This is a continuation of Part 1 and Part 2.
At first I didn’t even associate my symptoms with LS. I was told the itchiness was normal, but I knew deep down what I was experiencing was very much not normal.
Something just wasn’t right.
Time went on, and although my skin healed from the birth, my LS symptoms became worse.
I was referred to a women’s clinic, where I was told this was a lifelong condition and that steroid ointment was my only option. I was prescribed to using it 3 times a week for a period of time and then taper down to once a week for the rest of my life.
After the appointment I felt nervous and fearful for my health. I used the steroid ointment just as I was told and it did help.
Then, I became pregnant again and used the steroid ointment throughout the pregnancy. Fortunately, I tested group b negative this time, so no crazy strong antibiotics!
We had a home birth with amazingly supportive midwives. The birth was beautiful and we welcomed a daughter into our family.
Healing after the birth was challenging again but I made it through. At this point I was eating gluten free and dairy free to help my bloating and digestive issues.
Then, I found out my Grandmother was just diagnosed with celiac disease. Considering I was never officially diagnosed, having it in the family was a HUGE indication to my own health issues. And since then I have committed to avoiding gluten at all times.
I had seen several different naturopaths because I believed that our bodies could heal through natural methods. BUT I hadn’t found a practitioner who made enough of a difference for my health so I never continued seeing them.
Inflamed
There came a point where absolutely EVERYTHING would irritate my skin including the steroids. I constantly thought about my symptoms, I couldn’t get away from it. I’d lay awake at night in pain. Constantly getting up to check if I was still all there.
I felt so alone.
I didn’t confide in anyone about how much this was affecting my life. Just writing this is making the tears flow. It was a tough time.
Luckily, my little fam provided me with love and comfort even if they had no idea what I was going through.
I was SO inflamed, not only with LS but also eczema. And I was dealing with the constant urge to clear my throat, as well as bloating and digestive issues. Not to mention my periods were unbelievably long and heavy.
Things were out of balance and I was very aware of it.
Diet Change
I decided it was time to try a new approach to my diet. Although I had already really been into green smoothies, I totally upped my game and bought a Vitamix.
I also began to eat waaaay less meat. I was borderline raw/vegan. This approach did not clear up my LS, eczema, or heavy long periods, in fact I think it made these symptoms a little worse.
BUT, I will say it did some amazing things for my digestion. Although my digestion felt like it was on point, what I was really after was relief from my LS and eczema.
Support
I was done trying to figure it out on my own and so I set out on finding the right naturopath.
I knew from my first appointment, that this ND was different than the others I had previously seen. She was asking questions from a totally different angle.
She focused a lot on my emotional health and reducing stress. We started weekly acupuncture appointments coupled with guided visuals.
Not only did these sessions relax me, but I also learned a lot about myself and the mind-body connection. I started to notice a difference with how I managed my LS.
If I felt symptoms coming on, I turned to my breathing and it helped tremendously. I started several supplements which also improved my LS symptoms. Although I was still dealing with frequent flares, I felt like I was on a good path and was looking forward to further healing.
Then, I discovered I was pregnant again. Although this pregnancy was unexpected, we knew we had wanted a third child and were thrilled!
However, I knew the pregnancy meant putting my healing on hold for awhile. I remember simultaneously feeling overjoyed and nervous.
Overjoyed, we were going to be a family of five, what I always dreamt my family would be. Nervous, about what this meant for my health.
Was my LS going to get worse?
I continued seeing my ND throughout the pregnancy. I had frequent acupuncture sessions, used supplements as well as homeopathic remedies.
It was all a wonderful support.
I still was experiencing LS symptoms and flares but I felt like I was managing it ok.
We had another home birth and another beautiful baby girl! After the birth I experienced a flare but I still felt like I had it under control.
Then life got crazy.
The Move
My husband, Danny, was working out of the province on a two week, one week off schedule. So I was left to care for 2 young little ones and a newborn on my own.
On top of this, we decided to move our family up north, closer to where we grew up. Luckily, Danny got a job up north, so instead of travelling out of the province he was travelling the ten hour drive approximately once every three weeks.
