HS dating and sexual relationships.

Skin, nail and hair health
1

I am so glad I found this site. I feel comfort in finding some support from people who are experiencing the same pains as I am. I've never talked to any friends or family about living with this condition. I am 25 years old, (began to show signs of hs at age 9) and am still painfully embarrassed and ashamed of this condition. I am lucky enough to have a milder form with mostly scarring and my "boils" I guess you would call them, aren't ever big enough to need surgery although they can become extremely painful at times. But regardless of how mild or not mild my case is, I have not allowed myself to seek real romantic relationships with men because I am afraid of what they will think of my body. I have tried having sex a few times before but I have never fully enjoyed it because the whole time I was diverting his hands away from any affected areas and scars of my body... it's hard to get in the mood when you're not comfortable with your body. It all started in my under arm, moved to groin, and in the last two years has made its way under my breasts. My breasts were my favorite part of my body at one point, but now I can't even feel comfortable with that anymore! My confidence is completely shot due to the fact that I'm depressed, have body image issues, sexually frustrated, and lonely. The list goes on and on thanks to HS. I've always tried to keep a positive attitude about it because I knew that I had to live with it for the rest of my life, so I tried not to get down on myself and not focus on relationships but instead focus on being happy with myself regardless of what I see in the mirror. Lately though, it's been rough for me. all of my friends have gotten boyfriends and i just want the same. I don't want HS to hold me back from finding love and having a family someday. Sex gives me anxiety. Nakedness and the thought of being intimate in the morning during daylight hours gives me anxiety! Something so simple and I'm sure unappreciated by most people. How do I break it to the guy I'm dating that I have this problem without scaring him away? When do I bring it up? Do I bring it up or wait til he sees it for himself? Are there any HS dating sites?? That's a great idea actually. I've always thought I'd never end up alone because someone will love me for me (HS and all), and I really hope that's the case. Any personal stories about finding love and relationship advice would be much appreciated. Please help I'm in the dark here.

Peace and love

2

I completely understand how you feel. The ones in the groin are the most difficult to deal with on a relationship point of view. I mean who wants anything intimate to go on when you are in agony down there or have a leaking abscess sad I would say it's not something you bring up on a first date but once you are comfortable enough with someone to become intimate then it is time to bring up the subject. Let's face it, if he runs then he wasn't someone you would want around when you are having a bad time. It may be worth contacting The Hidradenitis Suppurativa Trust. They have a FB page and if you ask them they will sent you literature on HS. This could be really useful to help explain what HS. I think a lot of people have the misconception that it is caused by poor hygiene or worse still that it is somehow contagious (especially when it is down below)

The scars do not bother me so much anymore but I am 45. I didn't have it as bad when I was in my early 20s or nearly as often. It sadly does seem to be a progressive condition.

I would just say that you need to stop worrying about finding someone, relax and enjoy yourself without the spectre of HS looming over you. The feelings you are having are perfectly normal for someone of your age group even without HS. My son (HS free) felt the same way as you do regarding love. All his mates had settled down and he felt left out but now aged 26 he is engaged to a lovely girl who is is soul mate while some of his mates he was envious of are still bouncing about from girl to girl. Good things come to those that wait smile I hope this helps a little x

3

(WARNING:Bad English)

I took me years before thinking about girl comming into my life,i have HS for about 8 year now (butt only)and im in relationship for over 5 years.The key here is talk to about it to everyone and it help for you too to accept your own condition.Many girl ive meet has no problem at all with my condition once they get the info right,but still each time i got a oportunity it was me backing up.To be honest that HS was good for me at some point,it make me lurn all the thing i needed to be a stronger man and my food changing was the best ting ever.Lost 50 pound in like 4 month and my HS is almost gone. I found that on this site

https://patient.info/forums/discuss/hidradenitis-suppurativa-you-can-have-your-life-back--38578

wish you luck in your futur

peace and love from canada

4

Hi Roby smile

I just found this page too and I'm really excited to hear bout other peoples stories with this disease. I'm the same age as you, I've had HS since I was round 15 years old but just recently got the medical condition for it, I'm a stage 3 and the condition is part off my every day struggle, but, although it's an every day pain and struggle I try not to let it take over my life. I'm really sad to read bout your experience with intimacy and how you feel ashamed and embarrassed by the disease. It really breaks me that it a taking such a toll on you and your confidence. It's unfair that something like this should stop you from enjoying life and love and intimacy. I know everyone's different and have different confidence but maybe sharing how I view it can help you to gain the confidence you need to not hinder yourself in life and love, you look like a gorgeous woman and HS shouldn't take your confidence away.

