vulva specilist

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ok ladies, i went to see a vulva specialist and she was real nice and sat with me and listen to what i had to say, checked me and told me and my husband that i wasnt too bad on my LS. to use and she showed me how to apply the Clob, and to put Aquafor after so that it will protect the Clob and protect the area at the same time...i told her i had just started soaking in Borax and she said to stop , but i think i will still be doing that cause it helps with the itching which i have sometimes not all the time...she also sd my fusing will not get unfuse which i have heard that it can happen...what do you all think on that? want s to see me in 4 wks...made me feel better cause she said theres other options if i was really bad but not at this time.. now i have to go fight with my insurance to give me a referall cause it was 360.00...ouch.. janie

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  • Posted

    Hi Janie, what have you really learned from paying all that money?

    Not much, in fact she's given you bad advice as the fusing can be reversed or at least halted for some, as many women here have testified. Also I have never heard of anyone applying the Clob and then putting another cream on top...I'm not convinced about that at all. Re borax, this is something that many women believe works for them, and when you see fused skin become unfused then that is all the proof that you need.

    What she did was sit with you and your husband and reassure you that everything is okay and that you have nothing to worry about. Maybe thats what you needed to hear right now but I wouldnt be going back again in four weeks time to pay the same 360.00.

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    • Posted

      hi guppy007, well i felt better then i did with the gyn i had seen before cause they just wouldnt listen to me and i wanted a specialist that has seen alot of LS patients and could tell me how my skin was down there since when i first got diagnosed didnt tell me how to apply the clob and i used to smear it all over and was scared i had really thin skin, yes i know its alot of money but i needed to hear some conforting words from someone who knows more then the idiots i had seen... and show me exactly how to apply and where and with a mirror and show where i had the LS. on the after the clob use was to put aquafor vaseline to protect the area is what she said. i am still soakin in hopes that my fusing will unfuse, and tonight will be my second application on the clob, still scared it will backfire on me and get a flare up , im hopeing it wont... i will see and i understand guppy what you are saying and thank you for your say...janie

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    • Posted

      Hi Janie, I am happy to hear that you felt it was a worthwhile trip to see your consultant and that you are feeling much happier. You are correct in that some women aren't shown how and where to apply the cream and so that in itself is important. Anyway, I'm glad your feeling a bit better.

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  • Posted

    Hi Janie~ glad you had someone who listened and such . Also glad you'll keep on with borax as it is your body and you know best of all what helps. There are other products to moisturize with too - seems LS likes a rotation - when one stops working another will kind of thing I use emu oil, coconut oil and emuaid regular strength mostly.

    Good job!

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  • Posted

    Hi Janie~ glad you had someone who listened and such . Also glad you'll keep on with borax as it is your body and you know best of all what helps. There are other products to moisturize with too - seems LS likes a rotation - when one stops working another will kind of thing I use emu oil, coconut oil and emuaid regular strength mostly.

    Good job!

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  • Posted

    Janie, in my case LS responded to a combo cream of Clotrimazole and a steroid. Clotrimazole is an antifungal. It kills the itch too. My ObGyn prescribed it to me after I asked for something not as strong as Clob. Then, I went on an antifungal diet plus herbals. Oregano oil capsules work; there are stronger herbals, too. I also cut out sugar and wheat bread, anything made with yeast. It is very important to lessen your cortisol, so I did nediation and 15 min exercises a day. My LS is gone now. For the fusing, the antifungal med helped a little, and then I switched to Julva cream, which helped me unfuse completely. Also, specific probiotics, such as those in Femdophilus - L rhamnosus and L reuteri help with vaginal health. If I feel any tiny itch now, I take the probiotics, drink cranberry juice and/or oregano oil capsules.

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    • Posted

      I had my labia minora fuse to the labia majora on one side of the vulva only. The skin on that side was redder for the longest time, but is now almost the sane color as the other side as I have addressed my cortisol and fungal issues. My hormones seem to be getting more balanced. a quick search if your diagnosis yielded a few pages describing myofascial PT approaches that work. I have a referral for a pelvic physical therapist by a functional ObGyn, but have not yet called to schedule an appointment. There is hope!

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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    • Posted

      Vita,

      My gyn has me mixing the estradiol cream with yeast cream (Diflucan). I wonder if that is the equivalent of Clotrimazole .

      I looked up oregano oil capsules which seem to be recommended for UTIs. Is that why you took them or for the LS? Also, the Julva cream info says nothing about LS, and at $70 an ounce is more costly that my compounded etsradiol cream. But I suppose by using such a small amount it would last. Did anyone suggest that to you for the LS?

      What did your gyn think about DHEA as an ingredient? I thought docs shied away from that, or maybe that was quite a while back and its more accepted now(?)

      I used an essential oil blend that a woman with LS concocted and that burned too much for me to use. I'm assuming this does not burn you(?)

