Holistic Science Library for Vulva Health

Lichen Sclerosus Canada (a patient support group)

Females, from babies to reproductive age to the elderly are suffering in silence from vulva pains, vulva disfigurements, cancer risk and sexual dysfunctions that is Lichen Sclerosus (LS). Often misdiagnosed initially by practitioners as thrush or infections like yeast and EBV, the current available literature in dermatology, gynecology and immunology discussing root cause of this "rare" disease is all over the place from hinting at sexual trauma, hormone imbalance, diet, life stressors, genetics and chronic infections causing this rare mucosal skin/immuno-deregulation disease. With all of these potential root causes, one would think the medical community would offer more then one treatment option to our patients, however, the chosen first line treatment is allopathy, Clobetasol, the most potent steroid on the market for indefinite use on our delicate vulva, an off labelled use for those that read the pharmacy inserts. For some of us the physical and mental trauma of this painful disease happens at a very young age with the inability to urinate or pass bowel movements normally due to the severe inflammation in our tissues. Diagnosis may require a biopsy of affected site to rule out any other skin conditions. In the literature, LS is often described as a menopause problem, lack of estrogen in the elderly, however, in young girls few research papers discuss this lack of estrogen in prepubescent girls. Overall, the papers omit the long term effects this disease has on our mental and sexual wellbeing. One simply needs to join a patient support group to understand the magnitude of our dysfunctions and the daily maintenance required to keep painful symptoms under control. It is truly a thought consuming disease. There are non allopathic tools available a patient can use to help alleviate the immuno-deregulations and manage painful symptoms when the steroid no longer works or individuals experience side effects from short and long term uses of corticosteroids, however, this knowledge, is well buried thanks to current search engine monopolizing information and unhelpful algorithms. Anyone promoting alternative medicinal solutions are gaslight by the allopathic medical community. Even women will quote at nausea the one study done by a Dr. Goldstein (USA) as the gold standard for LS treatment, and from there it seems there is no further reason to continue any research on this subject. 7 trials with a total of 249 patients used to confirm its the best option for everyone: 

https://www.cochrane.org/CD008240/SKIN_topical-treatments-genital-lichen-sclerosus

Leading researchers admit conflicting information about proper use of this medication, lack of studies for dosing and long term use effects:  

https://lssupportnetwork.org/does-long-term-use-of-topical-ste

Are we rare? according to stats, LS is relatively rare. various reports contradict and quote affected female population is between 1 in 1000 and 1 in 300 in the general population, the exact prevalence still remains unknown in 2024. Treatments available to us is for physical only: relief of the symptoms, stopping the atrophy, prevention scar formation, and anatomical distortion, as well as malignant transformation. I'd like to change that.

Ref: Lichen Sclerosus - StatPearls - NCBI Bookshelf (nih.gov): https://www.ncbi.nlm.nih.gov/books/NBK538246/

An online library of information bringing together everything we know since 1880s to present about LS and the various medicinal practices used then and now for symptom management based on what females believe their root cause may be in lieu of the one size fits all treatment currently prescribed to everyone including small children. A site for patients, parents and caregivers to work through a triage process of elimination to help determine potential root cause and a path forward in treatment plan when the first-line option of steroids does not work. Be the first online resource center that incorporates the mental and sexual wellbeing into the female healing health equation for this chronic disease. AI technology and independent search engines can be used to help us search in dermatology, gynecology, immunology, genetics, physiotherapy, endocrinology, trauma psychology, sexology to help find credible sources, find commonalities and contradictions in the literature. Same to be done for the alternative medicines: phytotherapy, homeopathy, naturopathy, nutrition, light/ frequency therapy and pelvic floor therapy. Accessing clinical trials, private test labs and connecting the various international patient support groups and associations with research students and practitioners in the above listed fields focused on female reproductive health. It shouldn't be this difficult in 2024 for a female to obtain medical help and yet Canada's current healthcare system and information censorship is making it very difficult for us to get informed and get services in a timely manner. 41M population in Canada and we still have to send urine/feces/blood test to independent labs in the USA because these services are not offered here in Canada and if they are it is not well advertised on Google.ca.  I'd like to change this. People living in highly urban areas have easier access to specialists and unconventional treatment plans whereas rural people are dependent on family physicians with little knowledge on this disease. Individuals can wait up to 12 months to see a gynecologist in Ontario. This is unacceptable wait time when you are in the acute phase of this disease. Our library would offer alternatives to treat painful symptoms while they wait for the appointments. Google searches will always give us the worst case scenario with the fear that if you do not do steroids you will get cancer. Our risk is 4% higher of vulva carcinoma compared to regular population. I am a child survivor of LS, diagnosed via biopsy at age 9, and in the 80s was treated with high dose vitamin E both oral and topical prescribed by a dermatologist. I continue this method in my late 40s and do not have signs of cancer. This is based on one paper found online discussing anal pediatric LS and describing it as an oxidative stress issue at the mitochondria cellular level. In 2024, no one in the newly diagnosed community is given this information by their medical professional, why not?!? Testimonials available from patients can help  alleviate fear and shame around this awful diagnosis.

