I need advice
Posted , 5 users are following.
Hi everyone,
So many questions! Where to start?! I feel so frustrated and alone. Thank God, I found this forum.
Question #1: Can using Clob mess with the results of a biopsy? I had one in June and was told that it came back negative for LS. My issue is that, I had been using Clob for while by then and I was under the impression that it would make the classic "signs" of LS disappear. When I raised this concern before the biopsy, I was brushed off. Also, the doctor asked me where I feel the symptoms the most, then preceeded to take a biopsy of another area where I don't really feel symptoms. I guess my question is, are the results right? Because I can tell you that nothing aside from clob has helped me with my symtoms. I don't know what to do now.
Question #2: I have been using Clob for a while now. I've been trying to lower then number of times I use it, but I'm struggling. When I first was given it, I was told 2 times a day for X number of weeks, then 1 time a day for X number of weeks, then every second day, then 2 times a week. Well, I'm trying to use it every second day, but the discomfort is unbearable! The itching and burning comes back almost immediately. I soak in the tub (20min) with baking soda in the water, then massage the clob into the skin. When I'm very sore, I soak again (20 min) and massage in some oils (I've tried Emu oil, coconut oil, vitamine E oil). It helps, but the pain is so bad! How can I lower my number of times I use Clob each week when the pain and burning is so bad, I can hardly wear underwear? I'm desperate for advice. I was told that I can't use it every day, so far I'm sticking to every 2 days, but I have no idea how to get to 2 times a week when I'm already stuggling! Please help!
0 likes, 6 replies
Wlparadise CanadaLS
Posted
Clobetasol isn't for everyone. It sets me on fire. I didn't get better I got worse. Your writing seems to indicate that. You also could have a yeast infection at the same time as they go hand in hand. You will be very itchy with either. If you can't get to a MD appointment and know yeast infection from past experience Monistat 7 is a good otc. remedy. I have an arsenal at my disposal. I switch up as needed. A specialty gynecologist is what you need not a pap smear breast exam see you next year kind..
THEY DON'T GET IT!
CanadaLS Wlparadise
Posted
I do find Clob works for me, but when I scale back the "dosage" (i.e use every second day, etc) it doesn't take long for the pain to return. When I use it more frequently, the burning/pain is gone. Could the fact that it returns so quickly be caused by a yeast infection? I just want to make sure I'm understanding what you're saying.
I was originally diagnosed by a vulvar specialist. He didn't biopsy, but he's been treating women with LS for years and said he was 100% sure it was LS. My GP then sent me to a regular Gynecologist for a biopsy to confirm. Unfortunately, she said it came back negative. I listened to the Goldstein talk and I was under the impression that using Clob before a biopsy would give a false negative. It's been awhile since I listened to it, so I may be wrong...
Sedg Wlparadise
Posted
As I asked Canada is Clobetasol like Dermovate steroid ointment which is strong.
I was advised today by my Prof to change from Dermovate to Betnovate on this occasion, to help with a red hot 🔥Painful itchy flare up of LS. The Ugly ........👹
I did and the relief was amazing in an instant 🙏
We don't know but we do know more than the medical professionals that is for sure certainly through this wonderful forum
It is a great support
L??VE
Gillian1956 CanadaLS
Posted
I would go back to your gynecologist and ask for another biopsy of a area that is a problem to you and try tl leave off the clob for s few days do they will get a better sample it took two biopsys to diagnose me with LS I'm still trying to control it myself can't wear anything tight or even more fitted as to be baggy and eve. Knickers are uncomfortable unless they are gabby can't stand anything touching it's a horrible thing we have hope they get you sorted out soon
Sedg CanadaLS
Posted
Hi Canada
Can I ask is Clob the same as Dermovate ? I ask as my LS flared recently hot 🔥Painful and red itchy
I phoned my consultant secretary (love her) and as he was in clinic today 🙏 She messaged him for advice for me. Mainly cos I was crying like Tiny Tears methinks.
Anyway Result was :
He said change from Dermovate to Betnovate which is a lower strength steroid
He explained that sometimes, depending on the level of 'flare up' the base used in the Dermovate ointment can make LS worse !! Such is the unpredictableness of the Ugly LS 👹
I immediately washed in Dermol emollient as usual, dried with cool air hair dryer and applied Betnovate that I already had thankfully 🙏
OMG the relief was instant I cried with relief.
Maybe having a less strong steroid would help Canada 🙏
I will always advice to ingratiate yourself with secretary's name especially NHS they can be one of your best friends !!
I hope you get relief Canada
L??VE
CanadaLS Sedg
Posted
I might be wrong, but a quick google made me think that they are the same thing? I'm not 100% on that though.
I feel like if I use it regularly, I'm fine, but once I scaled back, the burning and itching start up again. This has only happened twice and before that I was OK scaling back until I had a flareup. I'll be keeping better track of everything (steriod use, symptoms, etc) so I have a better idea of what's going on.
I see my GP next Wednesday. I'll rule out yeast and hopefully be able to see my gynecologist soon. Unfortunately, the medical system here is slow, so seeing "specialists" can take a while.