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**Update** Saw Vulvular Specialist Finally! Good News and bad news....

Posted , 12 users are following.

karen23320
karen23320

HI All- Diagnosed JUNE 6, finally saw VULVULAR specialist here in USA- TEXAS.

First let me say she is wonderful! very knowledgeable, calm, good listener, explained everything in detail. She believes it was always there, waiting to rear its ugly head and my bout with the flu, constant coughing, peeing on myself, destroyed the integrity of my skin and allowed the LS TO REAR its ugly head. SAID it can be a virus, trauma to the area ( sexual abuse or rough sex), an injury to the area from riding a bike or other injury that gives the LS or other autoimmune disease a chance to surface.

GOOD news: She said the autoimmune protocol I am following with regard to SUPPLEMENTS, ( thx NANCY B), diet ( limiting wheat and sugar) is right on point. She also added that I do not need to be as militant about the low oxalates as I have been as she believes I have a genetic pre- disposition for kidney stones ( FAMILY history with MOM, DAD and 3/6 siblings having them). Not to go crazy on oxalates, but can add back in a moderate amount of my favorites like spinach, sweet potatoes, and multigrain bread/ nuts- Once a week is fine.

The BAD NEWS- I am not in remission, I am asymptomatic- I hv no symptoms of pain or itch, can wear pants, feel fine, can enjoy sex, but I DO HAVE ACTIVE DISEASE!☹☹☹

She wants me to continue CLOB 2x a day until I see her again in 6 weeks!

She said due to my age (47), the fact that I still hv my period every 28 days and have plenty of hormones, the disease will continue to progress without the CLOB. She wants me to rub my testosterone cream right on my clitoral area, also rub CLOB on it two times a day and lubricate entire vulva with EMUAID OR VMAGIC everyday. Otherwise she said clitoris may completely fuse over and I may hv no sensation there at all☹.

I hv been so happy with no symptoms and ability to get on with my daily life, that this was a real bummer to me.

I will do as she asks and follow her instructions. I will also persue allergy testing for gluten/ dairy sensitivities, and other possible food triggers.

I had her run more thyroid tests and re- check testosterone levels before I see her again to see how much it is penetrating the dermis ( to help libido).

Glad I saw her, glad to be going back in 6 weeks and glad it is covered by insurance!

Gotta keep on doing my best to handle this and find out where the weak link is in my immune system.

0 likes, 68 replies

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  • janie27576
    janie27576 karen23320

    Posted

    hey nancy that is great, it gives you a sign of relief, thats how i felt, but my Dr. didnt tell me if my was on remission or not, i wish my insurance would cover this Dr. i am happy for you and i do use clob 2 x a wk not 2x a day but i guess it depends on drs. i am just getting better on this diverticulis and i am afraid to take my vitamins since i have been on liquids and i hope my ls wont flare up.. janie

  • beverly52803
    beverly52803 karen23320

    Posted

    karen, glad that she has given you peace of mind! The gyn that I've seen is also very calm and approachable. It makes a difference. (Just wish her staff were a bit more organized.)

    I go for another follow up tomorrow morning if anyone has any unanswered questions! I am making a list.

    Am curious how it is that you are using a testosterone cream. Don't remember reading about anyone using that, and you say you have "plenty of hormones". I am using estrogen cream for atrophy. Gyn said my LS was due to low estrogen (as demonstrated by AV, I guess). Did she ever explain why she prescribed it...or did another doc?

    I had my annual blood panel with GP, but don't know if he checks for hormones (just remembered I didn't get a printout). Gyns tested for them at menopause. I did think to ask for extra thyroid and more accurate sugars which he said were fine.

    Did she mention what kind of virus would cause LS? Personally I have had no trauma. Wonder if measles could be involved. Had that as an adult. Thought I would die!

    Glad you can eat the oxalates. I remember you listing all the foods you couldn't eat and knew I would have a real hard time sticking to that. I can't do dairy and that is enough of a restriction.

    Is there any theory as to what brings on a return of symptoms?

    • karen23320
      karen23320 beverly52803

      Posted

      She said any kind of virus can lead LS - hat is already hidden in the body- to bloom. I have had mono several times and pneumonia multiple times, so she said it could hv manifested anytime. In my case probably the flu last JANUARY.

      I was prescribed testosterone cream by a different OB as a result of my blood tests showing plenty of estrogen, but 2.7 Testosterone ( normal range is 10-60 depending on age). I had no libido, no energy and was gaining weight even though I WAS AFRAID to eat anything!

      I am a singer ( High Soprano) and hv to be careful not to change my voice - so no BIOTENE.

      Specialist has checked my levels again and I will hv results in 6 weeks at next appt.

  • kc75268
    kc75268 karen23320

    Posted

    thank you for is ... just diagnosed a week ago

    using CLOB now

    feeling helpless want a good doctor

    i had some hives come up didn't know if that was a reaction to CLOB ?!

    THANK YOU

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