UNWILLING TO GET BIOPSY
Posted , 11 users are following.
Hi friends.
I’ve had worsening symptoms ongoing since February or before. I worry so much I’ll be completely closed up soon. Seriously terrified.
Well I’ve got clobetesol ointment and bentnovate cream. I use baking soda water rinses after each trip to bathroom. I have v-magic, aloe gel, coconut oil, avocado oil, borax solution.... list goes on. I’ve tried them separately and together. Emu oil has helped settle things down, mostly pain - until yesterday.
When I asked if there’s anything gyn can do for me (I had bad reaction to hormone cream), all he said is unfortunately we need to biopsy. He knows I don’t want that.
Like *that’s* JUST what an already very unhappy vulva needs!!!??
Here’s the thing.
He knows I have atrophy. He suspects lichen Sclerosus but isn’t sure due to no classic white patch figure 8 or whatever. Well I’M sure.
What difference does it make other than being able to check the box?? Treatment options don’t change!! Increase risk of infection for what?
Why would I put myself through that? I guess I just don’t understand.
I’m fairly shy of procedures in general and I have severe complex ptsd.
Is there any good reason or better chance of reversal- better treatment with biopsy? No I didn’t think so.
If I’m missing something please inform me. But I just can’t do it.
0 likes, 23 replies
pat0423
Posted
Guppy007 pat0423
Posted
Hi Pat, firstly I agree with you.
Your doctor hasnt said that he has found anything suspicious worthy of putting yourself through that just to be told what you already know..... that you have LS!!
What concerns me is that it is important your doc and yourself are on the same page, but he says he is unsure of a LS diagnosis!? wants to give you a biopsy and meanwhile, you're terrified of closing up.
Can you go elsewhere? like a Vulva clinic. You say you are terrified of closing up. Have you been using a dilator as that is a must for some women that have this problem, and he should have told you that.
Katie
pat0423 Guppy007
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Hi Guppy. Thank you for such a validating response.
I have a set of dilators. I’ve only used a couple times, not regularly as I’m so flared up it scares me...
The Labia Minora fusing is 100% on right side and it’s rapidly reaching 95% on the left. It’s also “closed up”? on top area from clit down to below it if that makes sense.
No I saw regular gp who sent me to gyn who is highly regarded 🙄 But his next suggestion doesn’t make sense. I think there are no answers as I had a very bad reaction to estradiol hormone cream and all that’s left in drs toolbar is steroid cream which I have and use sparingly but daily.
No vulva clinics near me but I’ll do a search to see if it’s a possibility. I’m very low income with Medicare (ugh) so that is somewhat limiting.
I just did a soak, then regular shower after. Using clob or bent cream and emu oil then aloe. In between (after using bathroom) I rinse with baking soda water and reapply emu oil and aloe.
Seems the borax on cotton pads irritate me... didn’t used to butc3 times now it’s not been a good feeling after doing it.
I’m definitely worried as the fusing has always happened so fast. Now top is changing as well as the small and hard perianal area.
I’ve (knock on wood) never felt too much urinary problem but I worry about it.
I just think there HAS to be an answer to stop this structure damage/fusing...
Very bad couple days 😢
susan43705 pat0423
Posted
Hi Pat, i totally understand your PSTD. It took me almost 2 years to get up enough nerve to have a biopsy, and I only did that because a clinic where I went looked down there and told me she thought I had cancer and to see a GYN. Nice, right? So I got the biopsy to dispel the cancer diagnosis and found out it was Lichen sclerosis, which I had never heard of. That is the only reason I got a biopsy. It is confirmation. I am so sorry what you are going through, It's a battle every day for me and still trying different things to keep some level of sanity about this. It's a horrible journey, but there is good information on this site to assist you. Take it easy as best you can. Stress is also a killer.
pat0423 susan43705
Posted
Stress is definitely hard on this problem. I work on that yet I admit my life is full of it! I am learning to let go of things I can’t control.
I found relief of the pain with emu oil right when I’d received my turmeric and aloe... I will mix up another batch of that tonight. Sigh...
