Disclaimer: This isn’t a traditional blog post for The Lost Labia Chronicles. Typically, I blog about Lichen Sclersosus and Sexual Health and Lichen Sclerosus and Mental Health. However, this piece is an opinion piece focusing on research and Lichen Sclerosus.
In this blog post, I discuss the importance of continuous research on Lichen Sclerosus. Additionally, I highlight the importance of systematic reviews and meta-analyses. I note the importance of research being interdisciplinary, combining results from gynecology, pediatrics, dermatology, endocrinology, rheumatology, etc. Furthermore, I highlight the need for more research into alternative methods such as different supplements and diets. All of this is critical for enhancing current treatment and quality of care for those with Lichen Sclerosus.
Lichen Sclerosus is a skin disease, believed to be autoimmune-related, at the intersection of dermatology and gynecology. Anyone can get Lichen Sclerosus and it can present in every age group, including children. It can cause symptoms such as fissures, burning, white patches, itching, fusing, and architectural changes to the genitals.
I would be remiss if I failed to mention the incredible scientific research on vulvar Lichen Sclerosus by Dr. Gayle Fisher, Dr. Andrew Goldstein, Dr. Jill Krapf, Dr. Marlene Wijaya, Dr. Geoffrey Lee, Dr. Andrew Lee, Dr. Pedro Vierira-Baptista, Dr. Catherine Leclair, Dr. Nicole Green, Dr. Leia Mitchell, Dr. Michelle A Holton, Dr. Davis A. Tran, Dr. Charles J. Macri, Dr. Xiaohui Tan, and Dr. Sidney F. Fu.
It is not that there is no research out there, or even that the quality of that research is poor. On the contrary, there are numerous studies on vulvar Lichen Sclerosus. Furthermore, these studies are held to high standards of quality scientific research. For example, many of them are being peer-reviewed, double (and sometimes triple) blinded, placebo, and sham-controlled* (see definitions at the end). I discuss some of this research in this important blog post here.
However, just because there is a good body of research out there doesn’t mean we shouldn’t push for continued research and experimental efforts.
Thus, to get a general feel for existing research on Lichen Sclerosus, I did a few quick searches in the life and biomedical section of PubMed. PubMed is a search engine database of abstracts of papers in the life and biomedical sciences.
A quick search on PubMed revealed:
2, 753 results for Lichen Sclerosus
1, 283 results for vulvar Lichen Sclerosus.
These are good numbers, however, compare them to:
10, 5111 results for vulvar cancer.
149, 943 results for vaginitis.
4, 598 results for candida vaginitis.
In sum, these search results show how under-researched Lichen Sclerosus is in comparison to other vulvar diseases and conditions. The importance of continued research for Lichen Sclerosus cannot be understated.
I now want to consider different avenues Lichen Sclerosus research can take.
Currently, much of the existing literature on Lichen Sclerosus is either experimental, clinical, or epidemiological. These types of studies are critical for making headway with respect to a number of Lichen Sclerosus research avenues. For example, they are great for developing a deeper understanding of the underlying mechanism(s) of Lichen Sclerosus. Similarly, they are great for assessing the efficacy of different treatments (for example, steroids, lasers, and PRP.
However, there are other types of studies that are just as important.
A systematic review is a study that reviews evidence on a topic with a clearly defined question using systematic and well-defined methods to identify relevant information. Importantly, systematic reviews synthesize information from various papers from different laboratories, in different countries, and from different fields of science.
Gurevitch et al. (2018) define systematic review papers as papers which:
… aim to provide a robust overview of the efficacy of an intervention, or of a problem or field of research. They can be combined with quantitative meta-analyses to assess the magnitude of the outcome across relevant primary studies and to analyze the causes of variation among study outcomes (effect sizes)”.
A meta-analysis uses statistical analysis to combine the results from scientific studies. Thus, the former is qualitative in nature, and the latter is quantitative. Alone or together, they are powerful modalities when it comes to understanding the current state of research, and where there is convergence (and divergence) of evidence.
Again, a quick PubMed search revealed:
26 results for Systematic Review + Lichen Sclerosus, and
11 results for Meta-Analysis and Lichen Sclerosus.
Thus, I hope as more experimental, clinical, and epidemiological studies emerge, those numbers will increase. This will allow for continued insights into several questions relating to Lichen Sclerosus.
Currently, a lot of research is focused on identifying the underlying mechanism of Lichen Sclerosus and treatments. These are extremely important to study and we need this type of research to continue – in large part because we do not yet fully understand Lichen Sclerosus. For example, it is assumed to be an autoimmune disease, but this is yet to be confirmed. Similarly, the genetic component(s) of Lichen Sclerosus haven't been confirmed. There is so much promising and exciting research currently underway, which is so needed. Thus, there is great promise with respect to current research. However, there are other topics that deserve more attention.
