curing the incurable but now I still have the same symptoms

Hello all you girls sitting on ice packs. For over 3 yrs I had Lichen Simplex Chronicus which is the thickening of the skin and causes burning pain. Also burning pain for over 4 yrs. The pain used to spread out to my buttocks and my inner thighs. My wonderful specialist did two laser surgeries where he removed layers of skin and also removed my remaining hymen caruncles. Also he did alcohol injections. Those things with Lyrica cut my pain by half and also stopped the burning pain from spreading to my buttocks and thighs. My specialist recently retired so I am seeing a different Gyno who recently did a biopsy in three different places. The results came back saying that I no longer had LSC, my specialist there for cured the incurable. But now I have something with a name so long that my Dr. couldn't even pronounce it. It has to do with the browning skin on my labia minora. I also have some swelling right on the entrance area. So I'm confused. Why do I continue to have the same kind of pain? Something is causing the swelling and something must be causing the pain.

hugs to you all
Cookie

Browning skin, post inflammatory hyper - pigmentation maybe? You poor thing Cookie. I know your story and you have had a harder time than most of us on here, LS is terrible.

I get swelling too and have no idea what causes it. Argh, it's so dumb!

Could they remove the affected tissue? Or would that not make any difference given the procedures you have had prior.

Do they have any other real plans of action?

Thanks for replying hun. The only plan my Dr. has for me is to use Clobetasol twice a day and to take Lyrica for the pain (the Lyrica was at my request). The Dr. doesn't like writing scripts for it but too friggin bad eh!? So I'm kinda starting from the beginning AGAIN! I've taken Clobetasol before when all of this first started and it didn't help back then but I'm willing to do what ever the Dr. wants. *shrug*. This new Gyno is way different then my last one. This gyno wants to try creams and lotions and crap like that. No injections or surgeries. So I guess we will just see how things go from here.

hugs to you sweetie

Cookie

Cookie- I wanted to check in to see how you are doing. I was recently diagnosed with lichen sclerosus (only by looking, no biopsy), and my specialist said I would have gotten it no matter what (regardless of my main vulvar pain). However, I don't believe that for a second because the LS pain only started after bouts of overwashing when I was on boric acid suppositories. No whitening of the skin or scarring, just sticky and shiny skin in some areas.

He has me on a 2.5% hydrocortisone cream compounded in Vanicream Lite Lotion. It has made most of the rawness and stickiness of LS go away, but my skin is still shiny and a little itchy. Plus, now some of my skin looks a little saggy and wrinkly. I'm hoping that's my skin's way of trying to get some of its elasticity back??

How has the Clobetasol cream worked for you?

I hope you've found some relief!

Hello Emalita hun, I rarely use Clobetasol now. When I'm having a bad day I will use it but to tell the truth, I have no idea if it helps. lol. I also use Lidocane 5% ointment and that really helps when I am having a painful day. It numbs the skin. Lyrica is fabulous. It has really been great. Sometimes I have issues with the side effects but I will take side effects over pain any day.

I am now only seeing my family Dr. in order to get my prescriptions for Lyrica and for lidocaine. I dumped my (new) gyno because he is useless and I really don't need him anymore. As long as I take my Lyrica twice a day my pain level is low enough that I can handle it. Sometimes I go for an entire day or two with out pain. OMG, its wonderful!!!! I'm afraid to find another Dr. because I am afraid another Dr. will make matters worse.

As for the saggy and wrinkly skin, I have the same thing. Its probably the way our body are trying to fight against our vagi-gi problem. At first I was a bit disgusted but now I am used to the way it looks. I am just like "oh well, who gives a crap. If my hubby doesn't like the way it looks then he won't get any sex......ever" lol.

If your meds are working, or your Dr. isn't helping, just keep on trying to find an answer. There is always a better Dr. and a better medication. You hang in there sweetie. Sometimes its a long hard road but that road can always be paved (like my vagina was when my Dr. did surgery) hehehe.

I hope this helps honey, I really do. You write to me any ole time.


Big hugs to you
Cookie

Thank you for your wonderful reply! You sound so kind, and I can almost "hear" a smile in your words

This new specialist I'm seeing is in AZ, and I'm trying to put a little faith in him since I did fly across the country to see him! The hydrocortisone cream has made a big difference, but I feel like I've kind of hit a plateau. I've only been using the cream for 4 weeks, and the improvements that I have gotten were pretty quick (thank goodness!!). However, now I can't seem to get over this last hurdle with my LS (slight itching and rawness). I believe he has me on the cream twice a day for another month, and then I'm supposed to reduce it to once a day until our next appointment in July. So I'm thinking I will continue for the next month, and then call him to see what he wants to do. I've read that generally doctors start out with a much stronger steroid like Clobetasol then change over to something weaker, but I assume since he said I had a very mild case (sure doesn't feel mild!) he didn't want to give me something that strong. I would almost prefer just giving it a good kick instead of this slow waiting game You know, the really stupid thing is that the pain HAS greatly reduced with my LS since starting the cream...but then why can I only feel the pain that is left and not celebrate the relief? I feel like I am so hypersensitive to ANY feeling down there now that I just don't know how I will ever be content with my lady bits.

