January 20th, 2010

My HS is still doing really good. I get about 1 - 2 nodules every 6 months. I still need to keep getting laser hair removal every 6 months when my hair starts to grow back more. But I have really dark thick hair so it's hard for the lasers to ever completely and permanently get rid of all the hair. It's stilll completely worth it though, monetarily wise it's only $150 a year, my happiness is worth that and more.

With my nodules gone along with my utter fear of sweating, I started going to the gym, belly dancing more, and doing a lot of yoga/stretching. I've never felt better physically, I'm down to 23% body fat, yay!

July 2nd 2009 - Today is a GREAT day!!!

Today is a great day because I realized that I've almost nearly forgotten that I have Hidradenitis Suppurativa! I haven't thought about it in months, it only crossed my mind because I signed up for personal training sessions at my gym and I thought about it when they asked me if there is any medical conditions they should know about.

Since my last mentioned outbreak on January, I haven't had a single flare up of HS. I've been back on my Seasonique since February and have had 1 more laser hair removal session because there was still a spot where hair was growing. My skin is even looking better where the scars are. I now consider myself in remission, 6 months without any flare ups.

Now to recap what I've done to get to this point. I've gotten laser hair removal on my pubic area and on my butt. I wash with allergen friendly mild detergents that don't have perfumes in them and I wash my body with castile or other natural soaps. I take Seasonique, a birth control that supresses your periods so that you only have 4 per year (this has been awesome!). Through the whole laser hair removal process I inspected my skin frequently, because of my scars my hair would get stuck under my skin where my skin dipped in from the scar. Around the hair there would be a core of hard substance. If I noticed a hair stuck, I would gently squeeze it until the core and the hair pushed up some. I would then take a pair of tweezers and pull the hair and core out. Sounds gross I know, but if I left them there I would eventually get another HS nodule where the hair was stuck. I still check every now and then. I do still shave every week or so to get the random few hairs that still grow.

One of the other things I've been doing the past two months is eating healthier, cutting out a lot of the soda, and trying to drink more water. I did also quit smoking almost 3 years ago, but didn't notice a change with my HS when I did.

I am now happier with life for many reasons, but this is one of them. I no longer fear going to the gym, which I do a lot more of now, about 3 or 4 times a week. I no longer fear going hiking or camping in the summer. I don't fear doing yardwork anymore, in fact I actually enjoy it and look forward to it, it gives me an inner calmness, weird I know. I no longer fear being outside, and that's saying a lot when you live in Phoenix, Arizona.

I've also picked up doing Yoga, I love how it makes me feel. I'm not so much doing it for the "inner peace" I'm doing it for the exercise, I'm enjoying the balance, flexibility, and muscle strength it's been giving me. I'm even doing belly dancing now! I love the exercise of this too, it's really been working my ab muscles and increasing the flexibility there too. The performing aspect of it has helped me become more comfortable with myself and helped me get over some of the insecurities that I feel around people I don't know.


Here are two pictures of my skin now, the redness on them is from bad lighting...not my skin.

And here is one of me belly dancing...

The last month

So I haven't posted in awhile. I started to lose a lot of blood and got a little out of it. I was having a hard time concentrating enough to form a scentence, which is why there was a lack of posting. I stayed off my birth control for about 3 weeks until it went down to spotting and then started taking this Femcon Fe birth control. During the 3 weeks I was off the birth control I had 2 new HS lesions show up and go away, they were relatively small in comparision to some of the ones I use to have. I have one spot where I've had previous HS lesion flare ups, this was one of the worst spots I've ever had in the past, I don't think it had ever healed up completely, even if nothing is coming out I've always had a hard lump there... But anyway it flared up again and hasn't gone away yet. I started drinking about a gallon a water a day and it went down a little.

I've been on the Femcon Fe for two weeks and I've gotten another HS lesion, in addition to the one that hasn't gone away yet. As soon as I finish this pack I'm going to go back on the Seasonique, so far that's been the best brith control for managing my skin issues.

I have a picture to post, but I have to find my cable for my camera first.

