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!
hi patti
I am newly diagnosed 3 weeks ago and my gp told me nothing this site has really helped me!
here is some of the things I have done and it really helps. I switched my detergent to one with no soaps perfumes or added bleach and its non bio but I still also do a rinse with plain water afterwards. I use an emoilent bath in the bath a few drops soak for twenty minutes and i wash my hair over the sink afterwards, when i have a bad flare up i put baking soda in the bath with just water. apply your clobestol after your soak of either plain or baking soda bath rub in for at least 90 seconds and leave it for a few mins before you put your clothes on. iv cut down majorly on sugar which I think is now starting to help. try not to stress this makes mine worse also olive oil or coconut oil after everytime you pee this softens the area and acts as a barrier you can also use vaseline.
xx
Hi Patti,
I am 61 and like you, very active. Drs have pretty much told me there's no cure, no hope but I don't accept that. I am working on figuring out how my immune system got turned against me as the drs do think it is auto-immune and that ran in my family. Does it run in yours? Clob is the only topical I have that helps except maybe Voltaren gel (commonly used for arthritis) Lidocaine does not help. Have you tried that? Only use soap and hand lotions with no parabens or pthalates and staying off of wheat did not help me. I am trying to stay off of oxalate foods to see if that helps. Collagen powder did not seem to help nor did a whole range of different anti-oxidants. Nancy K.B. on here has a big regimen that she says works for her if you can find it. They've changed this site and now old posts are hard to find. Welcome to PM me if you can figure out how to do that. Best. EB.
Hi Raxherl49142,
Thank you for responding, I was wondering if this forum was working! I have changed my diet too, low carbs, no white flour, low sugar and low alcohol. I also changed my laundry soap to a Perfume Free laundry soap, plus add a rinse after each cycle. I have been applying Coconut oil after I pee, alternate it with Pure Olive Oil Gel and Essential Turmeric Oil. I do have a Clobetasol Prescription as well, but was panicking when it wasn't working. I started using it again, my symptoms are getting better! Usually if I feel symptoms starting up, I can nip it with the Clobetasol, so when it wasn't working, I Googled LS and found this forum. I tried to PM and couldn't figure out how to do it, PM me if you can figure it out! Thanks again for responding, it truly helps communicating with others who deal with LS!
Hi eggbiscuit,
Thank you for responding! I don't know anyone in my family (I'm one of 9) who has an auto-immune condition. They have other issues, high blood pressure etc., nothing like this. Guess I get to be the first! I did read Nancy's Posts and purchased some of the items to try, I do have Voltaren for arthritis in my hands, I'll remember to try it! I haven't tried Lidocaine, although I would try anything to relieve the pain! I added daily Probiotics to my vitamins, figured it can't hurt! I do add Keto Collagen to my coffee in the morning, along with Coconut Oil, eat a pretty clean diet too! Luckily my symptoms have reduced, not in as much pain as last week! I was doing everything possible including "icing" to get relief! I hope you're doing well, thanks again for responding! :) I tried to PM you, couldn't figure it out, you're welcome to PM me.
Hi Patti,
I do not think we can private message each other any more. I've looked hard and guess I will write to the moderator or grand pooh-bah or who ever is running this show. May I ask where is your pain? Is it burning, soreness or something else? Mine is on the perineum and on the side there. Not really white but not quite the color it should be. I see these pictures of women's even toned skin on the perineum as if it was on their arm or leg and I'm thinking who looks like that down there? Lots of women say coming off of hormone replacement therapy is when their symptoms began. Since I have never been on HRT, that's not me but I have been super-stressed for many years. Did you take HRT? Did your endocrinologist give you any other advice? My gyn MD from last week said basically use the clob and that's it. Live your life. I thought, well, crap. Have you tried Vitamin B complex? If so, is it methylcobalamin or cyanocobalamin for the B12?
I wrote to the moderator about the private message service but have not heard back from them about it....Will post if I hear.
Hi there!
You can ask me anything! My pain this time, is on the inside of my left labia. When I pee, it felt like cutting glass on that side only. Both labia's are discolored with a white tint. The first time I saw the color change, I was shocked! I never dreamed it would change colors like this! I had an emergency complete hysterectomy in 2003, been on HRT since. Just recently did we cut my estradiol .5MG's in half because a blood test showed my estrogen level was in the 1000's! so I am only taking half a pill now until I get my estrogen level re-tested.
I used Clob, Coconut Oil, Essential Turmeric Oil and Aloe Vera! My poor vagina is probably so confused! It is better, thank goodness, not ready to have sex yet! I do take B-12 everyday, it's cyanocobalamin. I also take Biotin 500mcg, for hair, nails and skin. It was recommended by Dr. Dubrow's Wife, Heather, she said it helps our hair and skin as we age. I try to keep my stress level low, it's hard to do since I still work, am married, have Adult Children and Grand-kids, so life is full! I try to participate in Yoga every morning for 10-20 minutes, to help me "center" mself. I also exercise 5 times a week! Both my Endo Doctor and Dermatologist said to use the prescription Colb. The Dermo suggested I use it twice a day for 30 days, then once a day, the next 30 days, then once every other day for the next 30 days, after that, she said the symptoms should be completely gone, and they were! This flare up didn't seem affected by Clob, so that's when I started Googling for other suggestions. I hope this helps you in some way, I enjoy chatting with you!
