Lee’s AIP Recovery from Lichen Sclerosus, Endometriosis, and Arthritis

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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.

Though Lee didn’t receive autoimmune diagnoses until adulthood, they had suffered silently with the symptoms for many years prior. Many of Lee’s health issues felt sensitive to talk about, which made it even harder for them to seek medical advice and created an added mental and emotional burden. Their story of recovery involves both physical healing thanks to AIP and nutritional support, and mental health approaches like Mindfulness-Based Stress Reduction to address the mental and emotional side of managing chronic illness. Most of their conditions are in full remission!

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?

I have experience living with anxiety, hyperacusis, lichen sclerosus, endometriosis, and arthritis (in chronological order).

In middle school, I became aware that my body had hormonal imbalances because my menstrual cycle was so erratic. Birth control pills regularized my cycle, but I discontinued them in college when I realized they were causing depression and increasing my anxiety.

During my teen years, I developed anxiety, particularly around driving and traveling in cars. I also began experiencing pain in my right ear from certain volumes and pitches of sound (though it was never formally diagnosed, I believe the term hyperacusis may be related to what I experienced).

I became an ovo-lacto vegetarian at fourteen. After going vegan for a couple years at 23, I noticed that I wasn’t recovering from colds as quickly as I used to. My first lichen sclerosus symptoms appeared when I was about 24 years old, and my first menstrual pain attack from endometriosis occurred at 28. My lichen sclerosus and endometriosis took five and seven years to be diagnosed, respectively. Arthritis began developing in my hands around age 32, likely caused by inflammation occurring around the sites of multiple hand surgeries I’d had as an infant due to Amniotic Band Syndrome.

Describe what the lowest point on your health journey was like.

I am grateful for the incredible outcomes in my health. But along the way, there were many low points:

Living with driving anxiety limited my travel and social life. Excruciating pain attacks at the onset of periods disrupted work and personal plans. As weakness and stiffness in my hands progressed, I obtained ADA accommodations at work, but also realized that I needed to start planning for a time when I may no longer be capable of performing my job at all.

But the most difficult thing for me was having lichen sclerosus (LS), which is an autoimmune condition that impacts the skin of the genitalia. Before diagnosis, I experienced occasional discomfort for four years. After diagnosis, I experienced constant discomfort and frequent pain for five years, and the mental burden of having an illness that impacted such a personal part of my body and emotional life was immense.

For about four years before diagnosis, my lichen sclerosus symptoms were sporadic and restricted to the perineum. It never occurred to me that what I was experiencing might be related to a disease process. It was a little weird and painful, but I just thought I had dry skin.

By chance, I happened to have an OB/GYN appointment during my first vulvar LS flare at age 29. Unfortunately, the physician who diagnosed me didn’t explain that the disease was autoimmune and considered incurable. I thought the tube of steroid cream she prescribed would be a quick and permanent cure. I learned the truth when I went back to the OB/GYN and asked why my symptoms came back immediately after using the steroid cream for the prescribed amount of time.

It was hard for me to wrap my head around the reality of having LS. During an LS flare, genital skin becomes white, dry, and crinkly, eventually peeling off and leaving a raw, painful layer of skin underneath. After a few vulvar flares in that style, my LS settled into manifesting mostly as thin, dry skin–more or less like having a constant sunburn on my labia. My vagina didn’t produce as much lubrication as before; my labial skin was thinner and susceptible to being torn or abraded by sexual activity; and walking was sometimes painful, especially in the winter. For five years, every step I took was uncomfortable. While it wasn’t the worst-case scenario for living with LS, it was not what I wanted for my life.

What challenges influenced you to look for a solution? Basically, what was the tipping point?

My tipping point was when the skin of my labia tore one morning near the end of 2018 while I was inserting a Diva Cup. I had used menstrual cups for about fifteen years; it was an environmental choice that I valued and that felt close to my identity. But my LS symptoms had been intensifying over the previous few months, and now my body was rejecting even this simple, basic thing.

At that time, I was 34 years old. I was also in a new relationship. But instead of excitement and hope, I was mostly feeling dread and sorrow. When my labia tore, that was the breaking point where I knew that I needed to search harder for an answer to my condition if I wanted to live a better life.

For years, I had had difficulty researching lichen sclerosus online. Whenever I tried, I came across desperate posts by other people with the same disease, some of whom were describing permanent impacts from LS that I couldn’t bear considering might be in my future. Rather than feeling empowered by research, I felt more fear and despair.

In fact, the day I finally got up the courage to really, really research LS in December 2018, I came across the story of Emma Robinson, a woman from the United Kingdom who had been diagnosed with terminal vulvar cancer resulting from lichen sclerosus just a few months before. Knowing she had limited time left, Emma shared her story to raise awareness and to encourage people to recognize the symptoms of LS and seek medical treatment.

