination diet, which I didn't fair so well on. I just took a closer look to refresh my memory and it sounds very promising! Looked to find a doc in the area that's trained in this specific method and the closest one is 100 miles away, not so good at traveling. I'm going to call around to some places closer to home and see if I can find a doc that would be willing to get certified/trained in this method of treatment. I'm always open to new treatments and completely believe in the alternative healing methods, that truly do work miracles. Obviously or I wouldn't be doing quite so well, lol. Thanks again and I will update if/when I can try the NAET.
Jennifer on November 18, 2010:
I had the same issue years ago, but it also included my ovaries, uterus, estrogen, etc. I was treated through NAET [Nambudripad's Allergy Elimination Treatment] for all of them, and never had a problem with a reaction to my hormones and organs again. My periods went from totally awful with migraines and in bed for 3 or more days, to just another day of the month.
More info can be found at www.naet.com
I hope this helps other too.
She-rah (author) from Petersburg, IL on November 11, 2010:
Hello Hamel, Thanks so much for your comment! What the doctor told you to research is the same thing that my hubs are about. The condition has a few different names: Autoimmune Progesterone Dermatitis is the "Progesterone Induced Autoimmune Urticaria" that your speaking of. It is an allergy to progesterone causing allergic reactions that affect the skin only, causing hives (urticaria), rashes, blisters (especially of the lips), swelling (mostly facial), acne, etc. There are only about 50 diagnosed and known cases reported. The condition that causes anaphylaxis is the same condition only much more extreme and a severe life threatening allergy to Progesterone. This is the one that I suffer. I am only the 10th diagnosed and documented case since 1921 but there are many others that suffer 1 or the other and just never get diagnosed. That is why your not finding much on this specific autoimmune disease. Doctors seem to think that it is very rare, but it is not as rare as they think. They just never test,diagnose, or treat properly! The Anaphylactic severe form affects your organs causing breathing distress, stomach spasms, bladder spasms, cardiac issues, seizures, shock, etc. Maybe just 1 or 2 organs are involved and sometimes it causes hives and swelling along with the organ involvement but not always. Not sure if you read the rest of my series Parts 3 & 4, but I go on explaining how I was diagnosed and what my treatment is. Usual treatment offered by doctors are with synthetic estrogen (cancer causing kind), Lupron injections to kick the female body into menopause, removal of ovaries (oophorectomy), or a hysterectomy. I am using an all natural, organic, and beneficial estrogen that I developed and have currently been in remission for 11 months. My treatment is Patent Pending as of 11-3-10. No ER visits or organ failure. I do still have my glitches because I am autoimmune but my anaphylaxis is under control. A few other women that have this condition are also using my treatment with a great deal of success. My website devoted to awareness of this condition is:
There is a forum with other stories like ours, a page with the estrogen that I am using from Pueraria Mirifica, all my links to my complete story, and other links to my research about this autoimmune disease and treatments. Links to Parts 3 & 4 can be found above or on my website. Please let me know if I can be of any more help!!! My email is: email@example.com
if you would like to contact me for further info.
Have a great day!
hamel on November 11, 2010:
I have been going through a lot of symptoms on here for the last six months. After seeing several doctors, with a diagnosis, I finally posted my symptoms online and email several doctors requesting help. Recently a doctor told me to research "Progesterone induced autoimmune urticaria" and this site came up. How is this different from anaphylaxis? And could you lead me to perhaps lead me to areas about this and treatments for "Progesterone induced autoimmune urticaria"? All I have been able to find is scholarly articles.
Any help is very much appreciated! Thank you!