I have always been very open bout this to my family and friends, at first it was a massive embarrassment and I thought I was unclean and dirty and spent my teens scrubbing in the shower and des infection myself hoping I could was h the "ugly dirt" away. But as I grew up I realised something important and that's that I can't help having this, as a human can't help how tall they are or how they face look isn't something one can choose. As long as the disease is explained people close to you will understand what you're going through and I can't imagine anyone who loves you would be judgemental off a horrible condition that gives you pain and discomfort. The only reception I've gotten is love and sympathy.

When it comes to being intimate that's a tricky one, because as you, I have scars in my grains and under my arms and under my breast and very often I have a starting abbess (if it's a big one I'm not really in a sex mood :p) I decided to tell myself that I'm as sexy as I believe myself. When I've been intimate with people and been shy and tried to hide my scars or lumps thats when people have been aware off it and noticed it, because I've drawn attention to the area. When I just let myself free and try be in the moment and don't worry bout it I have never noticed anyone off those I've slept with noticing or looking badly at me or commenting on it. I belive sex don't become good because you look thin or flawless, sex become good when you're in the moment and give off yourself and you're enjoying yourself. And for me, that's worked. Is kinda same way we girls tend to think guys care bout how our tits look or stomachs or stuff like that, but if you've managed to get the guy home he wants you and he probably don't notice 99% off everything going through your head.

Now I know this ain't easy, and it's not like you can just decide to be confident and that automatically happen, but I think to work on it be good, I've worked really hard to accept my flaws and the stuff I can't do anything about I don't want use energy on, because thinking bad and being depressed won't change the facts. Focus rather on the good bout you, what you like bout yourself and how you look, and most importantly your inside. Now this sound like biggest cliche, but I have a note on my mirror with 10 things I like bout myself both inside and outside, and it took a GOOOD while to come up with ten, but it helps, to every morning kinda remind yourself what's good bout you, we so often think bout the bad, so don't harm telling yourself what's nice and positive every day smile

I'm in a relationship with a lovely man now, and I told him just before we became a couple, I found that I needed prepare myself with what I was going to say so it came off right and he didn't get effected by my own negative thoughts bout the disease. And he took it really well, he hold my hand when I'm in pain and make my food and drive me to the doctor to cut it up and endure the bad smell lol. And I promise you that if a man run away because off an illness you can't choose to have he's not one to keep.

HS is an horrible disease, but it shouldn't be allowed to take up more off our lives than it already does. You're beautiful even though you've got scars, and I truly mean so. I hope this don't come off as a "hallelujah speach" cause I don't want that! I just hope that you manage to gain confidence in the good in you, and know there are men out there that care more bout your personality and brain than if you have some scars on your body.

I truly wish you all the best <3 and I hope a man out there realise soon he's lucky to have you in your life.

5

i can relate with pretty much every point youve brought up, im 22 years old and have been suffereing with HS since i was 15, it is a painfull and embarrassing disease, that has and does effect my life in many ways, i used to love playing rugby but due to me being in pain about 80% of the time and the numerous scars that i have i had to stop, i was diagnosed with HS at 17 and since then have had 16 abscesses drained and removed and have recently had my right armpit removed and skingrafted to remove the problem from my armpit, also on friday i am having my left armpit removed so this should calm my HS down about but wont clear up my groin, back,chest,legs or neck. but i suppose every little helps, i also like you have had problems with relationships and intamacy due to HS because of scarring and having abscesses present, and i agree its a difficult subject to bring up, its hardly something that can be brought up in conversation over a few drinks is it? if only there were some HS dating sites haha that'd be a god send!

hope you find what your looking for!

