on 10:24PM at Sep 20th, 2012
I just joined a couple of days ago .. Maybe I was expecting too much.. But thought this would be a place to chat and discuss this condition.. I posted a question 2 days ago and have yet to get a response... I also don't see a lot of replies to anyone on anything?? I was hoping to get experiences and "tips" and support... But again.. do not see a lot of anything... Not even an answer to my question 2 days ago.. Seems like people post a story and leave it at that.. which it is helpful and comforting to read other's stories and know I am not alone BUT was looking for more.. Can SOMEONE, ANYONE PLEASE tell me is this the normal? Am I missing something?? I am not trying to be difficult .. I just really thought this would be a place where "discussions" took place and tips shared.. or if someone was having a flare up there would be support from others that KNOW how that person was feeling.... I just don't see anyone really saying anything... not even one response to my posting about help in navigating this site or a answer to what the stages are.. Please someone just respond... acknowledge ... anything...
Thank you in advance.... **JayEllen**
on 04:04AM at Sep 21st, 2012
Hello I am sorry I am new too so hesitate to say anything because I am lost & confused about it all..I have read all I can about the topic ,looked at google images (wish I hadn't) Things I would like to know Nurse says these are all questions you can ask the derm when you see him My apps not tilll Nov 11th I am scared it hurts and it sucks!
I read somewhere that all these which bumps have the potential to be cysyt? or whatever they are I have only had a few so far but they are painful and even though they are gone now those areas still hurt and feels sometimes like a needle is stuck in there But like I said I dont have any answers just questions .Not sure where we are even suppose to post questions ? Hope to find some discussions where people actually talk about it . Good luck feel free to add me We can be lost together if you like
on 12:46AM at Sep 22nd, 2012
First Thank you for responding... I am new to this too (this forum) and with having a name for this which I have been living with for 30+ years... I have been to numerous Dr's and several surgeons and nobody ever said "you have this..." Of course I never went to a dermatologist for it... DUH me... just didn't associate huge painful lumps that get full of infection with a dermatologist... anyway... the site says "chat about" and "share" and "talk to others" so I assumed .. that's what this site was for.. to talk and discuss and ask others what their experiences have been and maybe what has helped them etc. I only know what I have been told (which isn't much) and have been told they are subaceous cysts (maybe start off as something else but by the time I went for help were subaceous cysts in full flare up)
As I mentioned somewhere.. the biggest problem was that the pain does not match the look of them.. and people don't GET that the pain can literally be dibilitating! can't move well.. can't wear clothes.. but all they see is a red bump.. I am with you.. No appt. til Nov 11th?? Geeez.. can't get you in sooner? well.. keep me updated and I will share anything I find.. If I find a more active supprt group I'll let you know.. I won'tpost on here I don;t know if that would be.. politically correct.. I'll stay subscribed to this thread so.. you can always catch me here... It's a crap condition and a painful condition but I have learned to live with.. I don't even go to Dr's anymore.. have learned to take care of myself... Don't be afraid... In between flare ups.. life is normal!! HUGS~ **JayEllen**
on 03:21AM at Sep 22nd, 2012
Hello ,Yes I too have been looking around for support groups . I SO understand about the red lumps from hell ! I had one on back of my neck Hubby said its just a pimple I wanted to wipe the JUST off his lips lol .It felt huge on the inside to me started witha simple white head? Dr said it was a skin tag I said NO it is not!
Second visit she said its a boil I said I dont think so boils dont start with a center then a bump forms .
She kinda sighed and said ok I will refer you to a dera.
When I went in with these cluster growths on both sides of my groin she started to pay attention .
I cant imagine 30 years of this ! In hindsight I realize I have had it for some time ,I have been one very lucky gal to not have a severe case ,though I think I had what is called a flare up 2 weeks ago scared me and oh myyyy it hurt !
I find warm showers help ease it off a little I bought some liquid castiile soap and added tea tree oil it sooths and it antibacterial I have switched to Fial antibacterial hand soap as well and was prescribed Clotrimadem that was not her original choice but the cream she wanted me to get was $463 but I have no medical coverage this was $85 but a big jar I use it 3 times a day .I also tore up a clean old flannel sheet and put strips under my breasts and along the groin to help keep skin from rubbing.. I really wish I had more to offer you ,but I am still floundering around ,trying to come to terms with it .
I had a stent put in my heart end of April and it didnt scare me as bad as this does ,After your cysts are gone do you still feel pain where they were ? I do and it makes me wonder can they come back in same place ?
I haven't even told anyone but my Husband that I have this ,course he saw me crying .I resorted to sitting on cold wet face clothes for one last week .
What are some of the things that you do that bring you some relief? I don't know if we are maybe missing where to post or ask or chat but if I find something I will be sure to let you know as well .
on 04:44PM at Sep 22nd, 2012
Oh yes... again.. my biggest issue has been that the pain doesn't match the look of it... and people don't get that that "boil, pimple,cyst" brings horrible horrible pain! and yes.. again.. I have sat in a hot tub for hours just to get some relief... I have found that warm heating pad (moist not dry) or warm water makes the pain disappear.. BUT as soon as you remove the heating pad or stand up out of the water BAM! the pain is back!!! full force!!