However, we eventually found a house and packed up and moved when our youngest was three months old. All of these changes were exciting but very stressful as well.
The whole process and stress of moving brought on the longest and worse flare I had ever experienced. And because we had moved, I did not have the support that I previously had from my ND.
I started to feel out of control of it again. I was thinking about it all. the. time. There was no getting away from it. I felt like it was consuming me.
Something had to change.
Autoimmune Protocol
I had heard about Paleo, and even had several friends that were following the Paleo template. BUT I had already been avoiding eggs and almonds, since they were a trigger for my eczema and I had done food sensitivity testing and those two foods were always off the charts for me.
I wanted to do Paleo but it seemed like every paleo recipe included eggs and almonds. So of course I turned to social media for a little help! I did a shout out on Facebook – asking my paleo friends if there were any paleo recipes without eggs and almonds. Most said good luck with that! BUT one friend said she didn’t eat eggs or almonds and she pretty much followed the autoimmune protocol.
When I read the word autoimmune I thought “oh well LS is autoimmune!” And then the research began. I read Sarah’s book The Paleo Approach cover to cover and started listening to podcasts (Phoenix Helix is a fave). I knew I needed to try it!
So I’d say I started paleo right away and then within a few weeks I was fully AIP. After several weeks of eating AIP I felt my system calm down, way down! My body wasn’t screaming at me any more and I finally wasn’t thinking about my LS all day long anymore.
Honestly, I went from thinking about every minute of the day, to once a day. then as time went on, a few times a week and now four years later – NOT AT ALL!
I have my life back. Sure I eat differently, and at times it can be a struggle, but let me tell you, it is so so SO worth it!
Remission
I recently had an appointment with a specialist about my LS. It had been awhile so I was quite nervous about it.
When I told the doctor I haven’t used steroid ointment in years, and that I control my LS with diet and supplements, I really thought she was going to point out everything that is wrong and push the steroid ointment.
BUT instead she told me that if she didn’t know I had been diagnosed with LS in the past, she would say I didn’t even have it. She also said that it’s a good sign that I don’t have any symptoms anymore so she would consider me in remission!!!
Take Away
Now, if you read all this, you deserve an AIP cookie 😉 But in all seriousness, I hope what you take away from my health journey is that diet matters AND healing is possible!
Much love and healing,
Rebecca <3
Hi Rebecca, what supplements are you taking for lichen sclerosis besides doing the aip diet?
Hi Dee Ann!
I’ve changed supplements over the years but the main ones I’ve taken include: probiotics, fish oil, chromium, digestive enzymes, vit d, vitamin c, collagen.
Great story. Have you been able to make any successful reintroductions?
Yes I have! My faves are goat cheese and cocoa but I gotta make sure to have them in moderation!
Could u put me on your mailing list?
Thx!
Sure thing! You will have to confirm your email address with the email that was just sent. 🙂
Hi, Rebecca! I was diagnosed with LS about 17 years ago, after a few years of having doctors dismiss the symptoms. About nine years ago, after treatment for thyroid cancer, my doctor dismissed my idea that the cancer and my regularly itchy skin (all over my body, but especially my legs), and the LS might all be linked.
It was around that time that I started to wonder if I had a gluten intolerance. People were only just starting to talk about such a thing, and when I would Google “lichen sclerosus,” “gluten,” and “diet,” nothing would come up. Now, loads of information exists on the internet tying all of these things together – including your blog! I’ve just started transitioning toward AIP, and several days in, I already feel so much better. Throughout the years, my LS has been fairly mild – only causes me minor discomfort. But in recent years, I’ve developed scalp psoriasis that DRIVES ME CRAZY. I can’t wait to see if diet can help me control these things, and thanks to blogs like yours, I’ve got so much information to help me navigate this.
Anyway, I’m so glad to have found your blog, and to know there are others out there with this weird disease that’s weird to talk about! I feel a little like I’m coming out of the closet here, and it feels so good. Thank you!