6

Hello, Roby! I am new to this-- and I honestly never  thought I would join one of these discussion forums. My boyfriend was looking up the effects Tumeric has on H.S patients and he came across this forum. I read your post and decided to make an account to respond to you.

First I would like to give you some background information on me so you can better understand the different psychological effects this disease has on its victims. Growing up, I never had a problem with my skin. I always had clear and pretty skin and people would often bring this to my attention with compliments. To this day, I still have great skin---aside from the affected areas. When I was 17 years old, a cyst developed near my tailbone. It was extremely painful, and I went to the E.R and they cut it open, then stuffed it with gauze. I thought the problem was solved. However, about six months later it came back. This "thing" reappeared in the same exact spot often-- until I was 19 and finally had surgery to remove the root cause of it. The doctors said I had Pilonidal disease. The surgery was a success, and to this day it has never come back in that same spot(but has left a terrible scar). I thought the problem was solved.

Then something much worse happened. When I was 23, a cyst appeared in my groin. It was painful and the skin was thin. When I could no longer take it, I went to the doctor and they drained it. I didn't think much of it-but then it came back. Then it came back again and again. Then more started to appear. I immediately became frustrated and felt hopeless. I had no idea why it was happening or how to cure it. After multiple vistits to the E.R, I was diagnosed with H.S. The doctors treated me like a hopeless case and sent me on my way. They informed me that there was no cure and I should see a surgeon. I was young and living with my boyfriend at the time; in which we both worked, paid our bills, and barely got by. I did not have health insurance and I still don't. I am a full-time student and do the best I can in my young age-- but since then the disease has taken over my body. I am now 26 years old and both my armpits are infected as well as my groin. I am terrified that it will spread to my breasts. When H.S first showed its ugly face, I became extremely depressed. I felt disgusting(still do). I wouldn't allow my boyfriend at the time to look at me anymore. I stopped going to the beach and I started to bury myself in clothing. I was in a nasty relationship to begin with, and I was already starting to realize I was not happy when this disease manifested itself into my life. The disease played a huge part in why I stayed with him for so long. I was convinced that if I left him, I would die alone. When we fought, he would say I was gross and call me names. He used my disease to hurt me and he also used it to keep me around. He finally left me in 2011 for some young pretty model type. I was devastated and at the time didn't realize what a blessing it was. Had he not left me, I would have never left him. I abused alcohol and drugs and gained weight. Slowly, I watched myself turn into a completely different person, physically and emotionally. My life was an absolute mess. I have always been extremely social and have many friends. But I told no one. Not even my family. The only person who knew was the worst person imanginable. After he left me, I was forced to move out of state. I got my life together and closed myself off from the world. In that time, I started going to school, stopped drinking, and started getting my life together. After a year of my ex playing mind games with me from a far, I decided to pack my bags and move 900 miles away from everyone I knew and loved. I got a studio apartment in Tampa, FL, and started working at a high volume restaurant. I came home, and sat alone in this place for well over a year. Trying to only focus on school and work, nothing else. I was convinced that I was going to die alone because I couldn't get past the hell of telling anyone what was wrong with me. I have been asked out on several dates. I would go of course, but it never went anywhere because I was terrified of rejection. I don't know how it has been for you, since you say you have been suffering from this since 9, but for me it has been hell. I went from a healthy normal girl, to a train wreck in a matter of months. Every judgement I have ever had towards a person for being over weight, or being covered in acne etc, turned agaisnt me. I became the person I would never give the time of day too.

