Introduction
Today is part one of our 2024 series on vulvar lichen sclerosus (VLS) and fissures. Before diving into the science of VLS and fissures, though, I wanted to share a more personal post about my experience with fissures. This is a very vulnerable share, but I hope I can raise more awareness and help others by putting myself out there.
My Long-Term Relationship with Fissures
Fissures and I have been in a long-term, complicated relationship ever since I was 20. They first made their appearance after I had sex. Mid-sex, I remember feeling like I tore or something. I was confused. After, when I peed, I remember it stinging. At first, it would only happen sometimes. Sometimes, I would have sex and be fine; other times, I would have sex, and I’d end up with a fissure.
However, as the years went on, my fissures became more of a constant companion. Almost any penetrative sexual activity was a guarantee that I’d end up with fissures.
The most common area that I would tear and end up with a fissure was the opening of the vagina/fourchette area. This was by far my biggest trouble area when it came to sexual activity.
Later in my journey, fissures didn’t just make their unwelcome appearance with sexual activity. Even when I would refrain from sexual activity (due to fear/avoidance of pain), my vulvar skin would be full of fissures. I’d have fissures on my labia minora and all around the clitoral area. The clitoral area was particularly painful. These fissures plagued me and caused me a lot of distress in my day-to-day life. I would hyper-fixate on the fissure sensations and catastrophize about them. It certainly didn’t help that healthcare providers kept telling me there was nothing wrong with me.
Describing the Experience of Fissures
Describing pain can be immensely challenging. I have multiple chronic pain conditions, and some of my biggest frustrations were trying to find the words that correctly matched what I was feeling in my body.
When I first went to doctors about my symptoms, I remember saying, “It just hurts” and “Sometimes wrong; it hurts with sex.” Of course, that got me nowhere fast.
Later in life, I became more descriptive in describing my pain. I would explain that it felt like I had papercuts all over my vulva that would sting and burn when I moved. When I peed, it felt like someone poured rubbing alcohol all over my vulva.
I’ll never forget when I first described it to a provider, and they went from looking confused to like a lightbulb went off, and they said, “Oh! Those are fissures; that is what you are dealing with”. Fissures. Huh. A word…finally.
Here Come the Anal Fissures
If you’ve ever had a 1:1 support call, heard me talk at events, or been part of my group at virtual meetups, you have heard me lament about anal fissures. Before I learned about vulvar lichen sclerosus and my body, I used to assume any itch or pain around my anus was due to hemorrhoids. So, I would treat it with over-the-counter hemorrhoid medication, which never really did much. Years later, when I learned what the word fissure was, I had a lightbulb-aha! moment, realizing maybe it wasn’t hemorrhoids but fissures!
I realized it was fissures because when I would have a bowel movement, it literally felt like my whole anus was being torn open. There was one point where I had an anal fissure for seven whole months. It was literal hell. I would get anxious every morning and feel panic and dread when I would have to go to the bathroom. I would contort my body into the most outrageous positions and cry silently as the pain was out of this world. For the whole seven months, there was blood after each bowel burning, and I would experience intense burning hours after.
Seeking Medical Advice
I sought medical help multiple times over the seven months. My doctor confirmed it was an anal fissure and told me they take a while to heal. She recommended I drink Restoralax (Miralax) to soften my stool and prescribed me nifedipine ointment to put on the fissure. I was also told to soak multiple times a day–some days, I swear I spent more time sitting on my sitz bath reading emails and playing Candy Crush than I did off the toilet.
I followed my doctor’s advice diligently, but despite this, I wouldn’t heal. Even with a super soft stool, I would still tear and burn. No matter what I did, there was blood in the toilet and on my toilet paper. It was so upsetting. I would often find myself wondering, could I have anogenital lichen sclerosus too (i.e., lichen sclerosus in the anal area). I had only been diagnosed in the vulvar area, but, in fairness, I never had a provider examine my perianal skin. Further, I also would randomly wait up with intense anal itching.
