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CONFUSED

Posted , 13 users are following.

Assilem7477
Assilem7477

Can someone explain treatment in really good detail?

How do I use Clob, Estrace, and cocunut oil???

For example can clob be mixed with coconut oil or can you put it right on after you rub the clob in for 90 sec?

I find people are giving good advice but they are leaving things out for example lots of people say use coconut oil but they don't say use organic cold-pressed extra virgin coconut oil which is what I think they really mean.....

I want to use estrace for my shrinking parts, but I'm guessing I need clob for the LS, and the area is so dry I need something else too but I don't know how to apply all this stuff.

My parts are disappearing quickly. I went 14 YEARS undiagnosed....I'm depressed. I want to stop it but so confused.....

0 likes, 17 replies

17 Replies

  • ann67814
    ann67814 Assilem7477

    Posted

    Hi Assilem, I don't know anything about Estrace, but I do use the Clob and Coconut oil. I am using them as maintenance and I now use a weaker steroid which I can

    use daily if I need. I do use it most days (at night) and I use the coconut oil in the morning and if I feel the need,I rinse after passing urine then use the coconut oil (I may do this every time I wee) Yes I use the Coconut oil bought in the food aisle as you details pressed extra virgin. I haven't seen any other. These days I rarely feel the need of the Clob itself as I can keep control with the weaker steroid and coconut oil. Good luck.

  • seginns
    seginns Assilem7477

    Posted

    I put my steroid cream on in the morning after I shower. Then I wait about 10 minutes or so to make sure it’s had some time to get absorbed, then I apply a drop or two of olive oil. (The extra virgin stuff that you can buy at the store. Coconut oil burned when I tried it.) I keep more oil in a 2 tablespoon salad dressing container that I can take with me and use it several times a day, usually after using the bathroom. 
  • Guppy007
    Guppy007 Assilem7477

    Posted

    Hi there.  I understand your confusion, but often people will have their own routine and over time they will find out what works best for them.  That said, I can give you my routine, how I do things..

    The Clob cream I only use in emergencies, like when my clitoris itches or white plaques of skin appear.  When you have symptoms like that it means you are flaring and you need to take action. So for example, in the morning I would  use 1 pearl sized amount of Clob carefully rubbed into the area. You need to use a hand mirror as you really want to focus on the problem area. I dont apply anything else at all after that because adding oils afterward will dilute the Clob undermining the treatment in my view.  At lunchtime, I may add a tiny bit of oil (like Coconut or emu oil) to keep things lubricated.  Any coconut oil you find in the store is fine...some women use olive oil!  Then, if my flare is severe I will want to apply the clob again early evening, remembering to rub it in well.  Just before I get into bed I could apply a bit of oil to stop fusing.  After a week of treatment with the Clob I put it away only to be used again in an emergency.  Then, other creams like Estrace can be used.  I have not used this cream but have heard its good.  Maybe you could use that once a day, perhaps first thing in the morning, followed by oil later on in the day. 

  • debi14820
    debi14820 Assilem7477

    Posted

    Hi, yes all these treatments are confusing. I will tell you how I use different products. I use Clobetasol twice a week when I'm NOT having a flare up (active symptoms). If I am having a flare up, then I use Clobetasol twice a day morning and night until symptoms disappear. I use the Estrace cream twice a week too. This will be forever for me. 90 minutes after I use Clobetasol, and rubbing in for 90 seconds. then I apply Emuaid First Aid cream for alleviating burning and for moisture. I also use Vagisil Natural Feel Internal Moisturizing Gel for moisture. It really works! I hope this helps. I do not use coconut oil, so I can't explain that part. Best wishes. This LS is a nasty thing isn't it? Oh BTW, I haven't had a flare up in 9 months.

    • Assilem7477
      Assilem7477 debi14820

      Posted

      I'm just starting this...so I think I will be using the Clob a lot. I go back to gyno tomorrow for biopsy results. My parts are starting to go missing....I dont think my dr. Knew where to biopsy! I think he did the wrong place. I have no white patches but constant burning and one missing labia minora. My estrogen levels were fine.

      Can I use Estrace while still using Clob 2x a day?

    • MapleSyrup
      MapleSyrup debi14820

      Posted

      I find that I tear and do damage when trying to gently massage the clob in (and same when I am putting coconut oil, basically any time anything touches down there I get cut).
    • debi14820
      debi14820 Assilem7477

      Posted

      Your doctor needs to biopsy the inside of one of your labia. If the LS is in your system, the test will be positive. But by your physical description, it sounds like LS. I use baking soda baths for easing discomfort. I use Estrace twice a week. You could apply the Estrace after dinner, then the Clobetasol at night. Be very gentle applying both. Usually the Estrace goes high in the vagina and the Clobetasol on the labia only. So they won't mix. I hope this helps you.

    • debi14820
      debi14820 MapleSyrup

      Posted

      I missed something in your above message.. To prevent testing you could just touch the Clobetasol and not rub it in. It still works. That's what I've been doing for 4 years

    • debi14820
      debi14820

      Posted

      Tearing. not testing. Sorry
  • Sedg
    Sedg Assilem7477

    Posted

    Hi Assilem 

    I truly hope things go well tomorrow sweetheart 

    I agree with Ann above reply and more or less follow same care 

    I no longer use Clobetasol /Dermovate as it proved to be too intensive a steroid to use regularly for me

    My consultant changed me to Betnovate ointment 6 months ago and I use that possibly twice a week at night and organic coconut oil during day. 