Seven months ago I recieved a message on Facebook from a guy I worked with 9 years ago. We barely spoke when we worked together, and I never saw him again after I left the business. I remembered who he was, because I became good friends with his best friend who also worked with us. I remember thinking he was incredibly handsome. I guess you could say he was my "At work crush" at this particular time in my life. Anyway, he messaged me and we started chatting back and forth constantly. It seriously turned into all hours of the day between FB and text. We talked about everything. Believe it or not, as crazy as it sounds, we fell in love. We started talking on the phone, skype etc. He was living 900 miles away from me back in Virginia where I grew up. This gave me some comfort and also made me sad. It was easy to carry out this relationship knowing I wouldn't be forced to eventually meet up with him. I was wrong. He started talking about coming to see me. He was convinced I was going to be his future wife(still is). Eventually I found myself in a situation where I had to tell him. For two months he knew I was hiding something because I told him I was. I told him I could never tell him because I knew he would never except it. He would constantly say " I don't care what it is, nothing will ever change my mind about you". Long story short, I finally told him. Knowing he would do research and be horrified, I very well could have had a heart attack after I did so. Best thing I ever did. A few weeks later I drove up to Virginia (planned to stay only a week) and stayed three months. I continued to pay my bills back in FL by getting a job there. In that time we got everything in order for him to move here. He has been living with me for two months now in Florida and the other day he officially became a resident. He has a great job here and everything is perfect. My disease did not change his mind about me at all. Not even a little, if anything it has made him more loving and compassionate. He is constantly feeding my vitamins and taking care of me. He hates that I suffer. He is always telling me he wishes he can take it from me and live with it instead of me. You have to find the right person. He is out there. You just need to be careful in how you tell him. Take your time and let him love you for YOU before he loves you for your body.

 

7

This made me cry :&#39 

Thanks !

8

Hi,

I got my first abscess at 16 had 3 ops in same place right over my tailbone (in the middle of my lively peachy bottom) 2 years of abusing my body with all manner of legal/illegal drugs because it was failling me by constantly having abscesses in all areas id sit scrubbing my skin for an hour in morning and when I could through day/wake at night worrying I wasnt clean, I thought I was gonna never find love especially with the amount of scars I was racking up I ended up with sleeping with anything that said I was beautiful, basically instead of introverting my depression sent me craving to feel I was still sexy in my own way. 

2 years of this passed then at the cusp of my 19th bday I was diagnosed by a specialist dermatologist with HS. I was relieved so relieved to know I wasnt dirty it was just in my genes, I cried like id wanted to cry for the last 2 years but couldnt. But then I realised id never be free and I did introvert myself, went from being out every night with all my friends to ignoring them because I didnt feel happy or any joy, my life for the next year was a cycle of... Work... Comfort eating...hospital visits... And getting stoned just to not care anymore...

I put on so much weight I thought to myself damn!!! Im so heavy and ugly and worthless whats the point i'll always be alone.. Then 1 night I was getting back from work at 2am and plodding through the channels but nothing on til I got to a channel which had teletext type writing on it looked closer it was a dating thing.. I was like meh see what lonely people there are I need to just chat to someone who doesnt know me.. So I text the number on the screen, I was amazed it instantly popped on the screen and got loads of replies. So I weeded out the perverts wanting phone moans(been there done that years before with real people and blah not great) and the just plain weird and ended up with 1 lonely lad living halfway up the country me living south him north, we texted for days and days, I found myself getting excited about having my break at work cos id get to text him, he was like me he had self esteem issues too, but the more we talked the better I felt and he did too. After 2 months of texting id fallen in love and I never thought it possible.. We admitted to each other we loved each other but I was still too ashamed of my body to meet in person. 1 day after a hard day at work and the emergence of 3 new painful abscesses I just got real angry and blurted out why I was angry then cried because id done so, he reassured me it was fine and that it didnt matter its just another part of me and that he'd always be there for me even if I decided I could only cope with having a good friend.

He made me feel so good about myself more than I had done in years I just had to meet him I travelled up to him and we spent a few hours together holding hands in the park, talking and eventually kissing in the dappled sunlight from an oak Tree I was on top of the world, a couple more visits to each other and I was secure enough to show my scars he kissed each 1 and said they were as beautiful as my smile. I just melted and couldnt believe how lucky I was. A few years later I couldnt be happier I have a loving fiance, a gorgeous little daughter and my life couldnt be any better, boils and abscesses too cos each bad 1 gives me another scar to have kissed and loved as much as me. 

Love happens in the strangest ways... No matter how bad you feel it can get better....

9

This made me cry too. So many of us have felt your pain, both emotionally and physically.

I'm so glad you've found someone who is so understanding and I hope it gives the youngsters who are reading this the confidence to believe that they have every right to love and be loved. 

