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34, just been diagnosed with LS, looking for reassurance

Posted , 15 users are following.

bonnie92818
bonnie92818

Hello,

I’ve just yesterday been diagnosed with LS. My doctor said not to google it, so I googled it (because I’m a fool) and now I’m terrified. I’ve got the steroid cream but am so scared it might not work. 

I guess I’m looking to hear some encouragement from people who were also diagnosed at a younger age than is typical for this disease, and i’d like to know how things are going. Also general words of encouragement and reassurance from fellow more experienced sufferers would be great to hear. I suffer from health anxiety as it is so this has really set me off. I have two little children under 2 and I can’t afford for them to see me so upset.

Thanks in advance x

0 likes, 24 replies

24 Replies

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  • maggie81413
    maggie81413 bonnie92818

    Posted

    Hi Bonnie, I have read some great advice in this discussion, hope it helps you. I totally understand how you're feeling. I was only diagnosed just over 4 weeks ago at the Vulval clinic by a Dermatology Consultant. 2 GP's had assured me I didn't have LS, and I was proved right, so have no faith in my local surgery now. I am worried about finding anything that needs checked out, because I don't feel confident in my GP surgery, yet my next hospital appointment isn't until March. Regarding your concerns about the lumps, I noticed one lady suggested going to A&E, that actually gave me something to consider if I become worried about something. Another thought, maybe ring-up your consultants secretary and speak with her? I'm using Clobetasol, oestrogen cream outside, oestrogen tablet inside vagina. Some of the dosages are tapering down now, and using oils etc. Although things are improving, I've got some white skin and fusing just around the perineum area, but this is preventing me having a sex-life for the time being. I would say that the borax solutions I use have released some of the fusion, but by March, if things aren't improved enough, I hope surgery will be offered. My consultant did mention it. Mentally, I have good days and bad days, trying to come to terms with this thing. I do believe in an holistic approach overall. I like listening to healing music/affirmations, and am going to try a jade roller and yoni egg for their healing qualities to see if they help. Wishing you all the best, Maggie x

  • kris09489
    kris09489 bonnie92818

    Posted

    Hi Bonnie,

    You are absolutely not alone! I was diagnosed at 25 and now I’m 28. It was certainly scary to get a diagnosis but also a huge relief to finally have a name and treatment plan. Things have been good for me so far. I’ve only had one flare up since my initial Clobetasol treatment and I’m currently experimenting with oils to moisturize, as many others suggest. Don’t google and make yourself nervous!! Every person’s experience is very different. 

    Being a part of this group has made me feel SO much better. If you’re ever feeling down, just reach out! We’re all going through this together and we’re here for you!

    • bonnie92818
      bonnie92818 kris09489

      Posted

      Thank you Kris. Do you have itching when you have a flare up? I ask as I don’t seem to have that, I just have this burning sensation when the area is touched and for sometime after. I read somewhere that itching could be more common in post menopausal women, just wondered what your experience and symptoms have been? X
    • kris09489
      kris09489 bonnie92818

      Posted

      Hi Bonnie,

      I think I went about 5 years undiagnosed and during that time, my primary symptom was really bad itching. However, since my diagnosis, treatment with steroids and constant care, I’m not itchy anymore at all. When I feel like I’m having a bad day or flare up, the area stings and feels very hot. It’s a more of a low key, persistent and irritating pain for me over the course of a few days, which is a sign for me that something is off. 

  • cheryl33619
    cheryl33619 bonnie92818

    Posted

    Bonnie I was diagnosed in April I do not believe in steroids so I have gone the natural route I take borax baths and I went to a pelvic specialist and got three Mona Lisa touch treatments after these treatments I became symptom-free I changed my diet and I cut out all sugar and gluten I eat lots of raw vegetables raw salads and as I said I have no more LS symptoms I believe that steroids are just a topical solution and not a cure so I choose not to use them someone once said they are like a credit card you pay later
  • Riseabove
    Riseabove bonnie92818

    Posted

    I am new to the board, and just joined because my wife was dx with LS last week.  I usually am a big fan of google, and people doing their own research, but I've said "don't google it" re: LS several times the past week.  It really is just the worst cases out there on the web.  Getting dx, and treated should prevent those outcomes, so instead of letting is make you afraid, let those google images reaffirm how great it is you are  getting diagnosed and addressing the disease early.  All of the medical research I have done is encouraging.  Women seem to be able to tolerate the long-term high potency steroids very well, and they seem to manage the condition.  

    • always_somethin
      always_somethin Riseabove

      Posted

      You are a wonderful person. thank you for reaching out as a significant other.
  • trishafox1967
    trishafox1967 bonnie92818

    Posted

    hi

    i was diagonised with LS two weeks ago. im in such a bad way. i had a hysterectomy 6 weeks ago. my gyne told me that it just came on as i never had symptoms. unfortunately i googled too and am distraught. Dr Google has a lot to answer for. Id love some good news stories i hope you get the right help xx

     

    • Guppy007
      Guppy007 trishafox1967

      Posted

      Hi Trish start your own thread and you will get a better response.
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