Scheduling a Colonoscopy
At six months of soaking, using nifedipine ointment, drinking Restoralax, watching my fiber, and drinking water like a fish, I booked another appointment with my doctor. This time, she referred me for a colonoscopy hoping to provide insight into what was going on. I didn’t mention my suspicion about lichen sclerosus at the time–yes, I, too, still get tongue-tied at the doctor’s office when I’m stressed and nervous.
I was pretty nervous about the colonoscopy–especially the prep–worsening or causing my vulvar lichen sclerosus to flare (spoiler alert, it didn’t). The hardest part of the prep was actually the fasting; if you know me, you know I love to eat and have a huge appetite.
On the day of my colonoscopy, I mentioned my history of chronic fissures and the fact that I had vulvar lichen sclerosus. To my surprise, he knew what LS was! He said he would look and see if I had LS in the anal area too, when I was under.
When I woke up, the surgeon told me he didn’t think I had LS in the anal area, just a bad fissure, and told me to follow the same steps my doctor did. I know LS isn’t his specialty, so sometimes I wonder if he missed it.
Where I am Now with Vulvar Fissures
Luckily, I haven’t experienced any more fissures since getting my skin into remission. It took me a few months of diligent Clobetasol use and moisturizer to heal my skin, but once my skin was healed and my LS was under control, I was no longer plagued by vulvar fissures.
Where am I at Now with Anal Fissures
Unfortunately, this is still a big challenge for me. Ever since that massive anal fissure that lasted seven months, I’d had them pretty bad, on and off. Even though my poops are consistently a 3 or 4 on the Bristol Stool Chart, I still tear when passing stool. I still randomly wake up with intense anal itching. I still do all the right things, but they still plague me. Further, I still wonder if I have LS in the anal area; but it’s hard to get people to look at me there (I practically have to beg, and it’s so humiliating).
I’m still hoping to find an expert who can provide clarity for me. Until then, I will keep moving forward and doing my best to manage my pain.
Conclusion
In sum, fissures were a huge part of my vulvar lichen sclerosus journey. While my vulvar fissures healed and haven’t reappeared since getting my skin into remission, I still massively struggle with anal fissures and getting a diagnosis and plan for that area.
Share your experience with fissures in the comments below.
In our next post, we will dive deeper into treating fissures with vulvar lichen sclerosus–stay tuned!
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I have suffered with LS for a few years now. So far no severe anal fissures. I wanted to share that I recently discovered that Desitin ointment almost completely relieved my pain and itching. Before I had to apply something several times a day. Now I don’t have to use it every day. This has been my miracle. I hope it works for you as well as it did for me. It was such a game changer.
Thank you for this! I read the post when you first blogged it but didn’t realise at the time how much I was going to need it. Just had my most recent LS check up last week and sure enough, fissure and anal LS. I panicked less because I remembered you’d blogged about it so came back to reread and know I’m not alone. FWIW my specialist said to use the clobetasol only twice/week for the anal LS as opposed to my every other day vulvar clobetasol. I’m so sorry that you haven’t been able to have your providers check for you–shocking they wouldn’t when you already have LS and according to my doctor, the spreading is not unheard of.
