New to LS
Posted , 5 users are following.
Hi! I'm 66 years old, diagnosed with LS about a year ago. I'm healthy otherwise, exercise and eat a healthy diet. I had experienced anal fissures before before my diagnosis, changed my diet by adding more fiber and it helped with the fissures. Then I had my first LS flare up, went to an Endocrinologist who diagnosed me with LS. She prescribed Clobetasol which helped. When I first noticed symptoms starting, I would start using it to nip my symptoms, however I'm currently in another flare up and it isn't helping. I researched online, found this group! I have to be honest, I was depressed after I goggled LS! I'm married, had an active sex life with my spouse, now due to LS, I have to say no to sex until I get through this flare up. I'm willing to change my diet, laundry soap, bath gels etc. I'm so thankful for this group and sharing with each other, hoping to get some improvement!
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couldBworse patti62276
Edited
Hello everyone as you can see by my post name I am trying to keep this in perspective to what I was biopsied for " Vulvular Cancer".Which the diagnosis came back as LS. I am trying to put the first indication before April 2021. Because of Covid I was spending a LOT more time on a spinning bike. I am a 67 year old very active female. I had Thyroid goiter removed when I was 12 years old and have been on Synthroid my entire life. My niece has Bichetts which is also a rare auto immune disease. Before my diagnosis I was treating my burning pain and blisters with OTC yeast creams and Acyclovir as I was worried that my Herpes had spread to another area or I had a terrible yeast infection out of control. My first excruciating experience which led me to seeking medical advise was during an extremely stressful time and add that to a trip to the farmers market for a huge bag of Spinach which I love. I had also changed my breakfast from oatmeal to (of all things) bran cereal and almond milkI have to laugh out loud that it was the perfect storm. Trauma and oxalates. What helps me is Clobetasol only. Any cortisone ointment tears me up and makes everything worse with beyond horrible pain; even if I have no redness or blisters. I am now keeping a daily journal. I found that one day had spinach in a butternut squash lasagna, next day flair, one day had a kind power bar with almonds next day flair. I have not returned to my spinning bike but I know exercise is good for optimum health so I will continue with other forms. I wish you all the best of luck. My present redness and pain lines the outer labia and episiotomy scar which feels as though I poured muratic acid in my lap. I was shocked to take a mirror and could not recognize what was once my lady flower now looks like its covered in white paraffin and ugly red scars 😕 I am fortunate that my husband is patient and understanding as this has affected us both greatly. I wish each and everyone of us fast healing and "0" flair ups. This forum is very helpful. My Dr. and did not know diet would help. I am also going to try coconut oil and emuaid. Thank-You
patti62276 couldBworse
Posted
Hi couldbworse!
Thank you for sharing your information history with us! I like the idea of journaling! I'm starting today! I did see my Dermatologist today for my recent flare up, she suggested I continue taking Epson Salt Baths to help with the pain and inflammation. She also gave me some samples (Ultravate Lotion) and Halog Ointment) to try before filling a different prescription. I was using the Clobetasol which helps sometimes, but not others. The doctor also said that using Clobetasol more than two weeks, will thin our skin and cause other issues 😦
I am an active cyclist except for the times I can't ride due to pain, I want to continue this since it helps keep me sane! I decided that I'm getting my Juicer out of my pantry and add fresh "Anti-Inflammatory" Juicing back to my daily activities. The doctor also agreed with me that an Anti-Inflammatory Diet will help, so this will be my goal everyday. I eat pretty healthy now, just need to make some adjustments. Let's keep the Flare-Ups away and thanks again for sharing!
eggbiscuit couldBworse
Posted
Dear BWorse,
So sorry to hear what you've been going through. Clobetasol is like a cortisone ointment only 1,000 times as strong. It could be the excipients in the Cortisone preparation. I have eaten wheat, nuts, etc and not seen any additional problem. When I'm off of those inflammatory foods, I don't see improvement. We are all so different. I did not get relief from Emuaid but by all means try it. COconut oil has helped as I think the baking soda/borax spray. However, I 'm surprised you can bike ride at all. I recently read some medical articles about trauma and how it takes years--even decades-- to show up in physical problems. This is very close to the Chinese theory of "liver dampness." You can look that up and see if it fits. Don't give up! Biscuit
couldBworse eggbiscuit
Posted
Thank-You both Eggbiscutt and Patty.The journal is to account for the "what will the future bring" to see if diet, life events, treatments change anything - it is all so new to me. I thought everything was happy and healing and then I burned and blistered worse with the what was possibly the third or fourth flair after consuming certain food. (shrug emoji) I try hard to think I could have had this for longer treating it as herpes or normal vaginal dryness of a 67 year old.So I am only guessing about the oxalates related to LS as I did have a drastic diet change with high oxalates that caused me to seek medical help. ( shrug emoji) I am pretty good with eating low or no processed food and no/ low sugar. I understand that clob has cortizone, however my dermatologist has me on two other higher dosed cortizone ointments that I can not tolerate at all even when I do not feel burning.I went back to the bicycle and indeed got great workout as I was careful to use a lot of legs and climbing and NOT sitting on my butt the whole time LOL. Then up to shower and air dry. Laughing again as only those with LS can understand. I just purchased pure aloe gel and turmeric extract to try the formula found here. I also have pure coconut oil in place of clob the past few nights. Hmmmm yes I report feeling a little more like "me"This support forum has been a life saver. As you are all aware I do not wish this fun on anyone.
eggbiscuit couldBworse
Posted
Hi Could Be,
Fun this is not, definitely. Add to that, I've developed tinnitus, not ringing but like a old manual typewriter in your ear. Can't sleep.
I understand the bike procedure. Am still going to the gym but being careful. Sitting is bad... As I told Patti, I've been spraying with a solution of spring water and baking soda and borax after going to the bathroom. Seems to help. Wondering if the acidity of the urine is/has been a factor? I read that in one of the medical journal articles I get. Some researchers say Lyme disease is implicated... Diet has not helped me at all. The gluten free, no sugar, low oxalate, etc.... does not seem to matter. My doctor also mentioned the anti-inflammatory diet but so many things they say to eat are things I can't eat. Have also read about/been taking supplements. Can't list them here (other than Vit D) or they will delete my post. Hope you're doing better. biscuit
couldBworse patti62276
Edited
Question: Is the baking soda/borax spray for a flair up ? to help dry blisters? Or an every day prevention aid?
patti62276 couldBworse
Edited
Hi! I believe it's suppose to be used as a Preventative Method. Eggbiscuit has used it daily after every trip to the bathroom and has had good results, hope you do too!