Hello! This may sound like a rant, maybe it is but it isn't meant to be. I just want to share my journey with others as horrible and as painful (physical and emotional)as it may be.

When I was 15/16 years old, my mom was convinced that I wasn't doing a proper job of washing my heads of all things. The skin on all my joints were considerably getting darker and drier as the days, weeks and months went by. (Little did I know, darkening skin on joints is one of the many symptoms of PCOS.) My GP sent me to a dermotologists that had great reviews from other patients in the area. I remember being 16 and the demotologists did nothing but glance on the joints on my hands to told me to try the Atkin's diet, loose weight and it would all clear up. I was wearing a size 14, plus size yes, but not obese. (Many North American woman wear a size 14, hell, Marilyn Monroe was a size 14!) I was not impressed and there was nothing I could really do. 

A few years later, my new GP (the old one retired); sent me to see a fertility specialist who delt mainly with PCOS. I had always had problems with my period since getting it at 11 years old. It's never been regular, EVER. This doctor was the first who, just by looking at me told me I had PCOS. 'You have dark skin on your joints, you are a little weight, and your ultrasound results  definitely show enlarged ovaries' as this doctore declared. OK great, so I finally had some answers. Along with my GP, I started a regiment of being on the pill (AGAIN) as well as Metformin (a drug most often used to treat diabetes) to control hunger pangs. It helped with most symptoms of the PCOS with the exception of being able to lose weight and my period becoming more regular.  So for now, things were a bit better.

By the time I was 23, I started noticing that the pimples that were on my butt cheeks were changing and they were getting harder. They would eventually burst and drain but never did they really hurt. It progressed from my butt to my groin and into my vagina. I had told my OBGYN and he started me on this entire hormone therapy regiment because he was convinced that the cysts that could grow on my ovaries could actually be showing up in and around my labia and near my cervix. Knowing that Hormone Therepy can cause cancer I decided to go ahead- it was worth a try. 

Two years later, I showed up at the ER in the middle of the night, hardly being able to walk. I had a cyst the size of a golf ball on my clotoris (you can just imagine how painful and mortifying that is). They gave me pain killers and hooked me up to saline for the next few hours while many doctors came in to investigate (HOW FUN!). It eventually burst but it came back in the same spot ( I am now 30  and it still comes back but never that big). FRom that day, I knew there was something seriously wrong. I have many other cysts/boils that grown around it too. I have since stopped the Metformin (I was starting not to eat at all and still not losing any weight). So since my OBGYN had no other idea what to do we stopped the hormone therapy and kept me on a high estrogen birth control pill.

Fast forward to 28. I finally got some answers. I moved to a new city and my new GP upon my yearly physical flat out told me 'Looks like you have a pretty bad case of Hidradenitis Suppurativa'. By this time, I was missing many days at my job (thank God we are unionzed). Some days, I couldnt walk, the pain on my groin was unbareable. I work with children, so I am often walking around, standing for prolonged periods, bending down. My new GP (who I adore, mostly because he gave me an actual diagnosis) started me on different rounds of antibiotics to see what would help. During flare-ups, some helped a little but the pain was still there. He also filled out forms for my employer limiting my mobility at work (I am now working with older children and I can sit down most of my day). Along with all that, he sent me to a general surgeon to see if he could take out a few of the cysts and boils that had been draining for over a year.  While at my first appointment, the brand new one under my arm burst while at his office. So last December, I went under the knife and he took out the new one under my arm and 5 of them on the left side of my groin that had created a tunnel from on to the under. I actually prefer the incision scar to the other scars around; I'm guessing it might be easier to explain to a future boyfriend (only time will tell).

At my follow up appointment my surgeon told me that he had some papers come across his desk advertising a clinical trial for HS in Toronto. So we set up an appointment, I drove down to Toronto and had all my hopes crushed my this supposed awesome Plastic surgeon. Now, I'm not blamming her resident (the resident actually asked me questions and examined me), the doctor herself running this trial was awful. She told me I shouldn't be wasting her time with what she thought was maybe a stage one or mild stage two case of HS (mind you I was not having a flare-up so things looked kinda ''relaxed'' down there. She gave me a script, told me she'd refer me to a dermotologist (if she could find one that deals with HS, since many of them don't) and to not come back. So I had taken a day off work to drive down to Toronto. If many of you are like me, you may take some of this to heart and makes you feel even more in the dumps then you already were. This disease so does NOT help your mental health. 

Since then, I have been back to see my surgeon, he has agreed to take out about seven or so that have popped up  or got worse on the right side of my groin next July. He won't touch the ones near my cervix or the few that recur on my clitoris. The first surgery helped with the pain and only one has come back on that side. So for now, while I wait to see the dermotologist, I am okay with minor surgery to take out the ones that bother me the most. I am still taking a ridiculous amount of days of work; I am on a two week medical leave right now and trying new pain killers- I am done with antibiotics, there's never any success. I am also changing the way I eat and taking different supplements.

As far as mental health goes with all this. I often cry. I am 30, I am single, and I would really love to have kids one day. The question is, what man would possibly want to put up with this or have to see/smell the 'wonderful' area that is my lady parts. I have dated and had sex through this journey and I will admit that I still have a high libido and being satisifed is not always an option due to the pain. A few hadn't cared too much about the scars, others have asked me what kind of STD I was going to infect them with (they were such gems!).

For the past few weeks I have been dating a new guy. He seems great, he has a few minor health problems of his own and I've given him the short version of what HS is. I am nervous about taking the next step and getting more serious with this guy and we decide to have sex- the usual questions are coming up such as 'Am I having a flare-up?', 'What will he say?', 'Will he be okay with it?', 'Will he leave me because this is so gross?', etc., etc., etc. Only time will tell. 

I know this is a long post so thank you for reading. If you have any questions I would be more then happy to answer, I'm quite open about this. And if you have any advice on how to divulge the whole truth to this new man of mine, it is greatly appreciated! ;)