10

This gives me hope, Thank you so much! <3 I thought I was alone.. 

11

Hi Ruby,

I know you wrote your post 10 months ago, but I thought I would share my perspective from a different point of view.

I'm an Aussie Husband who lives in NSW, and I'm happily married to a HS sufferer. She is the love of my life. I signed into this forum as a patient as there was no other option to choose and I struggle with HS in my own way. My Wife and I have been married for 9 years and she is the only woman I have ever touched intimately. I saved myself for one woman and one only.

Firstly though, When I met my Wife her HS was dormant or in remission, but she had scars under her arm pits and groin area, yet I fell in love with her for her sense of humour, good looks and her heart and mind. Her scars did not bother me, in fact I love her more for them. Someone who faces the world with strength and courage while having HS which is causing extreme pain makes me feel weak in myself. About two years after we got married, we had a miscarriage with twins. The hurt and sadness was terrible, and I think it triggered the HS to come back. It first came back under her arms, then a year or so later, in the groin area. She is still battling it some seven years later, and the only improvement has been that it has left her arm pits a few years ago. Our sex life since the HS came back has been dramatically reduced, from 2-3 times a week to 2-3 times in 6 months if we are lucky. There have been gaps of 4-5 months between lovemaking. As a red blooded Aussie male, who is passionate and a romantic at heart, this has caused depression in me and my Wife. I have much of the time felt unwanted, undesired and unloved. But at times she reminds me that I am loved and appreciated, especially as I stay with her no matter what. I can only imagine what my Wife and others with HS like yourself go through. The pain she suffers brings her to tears, she seldom lets me see her body, and struggles with her appearence. Which is why, when she lets me see her, she rocks my world. I appreciate her far more when she shows her body to me, because I know she finds it so hard to show herself to me. Her courage and bravery makes me crazy about her. If I may be frank, if she is not too sore and she allows me, I do my best to rock her world orally to show my love of her and my acceptance of her as she is. She is so down on herself for her appearence, that when I dont see her nude for a while, she makes the HS seem to me to look much worse than it does. So when i do see her again, I am releived at how good she really does look. She makes it seem so much worse to look at than it really is. I love her how she is, as she loves me how I am, worts and all. I try to get her to understand that I dont want a perfect woman, but that she is perfect for me. There's no such thing as a perfect man or woman. I am no Angel, and I have major back and neck issues of my own as well. There is always hope, and there's good men out there who will try to help bear the load with a Wife or Girlfriend with HS. I often say to her, that I wish I could take her place in having HS, I really do wish that. My Wife has made me stronger, by the strength she shows each day. I cant stress enough the importance of openness in a relationship about this, and this is hard for my Wife. But when she tells me that she cant be intimate with me, because of the pain and discomfort, it helps me understand her present situation. When she has been silent, I have been prone to believing that she doesnt want or desire me, and this causes me to despair and lose hope. When she keeps me in the know, i can be more considerate and caring to her. I can know when to come and when not to come to her for intimacy. She struggles with guilt and shame because she cant be the Wife to me she used to be physically. I remind her daily that she is my better half, my super model and my Hottie Wife. she has had HS since her early teenage years, and she is now 40. I think she is like a good wine, she just gets better and better with age. 

I am a Christian, and I believe that falling in love with a person should be about who they are and how they treat you. It should never be about looks or sex. A great relationship will stand the test of time that is based on love for the person inside than what is on the outside. When both people love each other for who they are, truly great sex happens. When sex does'nt happen, you are still in love with each other regardless. I also believe in mutual submission, that is, each person putting the other first, rather than focusing on self. I massage my Wife's neck and shoulders and I rub her feet regularly, whether I get any physical attention or not. I do these and other things to show her that she comes first in my life, not me. I also do these things to give her at least some physical enjoyment in her day, as the HS really drags her down. These principles have kept my Wife and I together and in Love. The love I have for my Wife goes way beyond any scars or abscesses or the foul moods that HS causes.

I have wrote this, not to brag about my relationship or blow my own trumpet, but to let you know that there are still men out there who arent totally shallow, and to tell it from the position of a HS sufferers spouse. 

