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Having a bad day

Posted , 7 users are following.

Guest
Guest

Hi all

I am worrying about what happens next 😟. In  one year, in five years ? and although my LS is apparently stable ( but shrinking) I can’t stop thinking about it and asking myself why why why 🙁.

All of us on here are struggling in our own way I am sure.

I have taken lots of encouragement and advice from other sufferers and am grateful for that  but seeing Dr every six months is not helping my mind.

Just really down with worry 😟 five years on with LS and age 62 living in South of UK.

sorry for the gloom.

0 likes, 12 replies

12 Replies

  • susan43705
    susan43705 Guest

    Posted

    Hi Violet,  I feel like you do, 10 years and I"m 73.  I was i remission for a few years but not because I did anything special.  Now I"m in full bloom fusing and trying everything.  Not giving up to get it under control.  I'm also working very hard to just incorporate into my life and keep on keeping on.  I feel better having found this forum as it is very supportive.  I'm so surprised how many women have this all over the world.  Actually, I wonder if Asian and Middle Eastern women have this. If not, maybe there is something in their diet that is beneficial.   Keep your chin up and balance your life with fun stuff.

    • Guest
      Guest susan43705

      Posted

      Hello Susan and thank you for your reply.

      It is very helpful.

      This is a bad day I don’t know why it has gone downhill.

      Are you in any pain or discomfort ?

      Are you using steroids ?

      Have you lost architecture as they say?

      You sound as if your are a strong person and well done for your positive outlook.

      Yes this site is very good. Thanks again.

    • susan43705
      susan43705 Guest

      Posted

      Hi Violet,  I am not in pain, just insane itching from time to time.  I use Clobestol when it's bad.  I have fused, lost my inner labia and the damn disease has gone after my urethra and clit. Not happy about that.  Everyday is new architecture down there.  I have my moments of being in tears believe me.

  • always_somethin
    always_somethin Guest

    Posted

    Im so sorry you are worrying so much!!!

    The best advice my mother ever gave me, was when i was diagnosed with cancer of the foot.... i thought i was dying or that i was going to lose a limb.... and i thought there was no hope.... she told me.....

    "We Got This. Together we can tackle this and we will do everything we can"

    That one line got me out of severe panic and got me up off the floor. Just to know that someone was with me and was going to walk through this journey with me. To know that we were going to do everything we can....made me feel proud and surprisingly strong.

    So, in other words, WE GOT THIS!! and together we will figure out what works for you NOW. and we will worry about the future when it gets here!

    Do you have a significant other?? I found that discussing these things with my boyfriend really helps... and to see his level of care and understanding reignites all the mushy gushy love feelings i have for him.

    As for seeing the Dr all the time... i like it. Im weird i suppose, but it makes me feel proactive in my health and i feel really confident in myself after taking care and seeing the doctor. So, maybe view the appointment as a wellness check and dont get too wrapped up in the reasons we need these so called wellness checks.

    xo. hope you are feeling a little bit better.

    • Guest
      Guest always_somethin

      Posted

      Hello always somethin and thank you for your reply.

      just knowing you and Susan have taken the time has meant so much.

      Yes I have a husband but even he is getting tired trying to reassure me and I need to give him a break.

      can I ask do you keep checking ?

      I am checking all the time on a daily basis and I need to stop it .

      I will remember next time I seem the Dermatologist in October your words and thank you for them.

      Please tell me is your foot ok now ?

      Thank you

    • always_somethin
      always_somethin Guest

      Posted

      omg, i would check like every hour on the hour. i would check so often that i didnt know if i was seeing any changes. so i had to stop. and since i stopped checking ive felt way more at peace.

      My foot is fine now, its ugly and has big old scars but its still attached and im still alive!

  • jane08222
    jane08222 Guest

    Posted

    I am a year into this LS and at times it feels like a curse...

    I came to the realization that I will never know why it is with me, how long remissions will last, how much damage it will do, and how much it will rob me of good things and thoughts......that last item became my strength.   It will only affect my mind as much as I LET IT!   From that day forward my goal was to find what "works" for me, how to handle flare ups, etc.   I read as much as I could, realized I knew more than my GYN, so found a Dermatologist who specializes in womens problems.   I changed to 100% cotton underwear, added magnesium and vitamin B to my daily pills, cut processed foods out of my diet, bought Aloe, Emuaid Max, coconut oil, Cortizone 10, Clobetasol, dryer balls instead of dryer sheets, detergent used for babies and sensitive skin, dove soap for showering  (never in the vaginal area!), a squirt bottle to use after each void and figured out what combo of things worked best for me.   Yes the architecture is altered, but most of the time the LS is under control.   I am able to enjoy life, and be a whole person again.   Flare ups do and will happen, but the steroids work and are short term.

    I am hoping all this said will help you!

    • Guest
      Guest jane08222

      Posted

      Thank you Jane .

      This is the third positive reply I have had and I am listening gratefully to the wise words.

      I loved the comment of being a whole person again and acceptance of things.

      I have seen three female Gynaecologists in the UK.

      one said it’s “ about comfort and functionality not appearance “ so I think of that and try to tell myself that’s probably true.

      another said “ You need to get your confidence back” if only it was that easy.

      The third one said “don’t keep looking-leave that to us “. Again difficult not to look.

      I will keep reading these kind words of advice from these three replies and take comfort from them.

      Thank you Jane.

       

  • deb09833
    deb09833 Guest

    Posted

    Once everything is in control it will be less. I am down for every two years unless I have any issues. There is light at the end of the tunnel. 😊

  • karen23320
    karen23320 Guest

    Posted

    Keep your chin up Violet! We can live with LS. I am in remission now and hv put LS on the back burner. I changed my diet, take my supplements, keep an eye out for any itching ( usually if I eat wheat or sugar) . I have sex with my husband- ai hv lost alot of sensitivity in my clitoris and will see a Vulvular specialist 10/22 to discuss this. I jv 4 jobs and 3 children and I let LS take over for 3 months- no more! I am seeing a functional medicine dr to track down the weak link in my immune system in the hopes of warding off any further difficulties. 

    Each day is a new day! Try to think positively, find solace in faith and don’t let this get you down! 

    • Guest
      Guest karen23320

      Posted

      Hi Karen thank you for your positive message .It was very encouraging.

      I have wondered if this is due to a gut Candida overload so have seen a nutritionist and sent a sample for analysis. My results are back next week.

      If it is a problem with Candida  I can address that with diet. I will try anything as we all would !!

      I think it’s plastic related in my honest opinion as I used to use plastic backed sanitary pads (like lots of us I am sure) and that’s when it started.

      I am doing lots of things suggested here but the latest is sesame oil which is a bit like using olive or coconut oil and seems ok.

      My Dr said Ovestin cream is good for atrophy but it burns my skin and gives me facial acne !! Omg whatever next ....So I stopped .

      Thank you again Karen.

      If Candida test shows anything interesting I will post on here.

       

    • karen23320
      karen23320 Guest

      Posted

      I now use all natural, organic tampons, and 100% cotton pantyliners with no plastic- much more comfortable. If you want brands to buy, you can PM me- moderator will blick message publicly. 
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