Thank you for sharing your experience with this. I had a chronic anal fissure for a year. I haven’t been able to get conclusive answers about whether or not this was aggravated by LS, but I wanted to share what I’ve learned so far. The fissure was first diagnosed by my gynecologist, who is very knowledgeable about LS, but she said she saw no signs of LS in that area. At the time, I’d been in remission for a few months. She gave me a muscle relaxer to use as a suppository and triamcinalone, but they were not helpful. Next, I worked with a colorectal surgeon using conservative treatments (Diltiazem compound ointment, etc.) for about six months. He discouraged the use of steroids in that area because it might prevent healing. The fissure would heal, then re-open again and again. It deepened and developed a painful sentinel pile. The surgeon told me that he had a patient with an unresolved fissure due to LS, but didn’t see signs of LS in that area on me. I decided to go through the recommended surgery: Lateral Internal Sphincterotomy six weeks ago. I asked the surgeon to take a good look during the exam under anaesthesia to see if there were any signs of LS, but he said he didn’t see any. I’m hopeful that this issue will be resolved but I’ve come to realize that I’ll have to be really careful with my diet and hydration for the rest of my life to avoid a reoccurrence of the fissure. I’m so sorry to hear that you are going through this now. You might already know this, but one bit of advice the CRS gave me, that I think would have helped early on, is to keep the fissure dry so that the tissues can adhere. If it is too wet, or has an occlusive, or lidocaine, or any other ointment on there, it will be much more difficult to heal. I used to do the Diltiazem treatment followed by a sitz bath to remove the ointment, then blow dry my butt (yes, 2-3 times a day! 😅). By the time I started with the conservative treatment I’d had the fissure, and had been slathering it with ointments, for too long. Another thing that I learned about after I had the surgery is the use of anal dilators to help relax the internal sphincter to get the blood flow to the fissure. I wish I had known about that because I would have tried it. Surgery was a last resort for me. I hope you feel better soon. You are definitely not alone in dealing with this. I really wish people would talk more openly about this and I’m so grateful to you. If you have any questions let me know.
This is so helpful. Thank you for sharing your knowledge with us! Sharing is indeed caring!
Painful bowel movements and constipation could possibly be a sign of LS in the anal and perineal skin. Source:
Inflammatory Vulvar Dermatoses (Part I)
https://www.sciencedirect.com/science/article/pii/S0090429522002667
Potentially some symptoms that appear like fissures could be the result of a HPV infection. This could be confirmed with a Biopsy.
Maybe LS in the anal area is missed during examinations because:
“In the anogenital area, at first only a slight redness may be seen. White hyperkeratosis, atrophic skin, lacerations and ecchymosis typically occur later in the course of disease.” Source:
Kirtschig G. Lichen Sclerosus-Presentation, Diagnosis and Management. Dtsch Arztebl Int. 2016 May 13;113(19):337-43. doi: 10.3238/arztebl.2016.0337. PMID: 27232363; PMCID: PMC4904529.
This article has ideas on dealing with anorectal problems:
https://www.glowm.com/section-view/heading/Common%20Anorectal%20Problems/item/71#
They suggest using lidocaine prior to a bowel movement will help. I would use a 2% viscous Lidocaine gel as it has less ingredients than the OTC Lidocaine creams.
Thanks as always for wonderful info, Cathy.
Wow! It is great to know we are not alone. My anal fissures were assumed to be hemorrhoids as well. My doctor referred me to several surgeons for them. One doctor told me to just put a band aid on it! It was only recently that my lichen sclerosis was finally diagnosed and I am able to keep it under control. One thing I found that helps with itching and pain is Prep H in a spray! Also aloe Vera. Thank you for all the support.
I’ve also heard aloe vera from folks who have emailed me. I should look into the Prep H spray – thanks for the support and tips!
Hello, reading your post I no longer feel alone in my journey. I have always had so many problems with fissures and no matter what I do they do not heal. I see stars every time I pee. It is horrible.
Thanks for sharing, Maureen. It’s truly awful; I wish no one had to experience this. I hope you get some relief soon <3
Jaclyn, my heartfelt thanks and admiration for sharing even more personal, Helpful information.
I’m not quite an old woman yet but I’ve recently been diagnosed with LS. I worked in nursing for decades and know how reticent we can be as females in sharing such intimacies. Especially my generation. The LSSN and your website have been an enormous comfort. Continue in courage!
Aw, thank you so much for your kind words, Anita! We appreciate it. Yes, it can be hard discussing things like this so openly, but if it helps others feel less alone, I’m more than happy to do it. Sending love,
Hugs to you Jaclyn! Thank you for sharing this, it makes me take more notice of my body and make sure I advocate for myself next time I’m seen at the doctor’s office.
Thanks so much, Liz! Appreciate this! Advocating for ourselves is hard, but you got this <3
Hi Jaclyn,
Thank-you for sharing your experience. I too, like so many women have had a hard time getting a diagnosis.