Aw Whitney, your comment made my day! I’m SO happy my blog has helped you and that you’re starting to get some relief through AIP! That’s amazing!!! Thanks so much for letting me know, it’s the whole reason I started this blog 🙂
Rebecca, thanks for sharing, had never heard of LS before my diagnosis, which took way too long! It’s an uncomfortable disease and topic to discuss with others. I too thought I was ‘losing it’ sometimes. I had a post-partum thyroid storm and they failed to mention that once you get an autoimmune disease (Hashimotos) you are more likely to develop another. A combination of Leaky Gut, vulvodynia, pelvic dysfunction and LS has been devastating at times, and challenging to figure out what makes one or the other worse. But I’m doing better after 2-3 yrs of PT which actually required botox injections to relax internal tissues that had siezed from being in pain so long. I am happy to be decreasing steroids to maintain, fortunately I can now work from home part-time and am finally able to tolerate longer drives, sitting in theaters or out to dinner with friends, etc.
I did find AIP Paleo very helpful and ND as well for the candida (antibiotics grr), mercury load from several large amalgam fillings that I had replaced last year, and then OchratoxinA from aspirgillus mold. Never knew that 1:4 people can’t handle mold. People with autoimmune disease are susceptible to many other toxic loads when the gut is involved. Learning so much!
So happy to see that Vit D, Collagen (there is all grass fed beef collagen available now), fish oils are on your list- at least I’m taking those already. Chromium is interesting… I’ll have to look into that. My ND suggested I try bitters before eating to stimulate my natural bile/enzymes and not rely too much of digestive enzymes. Reducing nightshades/lectins helped a lot as well. (Results of blood test for TPO’s, which measure system inflammation, are reported in a range of 0-10 with a 4 being high, I’ve been as high as 100 and now down to 65). At one point my husband noted that between AIP, anti-inflammatory, gluten free and lactose free what was there left for me to eat? (lol!) But seriously….How DO we turn off the switch to the overactive autoimmune system!??
Besides Vit D, I was also very low on Serine and B12. I’ve just recently started a combo of Pre- and Pro-Biotics that seems to help too. My ND suggested DNRS but I’m cash strapped and want to spend less time focusing on me/health issues and doing more ‘other’ life stuff! I’ve been sharing all my ND’s testing results with GP and have been grateful he’s agreed to prescribe bio-identical hormones – my body isn’t good at converting the synthetic thyroid and hormones. Keep sharing!
Thanks for your comment Tee. It is such a difficult disease to talk about, which is why I felt it was important I share my journey. It really makes my day when others reach out to let me know it’s helped them in some way. It sounds like you’re on a really good path to healing! If you’re not a member already, you may find it helpful to join the LS Facebook group I help run. Very supportive ladies and lots of info there for those who have LS and are interested natural remedies! https://www.facebook.com/groups/HealingthroughNourishment/?ref=share
Dear Rebecca, I suffer from IBS and oral lichen planus and have just started my journey with AIP, it is my 8th day and I am doing fine. I took the difficult way of eliminating everything overnight and I keep on going, so far so good;) I would like to ask you, when did you see first improvements in your LS while being on AIP? I know everyone is different but I am just wondering…
Hi Magdalena,
So happy to hear you’ve embarked on AIP and that it’s going well so far! I felt improvement quite early on probably the first couple weeks of eating fully AIP. Nothing major but my body didn’t feel as inflamed as before, like everything was calming down and not screaming at me anymore, including my LS, symptoms were still there but not as intense, if that makes sense. Then improvements just kept happening as I continued on AIP.
Hey, I was recently diagnosed with lichen planus, and I’m wondering whether the diet made a difference for you.
Hi Rebecca-
I’m in your LS Facebook group. I loved reading your story. Thank your for sharing. I’ve had LS for 14 months I guess and I have it relatively under control naturally. Aside from your diet modifications, what other topical treatments do you use if any? Borax? Moisturizers? Lubricants? One other question, do you have a favorite multivitamin and probiotic? You are beautiful, by the way.
Aw thanks Amy! So happy to hear you have your LS under control naturally! As for topical treatments, my go-tos have been emu oil and borax. I should really do a post on topical treatments, shouldn’t I? Thank you for the idea!