Having kept my own diagnosis a closely guarded secret, I was so impressed by Emma’s bravery–and so freaked out that I was not following her recommendation of being treated. After the first few months of using steroid cream in 2014, I’d ditched it for good–it hadn’t stopped symptoms from coming back, and I could not envision a life of having steroid cream on my genitalia 24/7. I’d read that the constant application of steroids may thin your skin, which was exactly what lichen sclerosus was already causing. (I want to note that there is conflicting information on how likely topical steroids are to cause skin thinning.)

Diving into Google and resolving to keep reading no matter how terrified I was, is probably one of the hardest things I have ever done.

If you are reading this story right now in a similar situation, I hope that you appreciate your own bravery in this moment. Your disease is not your fault, and you have nothing to be ashamed of or embarrassed about. Know that you are part of a larger community of people who have shared similar challenges, and experienced similar feelings of both fear and courage.

When you found a protocol to help you heal, what was it and what was your first indication that it was working?

I wish I could remember the search string that landed me on a page about the Autoimmune Protocol (AIP). I had never heard of AIP or leaky gut and I felt skeptical. None of my doctors had mentioned a connection between my diet and my symptoms, but the number of people–real people–sharing stories online about AIP’s efficacy made an impression. I remember thinking that I didn’t know if AIP would work, but I simply didn’t have a better option.

Initially I thought I would take a few weeks to prepare for AIP mentally and logistically, but when I woke up the next morning, I knew I couldn’t wait, and I started that day.

I was worried about how the partner I’d begun dating just a few months before would react to my sudden leap into this drastic health intervention. In the past they had mentioned concerns about how some alternative health practitioners prey on people’s desperation with sham cures. But when my partner looked into AIP, they were reassured by how its proponents, including Dr. Sarah Ballantyne, Eileen Laird, Angie Alt, and Mickey Trescott, did not tout AIP as a cure-all or guarantee perfect or instant results. My partner also appreciated that they seemed willing to adjust their thinking based on new evidence and expressed support for people who choose to continue taking mainstream medications. (If you want to learn more about fake cures and diets throughout history and today, my partner recommends the podcasts Sawbones and Maintenance Phase.) Satisfied, my partner–a much better cook than me–committed themself to helping me learn how to do AIP.

The learning curve was steep: I had been an ovo-lacto vegetarian my entire adult life (with a couple years of veganism). I had no idea how to cook meat, I didn’t own a blender or food processor or silicone baking sheets, I didn’t know where to find pastured meat, and arthritis made chopping vegetables, lifting pans, and opening packages difficult.

But the pay-off was fast and dramatic: By the end of my first week on AIP, my anxiety had plummeted and my hyperacusis was gone. Sounds were still louder in my right ear than in my left, but the pain caused by loud and high noises had vanished. Slowly, my vulvar skin healed. I noticed significant improvement at five weeks, and after three months, my lichen sclerosus was in complete remission. For the first time in five years, I had no LS symptoms. At all. Gradually my arthritis–which had been progressing so seriously that I thought I may eventually become unable to do my job–fully disappeared as well.

Endometriosis behaved a little differently than my other conditions. On the positive side, AIP caused me to have regular periods without hormonal medication (which I couldn’t tolerate due to side effects) for the first time in my life–but that also meant that I was experiencing menstrual pain attacks from endometriosis more often. It would not be an exaggeration to say that these attacks included traumatizing levels of pain.

What resources have you used on your healing journey so far and how did you find them?

I began attempting food reintroductions in my fourth month of AIP. Feeling overconfident (and against the good advice of my partner and basically everyone in the AIP world), I reintroduced green beans, ghee, and black pepper all at once, which resulted in a three-week LS flare. A more controlled attempt at reintroducing only green beans a couple months later caused a flare as well. The following month, an LS flare developed just 24 hours after eating a single scrambled egg.

Nine months into AIP, after five months of attempting reintroductions, my only successful reintro was cocoa–but I ate so much of it that it started causing urinary pain and I had to give that up again too. Finally, I accepted that I had hit a wall with food reintroductions, and realized that I needed professional help to successfully transition off of AIP.

I scheduled an appointment with Dr. Anjali Dsouza at the District Center for Integrative Medicine. At the first appointment, Dr. Dsouza prescribed 5000 IU vitamin D3 and 45 mcg vitamin K2 daily, even though my vitamin D was in a typical range. Within days of starting the supplement, I was able to begin reintroducing foods without experiencing symptoms. Within a few months, I was eating everything except gluten. I’d never been aware of any problems with gluten, but I felt wary because of its tricky reputation. I stayed gluten-free out of excessive caution for another seven or so months, then reintroduced it with no issues.