She-rah (author) from Petersburg, IL on September 07, 2010:
Hello Myst, Thank you so much for your comment! So sorry to hear about your migraines, I too have suffered from severe headaches for days on end. I seriously think you might see a huge difference in your migraines when you start the hormone treatments! I know that my estrogen cream has made a miraculous difference in my Progesterone allergy. I will certainly check out the NAET program. I've read about it before but, if memory serves me right, it has to do with a special diet, supplements, and detox. The supplements and detox I can handle but the diet causes me to lose weight very quickly and I get down to dangerous levels (88lbs.) It's absolutely amazing the amount of illnesses, diseases, and autoimmunity allergies can cause. I have another hub on how high histamine/Allergies cause these various things if you wanted to take a look.
myst on September 05, 2010:
Hi She-rah. I've suffered from migraines associated to my cycle for as long as I can remember. I've tried everything and I mean everything! I've been to pain management specialists, chiropractors, herbologists...everything. I'm currently undergoing allergy elimination treatments. I'm not quite sure if they will eliminate my migraines, because I haven't been treated for my hormones yet (I just started the treatments a few weeks ago). I've been treated for things like vitamin B, A, and grains. My next treatment will be for the hormones, but I came across your web page and my heart went out to you. I've never had reactions that bad, but my migraines usually last 3-5 days so I do know about suffering. Anyway I just thought maybe you would be interested in these treatments, as I've already noticed a difference in the severity of my migraines since starting these treatments. Its called NAET and here is the link http://www.naet.com/. I wish you the best, and thanks for posting your webpage!
She-rah (author) from Petersburg, IL on July 12, 2010:
HI Erin! Thanks so much for reading and commenting! Don't worry, there is hope and you can have somewhat of a normal life again. Not sure if you continued reading the rest of my series but I explain my treatment and how I've gone into remission (the links are above). It is a natural treatment that the docs had nothing to do with and one that I developed on my own. Myself and 2 other people so far are using it for AIPA/APD and we have maintained remission. That doesn't mean that it will work for everyone and it is experimental on our part but very successful so far. The condition is considered very rare by the medical profession and it is extremely hard to find a doctor to test and diagnose as most have never even heard of it. You may want to try Allergy/Immunology, your internal med, or OB/Gyn, talk to ALL of them. Allergy/Immunology is your best bet and go in fully armed with all the info you can find, including my story! The test that needs to be done is with Depo Provera. If your on birth control get off of it immediately! I can explain what my husband and I did for many years to prevent pregnancy but I'd prefer to do it thru email. My email is
Be very careful with the facial swelling, it can eventually lead to your throat swelling like it did in me. APD can eventually lead to AIPA, the form that I developed due to lack of diagnosis and treatment and it is the severe allergic reaction causing anaphylaxis. You may want to talk to one of your docs about getting an Epipen just in case. I carry one with me at all times and also have one at home. I never had one until I was diagnosed and haven't had to use it since I started treatment but I do carry it just in case.
YES, I have problems with staph and the blisters on the lips aren't really fever blisters, they're an allergic reaction! I have been what the docs call "colonized" with MRSA (antibiotic resistant staph) since the age of 19. I had it in my throat, neck bones, and shoulder joints. Took 3 months to recover from and my doc told me that I would always have it. I never really have problems with it becoming infectious since 19 and am not contagious unless I have open infection like the spider bite looking marks (small pimples on my arms/legs). I've only had 2 breakouts fairly recently that I got rid of right away and was probably stress related. Take Turmeric if your stomach allows you too and that will stop the breakouts and prevent them. Pretty much, EVERYONE is a carrier or "colonized" with it. It just depends on the individuals immune system as to whether it actually causes infection or not. I would also see if your docs can do a MRSA test. If they're treating you with a sulpha antibiotic, then they probably assume it is MRSA. It's one of the only drugs that's still effective against it and it never clears the infection completely. AGAIN, it is highly contagious in the infection state (spider bite looking marks, boils, etc and can infect ANY part of your body) but you are NOT contagious if you do not have open infection. Your doctors probably haven't told you that! and they're not really telling anyone that. MRSA is rampant right now and very dangerous if your autoimmune. Please do contact me thru email or on my forum at www.awarenessforaipa.com and I will help with any questions/concerns you may have. Hope this helps!!!
Erin on July 11, 2010:
Like many others I am convinced I have APD. I knew my skin conditions were related to my cycle long ago but could never put a name to it. I stumbled on APD on the internet and started crying. I have had the swelling of the face since I was a teenager along with eczema, itchy skin, tingling sensation, hives, but my main problem is the constant fever blisters (or at least that's what they keep telling me they are). I also have started having random staph infections on my skin, do you find this with your condition or others who have it? I am nervous to approach my doctors with this and would love some advice as to how I should attempt this. Should I start with my gyno/OB or my doctor (internal med)? I have searched out both specifically and adore them because of the level of caring and listening. I would appreciate any advice you have. Thank You for your message of hope and awareness!