      I will ask my gyn about the DHEA when I see her. A husband of a woman with menoapusal issues on another thread said he and his wife both take testosterone and are very pleased with the outcome. So many different theories. It's hard to keep up.

      I took women's probiotics for a month. Nothing changed re the fleeting inner itch.

      Thanks

      B.

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    • Posted

      Hi, I will find the antifungal cream and will let you know exactly what it says on the label. It started the unfusing, but the red stripe was there after the 2 weeks I used it (decided to stop after 2 weeks of use becaue of the steroid part), and did not heal for months until I got to use the Julva and also got a great vacation, so my cortisol went down. I also applied for at least a year, while the LS was raging, lots of oils and essential oils. I was happy with hemp oil for a while as a moisturizer. I even applied manuka honey straight on - it is a powerful anti-inflammatory. Essential oils would irritate me, with the exception of emu with a little frankinsence. Baking soda got my white patches to proliferate, but I might have made a thicker solution. It was a year of crazy experimentation, but the itch was horrible, and no oils would cure it fully, so I set out to lose weight after reading on a forum about LS diet. I stopped sugar and white bread, and in 3 months lost 30 pounds. While doing it, I used the antifungal cream that the doctor finally prescribed me after I complained of the Clob. Six months later, I was told about Julva and the probiotics, and also was put on B vitamins and antifungal herbals by the functional nutritionist. Julva also helped me restore the skin around the opening of the vagina, which was tearing and getting thinner. I knew I had Candida then, because I did the OATS functional urine test, and it showed Candida overgrowth. I mentioned Julva to my ObGyn, and he said DHEA is safe, and I should keep using it if it works. The Julva was recommended to me by a functional nutritionist I worked with to address any potential metabolic issues. I do believe hormones also play a role in LS. My testosterone is very low, and I was prescribed a cream, but I am not using it. I don't think it is wise to use any hormonal cream unless you know how you metabolize your hormones, and that would be a very expensive test for me ($400). In Europe, testosterone is never prescribed to women, so I decided to instead continue with the DHEA, which my American ObGyn said it was OK. It is expensive, but you can use it in small quantities, and it will last you for months, and you don't have to use it all the time. I use it sparingly, but also my LS is in remission now. However, if I eat sugar for a few days, I get the night itch, so I need to keep drinking cranberry juice or take oregano oil capsules, or both, and apply a little Julva or emu for moisture. We have to work on both the external and internal systems to keep our bodies functioning.

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    • Posted

      Vita, sounds like your cream was premixed. I am mixing a dab of compounded estradiol cream with a dab of diflucan. I think replacing the diflucan with metrogel ( flagyl) would be a better combo as I responded very well to it when taken in pill form. Itch stopped immediately, but later returned.

      Not sure what you mean by a red stripe. I had a faint white line on the buttocks which is gone now. Nothing red.

      According to my gyn my LS was caused by lack of estrogen. Was already aware of AV for 3 years, but it caused no problems so I avoided the hormone cream. Now I have no choice.

      I will definitely discuss the Julva with the gyn. She and I never discussed testosterone, though I know some women do use it. It was enough of a leap for me to start with estrogen.

      Re DHEA it is "produced naturally by the adrenal glands and is converted by the body into testosterone and other sex hormones" (according to verywellhealth). I had heard of it in the past as a treatment for low energy & libido.

      I haven't eaten white bread in over 30 years and eat little sugar, so that can't be my issue (though I would love to lose 10 lbs!)

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  • Posted

    janie, did the specialist say specifically why you shouldn't use the Borax? Did she think it would cause any harm? if you plan on continuing to use it she must not have been very convincing. When I mentioned borax to my gyn she said things like that may soothe, but they will not affect the LS; only a steroid will do that. There are women who post here that don't agree. I am just telling you what my gyn said. You have to make your own informed decisions.

    I think it's important that we know each other's history in order to make comparisons. I was diagnosed 5 months ago. I also have atrophic vaginitis (AV) which is not that uncommon after menopause. In my case, the gyn said the lack of estrogen that caused the AV has also caused the LS. I went through menopause about 20 years ago, so it has taken a while for these issues to develop. I see no other choice now than to use both the hormone cream and the steroid. The steroid prescribed for me is weaker than the Clob most of you use. I assume it's because the LS was not very advanced.

    Have you been through menopause or had a hysterectomy? Any reason your estrogen might be low? Has any doctor checked your levels?

    If you are in the US don't you have to get a referral before you see a specialist? Might be difficult to be reimbursed after the fact, but I have never tried. Am always told I need a referral, but not for a gyn.

    I'm glad this doctor gave you peace of mind, which you had said you were after. Although it was certainly shocking for me to get the LS diagnosis, I feel it's better that I know what's going on and can do whatever will keep it from progressing if possible.

    .

