Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 I had a bacterial infection (just regular vaginal bacteria) 6 mo. ago,/ which took two courses of treatment to clear up and then a yeast infection. It was then that my skin flared up. It was purple,widespread and felt damp and prickly. Doctors prescribed nistatin/triamacinolone,hydrocortisone and several other topical treatments. The discoloration got some better and the areas affected smaller, but the prickly pain, feeling of dampness and raw skin areas conintue. My general doctor prescribed Lyrica and that has helped. I went to a vulvar specialist who injected the areas with triamacinilone. That has helped somewhat, but I am still left with raw skin and pain. I have not worked or gone about my life for 8 weeks. I sit with loose clothing on trying to let the skin heal. The specialist thinks it is a dermatitis. If I don't get more relief he wants to do a biopsy. He gave me triamacinolone to use 7 days per month and said I could use hydrocortisone daily. I tried the hydrocortisone for two days and the area flared up again so I didn't use it again. I don't even want to try the topical triamacinolone mixture he prescribed now. I was hoping someone might have some ideas on where to go for help. I feel like the longer this goes on the worse it could become. I feel like I don't know where to go for help. Any advise on what or where I might try? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Hi, you didn’t mention what area you lived in. Maybe someone could suggest a doctor if we had an idea of where you lived. nne From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of jselbridge Sent: Thursday, April 24, 2008 5:54 PM To: VulvarDisorders Subject: new to this problem I had a bacterial infection (just regular vaginal bacteria) 6 mo. ago,/ which took two courses of treatment to clear up and then a yeast infection. It was then that my skin flared up. It was purple,widespread and felt damp and prickly. Doctors prescribed nistatin/triamacinolone,hydrocortisone and several other topical treatments. The discoloration got some better and the areas affected smaller, but the prickly pain, feeling of dampness and raw skin areas conintue. My general doctor prescribed Lyrica and that has helped. I went to a vulvar specialist who injected the areas with triamacinilone. That has helped somewhat, but I am still left with raw skin and pain. I have not worked or gone about my life for 8 weeks. I sit with loose clothing on trying to let the skin heal. The specialist thinks it is a dermatitis. If I don't get more relief he wants to do a biopsy. He gave me triamacinolone to use 7 days per month and said I could use hydrocortisone daily. I tried the hydrocortisone for two days and the area flared up again so I didn't use it again. I don't even want to try the topical triamacinolone mixture he prescribed now. I was hoping someone might have some ideas on where to go for help. I feel like the longer this goes on the worse it could become. I feel like I don't know where to go for help. Any advise on what or where I might try? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 > > Hi, you didn't mention what area you lived in. Maybe someone could suggest a > doctor if we had an idea of where you lived. > > nne > > > > > > > > From: VulvarDisorders > [mailto:VulvarDisorders ] On Behalf Of jselbridge > Sent: Thursday, April 24, 2008 5:54 PM > To: VulvarDisorders > Subject: new to this problem > > > > I had a bacterial infection (just regular vaginal bacteria) 6 mo. > ago,/ which took two courses of treatment to clear up and then a > yeast infection. It was then that my skin flared up. It was > purple,widespread and felt damp and prickly. Doctors prescribed > nistatin/triamacinolone,hydrocortisone and several other topical > treatments. The discoloration got some better and the areas affected > smaller, but the prickly pain, feeling of dampness and raw skin areas > conintue. My general doctor prescribed Lyrica and that has helped. > I went to a vulvar specialist who injected the areas with > triamacinilone. That has helped somewhat, but I am still left with > raw skin and pain. I have not worked or gone about my life for 8 > weeks. I sit with loose clothing on trying to let the skin heal. > The specialist thinks it is a dermatitis. If I don't get more relief > he wants to do a biopsy. He gave me triamacinolone to use 7 days per > month and said I could use hydrocortisone daily. I tried the > hydrocortisone for two days and the area flared up again so I didn't > use it again. I don't even want to try the topical triamacinolone > mixture he prescribed now. I was hoping someone might have some ideas > on where to go for help. I feel like the longer this goes on the > worse it could become. I feel like I don't know where to go for > help. Any advise on what or where I might try? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 > I live in Central New York near Syracuse. I guess I am just afraid and tired. After months and months of going to several doctors and trying multiple creams and one set of injections is that a doctor might not be able to help. I guess I am in the process of trying to get use to the idea that this might be something that I have to live with. However, there must be something that I can use to improve the skin enough to be able to walk around the mall, or go back to work and sit forward in chair etc. Has anyone tried or heard of the trimictalone injections? I read on one website that in rare cases these injections are used. That made me hope that I hadn't done something that is only used as a last resort and might really make things worse. > Hi, you didn't mention what area you lived in. Maybe someone could suggest a > doctor if we had an idea of where you lived. > > nne > > > > > > > > From: VulvarDisorders > [mailto:VulvarDisorders ] On Behalf Of jselbridge > Sent: Thursday, April 24, 2008 5:54 PM > To: VulvarDisorders > Subject: new to this problem > > > > I had a bacterial infection (just regular vaginal bacteria) 6 mo. > ago,/ which took two courses of treatment to clear up and then a > yeast infection. It was then that my skin flared up. It was > purple,widespread and felt damp and prickly. Doctors prescribed > nistatin/triamacinolone,hydrocortisone and several other topical > treatments. The discoloration got some better and the areas affected > smaller, but the prickly pain, feeling of dampness and raw skin areas > conintue. My general doctor prescribed Lyrica and that has helped. > I went to a vulvar specialist who injected the areas with > triamacinilone. That has helped somewhat, but I am still left with > raw skin and pain. I have not worked or gone about my life for 8 > weeks. I sit with loose clothing on trying to let the skin heal. > The specialist thinks it is a dermatitis. If I don't get more relief > he wants to do a biopsy. He gave me triamacinolone to use 7 days per > month and said I could use hydrocortisone daily. I tried the > hydrocortisone for two days and the area flared up again so I didn't > use it again. I don't even want to try the topical triamacinolone > mixture he prescribed now. I was hoping someone might have some ideas > on where to go for help. I feel like the longer this goes on the > worse it could become. I feel like I don't know where to go for > help. Any advise on what or where I might try? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Don't give up. This isn't something that you 'are going to have to live with', there is help out there. If you haven't already, I really strongly suggest you start to search for a physical therapist that works with pelvic pain patients. The symptoms you describe can be the direct result of tight pelvic muscles, especially after guarding sensitive tissues from any form of pain. > > > > I live in Central New York near Syracuse. I guess I am just afraid > and tired. After months and months of going to several doctors and > trying multiple creams and one set of injections is that a doctor > might not be able to help. > > I guess I am in the process of trying to get use to the idea that > this might be something that I have to live with. However, there > must be something that I can use to improve the skin enough to be > able to walk around the mall, or go back to work and sit forward in > chair etc. > > Has anyone tried or heard of the trimictalone injections? I read on > one website that in rare cases these injections are used. That made > me hope that I hadn't done something that is only used as a last > resort and might really make things worse. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 > > > > > > > I live in Central New York near Syracuse. I guess I am just afraid > > and tired. After months and months of going to several doctors and > > trying multiple creams and one set of injections is that a doctor > > might not be able to help. > > > > I guess I am in the process of trying to get use to the idea that > > this might be something that I have to live with. However, there > > must be something that I can use to improve the skin enough to be > > able to walk around the mall, or go back to work and sit forward in > > chair etc. > > > > Has anyone tried or heard of the trimictalone injections? I read on > > one website that in rare cases these injections are used. That made > > me hope that I hadn't done something that is only used as a last > > resort and might really make things worse. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 You need to take care of the raw skin first, then PT would probably help with the underlying issues - that's what happened to me. Had to get the skin under control with topicals first. Obviously in your condition you probably couldn't tolerate direct PT, although you could have skin rolling on your thighs and abdomen which would start releasing some of the nerves and muscles to that area. Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 My exact thoughts too , is getting that skin healthy as a first objective... and that's where the topical E and maybe (hopefully) the T.... can really benefit... it's what that skin thrives on and needs then go from there.. Hugs Dee Re: new to this problem You need to take care of the raw skin first, then PT would probably help with the underlying issues - that's what happened to me. Had to get the skin under control with topicals first. Obviously in your condition you probably couldn't tolerate direct PT, although you could have skin rolling on your thighs and abdomen which would start releasing some of the nerves and muscles to that area. Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 >Were there specific treatments that worked to clear your skin? I used the hydrocortisone when this first started and it seemed to work, but when I used it again and it burned and made things worse. How are you now? Do you have to periods of time when you don't have symptoms or do you have to work on this all the time? > You need to take care of the raw skin first, then PT would probably > help with the underlying issues - that's what happened to me. Had to > get the skin under control with topicals first. Obviously in your > condition you probably couldn't tolerate direct PT, although you could > have skin rolling on your thighs and abdomen which would start > releasing some of the nerves and muscles to that area. > Melinda > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Is topical E just vitamin E capsules that you break open and put on the skin? What is T and where do you get it? Do you put these two things on together and how many times per day? Is there any chance either of these can be irritating? Thanks. > > My exact thoughts too , is getting that skin healthy as a first objective... and that's where the topical E and maybe (hopefully) the T.... can really benefit... it's what that skin thrives on and needs then go from there.. > > Hugs?> > Re: new to this problem > > > You need to take care of the raw skin first, then PT would probably > help with the underlying issues - that's what happened to me. Had to > get the skin under control with topicals first. Obviously in your > condition you probably couldn't tolerate direct PT, although you could > have skin rolling on your thighs and abdomen which would start > releasing some of the nerves and muscles to that area. > Melinda > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Hi there, We abbreviate the hormones with letters instead of spelling them out each time. For example: E. = Estrogen T. = Testosterone P. = Progesterone Some of us have found applying topical Estrogen to our skin really helps with the inflammation you are describing. Several of us use either Estrace (brand name for a cream form of bio-identical estrogen, which is exactly what our ovaries make). I would personally stay away from Premarin (synthetic horse urine estrogen *ugh*). Some have to have Estradiol (main ingredient in Estrace - compounded for a more soothing effect). Compounding takes out any inert ingredients in the Rx (prescription) that may irritate some. Some may not need PT if they indeed ONLY have a condition limited to the skin. Others may have more than one thing going on (like - Interstitial Cystitis, Pelvic Floor Dysfunction, Bowel problems, along with Vulvar pain, etc.) and will probably NEED PT. Tight pelvic floor muscles can refer pain to the vaginal opening, as well as other places. Others may have skin conditions of the vulva, like: Lichen Planus or Lichen Sclerosis as two examples. It just seems to be trial and error for us all - until we dial in the treatment plan that will work for us. Hang in there and be determined not to give up! ~Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Yes. That is exactly what can happen. The nerves for your genital area run all through the muscles in your pelvis. If these muscles stay tight and contracted, this irritates the nerves which in some women cause the 24/7 burn with the red inflammed skin. And I will say, for me, 100%, if it wasn't for myofascial release through my wonderful PT, I would not be were i am today. I've dealt with this for close to 4yrs now. The past year and a half were the worst. I am now, close to 95%. PT is worth the effort. Unfortunately, this is a trial and error kind of thing. And yes, sometimes the topical treatments the docs hand out will indeed cause a flare. You need to find out what works in calming down a flare for you. Warm baking soda baths, or just sitting in a warm bath. Use a bag of frozen peas or I used to use a full cold beer bottle. When the bottle warmed up, I knew it was time to stop. You don't want to cause yourself freezer burn on top of everything else. No soap, dye free detergent, no 'feminine' products. I also use pure coconut oil when I have my period. It really helps with tampons and keeps the irritating blood off of tender tissues. I couldn't tolerate pads, also stay away from Always brands. They are known to irritate. I do use a lidocaine ointment 5% to help ease the pain. It stings a little when I first put it on if I'm flaring but the relief it brings is worth it to me. This whole thing is overwhelming, but if you keep searching you will find the doc who can help you. You may even have to bring the information to a doc who doesn't know much about this but is willing to listen and learn. Don't give up. WE DO get better. dawn > > > I don't understand. Tight pelvic muscles can cause raw skin? I > mean I have skin that is visablly red and looks irritated. Can > physical therapy really help this? Do you still keep looking for a > doctor that can help or keep trying different topical treatments? As > I read these messages it sounds like trial and error and sounds like > often you have to tolerate flare ups when something doesn't work. It > is just overwhelming. Thank you for your respsonse though. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 jselbridge wrote:>>>>>>> I used the hydrocortisone when this first started and it seemed to work, but when I used it again and it burned and made things worse. Steriods can be helpful with some of the vulvar skin conditions, but you have to be very careful with them. They can 'thin' the skin if overused. Some have pain all the time and suffer from generalized vulvodynia. Others may only have pain upon contact, i.e. - inserting tampons, tight clothing, sitting, sex, etc. Unfortunately, some have both kinds. *sigh* Have you found a doc or someone to help you at all? ~Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 As you will learn, everyone is very different. I am mostly symptom free if I keep up maintenance meds and go to PT every few weeks, but I have flare ups occasionally. Anything can be potentially irritating, including estrace (E) and testosterone (T). I have mine compounded in emu oil, which doesn't irritate me like the regular prescriptions. You just have to do trial and error to figure out what works for you. Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 >Thank you. What are your maintenance meds if I can ask. Just trying to write down all the info I can get to start figuring it all out. > As you will learn, everyone is very different. I am mostly symptom free > if I keep up maintenance meds and go to PT every few weeks, but I have > flare ups occasionally. > Anything can be potentially irritating, including estrace (E) and > testosterone (T). I have mine compounded in emu oil, which doesn't > irritate me like the regular prescriptions. You just have to do trial > and error to figure out what works for you. > Melinda > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 > > >>>>>>> I used the hydrocortisone when this first started and it seemed to > work, but when I used it again and it burned and made things worse. > > > Steriods can be helpful with some of the vulvar skin conditions, but you have to be very careful with them. They can 'thin' the skin if overused. Some have pain all the time and suffer from generalized vulvodynia. Others may only have pain upon contact, i.e. - inserting tampons, tight clothing, sitting, sex, etc. Unfortunately, some have both kinds. *sigh* > > Have you found a doc or someone to help you at all? ~Chelle > My general practitioner prescribed the Lyrica for the nerve pain and an antidepressant. I still use both of these meds and have since seen the vulvar specialist who injected the area with triamicinalone. I think that has helped, but I had to go through a very swollen and bruised few weeks. The bruising still isn't gone. He then gave me the Lidocane, but it was VERY irritaing for me and caused the whole area to be red and inflamed. This happened again with the Hydrocortisone he said to use, and I haven't even tried the topical Triamcinalone out of fear. So I am using nothing right now except the oral meds. The next step the specialist has advised is a biopsy. Anyone had one of those? What are the general thoughts on that? Maybe I should try a second opinion. I could go to New York City,Albany,or Buffalo if anyone had a recommendation for doctors in these areas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 >Thank you for your informative brief! Even my husband got a kick out of my vitamin E reference. This really helped. I called my doctor today to see if I could get the Estridol (since my skin seems to react to all the recent topicals), but she said she didn't want anything on my skin right now. Water only to wash and that's all. I wish there was more for pain. That is part of my fatigue I think (the rest emotional even with the antidepressants!) Thank you. > Hi there, > > We abbreviate the hormones with letters instead of spelling them out each time. For example: > > E. = Estrogen > T. = Testosterone > P. = Progesterone > > Some of us have found applying topical Estrogen to our skin really helps with the inflammation you are describing. Several of us use either Estrace (brand name for a cream form of bio-identical estrogen, which is exactly what our ovaries make). I would personally stay away from Premarin (synthetic horse urine estrogen *ugh*). Some have to have Estradiol (main ingredient in Estrace - compounded for a more soothing effect). Compounding takes out any inert ingredients in the Rx (prescription) that may irritate some. > > Some may not need PT if they indeed ONLY have a condition limited to the skin. Others may have more than one thing going on (like - Interstitial Cystitis, Pelvic Floor Dysfunction, Bowel problems, along with Vulvar pain, etc.) and will probably NEED PT. Tight pelvic floor muscles can refer pain to the vaginal opening, as well as other places. > > Others may have skin conditions of the vulva, like: Lichen Planus or Lichen Sclerosis as two examples. It just seems to be trial and error for us all - until we dial in the treatment plan that will work for us. > > Hang in there and be determined not to give up! ~Chelle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2008 Report Share Posted April 26, 2008 I don't use a lot of maintenance meds. I use emu oil for comfort or coconut oil, a dab of estradiol daily at bedtime - before I got pregnant, I was trying testosterone as well but didn't get far enough to see if it worked and will try again after baby comes. Also, my doctor wants me to try a steroid for the clitoral area (my problem area at this point) after baby - probably betamethasone or triamcinolone. I also do regular PT, eat a gluten-free and mostly whole foods diet, see a chiropractor regularly - for me, it's about having a whole healthy lifestyle to be better, not just what meds I put on. That's only one piece of it. I tried alot of other meds that didn't work. That is the hardest part for me, the trial and error of it all. Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2008 Report Share Posted April 26, 2008 If you can get to New York City, you could have an evaluation at Beyond Basics PT - they are some of the best and would be able to tell you if PT would benefit you or not. There must be a good dr. there too - have you searched the database? Isn't one of the more famous docs in New York? Melinda Quote Link to comment Share on other sites More sharing options...
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