Hi Patti, That clob regimen is pretty standard from all I've heard and read. I think we all know now how stress can exacerbate most any physical problem. My pain is central, on the perineum and I cannot sit down with out a lot of discomfort so I have to improvise. I still work also and go to the gym but both are a struggle. It seems the PM service is out of order. The moderator has not responded to me. They will not let us put our email here, directly at least but here it is, even if in a cryptological form. I hope you will figure it out. "sma2006" at (the sign for at) juno dot comIt's an old email but still works. My doctor hasn't said much other than it's an autoimmune disease and there's little she can do about it. Then she said, "well, you're a very well read patient so I will do anything you want me to do." I thought well if I knew that I wouldn't need to come here.....Hope to hear from you. Eggbiscuit.
Hi eggbiscuit,
I replied to your email on Tuesday 1015 UK time with:
An email was sent out with the message below. Unfortunately, we do not yet have a timescale for the reinstatement of the Messaging service. There was a problem with a few users abusing the message system in a way that breached our T&Cs so we are making changes to prevent this in future.
Email sent - Private messages have been temporarily disabled. While we realise this will inconvenience a number of our users, we regrettably must remove this functionality while some critical issues are addressed. You will not be able to send or view any private messages on Patient.info until further notice.
Please do not try and post email addresses in the forums, whether in full or broken down, they will just be removed.
Regards,
Alan
Hi Patti, The moderator will not allow anyone to post email addresses and they have disabled the PM service so we're limited to this. Tried to get the Essential Turmeric Oil but it is not available here. Did you buy yours online? I bought some liquid turmeric and aloe to mix. Figured if I didn't spread it on skin, I could always take it. What we would really all like is to reverse the auto-immunity we seem to be suffering from. On to that challenge...
Hi Eggbiscuit!
Gosh, I'm so sorry to hear it's hard for you to sit, I bet you have tried sitting on a Gel Pad or something similar? When my flare up was in full swing, I didn't even have the desire to exercise, it hurt just to walk or sit. I hope you get some relief soon, exercising keeps us sane! The only thing I can think of trying that I haven't mentioned, is going to a "Functional Doctor." They are licensed MD's but don't practice Western Medical, they think outside the box and look for solutions. I thought about consulting with a Nutritionist too, but I think I've read so much about a diet for our condition, not sure it would help. I did purchase a book written by a doctor who was diagnosed with this Auto Immune Disease, she discusses foods to avoid, supplements etc. I'm a little skeptical, because she sells the Supplements she mentions. She does explain what she went through after her diagnosis, foods she avoided, so it was good reading to me. Her name is Dr. Amy Meyers, if you'd like to look her up and see if there's any information that may help you, that you haven't read already. Keep me posted! Take Care - Patti
Hi Patti, The moderator is deleting all my posts to you and I don't know why. I guess they just don't want information to be shared...
Everytime I put in the name of a drug, a supplement or a book, they delete it. Moderator- can you tell me why you are deleting posts with book titles in them when other women's posts DO have book titles in them? This is not fair.
eggbiscuit,
I'm sorry the Moderator is deleting your posts, I don't understand it either! I thought this forum is for women to share their experiences with LS and help each other find their way through it! Maybe the Moderator will respond to you.
Trying again. No response from moderator. All I did was type the names of several books I've read. I won't do it again, I guess. But, one book explained how all the chemicals in foods and lotions are causing auto-immune problems. Henceforth I have removed much of these from my diet and life and gone to more natural foods and soaps, lotions etc... Am unsure that is what is responsible for the lower pain level right now but perhaps it is the baking soda spray I've been using. I am told there is a yahoo group and maybe I will explore that. Do you know about that one?
Hi! That sounds interesting about the chemicals, I do believe it! I eat as fresh as I possibly can, changed my laundry soap, bath soap, rinse really good after I shampoo my hair and I'm feeling better, not 100% but better. I haven't heard about a Baking Soda Spray, but I will look into it! I'm interested in the Yahoo Group, please let me know if you locate it.
The spray is just a spray bottle with about 8 oz of spring (not tap) water and about 1 teaspoon of baking soda with a pinch (maybe 1/8 tsp) of borax powder in it. Shake till dissolved. Spray after each bathroom visit. Maybe it's help. Can't be sure as, like you, I am doing other things. If I find the group I'll try to post instructions here. Best. biscuit
eggbiscuit,
Happy 4th of July! I had a flare up last night at 2:30 in the morning, not fun! Thank you for sending me the baking soda mixture, I'll give it a try! I hope today is a good day for you! Take Care of yourself! Patti
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