Clog ointment; how long before you saw improvement?
Posted , 5 users are following.
Hi everyone ,
Its been almost 3 weeks since my diagnosis. I have used my medications every, single day, as prescribed. I'm avoiding all the things my GYN suggested and I am being 100% faithful to every suggestion he made. I had immediate results with the Clob for the 2, small white plaques GYN found And, I feel I am making some progress but still feel burn(ie) and have an overwhelming feeling of pressure and the feeling as if something is stuck inside of me (not necessarily inside my vagina, just in the vulva region. Feel as if I could reach in and grab a straw and pull it out and I would find comfort. My Uro told me my LS has completely gone into remission as I had a cystoscopy 2 days ago and he examined my vulva for LS and spoke with my GYN. GYN told him my case was a very early, very mild case So, if that's true, I am so confused as to why I am still feeling these symptoms and I wondered how long it took those of you that the Clob did work for, to work ? Also, I am always curious to hear other's stories and symptoms
TIA and I hope each and everyone of us (myself included) finds the right mixture of meds, techniques and balance to live each day, happier. I see what this diagnosis has done to my mental state and can only imagine what everyone else goes through.
Jean
0 likes, 16 replies
beverly52803 Ifeellostnow
Posted
Sorry, I can't imagine what is causing those symptoms because I don't have them. Not sure if any two of us experience this the same way. Feeling something is stuck inside can't be very pleasant. Maybe a urinary tract or bladder issue?
Ifeellostnow beverly52803
Posted
My Uro has no explanation for it either, unfortunately. I had the cystoscopy and he did find a large bulge in my bladder. There are SO many "ifs and maybes" for me its unreal . My medical history is so in depth none of us can get a feel for what's causing it all. Both my Uro and GYN are on the same page that the pressure and "something in there" feeling likely isn't coming from the LS.
A little back story will explain the reasons behind this thinking pattern In the last 4 yrs I have had 4 Abdominal surgeries The first of which was a Open abdominal Colon-resection followed by lapro gallbladder removal, followed by an Open Hysto. All of that was done in an 18 month period. Now, fast forward to May of this year, I had a hernia repair surgery done and when I was only 4 weeks out from it, all of these Vaginal symptoms show up. Now, rewind to the Colon surgery, I have extensive scar tissue in my abdomen from that surgery, the bowel disease that led up to it and the fact I had a COLO-Vaginal fistula So, they're going to biopsy the bladder, and my Vagina as my Uro also found Vaginal polyps which evidently are rare, and check for another fistula and reasons for the pressure and other symptoms that aren't tell-tale symptoms of LS. Could be scar tissue? Could be Mesh migration from the Hernia repair? Could be LS? Could, might, maybe, possibly..... BIG SIGH!
My entire life has been a rollercoaster of pain and suffering and never once have I let it get me down. Never once have I cared. I always felt blessed I lived through it all to tell the tale But, all those surgeries, recoveries, 20 yrs of a bowel disease, add in a sinus surgery in the 4 yr period, daily migraines, and a hellacious thyroid storm after my hysto and NONE of that compares to this. It's insane the amount of mental hell I have been feeling since these Vaginal symptoms started . I just wanna get back to a point where I don't notice my vagina all day. IDK that is even possible now.
thank you so much for replying,
Jean
beverly52803 Ifeellostnow
Posted
jeanne, could it be adhesions? I had a friend who had surgery for an ectopic pregnancy many years ago and I remember her having Mystery pain issues because of adhesions. Unfortunately I don't remember how they were resolved, but I assume your docs must have considered this. Has it been mentioned?
Wee_Dugie Ifeellostnow
Posted
Hello, I am a male with LS and I have been successfully using Clobetasol for 8 years+ now and I have followed this WH / LS Forum for about a year now.
Obviously I cannot comment on the feelings you are experiencing right now, other than, hopefully between the Urologist and Gyn they can get to the bottom of what is going on.
So, like you I got immediate results with the Clob, the white patches on the surface of the skin tend to go quite rapidly as the Clob has a really strong steroidal impact on helping the skin recover. If you have any scarring that will take longer to get to the state where it is as healthy as it is possibly going to be.
Depending on what areas are infected with LS the biggest problem women face is the loss of natural architecture of the external genitalia due to fusing of the skin. So, long-term this is what you to be most careful of.
The person prescribing the Clob may have directed you to use it, typically in this manner: once a day for 1 or 2 weeks, then every other day for another 1 or 2 weeks, then review what progress is being made.