She-rah (author) from Petersburg, IL on June 29, 2010:
Hi Tracy! Thanks so much for the comment and glad you found me! I believe that many women have this condition and it remains undiagnosed their entire lives. Dealing with the doctors is a complete nightmare when you have autoimmune progesterone dermatitis/ anaphylaxis(APD/ AIPA). Have you visited my website? www.awarenessforaipa.com There are other stories there in the forum. I have been in remission for 7 months now using an all natural estrogen cream that I developed. I'm extremely sensitive to just about everything so my treatment options were very limited. Parts 3&4 of this series explain my treatment and how I've been able to regain my life. It is truly a very disabling condition that doctors just do not understand! Stay away from hormonal birth control, they can actually be a cause of this autoimmune disease. As far as the pimple issue you had, you may want to research a bit on staph or MRSA. I have problems with staph and other infections due to being autoimmune. Can become very dangerous and life threatening if not taken care of properly. Please email me or contact me via my forum: firstname.lastname@example.org if you have any questions or need help with doctors as far as getting diagnosis and treatment. I'm more than happy to do what I can to help!
Tracey Brogan on June 28, 2010:
This is what I think I have and have finally come across. I've been telling them for years it was progestrone causing the problem (always before my period).
They kept telling me it was estrogen. UGH!
I took yasmin for a couple of months, stopped, got a large pimple that burst, got infected, then the hives started. Have had them for about 5 years now.
I AM so glad to have a name to bring to the doctors now!!!
It took several doctors to finally convince even one it might be hormonal to begin with.
She-rah (author) from Petersburg, IL on May 24, 2010:
Hi Stephie, I tried replying back to your email and it won't go thru. Do you have another email address or another way to contact you? I posted back to you on my forum as well.
She-rah (author) from Petersburg, IL on May 22, 2010:
Hello Stephie, been waiting anxiously to hear back from you. So sorry, but I didn't get the email you sent thru hp. I did get your new one. Will send an email back right now! Thanks for commenting here!
stephie on May 21, 2010:
can you tell me which doctors you used? I have been going from doctor to doctor and I am sure I have autoimmune progesterone dermatitis....it is year 3 for me of severe angioedema, hives etc. I can't find a doctor that will listen to me! I live in Toronto Canada...I will go anywhere
She-rah (author) from Petersburg, IL on May 03, 2010:
Hi Cheeky Girl! Thanks so much for referring your friend and your wonderful comments. I hope these hubs are informative for others, some things are really hard for me to explain, my situation is a bit complicated. I hope the information helps so many others. I have had similar issues as your friend, kind of has to do with my autoimmunity and hormone issues, but my treatment has helped me in that area as well. I do hope she benefits in some way.
Cassandra Mantis from UK and Nerujenia on May 02, 2010:
Hy She-rah: I have recommended my friend to check out your hub pages, as they are very detailed and full of information that she may find useful. In their own right, they are well worth reading and checking as they answer many questions people would have. Great hubs! : )
She-rah (author) from Petersburg, IL on April 18, 2010:
It's ok Brooke84, thanks for reading and your comment! You put you're comment/questions at the right place. I sent you an email and answered your question here on HP. Please get back to me, I can most likely help you!
brooke84 from Queensland on April 18, 2010:
sorry i just realised put this in wrong place.