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    • Posted

      hi beverly, sorry for the late response, well she just sd not to soak, just to use the clob and after to put aquafor to protect the skin to keep it moist...to me i got it that i didnt need to soak at all with nothing. on my hormones i dont really understand it and i had that checked but the dr. just sends me my results on my email , just read in report to take b12 and d3 until i see her again. cause it read on there that my thyroid nodule was enlarge and i showed that to the speciliast and she sd to call that D.r and tell her that i wanted a biospy as soon as possible instead of waiting to see her again in 6 months , so i am callin her today on that. but on the hormones it says i have 15.3mlu/ml and testosterone serum is 36ng. what do you think? an i havent had a hysterectomy...let my know what you think? i am barely learning all this and its hard cause i forget very fast ...also my breast is hurting me and i went already and dr tells me my biospy and ultrasound was good .. want to do another ultrasound in 6 mos. but i just dont understand why it hurts aroung my nipple area... have you had that janie

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    • Posted

      Janie,

      I am no expert on any of this either. I just read as much as I can process. I did ask for a thyroid check at my last physical because I know thyroid issues can lead to autoimmune problems which LS is.

      GP says it is fine.

      Can't imagine why the doc would give you hormone levels and expect you to figure them out. Assume they are fine if she said nothing, but I would call to confirm that. Don't let anything fall through the cracks.

      I just had to have two versions of mammograms plus an ultrasound, but have no discomfort. But then I barely felt any discomfort before finding out I have LS! Did you ask the doc why you would be having breast discomfort?

      Hope your thyroid situation is OK. I know problems can be corrected with meds, I believe people even have them removed and just use meds, so try to relax about that.

      I take D3, but keep forgetting to buy B12. Thanks for the reminder!

      Take care.

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    • Posted

      Janie, can you have a second opinion regarding your breast if that pain doesnt go away. Anything to do with your breast needs to be carefully watched I would have thought. What kind of pain is it? and how long does it last for?

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    • Posted

      Janie, did you check your insulin and blood sugar, too? Thyroid problems are often somehow related to insulin/blood sugar problems, diet and the cortisol curve. LS can spin you into a frenzy with the itch and burn, and cuts due to thinning skin. I feel that often doctors treat symptoms rather than root cause. The body will make with priority cortisol, so if you are chronically stressed, all your other hormones will go down. My testosterone is even less than yours at 15 last year before I got to deal with my metabolic issues. Haven't retested yet. Hope it is up with everything I do. Try to stabilize adrenals and blood sugar, and see what's going on with your thyroid, but research diet for thyroid also! I just read that a lot of people are deficient in iodine and selenium, and get thyroid issues. Vit D and the B vitamins (all of them) are great for your adrenals and liver, so you can metabolise the hormones better. Magnesium is awesome, too. I take adaptogenic herbs if I feel wired, such as holy basil. Maca is rich in minerals and helps with hormones. I am so sorry so many of us are going through this often unassisted.

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    • Posted

      Vita,

      Do you ever actually feel any different when you take supplements?

      I don't notice any difference at all. Have been on & off them for years.

      Out of desperation I'm starting to resume taking some again.

      But wasn't there something recently about discouraging calcium supplements? I believe we are supposed to be eating calcium in particular through food. And we excrete a lot so that means a lot of food with calcium

      Then there's weight bearing exercise. I keep telling myself I will do the nautilus machines, but end up on the treadmill or in the pool. Guess it's better than nothing.

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    • Posted

      Beverly: I too promise myself I will do weightbearing exersise and then end up swimming or pilates as I prefer them!

      I believe I have had benefit from supplements D3, magnesium, K2, and all the Bs. I have no idea if I was deficient in any but after reading Nancy's 'list' and hearing from a doctor that all women after menopause should take D, I thought I would try. I feel more 'awake' and my LS is 'quiet' at the moment, after having had a rapid shrinkage of architecture a few months ago. This of course could be to do with lifestyle and lack of stress at this time and nothing to do with supplements though. Who ever knows with LS?

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    • Posted

      hi vita, dont know about my insulin and blood sugars but i will find out about that, its that the Dr. s just email the results without letting me know what all that means but i am gonna call and set up another appt. with her to let me know and also tell her i would like a biospy on my thyroid. i am taking vB12 also K and Magnesium..all this i learn cause of Nancy here..also probiotics...I will get the other Bs.. i think all this vitamins do help with the LS..janie

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    • Posted

      Guppy, didnt think i needed a second opinion since i had a biospy and then like a couple on months ago i had a mamogram and ultrasound, then i went back to talk to her and she saw the report on it and sd not to be alarm that all was good on the ultrasound and that sometimes it can be the milk ducts or something like that. that i will get another ultrasound in a few months...i will call and get them to do that earlier then in a few months from now. my breast hurts in the nipple area , and i cant put pressure on it ...i also felt a heat wave come in that area only...i feel like if i tell her she will think i am crazy . janie.. i feel like i am the only one feeling like this. thanks for listenin to my problems guppy

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