Distraught
Posted , 15 users are following.
I had my biopsy yesterday. I'm pretty sure it will come back positive. I'm heartbroken. I'm 37. I feel like I can't be a good wife and like my life will be over.
I'm also in discomfort. Burning, dryness...I've been give Estrace for shrinking parts until biopsy comes back, but my estrogen was checked and it is fine.....I feel like I want to crawl in my coffin now...I have 3 small kids. Im finishing up grad school.
I should be happy right now...
0 likes, 37 replies
sue162 Assilem7477
Posted
sorry for how how you are feeling and welcome to discussing a subject here we can’t mention anywhere else
once you have had some feedback and read some threads you will feel a lot better. I felt the same when I found out more so because I’d never heard of Lichen Sclerosus and was sure I had it from google even before the hospital visit. My gp had never heard of it. It will help you a lot if you find a good moisturiser that you get on with, I use YES moisturiser I got it from the internet, it’s lasted ages it should help with the soreness and dryness. My biopsy came back inconclusive sometimes it does that so be aware of that. X
elle2424 sue162
Posted
Sue,
Which yes cream? In Amazon I see “yes to tomatoes” and “yes to cucumbers” etc.
I’m looking for an alternative to Emuaid, which I have never tried because it is so expensive.
Nancy_K_B elle2424
Posted
HI there Elle and Sue and others....
I've been using coconut oil for vaginal dryness and/or moisturizer; i learned about it on a couple of websites. Coconut oil is a natural antibacterial, antifungal and antiviral; and I've been using it for years for cooking and general skin moisturizing..
I went now to look up the YES product for you. It's the VM = for Vaginal Moisturizer. Take a look at the ingredients, gals. Nothing raised alarm bells until the very last one, which i didn't recognize: Phenoxyethanol. Check out an article called Is Phenoxyethanol Safe? Apparently even Italy and the E.U. have put it on the top ten list of allergens among other things.
Coconut oil and also Castor Oil have really made a lot of difference for me in comfort levels. Castor oil even has "17 Science-backed health benefits" .... it's thicker than coconut oil so I wouldn't all it a moisturizer for playdates, but it helps the soreness etc. Hope this helps.
Assilem7477 Nancy_K_B
Posted
ORGANIC EXTRA Virgin coconut oil...Is that right?
Idk how to use all of these things together.
Do you put on CLOB, then a vaseline over it?
When are you using the oil? Can you mix all this stuff?
Also clob cream or ointment? What do3s everyone use?
Nancy_K_B Assilem7477
Posted
hi again Assilem,
oh I definitely use the cold-pressed organic extra virgin coconut oil that maintains all it's wonderful healing properties. The mechanically pressed, heat-treated version comes out smelling like a machine shop. Unfortunately when the health food industry really got going with the coconut oil - the imitators got the cheapest machine grade oil to put in the supermarkets. I use it at night to go to bed after a wonderful bath (1TBS of Borax powder and 1 TBS of baking soda in the water). All set for a cozy evening.
Assilem, I don't use the Clobestol at all. I read up on it and it doesn't have a happy ending; I see that some women find it absolutely necessary to stop the pain and itching. But I had stopped the worst of that weeks before i got an appt with the Gynecologist by having found out about this being and autoimmune disease - from someone on this site a couple years ago. She mentioned that Vita min D3. I wish someone here would enlighten me as to what benefits Clob has in the actual healing department. I haven't seen any such comment yet.
I think castor oil does the same thing that some people have used vaseline for, but castor oil has healing properties that aren't ascribed to vaseline - a petroleum based product. I have used castor oil which is thicker than coconut oil as soon as I could buy it for also using with itch etc.
I also have been to an acupuncturist twice so far so I can't say for sure which of these things have done the most to reduce pain and open sores. I can sya that I noted a fw days ago that I fetl worse after feeling better when I "cheated" when as out shopping and picked up some cheetos (oh gee)... I really don't think we can afford to eat ANY junk food, preservatives etc, fake cheese etc etc. Ginger Kale and cauliflower vegetable soup - YEAH!