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9978401/ and 

https://www.researchgate.net/publication/335269287_Lichen_sclerosus_The_role_of_oxidative_stress_in_the_pathogenesis_of_the_disease_and_its_possible_transformation_into_carcinoma

The primary aid is to young females. We know males can also get this diagnosis, however, male population affected is less significant and the root cause is different then females. Often the successful treatment is surgery for them per online publications. 

As per references linked above, there is no race or culture more significantly affected by LS then another, it is well known as an old lady problem and dubbed to be rare in prepubescent girls. It is currently being treated the same way as an elderly woman thus the alarming concern for the wellbeing of young girls not yet in the reproductive and sexual phase. When grown women are reporting serious adverse effects from using potent steroids including adrenal fatigue how can we as a patient support group continue to champion this gold standard of care for minors? There is no proof that long term use of Clobetasol will help prevent cancer, it is a band-aid fix to an immuno-deregulation. We all have cancer cells in our bodies, whether one gets it depends on the immune systems ability to detect and destroy those cells before the carcinoma stage. Ref: https://jamanetwork.com/journals/jamadermatology/fullarticle/480623

Trending themes on support groups right now are moms concerned with lack of other options available and how to better support their child mental wellbeing living with chronic vulva pains. From cotton underwear, hygiene products, elimination diet, allergy testing kits to natural antifungal/antiviral/ antibacterial topicals and bathing products to DIY ointment recipes with ingredients found in the kitchen pantry and bathroom medicine cabinet can empower parents to troubleshoot their child's unique needs when in acute disease phase. Bringing live podcasts from psychologists and sexologists, students in those fields, guide us on female sexual dysfunction and how to overcome these difficulties for ourselves and for our relationships. 2024 the stigma of "Use it or Loose It" is alive and well in our community unfortunately. The pressure to push through painful intercourse to save a relationship is not only physical trauma but detrimental psyche causing mental aversion to any sexual contact and often quoted as the main reason women in our groups get divorced and no longer date. They give up on intimacy with partners and sexual needs being met to avoid pain quoting "not worth it". I'd like to change that. Offer resources how to work around the mental block surrounding pain from intercourse. Bring forward solutions how to prep in advance for sexual and even birthing activities with this disease to post care options to reduce inflammatory response and maximize the person's ability to heal successfully. Experts explaining in live zoom group therapies how to overcome self grief and trauma may help young girls and their parents manage future fears. So much is available on sexual freedom and fetishes for healthy people but so little is known about meaningful sex and pain management for patients, especially when dealing with female sexual dysfunction. Let's change that to increase quality of life and maximize relationship satisfaction.    

