Urinary Issues & Lichen Sclerosus: What You Need to Know

Introduction

Hey, beautiful soul. Let me ask you something. Does it burn when you urinate with lichen sclerosus? Do you dread going to the bathroom in anticipation of the stinging pain? If so, you are not alone. I used to struggle with this and I know many folks with vulvar lichen sclerosus who do as well. In this post, I discuss urinary issues with lichen sclerosus. Specifically, I will address why it can burn/string when you urinate and I will share some helpful tips to help manage the pain when urinating.

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Why Does it Sting When I Pee?

Urinary issues can happen to folks with lichen sclerosus. For example, some folks experience stinging and burning while peeing, and others notice their stream of urine sprays all over the place. The second example is considered a more advanced urinary issue, and this will be discussed in the second half of this blog post.

Let's start with stinging and burning pain when urinating. The most common cause of stinging pain when urinating with lichen sclerosus is active tears, cuts, sores, and fissures on the vulva. When urine gets into these open wounds, it can sting, burn, and cause discomfort and distress.

Think about it this way. We've all experienced a paper cut at some point in our life. Paper cuts are caused by a piece of paper or another thin, sharp material that slices through a part of your skin (commonly one of your fingers). This injury causes an open wound. Now, if you've ever accidentally squeezed lemon onto a paper cut, you know how much it stings and burns.

Well, something similar is happening when urine gets into the open wound on your vulva. This is why folks with lichen sclerosus that have open wounds like tears and fissures experience burning and stinging when they urinate.

Story Time – My Experience with Urinary Issues and Lichen Sclerosus

My lichen sclerosus is now in remission. You can learn more about remission and my personal journey with remission on my YouTube channel by clicking here. However, when my LS was active, I had a lot of fissures and tears on my vulva. Of course, this meant that every time I would try to pee, it would burn and sting. This was incredibly distressing for me, especially since for years I didn't even know I had LS and had no idea why this was happening to me.

In fact, I would actually try to deliberately dehydrate myself by not drinking enough water to avoid using the bathroom because of these urinary issues. Of course, this was not healthy and I in no way recommend doing this, but I share this with you with the hope that you will feel less alone if you too struggle with urinary issues and stinging and burning when peeing with LS.

Tips for Folks with Urinary Issues

If you have active cuts, tears, and fissures on your vulva and experience stinging and burning when you urinate, here are some tips to help manage these urinary issues.

Tip #1

Of course, following your treatment plan is crucial for managing urinary pain caused by fissures/cuts/sores. Your treatment plan should be geared towards reducing inflammation; when you reduce the inflammation, you work towards healing your skin. In time, as the medication does its job, the texture of the skin will change so that tears and fissures are less likely to occur.

Tip #2

Use a barrier cream before and after urinating. A barrier cream is a protective cream/ointment; it is thick and helps create a seal/barrier between your skin and external irritants such as urine. Examples include Vaseline and Aquafor; do not use Aquafor, however, if you have a lanolin allergy. Of course, be sure to patch-test any barrier cream first. If you aren't familiar with patch testing, click here to learn more. Apply a small amount to the vulva, especially in the areas with active fissures/cuts/sores before and after you urinate. This can help create a barrier so the urine is less likely to touch the open wound.

Tip # 3

Use a peri bottle instead of toilet paper. After urinating, instead of wiping/dabbing clean with toilet paper, consider using a peri bottle to clean afterward. A peri bottle is essentially a small, portable squirt bottle that is used to help clean genitals after going to the bathroom. Think of it like a portable or less expensive bidet. After urinating, use the peri bottle to clean, gently pat dry with a clean towel, and then reapply your barrier cream.

Add-On to Tip #3

You can also use the peri bottle while you urinate to dilute the urine. While urinating, gently squeeze water from the peri bottle directed around the urethra to dilute the urine. When done urinating, use the peri bottle again to rinse off any remaining urine, and then reapply your barrier cream or a vulvar moisturizer of choice.

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Additional Advice for More Advanced Urinary Issues

While uncommon, other types of urinary issues involve fusing over the urethra. If you aren't familiar with the term fusing and what that means in the context of LS, check out this video I did on the topic here. If there is partial fusing over the urethra, your stream of urine may spray all over the place. This is considered quite rare but can happen. You will want to see a urogynecologist or a urologist if you have this issue.

Another urinary issue that can occur that isn't explicitly linked to LS but you may have regardless is urinary retention/urgency issues. If you have this issue, I recommend booking an appointment with a pelvic floor physical therapist.

The Bottom Line

In sum, some folks experience urinary issues with lichen sclerosus. The most common urinary issue folks with LS experience is burning and stinging when urinating. This pain is caused by urine getting into open vulvar tips. To help with this pain, I recommend following your treatment plan, using a barrier cream before and after urinating and using a peri bottle to dilute your urine and cleaning after urination. If you suspect urethral fusing, I recommend reaching out to a urogynecologist or a urologist. If you struggle with urinary retention/urgency, I recommend reaching out to a pelvic floor physical therapist.

Reach Out to Me

If you want to chat with me about biopsies or Lichen Sclerosus, I can be reached at:

Instagram: @thelostlabiachronicles

Facebook: @TheLostLabiaChronicles

Email: jaclyn@lostlabia.com

1:1 Lichen Sclerosus Peer Support Calls with Jaclyn from TLLC

If you are struggling with grief and emotions, feel free to book a 1:1 call with me. Simply click on this link to learn more about lichen sclerosus peer support calls.