Assilem7477 Nancy_K_B
Posted
I was hoping Clob would stop the loss of body parts. I know it thins skin so IDK. Dr. Goldsteins presentation says to not stop using it...ever....ugh
I'm scared not to use ot and scared to use it.
Plus, Im nervous about biopsy results coming up negative but I really have it after watching the presentation. Then, not sure if I can get the medicine. A presentation said the doctor could just have taken it from the wrong site and many doctors don't know where to take it from, etc. I'm already missing parts but I have no white patches. I think most doctors think it has to have the white patches.
Nancy_K_B Assilem7477
Posted
Ahhhhhh..... breathe it out, dear, ya gotta trust your own knowing. You've got it you've got a name for it, and now your life is finally going to get better! Better, because NOW you have control over your life and what to do about it. KEEP READING online everywhere. There is a fine protocol that I am just starting that I read about elsewhere that works - Stories of women and men getting well... so please don't give up hope. I mentioned the title to search before: How do you Cure Lichen Sclerosus Naturally? Here's How...
debi14820 Nancy_K_B
Posted
I only use the Clobetasol to keep the LS symptoms away. I use it twice a week and so far I've been in "remission" for 2 years. It works for me but maybe not for everyone. It sure is a guessing game isn't it? Which products work for each of us. How does Borax work? What is it?
kathryn07219 Assilem7477
Posted
Sorry to hear you've joined this somewhat exclusive club but please don't despair. Life does not revolve around LS unless you want it to. Try everything on this forum - there will be something that works for you. It took me 4 years to learn about it, but caster oil applied to the dry, sore, itchy bits has helped me enormously. My considerably younger husband still fancies me and there's more to life and love than penetrative sex! The first gynaecologist I saw for this condition was the most wonderful man. He sat me down, took my hand and said LS will be with me always, I must see it as my friend. Such words of wisdom - learn to live with it and it won't take over your life.
jules92034 Assilem7477
Posted
A woman it can be okay. There are treatments, it's just practice finding what works for you but you can. I have and it doesn't affect my marriage or my kiddo anymore.
Have you been tried on a steroid cream? That's what helped my lichen the most. That and cutting out sugar.
Don't give up. You can life with it happily. Forums tend to be for the worst stories when people need help. There are tons of people with positive stories too. They just don't get shared as much
jules92034
Posted
That's was meant to say "don't worry", not "a woman"!
elle2424 jules92034
Posted
jules92034 elle2424
Posted
Hey Elle, I use 2-3 times a week when I've not got a flare up but daily as soon as any itching comes on until it's gone.
Having fertility treatment at the moment so trying to use it the minimum possible just in case
elle2424 jules92034
Posted
debbie04643 Assilem7477
Posted
So sorry to read you feel like this. I’m also awaiting biopsy results and like you am pretty sure I will have LS..although my dermatologist wasn’t 100% sure I’m scared to get my hopes up. I’ve done so much research and joined the support groups on Facebook where there is so much advice and help from other ladies in the same situation. It really helps to speak to others who are going through the same..there’s so many ways of managing your symptoms. I will be distraught too if it’s positive but I’m determined not to let this ruin my life. It’s not a death sentence we can get through it! Hopefully once we find a treatment that suits us it will stay away!
Are you in the US? Have you heard about using Borax (in the bath) it’s helped so many ladies manage their LS. It’s available in your stores but we have to get it online here in the UK. It will be something I’m willing to try to stop the progression. Lots of ladies claim it’s cured them!! If you want more info it’s all on here or on the Facebook groups. You are welcome to private messsge me and I can send you some links I have.
Try and stay positive as stress can make things worse.
Please let me know how you get on.
Debbie
Assilem7477 debbie04643
Posted
Yes, I am in the USA. I was treated for recurrent yeast for over a decade! I am now mssing 1 minora and dr. Said clitorus is shrinking...I cry hysterically over my missing parts.
I have no white patches. I dont want to stop having sex with my husband at 37 years old. I am terrifoed of the future. I don't even want to get out of bed. I have to because I have a job but I am totally not motivated.