Ref: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9201736/ 

We have many patient support groups currently on Facebook and other social media platforms, at least one per country such as Canada, USA, UK, France Australia etc. where I am actively involved as a patient. Depending on the level of censorship on holistic methods, some groups are able to offer more options to their community then others. We need to move away from Facebook and their bots with community notes and shadow banning information that goes against mainstream knowledge and which only furthers the stigma surrounding this disease. A patient cannot post a picture of their lesions for advice online because it is labelled as pornography by fact checkers while Facebook itself is incapable of removing actual pornography from their site! I am not a computer savvy individual so moving information from all these groups to a safe website where patients can share sensitive information to help problem solve is essential. The prototype is our Facebook patient support group, we know it works and there is a strong demand for more holistic solutions to a chronic misunderstood health problem. Waiting for all the different branches of science to catch up and tell us how to fix this is not an option. In 2018, Lichen Sclerosus Canada had 200 patients, now in 2024 we have 1200+ and 86 newly joined individuals just in May 2024 alone. The idea is to bring together the resources from every country to one independent library site built by a professional web builder so that patients, caregivers and professionals can search in the language of their choice, obtain health services from professionals in their country and reduce overall anxiety and stigma from the judgement felt when the gold standard treatment fails or causes more harm then benefit. We have an aging demographic that currently enjoys the easy use features of the Facebook pages from the chat, notifications, search button, files uploading and event planning. Other platforms have not been as successful in patient engagement and are kept as backups currently in the event our groups are overtly censored and shut down for promoting natural solutions which has happened in both Canada and the USA during the last 4 years of a pandemic for various disease support groups including the use of Boron mineral salts to treat artiritis and autoimmunity where the cause is described to be fungal: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712861/

For this reason, we need to keep a similar simple format for our group to navigate effectively and interact with each other, find experts who do beyond allopathy medicine. Tailor information for newly diagnosed vs those dealing with advance cancer options, children vs adult options, in a relationship vs flying solo for this disease management. Bring neutrality and well rounded knowledge in every science field to empower women to decide for themselves solutions to embarrassing genital problems. Let's turn females into problem solvers and stop the gaslighting "female hysteria" and the self hate and shame that easily comes with having an unknown rare disease that doesn't always respond well to conventional treatments and is so difficult to explain to our partners and family. Help me educate my mom and my 12 year old daughter and others like me how to deal with vulva pain. 

Because neuropathy in tissues is not well researched in LS, most patients and practitioners do not make the connection between what might help an LS patient vs what the literature currently shows for pain management for those with Vulvodynia diagnosis as example. Cannabis oil is a very old medicine used topically to help alleviate neuropathic pains on various parts of the body. It is a legal product in Canada, yet virtually no one knows how to use it for vulva pain. I'd like to change that. Like LS, Vulvodynia's exact cause remains unknown, but is likely "multifactorial with established links to inflammation and neuroproliferation of nociceptors." This publication discusses cannabis as an option for painful intercourse:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7787394/ even indicates: "The side-effects of some of these medications decrease adherence to the treatments too. In summary, none of these treatment options have uniform successes in reducing vulvodynia pain, with many failing to outperform reasonable placebos".  

Our website would help reduce the silo effect currently on information for LS patients and open up new possibilities such as cannabis topical uses for our pain management using AI technology to help us search online and connect the dots. We have recently been approached by the Pharmacists as Cannabis Educators (PACE) project, researchers wanting to know how our patient support group can use cannabis to further educate pharmacists in providing accurate stigma-free cannabis products and uses to  consumers: http://www.cannabiseducationresearch.ca/ Obviously engagement is low as the majority of patients are unaware of cannabis oil benefits for LS.

Be first science library to integrate allopathy medicine with natural holistic approaches to female reproductive organ health in Canada. Currently the medical model offers one or the other and often patients experience discouraging messages from practitioners from trying new or different medicines citing limited or no information to support it. This model has a defeat outcome for patients. 

I have a Bachelor's in Biology, my interests is finding trends, connecting dots in disease pathologies and summarizing difficult science information in an easy layman's terms offering explanations for those without a science degree. I do this for my fellow LS patients and I do this for my other rare disease support group, Aniridia Canada. The award monies, could hire a science/medical literate individual to help in lit searches, use AI tools effectively and help with the technical summary writing.  A medical writer salary currently in Canada is an average of $50.00/h CAD: Medical Writer Salary in Ontario: Hourly Rate (Jun, 2024) (ziprecruiter.com). A website developer salary in Canada can be: $80,000/y CAD Salary: Web Developer in Toronto, ON 2024 | Glassdoor.