brooke on April 18, 2010:
hi im unsure if im on the right page, but just thought I'd ask has anyone heard anyone being allergic to Progesterone hormone. I have had a bad rash on my legs for about 9 yrs and found out last year it was guttate psoriasis. And I'm soon to believe it is a reaction from progesterone because it has been around ever since i have been on the pill and depo needle which realises alot more progesterone and also when i was pregnant it got much worse, most people believes it gets better when pregnant not me thought. and while not being on any contraceptive for a month now it has nearly all cleared up. my doctor said he has never heard of this happening but anything possible. If anyone has heard of this let me know. thank you
She-rah (author) from Petersburg, IL on March 21, 2010:
Hi Frogyfish, Thank You So Much for your comment, I truly appreciate it! And Your Welcome, my research will never end and I will continue to publish in hopes of helping others. I certainly do hope that I can help many others. I just can not believe that I am only the 10th person that suffers this. I firmly believe that many women may suffer from my specific condition or conditions similar to mine and they just can not get a diagnosis or proper treatment. I know that there are many that have given up hope, I was pretty close. A person really begins to lose faith in the medical industry and even in themselves. I hope to at least be able to bring a little peace, hope and motivation to those who have to deal with similar situations.
frogyfish from Central United States of America on March 20, 2010:
Your condition must be quite rare - you have written information that should help many who suffer similar situations. Thanks for being a persistent searcher, and for sharing your resolution and hope in this hub.
She-rah (author) from Petersburg, IL on March 11, 2010:
AHHHH,Msyvet, Thank You So Much! Working on instructions for you for the cream. I wish you so much luck with the doctors and diagnosis. I will send an email in a bit! :)
Msyvet on March 11, 2010:
Thank you so much for all of the information that you have given to me. I feel as though I can finally get a hold of this uticaria and begin to explore my options. Reading your hub helped me feel as though I have not been alone and that I won't be in the future. You rock She-ra!
She-rah (author) from Petersburg, IL on February 28, 2010:
Hi Vox, I used to suffer repeated urinary tract and kidney infections along with others. Mine were caused by a systemic yeast infection called Chronic Candidiasis (Yeast syndrome), it feeds on sugar and carbohydrates, but most doctors refuse to recognize it as a medical condition. It took quite a few years to get diagnosed. Not sure if my autoimmunity allowed the infection or the infection caused the autoimmunity. Could be either. I found an internal medicine specialist that ran an Elisa Assay for a positive diagnosis. Along with verifying my symptoms. I was seeing gynecological specialists by the age of 14 and it wasn't diagnosed until I was 26. The doc put me on 2 weeks of Diflucan, no sugar/carb diet, and Probiotics. I still had the infection even after treatment so I control it by avoiding sugar for the most part, taking a Probiotic called Threelac, and eating organic coconut oil. Treatment of the infection usually causes a massive worsening of symptoms called a herxheimer reaction that last for a few days to weeks (it's horrible). The infection can cause urticaria, autoimmunity, frequent bladder/urinary tract infections, pain in muscles and joints, stomach and intestinal problems, tons of symptoms. It's another one that's very hard to diagnose because of all of the varied symptoms. Here's a really informative article:
I'd have to say that if you're having a big reaction to sugar then your condition is probably yeast related and your best bet would be to search high and low for a doc that will run tests for it. Just a guess. Hope this helps :)
Jasmine on February 28, 2010:
I did all the possible tests to allergies - nothing, they say I don´t have an allergy. I noticed though, that when I have chronical urinary tract infections it burns very much ´´down there´´ and all over my skin (when I succeed to get rid of the infection at least for a month or two, urticaria is weakening), I have no gynaecological problems for the last three years but I think it must be some kind of bacteria causing this because my body is wild red when I eat sugar (bacteria feed themselves with sugar). My next step is to see a urologist to do all the tests I can there.
She-rah (author) from Petersburg, IL on February 27, 2010:
Hi Vox, I'm so sorry to hear about your condition! Urticaria is horrible, I was breaking out from sweat. I certainly know what it's like to not be able to find the source of the problem. I researched and pushed doctors REALLY hard until they found some answers for me. My immunologist was my last hope before taking a trip to Cleveland Clinic for extensive testing on rare genetic disorders. Have you done your own research or made any connections with the cause? Is it some kind of allergy since urticaria is typically an autoimmune response? Really curious about your disease, as I've never heard of it.
Jasmine on February 27, 2010:
Dear, I sympathize with you. I have this disease: chronical neurodermitis, urticaria - worst form, but it´s not actually a good diagnosis, no doctor in two states can explain what this really is or how it can be treated. My skin is often red, full of circles and lines and they burn, oh boy, do they burn :-( It is manifested every day so I have to take antihistamines on a daily basis.