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Fusing now

Posted , 10 users are following.

helen99763
helen99763

After two or three months of relatively calm LS symptoms, now a few days of sharper stinging at back of vaginal opening.  Felt like maybe some sort of ulcer-as all raised area to the touch.  On examining with light and magnifying mirror I was shocked to see    obvious fusing taking place across perineal area just behind vaginal opening - sort of like a bridge of tissue  across so that when wiping it catches.  I will try to see gyno ASAP.  but so discouraging as it has formed so quickly in spite of my steadfast adherence to the club and coconut oil routine, baking soda soaks and sprays.

thos is an insidious disease.

0 likes, 37 replies

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  • hanny32508
    hanny32508 helen99763

    Posted

    MMmm, doesn't sound good.  How's your stress level?  Are you consuming a lot of sugar?  Are you eating enough fresh vegies?  Perhaps an pH Balance Support is needed.  It's called AlkaCare pH.  
    • helen99763
      helen99763 hanny32508

      Posted

      Hi Hanny - was hoping to hear your thoughts. No stresses that I can think of - retired life style, loads of veggies, don't have a sweet tooth as I much prefer savoury for the occasional treat.  As LS affects my anal area which results in fissures, I follow a diet which keeps the bowels working well I.e. eat greens like kale spinach etc. Probiotic supplements really seem to help with regularity. I hope they are not causing this sudden change.

      o remember one forum member here mentioning she had noticed that most LS sufferers developed some sort of 'ridge' or 'bridge' in the perineum-do you remember reading that?  Wonder. If this is what she was speaking of. Thanks for your concern - very open to suggestions.  Also very discouraged at this point.  I know you have been there and others too.

    • hanny32508
      hanny32508 helen99763

      Posted

      Seems you do everything right.  I know about that bridge and wonder whether some bit of that is 'as it should be'.  There is a bit left there with me as well.  

      Another suggestion, especially around the anus is spraying Witch hazel.  Renee is using that and I have used something similar once when that area was troubling me.  

      Yet another thought - LS likes variety.  What I do so now and then is using seasalt, epsom salt baths.  It helps.  And then I do bicarbonate/baking soda again.  The seasalt,epsom salt combo makes it feel 'cleaned' of something.  I have no explanation other than that LS likes variety.  

       

    • helen99763
      helen99763 hanny32508

      Posted

      Thanks -will try the variety regime and the witch hazel.  when I study the area today, I think it may be not so much a bridge as perhaps a tiny area opened up just behind the rim of the vaginal opening.  There is slight but obvious bleeding there now.  Will be on the phone to my Gyne morrow. 
    • helen99763
      helen99763 hanny32508

      Posted

      Of course I mean't to say, "I have a gynaecologist and am seen annually in a clinic that checks for vulvar cancer."

      Could someone please tell me the main ingredients in 1) Advantan,2)Dermese, and 3) 'double base gel' that I see suggested?

      Maybe I can find equivalents 

      Thanks.

  • kathleen65757
    kathleen65757 helen99763

    Posted

    Helen, you have not mentioned an ointment such as Advantan fatty ointment. I am guessing you are using one? I have to be very vigilant with my ointment to keep any additional fusion at bay. I also use dermeze for moisturising. Latest specialist to check it said not to wet the area more than twice a day. Hope you have good people looking after it for you.
    • dani2590
      dani2590 kathleen65757

      Posted

      Hi Kathleen,

      I've started Advantan fatty ointment. I was on Diprosone OV before this daily for 2 months. Now my doctor wants me using the Advantan daily for a further 2 months before bed before seeing her again in June. It's been almost 4 weeks. I'm aware that Advantan is the next class down to the very potent steroids. How often do you use it and were you ever on the very potent steroids?

    • kathleen65757
      kathleen65757 dani2590

      Posted

      I like the advantan fatty ointment and many years ago I was on the other ones. The ointment is better absorbed apparently hence the preference. At the moment I am five days on and two off each week. I believe it is a good choice.
    • helen99763
      helen99763 kathleen65757

      Posted

      Thanks,Kathleen, Dani, and all.  All advice welcome.  I use coconut oil only as a moisturizer.  Am no. t familiar with Avantan nor dermeze here in Canada.  Re 'not wetting the area' - did she mean as in washing?  It is impossible to keep the area immediately back of vaginal opening dry.  Before this flare-up, I noticed the area more moist than usual. If have,a fine and attend an   annual Vulbal clinic where they check for cancer.
    • kathleen65757
      kathleen65757 helen99763

      Posted

      I mentioned I had a bidet and could keep the area clean and she said not to overdo it. Twice daily at most. I attend a special clinic at the Mercy hospital in Melbourne two or three times a year.
  • dani2590
    dani2590 helen99763

    Posted

    Sorry to hear your having a hard time Helen. I'm 25 and still trying to cope with all this. My anal area is giving me grief now. Horrendously itchy and tingly. I know there are worse diseases out there but this is really a horrid thing to have sad
    • helen99763
      helen99763 dani2590

      Posted

      My problems all started with the anal area with fissures.  I was treated for anal fissure for almost a year before the LS whiteness and itch showed up in the figure 8 formation and finally my GP recognized it.  I am so sorry that you at 25 are experiencing this.  We are told though that LS will quite often go into remission in younger women like yourself as it is thought to be linked to hormones which are deficient in older women.  I surely hope this happens for you!  There is such great support in this forum.
    • dani2590
      dani2590 helen99763

      Posted

      Thanks for your msg Helen. It made me feel more hopeful. Is there any way to prevent fissures from happening in the anal area or is it just inevitable?
  • Morrell1951
    Morrell1951 helen99763

    Posted

    Helen, my bridge formed on the other side of my vaginal opening, so what used to be a very pleasant route from inside to my (now buried) clitoris developed a stretched-across bit of flesh that puts on the brakes on halfway up that road. Bummer. That happened quite a few years ago (I'm 63). At the back of my vagina, just inside, this past year a few hard yellowish bumps developed and worried me. My excellent gynae said she sees this often in older women (she has 1000 LS patients) – it's an aspect of normal post-menopausal atrophy. Freaking out about LS is so easy, but totally counter-producative. Hope this puts your mind at rest. But do ask your gynae to look at it.
    • helen99763
      helen99763 Morrell1951

      Posted

      Thanks for your advice.  Counter productive - yes, you are right, of course. I spent the last two days in the garden and have tried not to fixate on fear.  Also I have the Gyne appt for Thursday and feel very relieved it is that soon.  It may not be as bad as it looks to me but she can tell me.

      Morell - I believe I read a ways back that you are on a different ointment than clobetasol now?  How are you doing on the new med? 

    • Morrell1951
      Morrell1951 helen99763

      Posted

      Yes, after 18 months my gynae asked me if I'd be able to afford tacrolimus (Protopic is the brand name). I'm quite happy with it. The only tear I've had in the four months using it was totally predictable (stress) and healed very quickly. It seems they are reluctant to prescribe it, just because of the higher cost. You might ask your gynae what their approach is...
    • helen99763
      helen99763 Morrell1951

      Posted

      Interesting!  I figured you in Britain.  Reading over old posts I just realized we have the same gynae!   I missed her vulval clinic in September as I was away so have another appointment next week.

      I have asked her to have clob ointment rather than cream but was told cream is best.  Many here think the ointment form is better.

      Are you still using the Protopic?

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