Now I am going through GUSM (genitourinary -urinary syndrome of menopause) Lichen Planus (chest, back, scalp) and Lichen Sclerosus (vulvar and anal) and eczema or psoriasis all at the same time. It is sickening to me that I have seen a gynaecologist every year since the age of 16 and not one has ever mentioned any of the above. Even after examining me my last gyno told me to never mind how it looks ( I was shocked and in tears, clearly unsettled with the symptoms and anatomical changes. Just use Hyderm when you are itchy and KY if you want.) I was and still am so disappointed in the health care system. If they don’t think it important to teach med students about this I don’t see why we can’t be, at the very least given a pamphlet at some point, even sex ed in school would possibly have given me some idea of what to research on google. If any women in my family or circle of friends went through this or are going through this they have kept it a secret.
I have found a dermatologist and a new gynaecologist who seems to be more up to date so I am crossing my fingers.
As for the anal fissures, oh I hear you, I have even had to check out of a hotel late because I was stuck on the toilet. The drive home was hell. It is better now but what I wanted to mention is that once I got a prescription for Clobetasol the pharmacist told me to use sparingly, I should not have listened because that made the treatment ineffective and anatomical changes kept progressing. Then I needed to start all over after follow up appointment 3 months later. Granted that there is so much going on at once that it is hard to say what is causing what.
This has been and still is at times an overwhelming ordeal and very little help out there so what you are doing is so very appreciated.
Bless you
Oh, Angie. My heart goes out for you. You are dealing with so much and have been let down by the medical system time and time again. I really hope the new doctors are much better in caring for you. Ugh, I have had similar experiences at hotels/traveling (it’s the absolute worse). We at LSSN are working to educate pharmacists on best practices for steroid medication because a lot of misinformation is shared, unfortunately. We appreciate you! Stay with us <3
Thank you for all you are doing and sharing. No one should ever feel embarrassed or humiliated by discussing any of our body parts or issues with our doctors. We all have the same human bodies and functions. To share your personal story helps us all to respect ourselves and advocate for ourselves!
Thank you so much, Emily. I so appreciate your comments. And we agree – bodies are just that, bodies. We should be able to talk about them without shame or stigma. <3
This blog sounds like you are writing my story….except it took about 20 years before I got the correct diagnosis. Years of docs and me thinking it was hemroids or vag infections etc. I do get short remissions but fissures are still randomly happening or “just around the corner.”
It’s amazing how many people relate to this since we published this piece. It actually helps me feel less alone. Thank you for sharing this <3
Thank you for your vulnerability. I too always asked my anus to be checked because I don’t want them to miss anything. I wonder too if my providers are familiar with LS in that part of the body. I do worry I might be missing on something I should be healing, but don’t want to put steroids on something and make it worse
This is totally where I’m at too. I do not put steroids there and probably won’t unless someone gives me a diagnosis, but it’s very hard to get providers to look, and if they do, they usually do not have any answers. But, I’ll keep trying. Thanks for reading and leaving a comment. <3
I have dealt with very similar experience. Anal fissures are 100% more painful than any vulva/vaginal ones I’ve had and take so long to heal and nothing to reappear it seems. I just recently had someone confirm that my LS is around that area too. Clobetasol, Low Dose Naltrexone topical, CDB suppositories, and coconut oil have really helped me to get it into remission.
That’s really helpful, Aurora, thanks for sharing what works for you. Glad you were able to get it into remission, because you are right, anal fissures are absolute hell. Thank you so much for your comment and for sharing <3
Thanks for sharing. My journey sounds remarkably similar to yours. This morning was a major pain morning and I could feel the fissure happening during morning ablutions. It is awful. Sometimes I feel quite despondent about it. What I wouldn’t give to no longer be 1. In pain 2. Hyper vigilant about my mouth and genital area Oy.
