New to LS

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!

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 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!

How are you doing today? Any luck finding a way to reverse this Auto Immune Condition? I'm starting a juicing regimen daily, it should clean things out and maybe help, I pray!

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?

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. 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!

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.

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

Hi Patti,

Did you try the spray and has it helped? No, a 2:30 am flare-up is definitely not fun.

I have been pretty good for 3 weeks. (Unsure why) I'm getting some grief and push back from "friends" over this. Think I have lost them. This is a hard problem to have is it not?

Happy belated 4th. et al...

Hi eggbiscuit!

I didn't try the spray yet, need to get the borax! I will definitely try it though! 3 weeks is a pretty good run, that's awesome!

This is a difficult thing to have, so glad we can communicate through this forum! Can I ask why your friends are giving you some push back? It's not fun to deal with, I'm sure they don't realize how painful it is.

Hi Eggbiscuit!

I found the Yahoo Group, did you? If so, let's connect on it!

Hi Patti,

I found it but have been super busy at work. Perhaps this coming weekend I will get on there....

Bis

Got the borax at the grocery store. Still doing well on the pain issue. It could be the other stuff I'm taking for the other problem, not sure.

To answer your question about "friends," the bottom line is that they were not friends to begin with. When they have problems, I need to be there for them but I am "not allowed" to have any problems or need any support. I really don't exist in human form. I'm just a robot who works for everybody else....

Hi!

I've been having success soaking in Epson Salt Baths for 15-20 minutes every other day and applying Coconut Oil almost everytime I pee. I wear a dress at night after my shower, no panties at night, so far......I'm doing good. Just afraid for the next flare-up!

I'm sorry your friends are being inconsiderate! I do a lot for others too, but try and take some "me" time. I should have done this earlier in life but felt like I had to do or take care of everyone, I'm trying to adjust that now at age 66!

I'm here for you if you ever need support or connect with me on the Yahoo Group, the information there is outstanding and you can download files, photos, emails etc.

I hope today is a better day for you!

Hi Patti,

Been extra busy the last 2 weeks. So glad you are having some luck with the epsom salts. That's magnesium sulfate I think. Maybe this weekend I can get on the Yahoo group but, as I am a public figure, I do have to be careful.

best wishes. biscuit

Hi biscuit!

Thank you for your response! I hope your schedule slows down a little! The Yahoo Group does use your "real" name, so that might be too public for you. I'll check back periodically with you, keep in touch and I wish you all the best life can bring to you!

Stay Healthy & Happy - Patti

Hello Patti,

How have you been. Have had good days and bad days over here. How are you feeling? What are you doing for the LS these days? Still doing epsom salts?

I was at the nutrition store today to get castor oil because someone else said it had helped her but they didn't have any. I found this old post on traumeel. Do you know what that is? I looked it up and it is a homeopathic remedy. The ingredients are:

Botanical ingredients:

Arnica montana, radix (mountain arnica)

Calendula officinalis (marigold)

Hamamelis virginiana (witch hazel)

Millefolium (milfoil)

Belladonna (deadly nightshade)

Aconitum napellus (monkshood)

Chamomilla (chamomile)

Symphytum officinale (comfrey)

Bellis perennis (daisy)

Echinacea angustifolia (narrow-leafed cone flower)

Echinacea purpurea (purple cone flower)

Hypericum perforatum (St. John's wort)

Mineral ingredients:

Hepar sulphuris calcareum (calcium sulfide)

Injection Solution: Each 2.0 ml ampule contains as active ingredients: Hepar sulphuris calcareum 8X 200.0 µl; Belladonna 3X 20.0 µl; Calendula officinalis 3X 20.0 µl; Chamomilla 4X 20.0 µl; Millefolium 4X 20.0 µl; Aconitum napellus 3X 12.0 µl; Bellis perennis 3X 10.0 µl; Hypericum perforatum 3X 6.0 µl; Echinacea angustifolia 3X 5.0 µl; Echinacea purpurea 3X 5.0 µl; Arnica montana, radix 2X 2.0 µl; Hamamelis virginiana 2X 2.0 µl; Symphytum officinale 6X 2.0 µl. Each 2.0 ml ampule contains as an inactive ingredient: Sterile isotonic sodium chloride solution.

Worth a shot to look at. I will go again and see if there's a way I can participate on yahoo without using my real name. But Yahoo is Google and nothing about Google is private.

Hope you're well.

biscuit