12-14 min read
Disclaimer: This blog post is for educational and entertainment purposes only. It does not constitute medical advice. Please consult with your healthcare provider before making any changes to your health plan or treatment. Individual health needs and responses can vary, so personalized guidance is crucial.
Post Highlights:
- This post is a transcription from this video, and has edited for clarity and conciseness.
- Jaclyn’s Diagnosis Journey: Jaclyn shares her personal experience with a lengthy and frustrating diagnosis process for Lichen Sclerosus, including the challenges of receiving inadequate medical advice.
- Suzanne’s Inspiration and Product Features: Suzanne discusses her motivation for creating Private Packs, including the unique features that make the product effective and user-friendly.
- Call to Action: Suzanne encourages everyone to invest in their care, empowerment, and accessibility to manage symptoms effectively.
- Benefits of Heat and Cold Therapy:
- Heat: Enhances blood flow, aids in relaxation, and improves sexual pleasure, particularly for those with Lichen Sclerosus.
- Cold: Offers relief from soreness and burning after sex.
Introduction:
Jacqueline is the host of the Lost Labia Chronicles, where she talks about all things related to Lichen Sclerosus (LS). If you have LS and are looking to empower yourself with information, find acceptance, and reclaim your life, then please subscribe to her YouTube channel. If you have a friend or family member with Lichen Sclerosus and want to learn more about the disease to better support them on their journey, please share Jaclyn's YouTube channel with them. If you enjoy any of her videos, please give her a thumbs up. Below are a few highlights and excerpts from our one of two two sit-down interviews.
Jaclyn: What inspired you to create Private Packs, and how do they work?
Suzanne: I created Private Packs after experiencing second-degree burns from a Brazilian wax. Traditional ice packs are too bulky and aren’t clean—I have never seen a grocery store clerk wiping down each bag of frozen vegetables to make sure it's clean. What makes Private Packs special is that it can be used both cold and hot, are produced in an FDA-compliant facility, and are specifically designed for the vulva, offering a more comfortable and sterile solution. They come with a reusable protective sleeve that replace bulky towels or paper towels.
Jaclyn: I’m loving this; you’re dropping so many gems in just the first few minutes! That was smart because what does heat do?
Suzanne: It encourages blood flow, and when we think about sex, we want blood flow to the sex organs, like the clitoris, to encourage arousal and relaxation. This is especially important for people with LS because many of us experience pain during sex, which causes our pelvic floors and everything else to tighten up. Heat really helps calm those muscles down, making sex more pleasurable. Adding moisture also to the skin or sleeve makes it more fantastic.
And then, for folks who experience soreness afterward, you can use the cold pack that’s been sitting there to calm down any soreness or burning that might occur. That definitely happened to me—I would always feel burning after sex, or at the very least, soreness. In my 20s, I wish I had this wisdom. It didn’t even occur to me to use something like a bag of peas back then; I just thought it was normal, I guess.
We’re not taught how to manage or even acknowledge our private part discomfort and that is my mission: to acknowledge and address these issues without meds. Experiencing discomfort doesn’t mean you’re dirty or doing something wrong. Private Packs offer a manageable solution to help with symptoms without needing to see a doctor. Whether you're dealing with issues from using a dilator or penetrative sex, Private Packs can help manage pain, especially with chronic conditions like herpes, vaginal dryness or LS and more.
Jaclyn: For those who are new or not very familiar with Lichen Sclerosus, let me give a brief overview. I have a video titled "What is Lichen Sclerosus and Is It Serious?" which provides a more in-depth explanation, so I recommend checking that out.
Briefly, Lichen Sclerosus is a chronic inflammatory skin condition that primarily affects the genitals, including the vulva, perianal area, and sometimes the penis. It is widely considered an autoimmune disease in the medical community. The main symptoms are itch and pain, though not everyone experiences both. Itching can range from mild and intermittent to severe and debilitating. Some people experience insomnia due to severe itching, and it can be so intense that it causes physical damage to the skin.
Pain associated with Lichen Sclerosus can vary greatly among individuals. It might feel like burning, stinging, or general soreness. I used to describe it as feeling like a bunch of paper cuts with lemon juice or rubbing alcohol poured on top.
Since Lichen Sclerosus is a chronic condition with no cure, treatments aim to help manage symptoms and achieve remission, but they’re not always foolproof. Sometimes, additional tools are needed to manage symptoms, especially while waiting for medication to take effect.
Jaclyn: So, for people dealing with chronic symptoms of itching and pain, how do you see Private Packs fitting into their treatment plan to help manage these symptoms?