Thank you for sharing, Rivkah. It is so, so hard. I wish you no longer have pain and no longer have to be hyperviligent, because I’ve been both, and it’s awful. I totally know what you mean when you say you feel the fissure happening. Sending you love and healing,
Oh Jaclyn this must be so awful for you. Thank you for the posts that you send to us you really are an inspiration. I have learned so much about LS by reading your posts and videos.
Thank you and take care x
Thank so much for sharing Jaclyn! It is so good to be able to discuss these issue openly! I feel your pain! I have had this issue only not quite so severe! I was lucky to find a female’s specialist GP who is helping me manage the LS among other things. This was thanks to a lady who happened to be in my area on an LS FB support group. The GP asked me a million questions which I was glad of, as I was too embarrassed to blurt out my anal issues (and I didn’t even think it might be LS), The GP wanted to have a look 😬. She confirmed it was LS. This GP has been fantastic in getting the treatment with the steroid ointment. I am not completely out of the woods but my large painful fissures have healed! I feel positive and hopeful under her care. I only wish others could find a knowledgeable practitioner to help them! xxoo
Thank you so much, Susan. I so appreciate your kind words and support.
I appreciate all your information! I’ve had anal fissures but once diagnosed with vulvar LS, I started using clobetesol in that area as well and am so much better!! Have you tried using the steroid in the anal area?
Thank you for your comment, Barbara. I haven’t tried yet as I’m nervous to do so without a diagnosis…perhaps I could try a weaker steroid first and see how that goes? Thanks for your recommendation <3
Hey Cathy and Jaclyn (and the rest of the women). Is it possible that you take this topic on your agenda of the youtube channel/podcast and invite a proctologist that is familiar and has much experience in the successful treatment of anal LS (which can cause fissures and itching from what I have understood)? Treatment with clob or triamcinalone? What are the main symtoms of anal LS? Is it okay to put the steroid on the fissure or do you need another cream to heal it first? I just have the impression the subject of anal LS is really important since it is such an intimate spot and we use our anal parts on a daily basis. I have the feeling that there are also folks who suffer from anal LS a lot, the skin there is really quite tender. A specialist on that topic would be great, but I dont know how hard it is to find one.
And maybe after such an interview Jaclyn would know better what direction to go for with her anal fissures. I missed infos on anal LS on LSSN, if I have overseen anything – feel free to let me know.
I live in Germany, and I know the Swiss support group (which is probably the leading LS support association next to Great Britian in Europe) has had an interview with the proctologist some years ago on that topic. Sometimes it helps to hear different opinions on that subject. Or to know what the American research is currently saying here.
I am suffering from anal fissures and anal itch, too. So I feel you. Your channel has helped me enourmously to feel less alone with LS although I live far away. You guys just spread so much optimism, that helps me to deal with it. Thank you for your work!
P.S. sorry for the mistakes, English is not my native language ;)
Thank you for sharing, Genia! We finally got it! We’ll be releasing the video interview on anal LS this Friday. We’re excited for you to see it. 🥰🤗 Kathy
Barbara, I understand that some medical providers would prefer you treat the anal area with a steroid less potent than clobetasol as the anal tissue is different than the vulvar tissue and perhaps is more prone to steroid atropy. I was advised to use Triamcinalone .1% ointment in the perianal area. I would love to see this topic explored more by Jaclyn or by LSSN.
Thank you for sharing this! I have only had LS symptoms and tearing/fissures in perineal and anal area & my doctor treated me with many different meds before testing me for LS – I feel very blessed that the Clob keeps it under control for the most part but still have itching and irritation 2/3 times per week – hoping that continued use of steroid and oils will keep it at bay. Before starting them I would obsess about that area of my body all day long.
Aw, thanks for sharing. Glad you finally got a diagnosis and are able to control symptoms and have better quality of life. Hopefully it will keep getting better so you do not have symptoms at all. Sending love and healing,
Thank you so much for this post and for all your work trying to bring lichen sclerosis out of the dark!
You’re welcome, thank you so very much for your support.
Thank you for sharing your experience. What a journey!
Thanks, Tracy – we appreciate you!