Recently diagnosed and increasingly scared
Posted , 12 users are following.
Hey there everyone. I was diagnosed by my gp a couple of weeks ago. Am using the steroid cream nightly after bathing in water and baking soda, using water spray after peeing and moisturising with olive oil/ coconut oil, all thanks to advice gleaned on this incredible forum. The area around my bum is white, so are the insides of my labia, I have no ulcers or tears and not much itching but it’s all pretty scary down there and although I really I thought I was coping with this diagnosis and the new routine, I am daily becoming more anxious about cancer. I look with a mirror and have no idea what is going on, it all looks so different and weird, that I’m really starting to dread the evenings when I have to put on the steroid cream. So far after 2 weeks, there’s been no improvement of the white patches and my heart is sinking. I’m not sure how long I’ve had this, maybe 6 months, maybe longer and I have this awful growing fear. How quickly does fusing happen, in days, weeks? And when people refer to scarring do they mean the white patches? Are the scarred parts/ white patches where cancer is more likely to occur? I’d be so grateful for any help, I’m just getting more and more confused and upset the more I learn about this condition.
0 likes, 34 replies
susan43705 ajay39
Posted
Hello,
You voice my sentiments. I'm 72 and have had LS for about 11 years. I had a brief remission of maybe 2 years and now it is back like a vengence. I too don't recognize what is happening down there. I'm afraid to look because it is constantly changing and I don't know what normal is anymore. Next week I am seeing an acupuncturist and someone who practices Chinese pharmacology. I'm hoping he can change the energy in my body. I've been reading online about this course of action and healing from LS, so I am encouraged. It is an expensive process, but I literally can't stand it anymore. I think I lost my last boyfriend a year ago because intercourse was pretty much impossible. I use Clobestol sparingly because of the side effects, but when the itching is unbearable I use it. In between, I use Caster oil to stay moist. There is lots of good advice on this site and it is very nice to know we are not alone. I can't believe how many women have this. I did have a biopsy to confirm my condition and it is advisable to check in with your doctor to get checked every once in a while.
Stay tuned to my experience with the acupuncture and his advice. Hang in there.
ajay39 susan43705
Posted
karen41728 susan43705
Posted
Hi sue
Have you ever had abnormal cells after a cervical smear in the past, some types of Lichen planus are caused by hpv virus. So it's autoimmune and it causes us to have other problems. I'm almost 60 and had colposcopy years ago after an abnormal smear, it's linked X
susan43705 karen41728
Posted
Hi Karen, I have had abnormal cells after a pap smear, but that was years ago. Turns out it wasn't cancer, just hormonal stuff going on.
karen41728 susan43705
Posted
Yes it's definitely linked sue, donyou gave Lichen planus any where else or any other health issues, I can't eat anything spicy now have it in my mouth so have to avoid certain foods X
susan43705 karen41728
Posted
Oh my Karen. I don't know about Lichen planus. Never came up in my exams. Besides watching your diet for the issues in your mouth, what meds can you take? Is your mouth itchy? So sorry you are going through this.
karen41728 susan43705
Posted
No it isn't itchy Susan just burns when I eat anything spicy so I need to watch what I eat, there's mouthwashes for this. Do you have any other Heath issues, LS and LP are autoimmune so I blame everything I get on this! X
susan43705 karen41728
Posted
Hi Karen, I don't have any other issues, at least at the moment.
Blueplum ajay39
Posted
ajay39 Blueplum
Posted
ann67814 ajay39
Posted
Try no to worry so much. Fusing happens slowly and gradually. It doesn't happen overnight. It is better to avoid looking everyday give it a week then you might see an improvement. Cancer is quite rare you can't keep in stressing about it, Stress is a real factor in causing
flare ups. You will earn to live with this and to take it one day at a time. You will probably always have this but
if you can see it as an inconvenience rather than a life sentence your life will go on and you will adapt. Good luck.
ajay39 ann67814
Posted
Wee_Dugie ajay39
Posted
ajay, I am a male with LS and have been treating mine for 7+ years. The scarring you are asking about is completely separate to the white patches, as the scarring will most likely form where there has been greatest trauma to the skin, including the white-patch areas.
As you do not seem to be getting any benefit from the steroid make sure you are using Clobetasol - most often this is in the Dermovate or ClobaDerm brands. If you are not on this ask your GP to switch you to it. If you are getting no long-term benefit from steroid use ask for a referral to a Dermatologist. If you happen to be on Clobetasol already, maybe you are not working it into the skin sufficiently - don't forget, this is your skins 'rescue life-line' - be good to your skin and it will respond positively. If you are able to tolerate showers, have a warm (not hot!) shower, dry thoroughly, then apply the Clobetasol working it into the skin. Once you have applied it to ALL the affected areas of skin, use a massage action (no additional Clobetasol) to really ensure the skin can benefit from the steroidal action. Good Luck ...
ajay39 Wee_Dugie
Posted
susan43705 Wee_Dugie
Posted
Hi, if it isn't too personal, from a male perspective, has LS been an interference in your relationship(s)? A number of women have had lots of issues in how to tell a boyfriend or start dating again.