Courses on holistic approaches to root cause of diseases is offered by the RCP Institute, where mitochondria health is taught by Morley Robbins with biology health and nutritional information for patients and practitioners: https://therootcauseprotocol.com/rcp-institute/ The barrier for us is currency. The cost is $3,350.00USD which isn't awful, but Canadians end up paying $1200 more to obtain that same information. This could help a few leaders gain knowledge to better disseminate health advice to our growing community and help battle the oxidative stress damage found in LS.

Research on dangers of high oxalate diets is hidden by bias search engines and algorithms. Our food industry highly promotes foods like spinach, nuts, cocoa and green veggies as super foods added to prepared foods marketed as healthier choices. The lie is evident once you understand oxalates are an antinutrient=> a plant toxin. It is well documented that oxalates cause urinary tract stones but what else does it do? It's an immuno-cell trigger, LS patients suffer from acidic hot pee and bowel movements that feel like shards of glass coming out. Oxalic acid has a greater acid strength than acetic acid, as low as pH 4 for comparison. Crystals accumulate in soft tissues. We know what it does to female rats and their babies since the 1939 E.F. Kohman study. The connecting information on vulva pain and oxalates is in the VP Foundation (USA) site that sponsors research on connective tissue syndrome which also includes interstitial cystitis, fibromyalgia, irritable bowels, and sensitive skin: www.thevpfoundation.org. This further confirms the work by Sally K.Norton who describes her painful experiences with autoimmune issues despite following the popular plant diet misinformation: https://sallyknorton.com/oxalate-science/oxalate-basics/ and https://sallynorton.com/problems_from_my_wholesome_diet/. The Great Plains Laboratory (USA) offers their Oxalic Acid (OAT) urine test which we cannot find readily available in Canada. Offering this service would help eliminate a root cause and provide answers to those with an oxalate sensitivity: https://www.greatplainslaboratory.com/articles-1

We are non profit, volunteers and peer support only organization. We have no funds and no professionals to take this project to the next level and formalize it. We battle against misinformation and fear created by an inflexible medical system that is for pharmaceutical benefits not for the patients wellbeing. The idea is to bring all the various pieces of the puzzle in women's complex vulva and reproductive health and bring it under one umbrella library site accessible to as many as possible. Find a work-around the search engine monopolies and algorithms to showcase the work already done by our researchers and bring forward the old and new knowledge from various science fields. Explain in easy to understand language how it all relates to LS and the pathology. When you know you can treat chronic inflammation in more then one way, the fear of this diagnosis is lessened. When a female gets one autoimmune diagnosis, she is likely to accumulate more during her lifetime as the root cause of the deregulated immune system is not adequately addressed. I'd like an opportunity to change that with education and knowledge sharing. World Lichen Sclerosus Awareness Day (WLSAD) is on January 17th. It would be amazing for our community to have a celebratory reason in 2025-2026.      

I am a patient of LS since childhood. I lived through the various stages and symptoms of this disease. I offer a support group that is open and inclusive offering neutrality and non judgement for where females are in their diagnosis journey, disease management and fear processing. There are other Canadian led patient initiatives done by other patients in my group for in person educational workshop events. Our community is growing fast and we need to keep up with the demographics currently trending not what outdated literature says about our patient population. The BC Center for Vulvar Health, as example, offers a comprehensive patient-centered clinical care. It is highly recommended by our patients living out in BC. However, for someone living in Halifax Nova Scotia, its cheaper to travel to Florida or Europe then in our own country to meet experts and benefit from their knowledge and care. A patient recently stated on Facebook that for the first time she felt heard by her medical care provider! Another indicated that her confirmed diagnosis led to a referral to a psychologist and pelvic floor physiotherapy without her having to request it herself! For those of us not living in BC, we must continue to advocate for our needs, coach each other before medical appointments and push for changes to happen in our healthcare system in all provinces to include a more holistic and whole body healing approach for Lichen Sclerosus.        