Mine never go away completely (except when I had surgically "cut out") and even then they came back just to one side or other of original at some point down the line.. I always have a hard knot after a flare up and I call that being dorment.. (all my terms I have come to use) but no pain... The polonidal one (base of spine) was explained when removed as having "tentacles" and if every single one wasn't removed would come back.. and it did...
again never been to derma for this.. only general prac and surgeons and nobody gave it a name.. Just said "some people have this problem"
also I am gathering that this is not a "skin" disease but a type of autoimmune one.. and most treatments are for symptoms and not the cause... of course I am also finding that they don't know the cause.. many theories.. and many triggers... again always different opinions based on where you look.. hormonal triggers some say yes some no.. food triggers.. weight triggers... environmental triggers.. yes no maybe... Aaaaa! At this point I am not looking for a cure.. I am just trying to find how to shorten the time or severity of flare ups.. and that would be from others who have them and have tried every medical or home remedy under the sun etc. Hence the reason I sought a support group..
As for where I find relief.. again.. Moist heating pad or just standing in shower and holding the shower head on spot.. used to soak in tub (but have since removed tub and just have a shower). I have tried numbing cream which helps a little with the outside pain when even clothes touching causes pain but this does NOTHING for the internal pain... the pain that comes with ever teenie muscle movement etc. I have had all kinds of pain meds. and none worked except darvocett (which is a glorified aspirin) But it actually helped some BUT that has been removed from market cause had huge side effects (FIGURES!) Dr used to look at me funny cause he would Rx vicoden or oxy etc. and I'd say No Thank you.. darvocett! Cannot explain WHY it helped but it did.. Now I just eat ibuprofen like candy for a few days (when pain is at worst and cysts almsot ready to burst open) and hope that my liver doesn't die!! That's all I have...
on 03:56PM at Oct 3rd, 2012
Hi Jay and Sauci.....
I have had this since 15-16 and only got a name years later. I have been frustrated by this supposedly " support group".
I would like to make a suggestion, how about we least any remedies, home or otherwise) and see what we can come up with. I have joined several groups hoping to come up with something, however, apart from complaining it seems most people are reluctant to share or help others.
I get frustrated with these forums, you would think that after years of pain and trials someone maybe forthcoming with any suggestion, even one that works for a week( I would welcome that, wouldn't you?). I pray and hope that our attitudes change and soon.
on 08:44PM at Oct 3rd, 2012
I looked elsewhere for other support groups but have not been able to find any that are what I was looking for...
and I agree with you 100% that people just seem to post and share their story and how miserable this is BUT then don't seem to want to share further..
I am with you about posting what we have tried.. or what has or has not worked etc. (which is why I was looking for support along with just not being alone) Can't hurt to give it a shot.. I think we should start a new forum with a headline that will capture the attention of people who may as you, Saucy and I are looking for and will maybe participate in... I have a support group for animals with diabetes and have been either in or owner of this type of group for 10+ years and when someone posts for help or need experienced suggestions .. many many people respond!! Sharing their trilas and errors or experience or hints of how they dealt with a particular situation..I guess I was looking for this in this group.. and was shocked that I was completely ignored basically when I asked for help etc.
Sharing a certain disease or situation I just thought that many would be happy to help or make suggestions or even just acknowledge and say "I have no helpful advice but know you are not alone" SOMETHING... Anything..
So if Saucy is still following this link.. I'd like to hear what you both think would be a eye catching name to maybe get things going and get some responses and support and advice etc.
If that doesn't work.. well then.. I just don't know ... THANK YOU for replying Tyno!! That alone means a lot..
on 02:48AM at Oct 4th, 2012
Hello , Yes I have been following though not so often as I had all but given up . I have another "lump " in same spot of back of my neck and it hurts like hell and no People don't get it ,but it feels the size of an egg inside .
As to what I have been doing I stand in the shower with hand held and use dial antibacterial soap in the usual areas ,rinse off well and apply my Clotrimaderm . I know there is a stronger cream but I as yet don't have medical,and this was $85 . The washing really does seem to sooth for a little bit . I was told by my Nurse to use hot compresses on the one on my neck to try to get it to burst but it hasn't ,
I read that tea tree oil is suppose to be good for the skin as far as healing ,the concentrate is very strong so I mixed some into my liquid castile soap .I also put in a few drops of peppermint oil. I use it on occasion instead of shampoo as my scalp itches too at times .Now this stuff sort of tingles? may feel like a burning at first , but it calms down quickly .
For hot compresses when I had cysts on Labia I put a plastic bag on my chair and sat on a hot cloth .
I WAS doing this with a cold cloth as it really eased the pain but was told not to do that as it stops the cyst from coming to a head . Which it didnt and I can feel it trying really hard to come up again.
I don't know that we even need start another group as doesn't seem anyone uses this much anyway and just maybe some new people will be able to read or ask questions here .