December 20th

On the night of 12/13 I unfortunately started spotting, and on 12/15 I had started bleeding heavily. I had just had my mense between 12/2 and 12/7, so this was unexpected. Since I hadn't been late or missed my birth control, this concerned me. I went into the doctor and they are still not sure what is wrong. They are having me stop taking my birth control for a week and then switching me to a different one if the bleeding stopped. This concerns me a little because my birth control I'm taking now, Seasonique, has helped my skin so much. I'm worried that the other birth control, Femcon Fe, won't have this same effect and that my HS lesions will start coming back.

December 8th

I had more laser hair removal today. Like normal, it still hurts slightly. She bumped it up to 38/20 as some of my hair is being stubborn and not wanting to stop growing. She wants me to come back for one more session. I still haven't had any more lumps, so this makes me happy. I'm starting to get excited because after I'm done doing the laser hair removal, I'm going to do some skin resurfacing. The person doing my laser hair removal is an instructor at the school here that teaches it, so she let me know if I come in to do the laser resurfacing (usually done for acne scarring) at the school, she would still be doing it, but that is only $150 instead of $1000, only drawback is that there are students watching. But really I hate my scarring so badly that I don't care who sees me down there..plus, I guess if I had a problem with people seeing my skin I wouldn't be posting it on the internet. The way I figure it if showing my digusting disfigured skin to someone helps more people learn about the disease or helps someone out that already has the disease then it's worth any embaressment I may have over it.

November 10th

I had more laser hair removal done on the 10th. She cranked up the juice on the machine since she would like to have seen less hair growth than there is. It was at 30/20 this time. There was of course the normal swelling that went away by the next day. My skin has been doing good though for the most part. I've gotten one lump on my left cheek where I'm not getting any laser hair removal done, I'd take a picture, but it's difficult to get a picture of your backside. It's been there about 4 days and is on it's way to going away.

October 22rd

Well I got my first HS lump in almost three month. It sucks that I got one, but hey, three months without one....I'm not complaining. This one is in my armpit, where I am not getting laser hair removal. I mainly get them in my groin/buttocks area, but I've gotten a few in my armpits, you can barely see the scars remaining.

Update (10/28) It is completely gone, the only thing that remains is another scar. It didn't last long and didn't get much worse than what is in the picture. Nothing drained from it.

October 6th

I went and got more laser hair removal on Monday, it did get a little easier this time. The settings this time were 38/20, lower on the tanned parts of my skin. Oh and if I haven't mentioned it before the actual lasering only takes about 15 minutes. I found my digital camera so I have some pictures.

This is the hair growth after 5 days (10/4)

2 hours after laser hair removal(note: welting/inflammation does occur but goes away by next day)

October 3rd

So my lack of postings is not from laziness, it is because I haven't had anything happen. My last HS lesion was at the end of July, that feels pretty amazing. The last time it was the infrequent was about 7 years ago when my disease was starting.

Two of the comments I received I figured I would post here for everyone to read instead of replying to the comment... "Question remains - does this helps with your HS, or it is just an esthetical thing you wanted regardless?" and "It has been more than a month since your last post, and I was wondering if there has been any progress? Did you notice any change of rate of new lesions, or even its severity?

This has totally helped with my HS, I've had I think about 6 HS lesions since I've started this (I'd have to count the times I've posted about them because those are the only ones I've gotten), that is the complete opposite of last year around summer time, which is usually when it's at it's worst.

In non-summer months I would typically get 15 - 30 lesions a month, summer months use to be around 25 - 60. This is compared to 6 in the past 4 months. The ones that I've had the severity is definately much less and they last shorter periods of time. There has not been one time this summer that my HS lesions impared my mobility. If I remember right, most of the ones I've had the past few months go away in under a week instead of 1-2 weeks, I think one of them went away in 3 days.