One year after starting AIP, my anxiety was greatly reduced, and my hyperacusis, LS, and arthritis were fully gone. But my endometriosis was an evolving puzzle: While everything else got better, my endo symptoms diversified, and after I went off AIP my period became less regular again. For months, I experienced daily cramps and nausea. At ovulation and menstruation, I have experienced fatigue, mood changes, hypoglycemia, and leg pain.

Helpful interventions have included supplementing zinc, which eliminated nausea; increasing the zinc dose, which eliminated constant cramps; and starting DIM-Evail, which regularized my period again. Over time, the menstrual pain attacks and other symptoms have become manageable or even nonexistent as long as I take NSAIDs as soon as my period begins. Continuing to work with Dr. Dsouza has been instrumental to improving my symptoms.

I have chosen not to return to vegetarianism because of concerns that it likely enabled my autoimmune conditions. Instead, I am careful to purchase meat from pastured and humanely raised animals. Outside of my home, I’m effectively pescatarian. I don’t like eating meat, but am exploring the idea that it may be necessary. I am still working on understanding the role that responsibly consuming animals plays in the interdependent web we’re all a part of.

It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?

It can be difficult for people with autoimmune disease to obtain diagnoses, be believed by their doctors, and afford interventions like AIP. Bias in healthcare, economic inequality, and environmental racism present additional race-related barriers to health. It has been great to see AIP leaders like Ballantyne, Laird, Alt, and Trescott express support for the Black Lives Matter movement and address aspects of autoimmune disease and AIP accessibility that are impacted by white supremacy. I also think that people with chronic illness, whether or not they identify as disabled, can gain valuable insight from educators on disability justice like Annie Elainey, Imani Barbarin, Lydia X. Z. Brown, and Mia Mingus; and people who have found relief through AIP may appreciate engaging with indigenous food sovereignty movements. All these ways of exploring the relationship between autoimmune disease and social and environmental movements bring me joy.

One of the best things I did during my AIP journey was take a Mindfulness-Based Stress Reduction (MBSR) course through Palouse Mindfulness. MBSR is an 8-week meditation program designed to support people with chronic illness in their healing. Although I didn’t see an improvement in my physical symptoms, the course rewired my brain to dwell less on the difficult things I had experienced. And even though I haven’t kept up a consistent meditation practice since MBSR ended, the benefits haven’t faded.

Before my AIP year, I tried to see my circumstances in the best possible light, but even with making a deliberate mental effort to be optimistic, I still felt like my life had gone off the rails in some fundamental way. Whether it is due to MBSR, improved gut health, or better hormone regulation, somehow I have had the great fortune to emerge from these difficult experiences as a happier person.

I don’t just feel more peaceful about my experiences with disease–which would not be surprising, due to my recovery. I also feel more peaceful about difficult things that happened to me even before I got so sick. Things that had weighed on me for years and made me feel discouraged about life. And I’m not sure I would have found this sense of well-being if I hadn’t had to search so hard for healing from autoimmune disease, that I was willing to meditate every day for fifty-six days (with a one-week break in the middle due to a flare).

To be clear, I am not saying that I think that difficult things happen for a reason, or that the universe makes people sick to teach them a lesson. Personally, I don’t think anyone deserves to be sick, for any reason. Rather, I am saying that I have been surprised by how much better my life has become, and that I would not have believed that something so upsetting could become a gateway to so much joy.

For those of you who are just now embarking on your AIP journey, I wish similar healing and joy for you.

A virtual, self-paced MBSR course is available for free at Palouse Mindfulness (https://palousemindfulness.com), and you can search online for in-person courses in your area.

Would you like to share your Story of Recovery? Let us know by filling out our interest form.

About Grace Heerman

Grace Heerman is a writer and website designer from Minneapolis. Through her business Said with Grace, she helps coaches clarify their message and create authentic websites that actually bring in business. Here at Autoimmune Wellness, Grace writes book reviews, manages blog content, and organizes Facebook publishing. She is an avid traveler and loves spending winters in Asia. You can connect with Grace and learn more about her writing and design work on her website, Said with Grace.

1 comment

  • Barbara says

    Thank you for sharing your journey. My sister was diagnosed over a year ago with LS, suffered horribly, and recently had surgery for cancer related to this awful disease. She is currently undergoing radiation treatments following her surgery as microscopic cancer cells were found in a lymph node. I plan to share your story with her. I wish she would try the AIP diet because she has issues that could probably be helped and avoid a recurrence of LS. Your dedication to finding a solution is one that many may not undertake. I’m glad you did.

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