Please and thank you!
Greetings. I was diagnosed with LS October 2019. I know this has been brewing for a while and NO ONE CAUGHT IT! And the only solution is steroid cream! NO! I went on line to read about LS and it totally scared me. I am single and 63. I would like to find a partner and maybe sex is off the table? NO! I am very active. I want to ride my bike! Play pickleball. Swim. Run. I went to a group of functional doctors this past January. They did extensive blood work (and will repeat in 3 months) and take supplements according to the blood work. I have to look up chromium. I also did the detox and follow the AIP diet which has been life changing. The doctor didn’t offer much in topical solutions. I was suggested coconut cream which I did not like. I use aloe vera gel which seems to be helping BUT I want to find the BEST solution for by body. There are other functional doctors in my area and I might call to see if anyone has dealt with this. I am also going to find out with my group of doctors if ANYONE has knowledge of this disease. I am sooooo grateful I found you and your information. I will be eating it up. I am very motivated to be in remission. How do you measure that? The soreness? The itchiness? I certainly can not tell by looking. How do i protect that area while being active? Thank you for creating this space and sharing your story and solutions.
Hi Diane!
So glad to hear that AIP has been life changing for you too. And it sounds like you’re really advocating for your health right now, kudos to you! Remission for me is not having any symptoms and LS is not progressing. I don’t consider myself cured tho, I could very well experience symptoms again, which is a huge reason I keep working on my health. I hope you’ve experienced even more improvement, know I’m here cheering you on! <3
Hi Rebecca. My 9 year old daughter was recently diagnosed with Lichen Sclerosus and I have started her on AIP. It has been a struggle but I am glad I found you. Thank you.
Hi Veronica,
Thanks for reaching out! I hope AIP is going well for your daughter. If you’re not a member already you may find it helpful to join the LS group I help run on facebook: https://www.facebook.com/groups/HealingthroughNourishment/
It was wonderful to come across your page. I was diagnosed with LS two weeks ago. Steroid cream really scares me so I’m so relieved to hear that AIP and supplements seems to have helped you! The only thing that puts me off AIP is that it might be too low carb? I find I can’t sleep at night unless I have a carb like rice or pasta for dinner. Have you had any problems like this while on AIP? Thank you for sharing your healing journey <3
Hi Ylva,
Good to hear from you! AIP is not low carb, plenty of starchy vegetables are AIP compliant, like Sweet potato, plantain, cassava, butternut squash, carrots, etc. I find keeping it low carb for breakfast and lunch and then having more carbs like a starchy vegetable at supper has worked well for me. Hope this helps 🙂 <3
Your story hits way to close to home. I knew my LS was triggered by childbirth, but when you mentioned getting strong antibiotics for the grp B, everything just fell into place. Thank you for telling your story, so that others such as myself can heal.
Hi Jennifer,
I’m so glad it was helpful! Wishing you the best on your healing journey <3
I stumbled onto your blog while doing a search for an AIP peanut sauce and I just can’t believe my luck at this very moment. I have been suffering and struggling to manage my LS symptoms for 2 long years now and like you, have tried every ointment under the sun. I’ve been seeing gynaecologist for 1 year and naturopath for 6 months but have not been able to control the constant burning and occasional flare ups. I suffer in silence every single day! I recently picked up a book from library and have been following the recommended AIP diet for only a few days. I feel so blessed to have found your website. My journey parallels yours and I feel encouraged to not give up after reading your story. Thank you thank you thank you from another northern gal. ????