By formalizing our library model, we will connect all the various initiatives started by patients like me and pool all the knowledge puzzle pieces in one comprehensive space, promoting our experts and researchers, attract new talent and better inform our patient community with choices. If successful, the space can then be expanded for leaders in other countries to contribute the same for resources in their region and in their language. The site must be safe for people private information and must be free from bias search engines hiding our information and fact checking bots. Links to this library can be placed on the Facebook support groups for easy access via moderators. Those that are current members on patient support groups or if given the link (e.g. your doctor) would have access to this library. My attempt of a library prototype on a private Facebook page (Science of LS and autoimmunity) adjacent to the main patient support group does not work for us because even on a private setting where only I had access to build it, Facebook bots have censored certain publications I posted because certain words and remedy names are flagged and certain images found in childhood LS published papers are marked as inappropriate. I need IT intellects to either teach us how or show/give us the workaround tools for this issue. None of us in these LS groups have the expertise or time to figure this out, our high maintenance disease keeps us fully busy.  

As an example, if you use google.ca which is meant to search for sites in Canada versus the google.com, you would think the search results are different, however, you will quickly realize that Canadian led websites are not the first hits.  Try it: www.google.ca  search words: Lichen Sclerosus Canada or try search words: Aniridia Canada. The first hits are always non Canadian especially organizations looking for Canadian donations! Increasing online awareness of what is available for support to Canadians by Canadians with rare diseases would be economically helpful and the marker for which progress could be measured.

• Provide: Easy to Understand Science Information=> Connecting the Dots=> Offer Options, Mentoring and Guidance

• Remove: Fear, Shame, Self Grief that stems from this morbid diagnosis

• Outcome: Empower People=> Create Knowledgeable Leaders in Health => Maximize Patient's Relationship and Life Satisfaction

Currently me alone as volunteer on building the library idea although some existing patient initiatives in Canada may want to contribute so that the library resource does not create a duplication of effort but instead compliments what is currently available in Canada and further champions our leaders in female vulva health research and education programs.

I started a prototype library using a Facebook page and hashtags, trying to learn how to organize science information on social media back in 2020: 

https://www.facebook.com/share/A1uYRiBbZrQPR7ki/?mibextid=A7sQZp

Unfortunately some of my references to publications posted were removed by Facebook so that they are no longer viewable articles even when the page was private. I need help finding a solution workaround to this infowar we are currently living in controlling the sharing of natural medicine information.  

Although our patient support group is focused on vulva disease and therefore exclusive to females, we do share other patient support systems currently in place for males affected by LS, those that have specific relationship issues with partners and those that choose only allopathy or offer natural remedy businesses offered in separate groups. Our goal is to remain neutral and non judgmental in people's medical choices. We have a French Canadian sister group helping to dispense local service information and treatment information for those with language barriers. AI tools could help tremendously with translating scientific materials and keeping this part of the community as informed as the primary anglophone patient support group. It is unknown how many in the marginalized equity groups have vulva disease like LS. What we do know is that once a female gets an autoimmune diagnosis she is likely to accumulate more in her lifetime decreasing her quality of life, her ability to function fully in society and provide for her family. Having to apply for short or long term disability because you can no longer tolerate sitting down at work illustrates the gravity that some of us face. Our goal is to protect female wellbeing and problem solve this.

Our business model is to remain not-for-profit, a stand-alone social enterprise patient driven support ecosystem. 

We solve and facilitate access to a broad range of pertinent information, saving patients time from doing laborious searches and we want to promote local businesses, programs and patient to patient initiatives available in one place for our rare disease patient support group. We encourage our patient members to do their own fundraising activities and advocacy in their region. There is no intent to profit financially from this project for me as a moderator to the patient support group.

I expect that by removing the current information silo effect from search engines and the issues surrounding information sharing of alternative treatment options for LS on online social platforms, that this will have a cooperative effect economically on our local businesses and programs by increasing the patient's awareness of them, the benefits to the patient and finally bringing patients and like minded organizations together to meet interests and needs for a more holistic medical method and options for healing.