For example, searches in PubMed for Lichen Sclerosus and depression, anxiety, mental health, etc. yielded but a small handful of results. Although the physical pathology of Lichen Scleorsus is important and deserves continual research, the mental aspects of Lichen Sclerosus can be just as detrimental, if not more so, for many of us with Lichen Sclerosus. More studies must address various mental health-related questions.
Perhaps if there were more of these, medical practitioners may include a referral to a psychologist/counselor. I know in my case, I had to return to my doctor’s office, have a breakdown, and beg for a referral. Briefly, we should not have to hit emotional rock bottom before we get the care and tools we need to thrive.
While there are a lot of papers examining the efficacy of steroid ointments, there is currently little research into alternative treatment options. This is important because a) not everyone can tolerate steroids and b) some people will not opt to use them. Thus, more research needs to be conducted into supplements, diet and nutrition, and borax (which thousands of people with LS purport to have stopped their LS symptoms). Yet, doctors are remiss to mention these options because they aren’t backed by scientific evidence. However, there can be no evidence if research isn't being conducted. Therefore, more research is needed concerning alternative treatments.
In sum, it is imperative we push for continued research concerning all aspects of Lichen Sclerosus, including but not limited to: pathology, underlying mechanism, genetics, risk factors, steroids, laser, biopsies, alternatives to biopsies such as a blood test (less invasive and traumatic), sexual dysfunction, mental health, nutrition and diet, lifestyle factors, borax, supplementation, surgeries, etc.
Better quality of care and better prognosis for people with Lichen Sclerosus can be achieved by increasing research efforts internationally, including research from different areas of science, and addressing traditional and non-traditional treatment methods.
Thus, let’s work together to raise awareness and increase research so that we can get those PubMed result numbers up and make life better for those with Lichen Sclerosus.
If you have a background in research or are interested in contributing, consider joining the Global Organization for Lichen Sclerosus. The goal of the Global Organization for Lichen Sclerosus is to help stimulate and drive scientific research and industry studies in order for new medications to undergo clinical trials and be supported by empirical research. They strive to collect all current data and deliver it in such a way that researchers and industry alike will work to re-purpose existing treatments, treatments in the pipeline and develop new treatments. They also want to see more research aimed towards assessing the efficacy of some ‘off-label’ treatments and approaches (including diet and borax).
This will be a non-profit organization, so volunteers will be needed for a number of tasks and responsibilities. If you have time, consider joining and see how you can help out! Click below to join!
Double & triple blinded study: A study is double-blind when participants and the investigators do not know what treatment or drug is given to them. Similarly, a study is triple-blinded when participants, investigators, and lab technicians do not know which treatment or drug has been administered. This helps to reduce bias.
Placebo-controlled study: A way of testing a drug (for example, Clobetasol) whereby one group of patients will receive a placebo drug and the other receives the actual drug. This helps to reduce bias since expectations about the efficacy of a drug can impact the feedback from participants and the interpretation of the data by investigators.
Sham-controlled study: Same as placebo, but instead of a drug being tested, it is an intervention such as laser therapy.
Gurevitch, Jessica, Julia Koricheva, Shinichi Nakagawa, and Gavin Steward. 2018. “MetaAnalysis and the Science of Research Synthesis”. Nature 555: 175-182. https://pubmed.ncbi.nlm.nih.gov/29517004/
For articles on Lichen Sclerosus, check out the publications from the CVVD: http://www.vulvodynia.com/publications
If you’re interested, here is my Ph.D. dissertation on the systematic reviews interdisciplinary corroboration in the mind-brain sciences: https://ir.lib.uwo.ca/cgi/viewcontent.cgi?article=8934&context=etd
*The Lost Labia Chronicles does not provide medical advice or engage in the practice of medicine. The information provided by The Lost Labia Chronicles is for education and entertainment purposes only and does not under any circumstances constitute medical advice. Please consult with your healthcare provider before making any changes to your healthcare plan.
Click to learn more about and honor Ellen Swanborn-de Lange the work she did for…
Grief is a big part of processing a lichen sclerosus diagnosis. The grief project highlights…
Hey, beautiful soul. Let me ask you something. Does it burn when you urinate with…
Have you ever used a product on your vulva and ended up having a bad…
In this post, I reflect on my over a 10-year journey to get a diagnosis.…
Living with lichen sclerosus can impact your sexual health. Its impact may be mild to…