Suzanne: I see Private Packs as an additive to the treatment plan, complementing what doctors have already prescribed. It’s intuitive for many because most people are familiar with using hot and cold packs. However, a bigger question is whether people know what they're dealing with and how easily doctors can diagnose LS.
Suzanne: For you, Jaclyn, how was the process?
Jaclyn: Oh my gosh, I went through this for over 10 years before receiving my diagnosis. As a grad student, I moved around frequently and didn’t have a general doctor tracking my case. My symptoms started in my 20s with painful sex and tearing of my vulva and perineum. In my mid-20s, the symptoms progressed to fusion, and without treatment, it continued to worsen because Lichen Sclerosus is a progressive disease.
I visited various doctors during this period, explaining my pain and discomfort, only to be told that it was just part of being a woman or that I was stressed. I was even advised by two doctors to try wine, which I found to be terrible advice. Not only was it inappropriate, but it could also potentially lead to alcohol abuse as a coping mechanism for my pain.
Finally, after completing my PhD, I moved to Toronto and got a family doctor. I mentioned my vulva issues during an unrelated visit, and she asked to examine me. Within seconds, she identified it as LS. This was a shock because I had no clear idea of what my vulva looked like. She noted that my vulva had turned white and paper-thin, and I had lost significant anatomical structures, such as my inner lips. This loss of anatomy led to reduced sensation and muted orgasms.
The average time for a LS diagnosis is 5 to 10 years, and I was on the longer end of that spectrum. Awareness is crucial because many people, like me, were searching for answers with limited knowledge. I initially thought my symptoms were related to yeast infections or STIs because that’s all I knew. Receiving the diagnosis was both validating and frightening, especially when I learned there was no cure and I would need to use a steroid ointment indefinitely.
The medication didn’t work immediately; I expected it to act as quickly as antibiotics for strep throat. It took about three months to start feeling better, and it can take up to a year for full remission. During the initial phase, ice packs were my go-to for relief. However, they were clunky and inconvenient, and using them in public or around others was awkward.
It felt awkward for me to explain and justify the use of those methods. Then, while browsing Instagram, I came across Private Packs. I went to the website and thought, "This is genius!" It addresses all the issues I had with frozen peas and ice packs. Unlike traditional ice packs, which are narrow and difficult to position, Private Packs fits the area perfectly, from the vulva to the perineum, and hugs the body well.
I was also impressed by the discretion of the product. For people with LS, controlling the timing of the itch can be challenging. With Private Packs, you can manage symptoms discreetly. If your hosting and if you have guests over and suddenly experience dryness or discomfort, it can be challenging to stay present and enjoy the moment. You might find yourself feeling frustrated and self-conscious. With Private Packs, you can simply excuse yourself, grab a pack from the freezer, and discreetly place it in your underwear. Then you can return to your guests feeling more comfortable.
When I first tried Private Packs, I put them through a thorough test. I wore them at work while using a standing desk, while seated, on the subway, and during walks. I appreciated the flexibility they provided, allowing me to use them discreetly in public spaces. For example, I once wore one to a coffee shop without anyone noticing. The packs fit comfortably and discreetly, and they come with protective sleeves to ensure that the ice never directly touches the vulva, which is important for safety and comfort.
Suzanne: Also, different body parts require different care. Your skin, your dermis, doesn't react well to just any treatment. When I created Private Packs, I based it solely on my personal experiences. I didn’t realize there were so many women experiencing similar issues down there. Most people, especially those who don’t own a vulva, aren’t aware of what happens in that area. Even doctors, including gynecologists and urologists, don’t always have all the answers, as you've seen from your medical journey with your genitals.
Suzanne: Private Packs is essentially a love letter to vulva owners. I wanted it to be discreet because not everyone can plug in a heating pad under their desk at work or bus. Imagine a mom holding her newborn and needing relief; she can’t exactly use a bulky heating pad. Nothing seemed to fit our lifestyle.
What’s great, especially in the United States, is that CVS picked it up because they understood the needs of their customers. They provide this on their shelves, enhancing the customer experience for self-care. We’re positioning our products alongside others like Monistat and Azo, because female health needs more options. We don’t always get a pinpoint diagnosis for what ails us, nor do we always receive the correct treatment—like alcohol—to address our problems. Do no harm.
Jaclyn: Exactly, do no harm. I don’t understand how anyone could think that prescribing alcohol wouldn’t cause harm. But it’s a big eye-opener into how the opioid crisis started, isn’t it? Doctors sometimes do anything just to get patients in and out quickly. If a doctor could see a patient every 10 minutes, they’d prefer that. They want to get you in and out as fast as possible. Early on, doctors were critical of Dr. Google, but now they expect patients to come in with information from the internet. Instead of using it to help diagnose and treat you properly, it often just becomes another tool for them to expedite the process.