From my position, I cant emphasize openness enough with the man you find you can trust. If you scare a man off with this, he's not the one for you. There is someone FOR YOU.

I wish you all the best

12

I won't go through my whole story other than I've suffered since I was also about 9 or 10, turning 25 in a couple weeks. I've had a really hard time with coping with this my whole life considering I didn't even know what the hell was wrong with me until about a year ago. Have been frantically searching all over the internet for years. & finally something. I read stuff from Primal Girl's website and realized I needed to change my diet. I said I would change it, then let myself fall back into my careless eating habits. As my depression & HS has worsened, I've become fed up. I just read Tara Grant's "The Hidden Plague", & her amazing knowledge of how we can heal ourselves is inspiring. I feel there's hope, but we're the only ones with the power- to heal ourselves. I really suggest you read this book, it breaks down everything for you. HS is an autoimmune disease, we have something wrong inside our bodies that has effects on the outside, probably not as much as the inside (but more than enough) & it's because of what we're putting into our bodies.

I've had boyfriends on and off my whole life with HS, only once in early High School was I asked about it, but I would avoid the conversation completely because I legitimately didn't know what it was.. When I did find out, I had a boyfriend of 4 or 5 months and I told him. He was very understanding and supportive. I have many scars also. My point is, I refuse to let this ruin me. We're beautiful young women with our whole lives ahead of us. Right now I feel like the main priority is getting healthy, respecting our bodies and what it can't handle (with this we'll look and feel better, thus  calming our depression)! Love yourself, and then love can come. When you start getting intimate and are comfortable enough with someone, you can explain it in more of a scientific aspect if it's easier. You don't have to even throw the word boil out there (I know I hate it). & if they're not okay with it, why in the heck would you ever want to be with such an uncompassionate, ignorant person anyways!? I would hate to think that a person I would even remotely be interested would turn me away because of my HS. Until then, let's live a healthy lifestyle, try and get ourselves in order & take control of our bodies.  Please go read the book if you haven't already. Wishing you and everyone with this crappy disease luck in finding your strength and self love, I'm working on it myself! 

13

Hey sweetie - I know exactly what you're going through. Have you tried applying cocoa-butter twice a day to your scars? I found that doing this reduced the appearance of mine within about a month of trying it - and I'm at stage 2 of HS! Give it a go, it may work for you!

I also found that adding turmeric and garlic to my diet helped me get less breakouts, and so did avoiding paprika and other nightshade-based foods.

Good luck, and remember - if he doesn't accept you with your scars, he ain't the one for you! x

14

Me too, I have been battling this disease for 10 yrs. It has strip me of my confidence and is an awful, debilitating disease. I also suffer from fibromyalgia and other illnesses and I thought that was bad enough. I would rather deal with joint and muscle pain rather than to deal with this.

15

Hello, I know your post was a yr ago.I was wondering if you could give an update on how your doing with the hs.Im 32 i was diagnosed last yr.I already knew i had it because my dad had it until he passed Oct.11,2015 .I watched him suffer damn near my entire life with it.I too thought nobody would date me after i started suffering with the disease but i think i found my mister right !!! I still go through my rough days of depression. and sadness but i do have a little support system .Hope to hear from you soon .Maranda

16

Hi there! I had also been living with this secret until I met my boyfriend a couple years ago, I didn't know I had this condition I thought it was an STD so I opened up to him and told him I didn't know what I had, he was very supportive through it all... I ended up telling my sister about it too and we went from Doctor to Doctor until I finally saw a dermatologist who didn't say it was HS but prescribed me DORYX which I hear a lot of HS people use, anyways to answer your questions if he loves you he'll understand... This is not contagious it's a skin condition, you guys can learn to live with it. If you're not comfortable with touching then let him know and he'll make you comfortable if he doesn't understand that's his problem it's just a skin condition, I do understand how hard it is though getting back into the dating game it's very embarrassing and I also try hiding down there when it flares and I won't let anyone touch! It just takes a good man to understand.

17

Brother m also 22 n suffering frm same problem! Can u please tell me tht after surgery and skin grafting, are ur armpits free from boils of hS!