Question:
i just joined this group yestarday and have already got some good advice that i will start trying when i can get myself out of the house to go buy some things. i have p. all in my private parts and it is the most alfull place to have it....i think. i have 3 sons, ages 28, 25, and23....my 2 youngest have scaly p. all over ,except there private parts...THANK YOU GOD FOR THAT...so far the only relief i get is from steroid creams and i can only use them on the week-end....so rest of the week i'm in misery. this never showed up until i was 35 and broke my tail bone...as it healed from the break and the bruising went away it started to itch...which i took as a sign it was FINALY healing up. if you have ever broke that bone....you know there is nothing they can do for you....it was a good 3 months befor i could even cough without a stabbing pain in my tail bone...i think this is when my p. started.... my childrens started when they were9 and 17 yrs old. my 25 yr old also has arthritis and the two do hand in hand together. they go to tanning beds and that helps them alot! i dont see tanning as a way for me to be helped.. i have only went to a derm. doc once and he did a biopsy to confirm this was invernt p. it is a VISIOUS cycle of itch....scach.....bleed.....scab.....itch....scrat ch... you can see what i mean. i hate sex now because of the pain and itch and even the thought of what my hubby might really be thinking...i am very depressed and anorixia is a big part of my life also. i am 5'2" and i weight 93 lbs. most of the depression can be linked to the p. my diet my be playing a big part in the way my p. is taking over all the cracks in my body...its behind each ear...ins growing in each ear...thank god i have small boobs... its not there...lol... not really something to laugh about.... i have read about some of you taking that shot...embrel?? is it working for you....do you have it in the same place and its working for you??? and what about elidel cream....is it working for some of you??? i will be very happy to read all your comments and answer each one of you back if you would like. i cant tell you how much i am looking to your answeres.... sorry if this is to long...just keep thinking of more to say.... thank you linda77
linda whewwwww sorry your dealing with so much ..first you really should post in the psorisus with this more people will respond with help . personally enbrel has been awsome for me and my sister.
Hi Linda,
Welcome to the Board. :cool: Nice to meet you. You've come to a very special place. A lot of nice and helpful people post here. More important, it's great to FINALLY be able to vent, ask questions, exchange info, or even share some laughs with people who truly understand.
I figured that you'd get a better response if you told your story in a separate thread, so I posted a copy of your introdudction to us in this thread: .
I hope this helps.
Good luck. Keep us posted and please don't be a stranger.
Mike
Linda: Very glad you posted -- I know how difficult this can be to talk about.
I have this problem, also; mine is inverse so my symptoms are limited to redness, inflammation, horrific burning, and fissuring (and infection as a result). I'm presently being treated by my PCP, my dermatologist, my pelvic surgeon, a rheumatologist, and a vulvar specialist.
Sadly, I am not being given alot of hope at this point. My current treatment regimen consists of the use of topicals -- I alternate, one day using Cutivate (med. strength steroid) and the next day, Protopic (immunosuppressant). I'm also using estrogen cream, 2 nights a week, and lidocaine cream as needed for pain.
Systemically, I'm being treated with Celebrex and sulfasalazine and am being told to be patient and give this a good few months to see if it will make any difference. Thus far, it has not helped with the skin problem.
I've also been given an unbelievably looooong laundry list of skin care do's & don'ts which I would be happy to share, if you're interested.
My dermatologist HAS proposed UV treatment -- in her opinion, doing this on my own would be more cost-effective as I would have to pay a co-pay if it were done in her office. I have not tried it yet as there is the obvious difficulty with getting direct exposure to the particular problem area. :eek: She's has also mentioned the possibility of my trying Enbrel but I hesitate to go there just yet -- I am a nursing student and have some real concerns with working in a hospital environment with a suppressed immune system. Already the sulfasalazine is causing me some problems with recurrent yeast and I am being told this could prove to be a real problem due to the immunosuppressant properties of the drug. (Bit of, "damned if ya do ... damned if ya don't!")
Breaking the "itch-scratch cycle" is imperative so I would really encourage you to pursue a more aggressive treatment regimen. Though there has been little change with the pain experienced with intercourse, my day-to-day comfort has increased dramatically ... and for that, I'm thankful.
If you need someone to talk to, I'm here ...
Warmly,
Cat
thank you for answering my post....i think i am finely getting some answeres to my questions...you said you were a nursing student...so i figure you may a little more knowledge on this than the adverage lay person. boy, you see alot of drs. i have onlysee a derm. 1 time about a yr. ago... do you think i need another dr. besides a derm.?..i know i should atthe very least i should make another appt. with him. i just HATE having to show them my parts that are yucky.... it took me suffering for 6 yrs. before i finely broke down and went to mt reg. doc.....she treated me for 2 yrs. as yeast infections and so on....i ask her it i could have p. down there as i have 2 kids with p. she told me you dont getit there. she was WRONG and i wonder how mant other docs. dont even know about this. anyway thank you for the encouragement and advice...i will try anything at this point!!!!!!
