HS on breasts....Love me for me and not what you see.
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Hi
I'm 43 and have suffered with HS for near on 20 years. It was only 5 years ago that I was correctly diagnosed with HS, my doctor had never even heard of it, so was finding it difficult to come up with an answer, that was until I was reading a magazine and upon further reading and the symptoms the woman was describing...jumped out at me. Taking the clipping of the magazine to my GP she confirmed my worst fears.
HS can affect many parts of the body, and for me it's in my arm pits and breast, the scarring on my breasts is terrible. Luckily my husband did not even flinch at seeing this, and for those people out there who are ashamed of HS then you shouldn't be. Any person worth their weight in gold will see past this and love you for you.
There is no cure for HS but I do think there are different triggers for different people...I have to be careful with sugar, the less I have the less I suffer.
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Guest
Posted
wow, not only do we have the same name, we're about the same age (I'm 44), have had HS for around the same amount of time, have gone undiagnosed for about the same amount of time, found out what HS was at about the same time and in a similar way (media, mine was the TV!). And if that's not spooky enough - I have HS mainly under the breasts and under the armpits! Terrible scarring........... and a WONDERFUL loving partner who doesn't give a poo about the HS but loves me and sympathises with me and takes care of me when I'm feeling grumpy and in pain.
How lucky are we?????!!!!!!
His name's not Robin by any weird chance is it? lol
Lots of love
Bev x
Guest
Posted
It's Beverley here, I've only just read your reply, I think we could be twins from distant lands....so very much in common, and HS bringing folk like us together.
I am suffering with a real bad outbreak at the moment, well I say at the moment, it's been going on for months, and all under the breasts, in terrible pain and very uncomfortable.
I am no longer with my husband, and no he wasn't called Robin..Lol, nothing to do with the HS, just one of those things. Apart from the HS life is sweet.
It's good to know the people can see past the condition and love us for who we are on the inside, because quiet frankly the scarring I have it terrible, and it does make me think twice about entering into another relationship.
Thank you for replying to my post, HS is not a nice condition to have and I hope to be rid of it one day, but only time will tell.
I've even considered setting a group up on facebook, but I reckon, people will not join and would be too ashamed, but we shouldn't be. It's nothing we have done wrong.
I hope you are in remission at the moment and wish you all the best.
Your Friend...Bev xx
Guest
Posted
So nice to read your post! We are definitely distant sisters, suffering with this awful awful disease but hangin' on in there and refusing to be beat!
Very sorry to hear that you have a bad outbreak at the moment - I shall send you healing thoughts x
I am very lucky at the moment, since I stopped smoking and eating meat, mine has improved 90%. Am also taking a zinc supplement every day (plus an iron + vitamin C as long-term zinc can make you anaemic and the vit C helps the body absorb the iron).
All of the above seems to have really improved my condition as far as new outbreaks go although of course, as you said, the scarring is still there (and I guess will be forever to a greater or lesser degree).
If there's one thing I've found over the years with all the remedies I've tried (all natural ones), it's that HS hates anything new you throw at it. I have often had good results from trying a new remedy and although none of them have had any really long term positive effects, they seem to confuse the little devil for a while and at least give me a few months' respite, which is a real blessing. So as soon as mine starts to get used to the zinc, I shall find something else to keep it on its toes!
If you'd like a list of all the things I've tried over the years, let me know and I'll post them. Even if you only try a few and even if only some of them give you some respite, it's certainly better than living in constant pain.
There are HS support groups on Yahoo Groups. If you join Yahoo then search in Groups using keyword HS, you will find at least 2 support groups with hundreds of members. There is lots and lots of support on there and heaps of information and you can go and just have a good moan too if you're having a particularly spell and everybody is sympathetic because they're all going through the same stuff.
It helps me put my stage 1-2 HS in perspective when I read some of the posts on there - poor people with lumps the size of grapefruits on the most intimate of parts of their body, in unimaginable pain, in difficult relationships with partners that don't want to even try and understand.
I went for about 3 years not daring to even date because I was terrified of having to face THE PROBLEM with a new lover, but when I found the right person, the HS faded into insignificance so be strong and never lose faith!
I also follow closely the French HS website which is really good in keeping up to date with the latest medical advances and research. There is a French doctor in Paris who is involved with the site and she posts on there often and is very involved and sympathetic. If I read anything really interesting and useful on there, I translate and post it on the UK sites I visit.
Well, I shall stop babbling lol. I send you my very best wishes, lots of healing thoughts and many blessings.
Bev x
:D