    I have had LS for 16 years and there have been lots of ups and downs but this is the best my vagina has been 😉 Less intereferring seems to work on this very fragile part of our womanliness   

    Also I try not to have sugar cakes no Chocolate etc and no dairy, lots room temperature water.

    I really think because those foods heat your body They help LS to thrive Ugly condition that it is 👹

    Let us know how you get on 🤗x

    • Assilem7477
      Assilem7477 Sedg

      Posted

      Thank you. I had to tell the Dr. what to test me for. He had heard of it but didnt think to test I guess bc of no white patches. I'm afraid I won't get accurate results bc there are no white patches.

      My symptoms are MONTHLY yeast infection symptoms for YEARS. I tried probiotics, antibiotics, etc. Every time I went to Dr. he always said yeast, so i gave up just thinking I was prone to the yeast infections.

      Then i started getting monthly UTI. Then, my vagina felt on FIRE and sometimes like there were small cuts. Always very RED. Never white patches....ugh.. Vagina feels so dry. One labia minora has melted into the majora...the other is tiny, almost gone...

      I've cried for 2 weeks straight....Its hard to look at my vagina...bc its changed..I felt like I did not want to go on anymore...I'm slowly coming to peroids of acceptance and then crying again. I just need the biopsy to be positive so I can get on with life, I guess.

      I've cut out almost all sugar. Eat very little dairy and no gluten going on 2.5 weeks. Hasnt helped that I notice.

    • debi14820
      debi14820 Assilem7477

      Posted

      Hi. I'm sorry you are having so much grief over this. I think you ought to find a Gyn specialist if you have any in your area. I use Clobetasol twice a week during "remission" and twice a day when I'm having a flare up. Maybe you need to ask for Estrace to help with dryness. Also Vagisil Complete Moisturizer helps with dryness. You may also have a bacterial infection. That can be recurring and must be treated with vaginal antibacterial meds. I have Vicodin when I have severe pain. I also use Emuaid First Aid cream. Yes it's expensive, but it's worth it. Please get another doctor to help you. They can refer you to a pain clinic too which will help you. Don't give up. There are answers and treatments that help. Please keep in touch with me. Best wishes.

    • debi14820
      debi14820

      Posted

      Also, your architecture (labia) sounds like LS to me. I have similar condition. The Estrace (estrogen cream) has really helped me. You can also try warm baths with baking soda. That really helps. Apple Cider Vinegar also helps prevent UTIs and vaginal infections. I hope this helps you. I care!
    • Assilem7477
      Assilem7477 debi14820

      Posted

      Thanks Debi, I need emotional support plus I'm afraid to use all the creams/lotions wrong. I'm 37. I know there are younger people with this but I love my husband and still want to be intimate..haven't in a month...2 to 3 days after sex I get a terrible burning sensation or UTI symptoms....no matter what I do! I even saw a urologist that gave me antibiotics to take after sex....

      I'm exhausted bc I cant stop focusing on LS. My dr. Said I also had bacterial vaginosis and gave me more antibiotics....These antibiotics are wreaking havoc on my system but I dont know what else to do.

      I take Renew Life Ultimate Vaginal Flora $50 billion daily....I also take a mixed centrum one a day vitamin...but may need to get extra vitamin d...

      I'm too depressed, but trying to accept it. My entire life has changed. For example, my husbamd and I went out on a date to a comedy show. I couldn't get any snacks even. I have to eat b4 going anywhere. The diet alone is harsh, but the constant being uncomfortable/burning and feeling dry....sucks. Plus the missing body parts....those just break my heart...I blame myself bc the dr. Said yeast so many times I just started treating with Monistat myself and quit going. It never occured to me it could be something else until the missing parts....

    • MapleSyrup
      MapleSyrup Assilem7477

      Posted

      I'm 6 years younger than you and going through the same thing. I feel like my life is over and I'm so sad for my marriage or what it could become. For the last week I have been using the clob, applying canola or coconut oil a few times a day, and every other day soaking in a few inches of water with 1/2 c (I guess?) baking soda. I keep staring at myself and mad that I should have kept an eye on myself and asked right away when there was a change... but now I don't have a labia minora sad  the next step is to get dilalators because I want to have sex with my husband still. 

    • debi14820
      debi14820 Assilem7477

      Posted

      Yes this LS is a very hard road to be on. I get very discouraged too. I've had BV myself several times. I soak twice a day in very warm water with 2 cups of apple cider vinegar. If I were you I'd seek a doctor that specializes in vulvar disorders. It's imperative that you get the best doctor you can. We all use different products for treatment and comfort. When you are having active symptoms try baking soda baths. To prevent infection, use apple cider vinegar. Alternate between them to treat both LS and infections. I do something fun every day to keep my mood Happy. Take care. Mine is hurting today.

    • Assilem7477
      Assilem7477 MapleSyrup

      Posted

      Me too! I've cries for 2 weeks straight. I constantly have yeast or bacterial vaginosis or UTI too.

      A few months ago I looked at my labia and thought it looked small, but I jist thought I was crazy. I didnt do anything about it. Now its gone. The other one is so tiny. I just cry. If I'm 37 and like this what will I be like when I'm older!

      I've only been able to have sex with the hubby about 3 times a month due to infections....then I take antibiotics which cause more infections....I'm so sad! Are you in the states?

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