oh I’m SO glad you reached out Rachelle, it makes my heart happy to know my story has given you encouragement 🙂 Yay for starting AIP – it obviously was life changing for me and I hope it is for you too. If you’re not a member already you may find it helpful to join the LS facebook support group I help run – lots of supportive ladies on there that also completely get it! https://www.facebook.com/groups/HealingthroughNourishment
I really appreciate coming across your blog. When I was about 18, I noticed white patches on my arms, and severe itchiness at my privates. I didn’t talk about it to anyone, except when I mentioned my symptoms to my gynecologist. She gave me recommendations as if I had contact dermatitis. I dealt with it for years putting otc steroid cream on it. When I was 24 years old, I did my own research. I remember reading the symptoms to this Lichen Sclerosis. I was ready to dismiss it when I read that one of the signs was “white patches” (I had never realized the patches on my arm were related to what I was dealing with “down there”). And then I took out a mirror to check and was deviated. I went back to the same gynecologist, which she ran a biopsy and before I left she asked me, “what you do think you have?” I had been on rx steroid cream until I got pregnant when I was 28, which I use otc steroid cream as needed. This past winter I had a horrible breakout of eczema under my arms and on my hips/thighs. I had to seriously consider what I was eating (and stress) as the culprit. When I came across your page and I no longer felt so alone. I am still healing and on a long road of learning and recovery. AIP has helped reduce the flare ups and helped me feel more in control. I love food and even though I miss so many things if my old diet, I have learned so much I never knew about. Thank you talking about your struggle and journey. It gives me so much hope.
Hi Sarah,
Thank you so much for commenting. I’m so glad my story has given you hope and that AIP is reducing your flares and has given you the feeling of control – feeling in control again was a major step in my healing journey. You may find it helpful to join the facebook group I help run for women with LS that are interested in alternative healing – lots of info and support <3 https://www.facebook.com/groups/HealingthroughNourishment
Hey Rebecca,
I happen-stance came across your blog feom pinterest from a recipe of yours that I was pinning. First off, thank you for your vulnerability to share such a personal story. I was FINALLY diagnosed with LS this past summer after living with flare up for 5.5 years. It had gotten soo bad, I felt like I couldn’t manage at all. Still feel this way. I have been doing AIP since I was diagnosed (6months ago) and honestly, I notice no difference in my symptoms. I had to wait forever to get in with an Integrative health dr and just saw her a month ago. I am curious how long it took for the diet to change things for you. I am on a 6week detox that I just started and will learn more about supplements I need to take once my stool and blood results come back. Once again, thanks for sharing. I feel too young to be dealing with this and it is awful. It is good to know others are dealing with the same at a young age.
Hi Heidi,
Thanks so much for reaching out! Oh man I know what you’re going through – I felt like I was in a flare for such a long time, it’s such a frustrating place to be. I felt a difference as soon as I went AIP, but for some it takes much longer to notice a difference and it almost always involves more than just diet change. So glad you are seeing a integrative health dr. Working with naturopaths helped me tremendously. You may be interested in joining a facebook group I help run for women with LS who are interested in alternative treatments, lots of support there: https://www.facebook.com/groups/HealingthroughNourishment
You are certainly not alone <3
Hi Rebecca,
Your story is so touching and I felt so bad for you when I began reading about your journey, as a young woman. It must have been frightening in many ways not knowing how your future would unfold in regards to LS and a life of using steroids etc.
I am writing, as I am wondering if you are still following the AIP diet? Is this diet still successful in keeping you in remission? Do you mind sharing what supplements you are taking?
I am just learning to try clean up my diet by following Paleo, as I have read so many success stories when it comes to healing inflammation in the body.
Anyways, take care and God Bless!
Aw thank you Nancy! I am not strict AIP anymore, I have successfully reintroduced a lot of foods. I am also very aware of my tolerance levels with my reintroductions, and I will pull back or start eating strict AIP or even AIP keto anytime I feel like my body needs it. As for supplements, I change them up from time to time depending on what I’m focusing on. You may find my post, 5 steps I’ve taken to heal interesting as I list some supplements there. Hope this helps!
Interesting story…just finding the site now. Going to try the cookie recipe that was at the end of your story….nice touch! just about to start AIP myself….I’ve done several versions of things over the years, but things are….well, not as they should be and I’m hoping this can get them back on track. I feel for anyone with any kind of auto immune issue…it certainly makes life a little tougher. I will check out the rest of the site….thanks for providing the info/recipes to help us all on our journey.
Thank you for commenting! Wishing you all the best on your AIP journey 🙂