Hi Linda: Yes, I would definitely encourage you to either follow-up with your dermatologist, OR seek a second opinion with another. As you well know, the psychological impact that chronic health problems can have oftentimes is worse than the physiological discomfort. And, speaking frankly, when it affects ones sex life, the ramifications can be even more far-reaching. IMHO, being a proactive patient puts at least some measure of control back into ones hands. It is important, I think, that you not lose your "fight."
I absolutely understand how difficult it can be to put ones "parts" on display -- it certainly seems only to add insult-to-injury, as they say. I think the fact that 3 out of the 5 doctors that I am seeing are female has helped a great deal and has made it somewhat easier for me to pursue aggressive treatment. You might seriously consider a female dermatologist. Having said that, though, I think finding a derm who is both knowledgeable & experienced with treating this particular area AND incredibly sensitive is even more important, irregardless of gender. Being comfortable with your caregiver (and able to speak candidly about this) is crucial, I think.
In a nutshell, here's what I'M doing, skin care-wise. (Apologies up front if my bluntness offends anyones sensitivities; I'm afraid I have very little shame left, with my history!)
~~ I am following the laundry instructions that were given to me -- that is, I wash towels, underwear, and jammies (in other words, everything that comes into direct contact with the area) with 1/2-a-scoop of All Free & Clear detergent, and I skip the fabric softener, both liquid & dryer sheets, with these items.
~~ I'm wearing ONLY cotton undies -- the plain Jane kind. (No more thongs, doggone it!) When I'm at home and able, I wear flannel jammy pants w/o underwear.
~~ I shower using Dove for sensitive-skin soap, and use only my hands, veeeeeery gently. After showering, I pat dry; a blow-dryer can also be handy here. It is important that you not abrade the skin.
~~ I apply the topical-of-the-day directly to the problem areas, and use Cetaphil cream on surrounding areas.
~~ I use no panty liners, pads, etc. (have had 4 reconstuctive pelvic surgeries and have no period). If moisture is a problem, I'll change undies.
~~ Following restroom visits, I don't use baby wipes. For clean-up, I use a peri-bottle filled with warm water and a small amount of baking soda, and then pat dry using white, unscented tissue.
~~ (Again, pardon my candor ... :o :o :o ) I use pure Vitamin E oil for lubrication prior to sex. Afterwards, I have my handy-dandy washcloth (that's been washed using aforementioned laundry instructions) for "the run to the bathroom" and then tidy up by rinsing with the warm water/baking soda solution. I'll then apply my topical-for-the-night.
~~ I generally have a great deal of discomfort (for at least one day) following sexual activity, especially if there's any fissuring. If it is unbearable, I'll apply a small amount of lidocaine cream. I use it sparingly, though, and only when needed.
~~ I DO NOT scratch -- scratching provokes inflammation and secondary changes to the skin. Thankfully the above measures are generally soothing to the area and minimize itching (my biggest complaint is soreness and/or burning). I suspect the topicals keep itching under control, as well.
I hope this is helpful to you, Linda, and that it brings at least some small measure of comfort to you to know that you're not alone. Please don't lose hope! :)
Answers:
linda whewwwww sorry your dealing with so much ..first you really should post in the psorisus with this more people will respond with help . personally enbrel has been awsome for me and my sister.
Answers:
Hi Linda,
Welcome to the Board. :cool: Nice to meet you. You've come to a very special place. A lot of nice and helpful people post here. More important, it's great to FINALLY be able to vent, ask questions, exchange info, or even share some laughs with people who truly understand.
I figured that you'd get a better response if you told your story in a separate thread, so I posted a copy of your introdudction to us in this thread: .
I hope this helps.
Good luck. Keep us posted and please don't be a stranger.
Mike
Answers:
Linda: Very glad you posted -- I know how difficult this can be to talk about.
I have this problem, also; mine is inverse so my symptoms are limited to redness, inflammation, horrific burning, and fissuring (and infection as a result). I'm presently being treated by my PCP, my dermatologist, my pelvic surgeon, a rheumatologist, and a vulvar specialist.
Sadly, I am not being given alot of hope at this point. My current treatment regimen consists of the use of topicals -- I alternate, one day using Cutivate (med. strength steroid) and the next day, Protopic (immunosuppressant). I'm also using estrogen cream, 2 nights a week, and lidocaine cream as needed for pain.
Systemically, I'm being treated with Celebrex and sulfasalazine and am being told to be patient and give this a good few months to see if it will make any difference. Thus far, it has not helped with the skin problem.
I've also been given an unbelievably looooong laundry list of skin care do's & don'ts which I would be happy to share, if you're interested.
