I was 10 years old when I had my 1st period. They were never "normal". They were sporadic at best, occurring every few months, but when I would have one, it could last as long as long as 28 days. My mom took me to my pediatrician and was told that the first year was always the roughest and given some time they should “normalize”. When I was 14, and a freshman in high school, I was put on the pill. Finally, for the first time, I was having “normal” periods. Instead of bleeding for 28 days, I was having a period every 28 days…like clockwork. It was also around this time, my sister who was a senior in high school experienced her first cyst. It grew on her tailbone. She had to have surgery to remove it, and a long recovery followed. Believing it was an isolated incidence, life went on as if nothing happened.
Over the years, both my sister and I would get boil-like pimples on our inner thighs, underarms, and underneath our breasts, and even in the pubic hair region. Both of us also suffered from darkening of the skin on the inner thighs and underarms. Only I had this dark velvet-looking patch around my lower neck. Blackheads invaded my body. I would sit for hours squeezing, digging and scrubbing, trying to extract them. I used everything on the market, but to no avail. They just kept coming back. There was one odd factor in all of this, I never remembered ever having a pimple on my face. I never had facial acne as most kids do when they go through puberty. I guess I thought I was one of the lucky ones since I could cover my acne with clothing. But how wrong I was. My nightmare was just beginning.
I was in my early 20s when I encountered the pain my sister went through when she had her cyst. I, too, had one growing on my tailbone. It occurred about six months after I had left my husband and moved back to my home state. I had never been in so much physical pain. I remember every moment so vividly. But I am getting ahead of myself.
Backtrack…when I was 18 I ran off and married my high school sweetheart. I got off the pill because we wanted to start a family right away. By my 21st birthday, I had experienced 2 miscarriages and a daughter who only lived 3 days. My husband and I had suffered so much loss and we had dealt with our grief in different ways. It eventually lead to the demise of our marriage. 15 years later, it is the one thing that we still can’t talk about.
Like my sister, I had to have my cyst surgically removed. And over the next decade I went to dozens of specialists trying to find out what was wrong with me. Why my periods were so messed up and why I couldn’t get pregnant and when I did, why I couldn’t carry to full term. The boils, cysts, and blackheads, while prevalent, took a backseat to my obsession with becoming a mother.
For the first time I was getting facial acne. Here I was almost 30 and my face looked like a teenager’s worst nightmare. That dark, velvety tuft of skin around my neck was becoming thicker and more noticeable. And to top it all off, I was starting to grow hair on my chin, my upper lip and chest…all the places a woman wasn’t supposed to. Worse, yet, my head of thick cork-screw ringlets was no more. I started losing my hair. Now it is so thin, you can see more scalp than hair. My weight even became out of control when I topped the scales at 215 pounds. All my life I was fit. In high school I was a cheerleader and never weighed more than 135 pounds until I got off the pill.
Birth control was the only direct link I had to all my symptoms. I never had any of these problems when I was on the pill.
Out of all those so-called “specialists”, not one of them could tell me what was wrong with me. I even had this one male doctor say to me something like, “some women just have problems and we don’t know why.” It reminded me of the archaic mentality that women suffered from hysteria while having their menses. Needless to say, my depression had run rampant and I started becoming self-destructive. My fiancé was at a loss; he didn’t know how to help me. I am grateful every day for him. Not many would have stuck with me though all of this.
And I am also indebted to my mother, since she is the one who finally diagnosed me. Even though she’s not a doctor, she works for the Mayo Clinic, and while on break she read an article on Polycystic Ovarian Disease (P.C.O.D.). There was a 10 question quiz, to which I scored 9 out of 10 on. There was finally a glimmer of hope that I wasn’t “broken” after all. Immediately I made an appointment with a new doctor and brought the quiz with me. I wasn’t about to have another doctor tell me they couldn’t find anything wrong. I knew it couldn’t all be in my head. There was too much irrefutable physical proof.
I explained through my tears why I was there and begged for her to help me. The doctor looked at me with sympathetic eyes and took my hand. She assured me it wasn’t all in my head. That I did in fact have P.C.O.D. and she would do everything in her power to get me on tract, and maybe if all went well, there was a chance I could still become a mother. She couldn’t understand how I had never been diagnosed before. She told me I was a walking billboard for polycystic. The only thing I don’t have is the cysts of my ovaries…instead they’re all over my body.