Suzanne: If you think about it, doctors simply don’t have the time to make all-encompassing recommendations for your entire life. They can tell you to use a steroid ointment, but that’s often where their advice stops. While steroids can be helpful, they don’t address every symptom completely, and doctors may not consider other aspects like your mental health, sexual health, or lifestyle changes. For example, they might not mention things like using ice or applying warmth to the area to improve blood flow and relax muscles.
Much of this information gets overlooked, leaving patients wondering what else they can do. For those who haven't received a diagnosis yet, or are experiencing symptoms without a clear explanation, products like Private Packs can provide interim relief.
I was talking to a friend who recently gave birth and is breastfeeding. She mentioned feeling dry and itchy. I recommended Private Packs because, as a new mom constantly on the move, she doesn’t have the luxury of sitting at a desk with a heating pad. Something simple, like grabbing Private Packs from the freezer and using them discreetly while taking care of her baby, could be incredibly beneficial. These are things we’re not often taught about, and the hormonal changes after childbirth can have significant implications that aren’t always addressed. On the other hand, people often hesitate to ask questions due to fear of judgment. I want Private Packs to be seen as a supportive resource, much like a podcast, designed to help you manage your care better and empower you. We aim to keep our pricing reasonable; we charge $19.99 online because you get more product compared to in-store purchases. Our product is also reimbursable as a healthcare expense and exempt from sales tax. This minimizes barriers, making it easier for you to take care of your health.
That’s why we use fabric, so you don’t have to discard and buy a new pack every week. It would be impractical and unsustainable to expect someone to purchase a new pack each week. Instead, our packs are reusable. I see it as an investment and always recommend that people with chronic conditions, like LS, get more than one. If you’re just using it for post-waxing relief, one pack might suffice. But if you have a chronic condition, I suggest getting a few.
Jaclyn: I like to have what I call my "Private Packs assembly line"—I keep a few on hand so I can rotate them. When one pack isn’t as cold anymore, I swap it out for a new one, and I keep the process going. I really love that system.
Suzanne: I started with discomfort from Brazilian waxing and now deal with chronic vaginal dryness. It’s an ongoing challenge. We’re looking to expand our product line to address more issues, as I continue to learn about and understand these conditions better.
Jaclyn: Oh my gosh, yes. There is definitely a demand for this. I talk to people every single day and tell them, "You need this. You can benefit from it." For conditions like vulvodynia and others, using warmth before your dilators and applying soothing oil afterward can help reduce irritation and increase moisture. There are so many ways this can be beneficial.
Suzanne: I needed more than what I had because when you apply oil or any type of lubricant, like Aquaphor—which is what I use due to its thick consistency—it helps with chafing. Even though walking is great for my health, it can still be painful. Aquaphor's thick consistency is beneficial for covering my labia majora, especially since I no longer have labia minora.
I use the Aquaphor and then apply the heat pack to help the Aquaphor penetrate and make my skin more supple. This approach helps with my vulva chafing. Dry skin will chafe more quickly, while hydrated skin can better withstand it. The soothing effect can last for about three days. And you don’t want to use, say, a deodorant stick, even though it might seem like a good idea. It's important to do your research and find appropriate solutions. For example, some people use various methods to reduce friction, such as applying a specific kind of silicon lube, balm or powder to the area. Knowing these options helps you better manage your care and address these common issues effectively.
One thing I love so much as you're speaking is how minimal the risk is with this product. When we discuss side effects and treatment plans for various vulvar or vaginal conditions, many treatments come with some pretty scary side effects. In contrast, with something like Private Packs, the risk is very low. The only potential issue I can think of is applying ice directly to the vulva, but because Private Packs come with a protective sleeve, that problem is eliminated. There’s so little risk and so much benefit, which is a relief for people with chronic health issues who often have to weigh the risk versus benefit of their treatments. With Private Packs, it feels like a win-win. Thank you for creating this product.
Jaclyn: We just want to empower everyone and show that feeling fabulous is attainable. Is there anything else you'd like to mention before we wrap up?
Suzanne: No, just that everyone should know how fantastic you are. Your content is incredible, and people should follow you for anything related to vulvar health. Thank you for your work.
Jaclyn: Thank you, Suzanne, and thanks to everyone who watched. If you use Private Packs or plan to, let us know in the comments, and feel free to ask any questions about the products. That’s it for this video—see you next time!
Bye everyone!
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