My dermatologist HAS proposed UV treatment -- in her opinion, doing this on my own would be more cost-effective as I would have to pay a co-pay if it were done in her office. I have not tried it yet as there is the obvious difficulty with getting direct exposure to the particular problem area. :eek: She's has also mentioned the possibility of my trying Enbrel but I hesitate to go there just yet -- I am a nursing student and have some real concerns with working in a hospital environment with a suppressed immune system. Already the sulfasalazine is causing me some problems with recurrent yeast and I am being told this could prove to be a real problem due to the immunosuppressant properties of the drug. (Bit of, "damned if ya do ... damned if ya don't!")
Breaking the "itch-scratch cycle" is imperative so I would really encourage you to pursue a more aggressive treatment regimen. Though there has been little change with the pain experienced with intercourse, my day-to-day comfort has increased dramatically ... and for that, I'm thankful.
If you need someone to talk to, I'm here ...
Warmly,
Cat
Answers:
thank you for answering my post....i think i am finely getting some answeres to my questions...you said you were a nursing student...so i figure you may a little more knowledge on this than the adverage lay person. boy, you see alot of drs. i have onlysee a derm. 1 time about a yr. ago... do you think i need another dr. besides a derm.?..i know i should atthe very least i should make another appt. with him. i just HATE having to show them my parts that are yucky.... it took me suffering for 6 yrs. before i finely broke down and went to mt reg. doc.....she treated me for 2 yrs. as yeast infections and so on....i ask her it i could have p. down there as i have 2 kids with p. she told me you dont getit there. she was WRONG and i wonder how mant other docs. dont even know about this. anyway thank you for the encouragement and advice...i will try anything at this point!!!!!!
Answers:
Hi Linda: Yes, I would definitely encourage you to either follow-up with your dermatologist, OR seek a second opinion with another. As you well know, the psychological impact that chronic health problems can have oftentimes is worse than the physiological discomfort. And, speaking frankly, when it affects ones sex life, the ramifications can be even more far-reaching. IMHO, being a proactive patient puts at least some measure of control back into ones hands. It is important, I think, that you not lose your "fight."
I absolutely understand how difficult it can be to put ones "parts" on display -- it certainly seems only to add insult-to-injury, as they say. I think the fact that 3 out of the 5 doctors that I am seeing are female has helped a great deal and has made it somewhat easier for me to pursue aggressive treatment. You might seriously consider a female dermatologist. Having said that, though, I think finding a derm who is both knowledgeable & experienced with treating this particular area AND incredibly sensitive is even more important, irregardless of gender. Being comfortable with your caregiver (and able to speak candidly about this) is crucial, I think.
In a nutshell, here's what I'M doing, skin care-wise. (Apologies up front if my bluntness offends anyones sensitivities; I'm afraid I have very little shame left, with my history!)
~~ I am following the laundry instructions that were given to me -- that is, I wash towels, underwear, and jammies (in other words, everything that comes into direct contact with the area) with 1/2-a-scoop of All Free & Clear detergent, and I skip the fabric softener, both liquid & dryer sheets, with these items.
~~ I'm wearing ONLY cotton undies -- the plain Jane kind. (No more thongs, doggone it!) When I'm at home and able, I wear flannel jammy pants w/o underwear.
~~ I shower using Dove for sensitive-skin soap, and use only my hands, veeeeeery gently. After showering, I pat dry; a blow-dryer can also be handy here. It is important that you not abrade the skin.
~~ I apply the topical-of-the-day directly to the problem areas, and use Cetaphil cream on surrounding areas.
~~ I use no panty liners, pads, etc. (have had 4 reconstuctive pelvic surgeries and have no period). If moisture is a problem, I'll change undies.
~~ Following restroom visits, I don't use baby wipes. For clean-up, I use a peri-bottle filled with warm water and a small amount of baking soda, and then pat dry using white, unscented tissue.
~~ (Again, pardon my candor ... :o :o :o ) I use pure Vitamin E oil for lubrication prior to sex. Afterwards, I have my handy-dandy washcloth (that's been washed using aforementioned laundry instructions) for "the run to the bathroom" and then tidy up by rinsing with the warm water/baking soda solution. I'll then apply my topical-for-the-night.
~~ I generally have a great deal of discomfort (for at least one day) following sexual activity, especially if there's any fissuring. If it is unbearable, I'll apply a small amount of lidocaine cream. I use it sparingly, though, and only when needed.
~~ I DO NOT scratch -- scratching provokes inflammation and secondary changes to the skin. Thankfully the above measures are generally soothing to the area and minimize itching (my biggest complaint is soreness and/or burning). I suspect the topicals keep itching under control, as well.
I hope this is helpful to you, Linda, and that it brings at least some small measure of comfort to you to know that you're not alone. Please don't lose hope! :)
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