Seems there are a lot of us wandering around looking for someone to talk to us .
Oh before i forget when the cycst are growing I use one those bags you heat in microwave I have a long slim one and a square one anyway the long one I wrap across back of my neck or put between my legs .
I cant say that it has helped a bunch as of yet but we wont know if we dont try .
Hope you's are not having too much discomfort (yeah right) I never thought i would learn to live without wearing panties lol . Oh BTW I am also blessed with a stubborn yeast problem I never knew it could be anywhere ? I always thought it an internal thing,but the castile liquid soap with tea tree (antibacterial and peppermint anti itch sooths that some . Nurse also suggested poly sporin but that stuff is expensive I an seriously thinking about getting some monistat or canesten see if that soothes the burning itch .
Sorry I am rambling but there is so much goes through my mind and I have really been looking forward to someone to actually talk to someone about this .Thanks for listening and I am always open for new suggestions
on 09:44AM at Oct 9th, 2012
Hope you are better. If you do feel like chatting try curehs.us its a new site and I think if we support it it will help. there are pages for people to post remedies and medications. Pages for GPs and patients and even better a live chat room for people to connect and what not.
Its been set up by a guy with HS and his buddy .
on 06:44PM at Oct 9th, 2012
tories here and responding to a cpl new people is my hope TY I will check that out ,have started reading through some of the some of the new people here . Tis my hope that it will inspire others to join in.It's rather sad when you see someone story has been read 35 times but no one stopped to say hello . But yes a chat room would be great ! I do get frustrated researching things that never are quit what I am looking for . Hope you are doing well I continue to get those other mysterious red hard lumps all over that burn & itch something fierce ,makes for a grumpy Mama bear at times.:) Can Also feel 3 different cysts but there is nothing showing yet uggggh. Thanks for the heads up stay well x
on 08:52PM at Nov 5th, 2012
Hi, I am new here also and saw your post. I know what it is like to need to talk with someone concerning this dreadful disease. Let me explain a few things. I have had this disease since I was 14. It wasn't until I was 38 that it went from bad to severe. I had "real" Doctors back then. Now I have nothing. But when I did have doctors they knew about this disease and helped me through drastic measures. I had to have half odf the vagina removed. Many recontructive surgery's and hundreds of surgery's before all of that. Also many dermabrasions that did not help. I would like to give a few hints. One is to try A&D
ointment. I have had a flare now for a year. very little antibiotivs. I switched from desitin to A&&D ointment which gives me immediate relief. Another thing that ALWAYS works is the first morning stream of urine. Pee in a cup (midstream) and cover. Use a cotton ball to dab the areas. You may not feel relief right away buty soon you will as this is your own immune system fighting this. In other words something like your own DNA that no one else has. NOW...please be aware that to get from point a to point b with b being the end of a flare...you need IV abx (Antibiotics) This can be done at home. An IV nurse comes to the house inserts the line and you give yourself the treatments. After two weeks of this 3xd you will be done with the flare and if you are as bad as i aam it should carry you about four yerars. You also may have trial and error with abx. Mine was velosef and now clindomiacineabx cap. Only because I can get them online without a script. The trick here is to convince the dr. that you need to try this IV method. If need be I can actually wrote you out a letter to send to the dr. who treated me and who had said to me..."You tell us what to do...because we do not know what to do any more." I had thought about a couple of hospital stays having IV treatments and the flares disapearing. So I mentioned it...."Hey Kathleen why don't we try this. She contacted my plastic surgeon and he said "Go for it" We did asnd the home IV worked. NOW I have a question also. Back then I had a general surgeon, plastic surgeon and kathleen who was my primary. I now have a PA who I just met the other day and she knows nothing about the disease. She wants me to find a Dr. Yeag right. What kind of Doctor are all of you seeing? kali55
on 09:07PM at Nov 5th, 2012
I really think that your thinking was fine as far as a derm. I went to a derm when it was on my face. But when it went to the groin area I just will not go to one. Not in this state. Money is all that means anything to them. My best bet now is to be able to find the surgeon who helped me some years ago.. That's why I asked what kind of a dr. is everyone seeing.
This disease is scary to everyone not to mention all of the years you live not even knowing it is a disease. We have little to no funding and I have to ask...does anyone care? We have been sent to pasture with only us to help one another. One year ful of steady pain has done a job on me with other problems besides. You need to try all of the suggestions that people give to you. One at a time. Do not under any circumstances put one chemical (ointment) over another. Give a couple of days between one an the other or you will make matters worsde by causing a chemical reaction. I'm going through hell myself right now but I'm at the age now that I hope I can help others. I can find my way. Although i sure could have used a sholder to cry on last night lol. Together we will find a way. No one but us knows about this disease and we have a responsability to let people know. To get the name of the disease out there. We need to put up a fight like we never have done before to get funding for this closet disease and a disease BTW that causes many suicides. If anyone ever thinks about this please lets make a pinky promise that we will come here to talk and not take those drastic measures. OH and one thing that gets me through this???? I look at others who are worse off than me and yell at myself for feeling sorry for me :) <3