new girl/hs

[25monkey]

hi, sat here in total shock trying to get my head around this,never realised how many of us there are suffering from hs ive read most of the posts.just crying, smiling and crying some more.thought I was on my own with this hs..Doctors and speaclist not very helpful....Dont normally disscuss my condition as I find it very embrassing.
I started with the silent one,{thats my nickname for it}in 1994 after a routine operation I developed a swelling in my right breast which they said was a cyst. after numerous operatins and miss diagnois they removed my breast. 5 years later it happened again in my other breast also being removed,with no explantion to what it was or why..just got on with my life..2004 that was when i developed again this lumps in my groin area and buttocks..so severe and infected became quite ill.more surgery this time I had a large cone area emove from mt inner buttock and the area was left open to heal from the inside out/took 8 weeks to completey heal..
been in remission for another 5 yrs again .but has come back with revenge 3wks ago counted 15 lumps in my groin area very sore and 2 were very large and infected. started on a course of tablets for 8 wks no antibiotics this time. doctor said the tablets were what they give when you have chronic acne.If dont work back to more surgery again as a last resort.
just in total shock at momment,  thanks for listening to me x hide:

[johnboy]

Hello

You have certainly been through it with this disease, one of the poorest experiences I have read about and I cross my fingers and everyhting else things go well with the medication, you will not be looking forward to any more surgery.......it sounds horrendous what has happened to you.

I am new to the forum and the disease myself and have yet to be professionally diagnosed but I know what the problem is now. I am certainly not able as yet to offer anyone any advice other than I think it is good for you to use this and maybe other forums as it is good to talk even if it is simply writing your thought and sending it, I think it gives some relief if you are not talking with others personally about the condition. I am sure you will get not just a sympathetic ear but also a an experienced one which will help.

Take care.

John

[25monkey]

thanks for the reply and kind words john...I think I was more shocked then any think when I found the forum .And  knowing that there are others who are experincing the same condition. Because of the embrassment that goes with HS, when your having a bad day or feeling really ill, you cant tell people why or whats wrong ..so you suffer in silence, so Im glad I have found this forum..So any info or help from this forum will give me some hope or even releif. we have a speaclist at our local hospital but his bedside mannner isint much good .
my local gp she is very good,but like so many dosen,t know how to deal with the condition.
john you said you self diagonsed, did you have the same problems getting someone to confirm what was wrong with you..and how do you cope, do you self treat your hs .and have any good tips other than antibotics   

[25monkey]

thanks for the reply and kind words john...I think I was more shocked then any think when I found the forum .And  knowing that there are others who are experincing the same condition. Because of the embrassment that goes with HS, when your having a bad day or feeling really ill, you cant tell people why or whats wrong ..so you suffer in silence, so Im glad I have found this forum..So any info or help from this forum will give me some hope or even releif. we have a speaclist at our local hospital but his bedside mannner isint much good .
my local gp she is very good,but like so many dosen,t know how to deal with the condition.
john you said you self diagonsed, did you have the same problems getting someone to confirm what was wrong with you..and how do you cope, do you self treat your hs .and have any good tips other than antibotics   

You say your going to the hospitail on the the 12th nov John please keep a open mind regarding surgery,even though you have read about my experience,evrey one is different and your Hs could be suited for surgery please dont be put off by my experince.and i must say HS has not come back in that area after op, but have got deep scaring.all hospitails are different in there treatments and im uk based are you . regards D

[johnboy]

Hello, I am UK based also.

When I say self diagnosed, I mean I have not actually been diagnosed but I know it can only be HS but I only actually realised last week and found out what HS was by searching the internet. My gp is pretty useless as wa smy previous and over the last couple of years this has got much worse, the past 6 months really bad and I am only seeing a surgeon next week after really having a go at my GP and insisting on nothing else. So I am just readinbg through everything I can now about HS and trying to put things into place as I can. I found out after searching yesterday that the surgeon I see next week specialises in upper gastroentrology so I am unsure as to what he is going to make of my groin / testicles, lol, but we will see. I have a feeling he is the wrong surgeon for me to see but it has been arranged for 7 weeks now so if he knows nothing I guess he will refer me to someone who does.

It is good to hear that the surgery has been succesful in the areas you have it besides the scarring, but you may be "lucky" (sorry to say that word to you, but maybe humour is part of the relief of this forum) as many many others I read about seem to have the HS back in same area after surgery. I am possibly thinking things are worse than they are but after reading about stage 1, 2, and 3 I think mine may be at stage 3 as it certainly seems to be exactly the same as I read about so I am particulary interested in other peoples surgery. I may be wrong however as I do not really know how long I have had HS although I figure it has been bad for 2 years and now I am getting abcesses frequently, flare ups maybe twice a month and each time I am getting multiple abcesses behind each other upto 5 at a time and big, golf ball size and bigger. I also have 2 areas with constant weeping from holes in my skin. This has been like this for possibly 6 months, my GP is clueless to say the least and just does not seem to want to know me and when I mentioned HS to him this week he was very dismissive and just said mention it to the surgeon but he did not seem to take it seriously, I think he gets peed off as soon as I mention doing my own research....but what else can you do after years of pointless antibiotics that don't do anything but make you ill???

I am quite upbeat about it all, it is good to find this forum, it is good to be able to recognise the problem even if it is still to be diagnosed professionally. It is good to have people like yourself to be able to spout off at and ramble on...........it certainly feels like it helps when you know other people understand what you are saying. I intend to keep people posted what happens after my visit, I have started a diary as i think it is important from now on as everythign seems so random and difficult to place exact time son what has previously happened.

I just hope I do not bore everyone with these posts, it certainly helps me to write.

Good luck and take care monkey....

John