If the Uro is correct about you going into remission I would take a cautious approach, and certainly don't simply stop ALL use of steroid application, and in terms of the person who prescribed the Clob should be looking at both a lower strength steroid and reducing to a maintenance application of the lower strength one to perhaps once or twice a week.
sam231969 Wee_Dugie
Posted
Dear sir how can I notify you when I post my own case?
I'm interested to hear your Diagnosis.
regards.
Ifeellostnow Wee_Dugie
Posted
You're spot on about the instructions my GYN gave me. So, yes, I'll be tapering down some and doing it a couple X a week from now on. The architecture issue is my biggest fear. My GYN says mine is very early caught and very mild and he expects good results as long as I stay on my maintenance routine. I have no scarring, no rawness, no itching and only burn when my Imvexxy makes it's way back out the next day. For some reason I do not tolerate the estrogen creams touching my vulva.
Thank you for your reply! I love the support everyone shows on this Forum
Jean
Wee_Dugie sam231969
Posted
Sam I most frequently respond to posts on the " Penis Disorders " Forum on this same web site, I include a link to that Forum at the bottom of this message. If you are Male click on the Link and then Click the " New Discussion " Button at the top of the page.
If you are Female of would prefer to Post here in the Women's Health / Lichen
Sclerosus Forum go to the Top of this page and Click on the blue " Lichen Sclerosus " link then Click the " New Discussion " Button and create your own Forum Discussion - I then receive email alerts for any new Messages or New Discussion Forum Topics / Threads for either Discussion Forums ......
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https://patient.info/forums/discuss/browse/penis-disorders-3405
Guest Ifeellostnow
Posted
Dear Ifeel,
Understand the mental state part but very glad to hear that the LS was "mild" and "in remission." That's very good, similar to what mine said 3 weeks ago.
As for the pressure and burning....hmn... You're saying the vulvar skin burns? Sometimes the clobetasol will do that. Do you have some thick skin moisturizing cream? I have Eucerin and it works well but cold vaseline also helps.
I have had skin soreness on and off for 6 months but has improved with the Eucerin and estradiol. Can you pinpoint exactly where the pressure is coming from?
Ifeellostnow Guest
Posted
I put the comment back to you under this, on accident.
Ifeellostnow
Posted
The pressure is all over my Vagina, there's no one specific place. Feels like a cement truck is sitting on my vulva. But, it comes and goes. I seem to improve some, then notice its back. One would think if it were LS related it would be a constant? I am out of my mind with worry,. Dr suggested vulvadynia but i can touch everywhere, put pressure, poke with cotton swab and even withstand somwthing being in my vagina with no pain whatsoever. I am just sbout at my wit's end over this! I think id rather have anything besides a vaginal/vulvular issue. Ugh yes, im debbie downer, right now
Guest Ifeellostnow
Posted
Vulvodynia is just a broad term for pain in that area and can be provoked or unprovoked. But, if I understand you correctly, yours is a pushing feeling? It's not sore skin, or a sore, and it doesn't sound like it's related to the LS, plus yours is in remission so I doubt it is that. I'm trying to feel that in my head. What are you doing when it feels ok? and, what are you doing what it seems to hurt? Sitting, standing, bending, working?
Ifeellostnow Guest
Posted
yes, you are absolutely right. there is no sore skin, I don’t have any sores, I don’t itch, and I really don’t burn. The only time I feel any kind of burning is sometimes in the morning when my estrogen has kind of leaked back out. so, I just don’t know? It’s also confusing and frustrating and maddening . I just want to feel better…
As for the what and when and how I don’t really see Indy as for the what and when and how I don’t really see any kind of pattern. Sometimes I feel better for two or three days and think I’m getting better, then boom I feel the pressure and the aching again .
Ifeellostnow
Posted
i meant * all so not also.
beverly52803 Ifeellostnow
Posted
If the estrogen causes burning try applying vaseline before hand to the area that usually burns to protect the skin. I have been using only compounded estradiol up to now which means the base cream is not the same as what you would get ready made at a pharmacy and would cause the least amount of irritation. Even so it does irritate me somewhat.
Guest Ifeellostnow
Posted
Has anyone suggested a pudendal nerve problem?
Ifeellostnow Guest
Posted
No one has, no. Everyone seems very confused about all of these symptoms, myself included. I will ask my Uro when I see him on the 5th of August. In the mean time I will look that up as I haven't heard of it before. Thank you so much for all the replies.
Jean