With the biopsy for your Lichen Simplex Chronicus, did it actually find LSC, or did it just rule out other things? I was reading that LS is generally diagnosed through biopsy (my specialist disagrees unless there is a suspicion of cancer), but the biopsy just rules other things out. So essentially the biopsy won't ever truly identify LS, and it's just another diagnosis based on the doctor's opinion and process of elimination

The other crappy thing is that I didn't even seek treatment for the pain that my specialist says is caused by LS. I thought it was all connected somehow (still truly think it is), but that means that even if I find relief from LS, I have my main pain on my inner labia/vestibule to deal with. Stupid broken vagina!!

Off my rant! How are you feeling today? Hope you are as pain free as possible!

Sending you big hugs!!

Hello Emalita hun, The specialist in Az., is he located in Phx.? I live in Az. Its a shame that my Dr. retired or I would send you to him. He knew what he was doing. Such a smart smart Dr. and he wasn't afraid to be aggressive and actually do things that other Dr.s would dream of doing.

I am so very sorry that your still having pain. Our woman parts have so many nerves and also when our lower back hurts or tail bone hurts, it can also cause pain around the vagina area. I have a double whammy because I have chronic back pain as well. Also I have hemorrhoids and when they are bothering me it causes pain on my woman parts. uuuggghhh. So I have to try to take care of all of those areas as well. My Lyrica really helps me, perhaps you can ask your specialist to prescribe it.

I have had three biopsy's done. The Dr.s told me that the results came back as LSC. After my wonder Dr. treated me and did surgeries, my third biopsy came back as normal, except for some swelling. But, I still had pain. So I guess now I have Vulvodynia. *shrug* .

I totally understand how you feel sweetie. I always say that my vagina is broken. Its been broken for 6 or 7 yrs. I can't even keep track of the time anymore. But its gotten so much better. I remember when it first started and for about two or more years I was so depressed that I would lay in bed and cry and wish that I would just die. I thought that I would never get better but look at me now. I am sure that one day you will get to where I am. Have faith honey. Don't ever give up. Keep fighting and trying to find that perfect med. or meds.

Write to me any ole time honey. I will support you as best as I can. Use my shoulder to cry on.

xoxoxoxo
Cookie

Hi my dear Cookie! My specialist's address says Paradise Valley/Phoenix (not quite sure if there's a difference). I just flew out to see him (Dr. Fowler) in the middle of March. I live in Wisconsin, and Arizona was so beautiful compared to the dreary, snowy, sloppy mess that was back in WI. I wish the "friend" that had come with me would have been more decent because I would have liked to at least enjoy the sunny beauty on my first trip to AZ (one positive thing to bring back other than just a sore vulva). Instead she made me, since she was driving, sit in the flippin' airport for about 4 hours before our flight. Ugh...useless friends!

I had no idea how much pain my LS was causing until the hydrocortisone cream started kicking in. I was doing so well for the first couple of weeks, but now some of the pain is coming back. I'm so scared that I'm regressing and will lose the progress that I've made. I agree with you...I want him to be more aggressive. Even though I'm terrified of strong steroids and their side effects, I would rather kick this thing in the butt with a strong cream and then work my way off of it. Enough of this up and down crap! I'm thinking of calling his office this week to see if he will give me something stronger, but I'm concerned he won't because he said I have a very mild case of LS. I'm sure you can understand, the pain that comes with lichen conditions is so indescribable, and now that it's warming up outside, it's even worse.

I'm so sorry to hear you have so many different areas of pain. I can't imagine how hard that must be for you, but I'm so happy Lyrica is working for you! My AZ specialist doesn't use pain medication, antidepressants, or anticonvulsants to treat vulvar diseases unfortunately. But I guess that's my fault because that's exactly why I picked him.

I'm at that point now...just laying in bed and crying. I'm so angry and guilt-ridden over all of this because my LS didn't begin until I started overwashing to actually try to help my primary pain complaint in my vestibule (I thought boric acid was causing the acid burn feeling, so I was trying to wash it away). I hope you're right that one day I will find the relief you have. I just can't do this forever.

Thanks for listening to my hopelessness! You're absolutely the sweetest!

Hello Hun, My heart goes out to you and everyone who has Vulva pain. I remember being in the same boat as you. Saying the same things, thinking the same things. Its a shame that your specialist is so far away. When one of my gyno's first discovered what I had, she was treating me with some kind of cream (can't even remember what it was called). It wasn't working so she added an antidepressant and I was thinking "my vulva is in pain, she isn't depressed" hehehe. She then prescribed me Gabbapentin (another useless med.). But I do understand why she didn't want to treat me aggressively. She wanted to start out slow with the hopes that those meds would work. Thats prob. what your Dr. is doing. It really sucks to start out so slowly when all you want is for the pain to be gone completely. But what I don't understand is why he won't give you anything for the pain. While you are seeing him for your LS, perhaps you may want to think out side of the box (hahaha, a vagina joke) for pain relief and google pain specialists or nerve specialists in your area. There are some pain specialists who can numb the Pudendal nerve which runs from your lower back and travels up to your woman area. They don't even have to put you to sleep to do this. They just do a nerve block and its supposed to block the nerve pain. Its just a thought. I hate to think of any woman having to suffer with such pain with out some sort of pain reliever. I wish I could hug everyone and tell them all that it will get better.

I hope your taking it easy. Lay back, sit on an ice pack, eat some snacks and watch a comedy. Anything that will take your mind off of things.

hugs
Cookie