Thanks for being so sweet and supportive.
susan43705 pat0423
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We are all in this together. I would feel so much worse if I didn't see these posts and share. I just want one thing to work,
Birdie136 pat0423
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Get it done for peace of mind and you know for sure.i use a do nut cushion for comfort when sitting.Get a sitz bath they give great relief when cleaning and saves climbing in and out of bath.(i got mine from amazon )
pat0423 Birdie136
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g22870 pat0423
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I too use a sitz bath, soak in warm water for about 15 minutes, dry quickly and then use my cream. In Canada I was prescribed Protopic. My doctor said that when you have LS the skin become thick. By soak in a sitz bath, it softens the skin and the medicated cream can be absorbed and enter into the bottom layers of skin. I have found Emu Oil great. I do not wear underwear to bed, your vulva needs to breath. I try to wear skirts without underwear when I have a flare. I now only wear white underwear. I double rinse them after using either a baby detergent or a detergent without chemicals to wash. All of this has helped me, perhaps it will do for you too. I find when I eat too much sugar, it flares up.
g22870
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pat0423 g22870
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I guess I just need to find what will work. I’ve been using emu oil and it’s the only thing that’s helped so far ... but the last couple days it’s even not enough.
I will do more sosking!!
Hope you’re feeling good and keeping yours under control.
lynn_78641 pat0423
Posted
Thanks for sharing what’s going on. I feel ya! I’ve also got the circle 8 pattern down there of all white, so it’s most likely what you have but docs like to rule out cancer and not be responsible if they misdiagnose - I think both sides of my labia minora /majora are 100% fused. Atrophy too so it kind of disappears to nothing towards the middle of my anatomy going downwards, and my clitoris has been covered in white since my 2003 diagnosis- I’m kind of used to it but I hate it and use the help here to try to undo it! there is a tiny tiny part that is barely open and derms for years have been telling me to use steroids to keep it open but I don’t feel steroid cream has helped my LS. I was lucky in that I went to the gyno in 2003, she saw white and said she needed to do a biopsy and that it would hurt like hell but it had to be done- she was super kind and compassionate and almost cringed at the pain she knew I’d go through but she made it feel I had no choice so I did it right away and it was utter hell- then healed up within a few days. I use emu oil and now combine it with aloe Vera gel- anything that is 98-99% and doesn’t have any weird chemicals in the other 1-2%. Aloe is a big soother and when I mix the two together it forms a nice texture. I would consider adding borax to your sits bath. It’s been proven to work more effectively than bicarb
Tybear pat0423
Posted
Hi Pat,
Believe me when I say I was petrified, I am needle phobic.
But once it was explained that symptoms can become cancerous, I thought of my son who had cancer aged 22 and gave myself a talking to !
Also my husband my family all deserved me to take responsibility, as the oncologist said there is no hind sight... you have to go with their advice... there is no going back and saying I wish I had .
My gp gave me diazepam for the procedure I was so relaxed I can't praise the care and understanding everyone had for me.
Please please have it done, will be thinking of you, they also carried out my cervical smear whilst I was away with fairies, something else I was too scared to have done😘😘😘😘😘
em100 pat0423
Posted
Hi everyone
I'm new on here and like everyone I have joined to try and piece together information, gain support for this horrible skin condition.
I know exactly how you feel about the biopsy! I'm in the same position.
For years I suffered with constant itching and a small split. My GP just saod she thought I had a sti and sent my to a gum clinic.
Luckily a doctor there saw me and said it was classic LS. I have been having steroid cream and check ups for years with her.
The gum clinic has now lost funding and I've been referred to a gynecologist.
He said he wanted a firm diagnosis and I had to have a biopsy. No discussion. I was in tears and frightened.
I have paid for a private gynecologist and wanted a second opinion.
This guy has said he could do a vulvoscopy instead. Could you ask for that? I'm waiting for his secretary to contact with an appointment for this procedure. He has said my loss of architecture worries him? I've had my LS under pretty good control for years so it's all come as a shock.
pat0423 em100
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