The first thing on the agenda was to get my hormone levels where they were supposed to be. Apparently why I couldn’t carry to full term and why I was growing hair in places I wasn’t supposed to be and losing it in others was because my testosterone levels were too high. Who knew women even had testosterone? Not only were my hormone levels off causing the alopecia (male pattern baldness), it was also causing my weight problem, leaving me with type II diabetes.
For 25 years I have suffered in silence. There isn’t a single spot on my body that hasn’t been marred by scars both from this disease and self-induced. I have never been diagnosed with Hidradenitis Suppurativa, although I have all those symptoms, too. My doctor has me on a strict regime of tetracycline for the skin outbreaks. As long as I keep the weight off, my outbreaks and diabetes are under control. Even though I still have no children, it is no longer my obsession. I still suffer from depression, but as long as I know I am healthy, that seems to be enough for me right now.
So, for all of you who are afraid to speak up. Just know 2 things: 1. this is NOT a sexual disease. It is something you are born with. It is hereditary. And 2. It is controllable with medications. So, please talk to your parents. Go see your doctor. Don’t suffer as I have. Don’t let it define who you are.
I know what u are talking about and it hurts a lot more emotionally than physically, but there is that too. I have been wondering what to do about it for years and now I have a boyfriend and he commented on my acne between my legs and my the acne, boils and depressions in my skin from earlier acne. It hurt so much and I just want to be perfect for him and I just wish there was a way to help any suggestions that have cleared it up fast he is in the military and I get to see him in two months I want to be perfect. Please give me ideas please..
If it is Hidradenitis Suppurativa you can try an ointment I made for my boyfriend... It might help.
Slippery elm extract
Marshmallow leaf ( steep it in a little bit of very hot water so it is more concentrated)
Tea tree oil
Honey
:-) Mix them all together to make a kind of paste, you can apply it to the effected areas with clean hands and put gauze and tape or wrap it with gauze and plastic wrap. Leave the ointment on for 2-3 hours and take off the wrap and rub in the ointment if there is any left on skin. Apply it daily or as needed, and consider using a natural body wash with tea tree oil in it and natural deodorant.
Let me know how it goes for you, Best of luck!!
I have had this issue for 25 years...the correct diagnosis is HS. as for the treatment i take cipro 2x daily which has reduced these outbreaks severely....i have had surgery over a dozen times till i finaly gave up, every time they removed one it would reappear elsewear...now that they are in my groin i just keep them clean and dry...that is the most important thing, basically they grow from the darkest warmest places on your body..arm pits, crotch, ass crack..and when they are ripe they are very painfull. While draining them is an immediate treatment, prevention is the most important...So clean and dry and a bottle of cipro in nightstand will prevent years and years of suffering, also when that area is clear i would shave it and keep it shaven to lesson sweating and incase of outbreak it will allow you to cover with an oversized bandaid..take the cipro the moment you can tell you are getting one and take it for 10 days...it will prevent you from having to deal with a draining issue...nothing worse then getting out of a warm shower and watching yourself leak all over the place like a women on her period.
Thanks for posting this Liz. I am 24yrs old and believe you just described my face's current state! It's not bad enough to make me cry in pain (until I picked at 'em, I know terrible) but they seem to occur on my forehead, nose, chin (maybe from tweezing out my little hairs there, ssssh), and my "who-ha". Ive so far tried using natural toners, lemon juice, apple cider vinegar, dark spot correctors (garneir SUCKED), even went MAKE-UP FREE for a WEEK!!! And the darn things are still making me a butter-face :'( I'll start popping advil more and ask the doc about antibiotics! Anymore advice you or your mama have would be so helpful and I would be very grateful :)
Thankyou everyone for the help! I have had these pimples and boils for maybe a year. I told my mom, she said to keep clean. Which I have. I am going for a dr. App tomorrow just for a normal check up so I'm going to ask about that! Urgh I'm 13 and I hate talking about that stuff with anyone. Even my friends!
No affence to anyone but I am 13 and a virgin and 13 and having sex! EWWW people are turning into s**ts! When I get older like 15 maybe but right now 13 and 14? That's a big hell no!