I didn't really want it for esthetic reasons, quite the opposite in fact. I've wanted to get laser hair removal for a few years now because I thought it would help out with my HS. I know everyone is not the same, but my HS has always gotten worse any time I shave, which is why I didn't shave for 3 years, just trimmed. One of the reason that kept me from doing this sooner (the other reason being money) is I was so fearful of having my skin out in the open. I hate how my skin looks, covered in scars and mangled. It might not be "that bad" but frequently when I look at my skin I cry, it's not how I remember it, it's alien to me, it doesn't look pretty like it use to. When I still had my hair it at least covered most of my scars. I could look at myself naked and pretend they weren't there. Now every time I look at myself all I see is the scars. I'm getting better dealing with that than I was four months ago, it's still difficult. I'm trying not to let it interfere with my sex life, thankfully I have a very understanding boyfriend. I would rather deal with the emotional issues I'm having with my body image now than deal with the HS lesions, so even if this only helps my HS a little or for a few months, it's completely worth it to me.

My next laser hair removal appointment is on Monday. Unfortunately my digital camera has decided to hide from me so I can't take an updated picture today. I will continue my hunt for it.

September 3rd

I got more laser hair removal on this day, it's my third treatment. It's still painful, don't get me wrong it's not horrible, and it's completely worth it. They have numbing creams but I haven't used any yet. I actually remembered to take a picture afterwards :-)

July 28th

Well the one on the top from yesterday already drained, so now I just have to wait for the hole to grow over. I have a new one showing up a little lower.

I'm still waiting for my miracle cure....

July 27th

So a few hours after my post on the 24th I started to notice a hard lump under my skin, which usually indicates a HS lesion to follow. Three day's later and it's starting to show up. :-(

July 24th

My skin doesn't hurt today, it's still kind of inflammed though. If you look at the bottom left of the picture, the dark spot is where I've had the hair trapped under my skin for over 2 years.

July 23rd - More Laser Hair Removal

So I went in again for more laser hair removal. It hurt just as much the 2nd time as it did the 1st. This time she did my mons pubis area, up higher on my stomach, and more on the sides of my legs. She did not go around my buttocks area. This time heat radiated more from the area. I mentioned to her prior to start about the area that burned for three days because of the wrapped up hair. She tried to get it out for me, but couldn't. I'm not sure if she skipped it this time or not, because it didn't hurt more than any other area. I'm going to try to get the hair out myself, but if not then on my next appointment they are going to numb the area and get the doctor* to lance the area to get it out. There was definately more swelling/welting this time and my hair follicules were noticibly inflammed. I spent most of the night sitting/sleeping on the couch with an ice pack. I did also use natural remedies to lessen the pain.

This time I actually remembered to look at what kind of equipment is being used. A Palomar StarLux 500 is being used. I'm not sure what the number mean, but on the display the settings she was using was 34 /20.

Just to give you a ball park area as well, for 7 - 8 sessions it is going to cost me $1000. I asked about the armpit area, because if this goes well then I want to do that area too. Since I'm getting the groin area done she said she would only charge $500

*FYI, when selecting a laser hair removal specialist I knew my skin disease would be an issue. It freaks people out, especially when most doctors don't even know what it is. So for my yearly pap smear I selected a gynocologist that knew what Hidradenitis Suppurativa is, he was referred to me by an HS surgeon. The awesome thing about this that worked out is that this gyno office offers cosmetic procedures, including laser hair removal. So this is where I went. In my yearly appointment I discussed my disease with my doctor. Dr. Burt Webb was the most helpful, understanding doctor that I've met with and spoke to about my HS. He of course did not offer me some magical answer, it was the fact that he listened and offered suggestions instead of saying "well what do you want me to do about it" as previous doctors have said. Anyway, I mentioned my desires to get laser hair removal for my HS, which he supported. So I made an appointment with Kellie Jones, to get the laser hair removal. On my first appointment I made sure to print an easy to read factual article from www.hs-usa.org. She reviewed it, and since I had selected a laser hair removal specialist that worked at a doctors office, she was able to speak to the doctor and have him explain that it was okay to do the laser hair removal.

I of course was in pain this day and didn't think about taking pictures.

July 22rd

My skin has been pretty good lately. So far I've had 1 HS lesion in my left armpit. It's been there for two weeks and is finally starting to go away. I've had one threaten to show up on my tailbone, but went away before it fully developed. Then I've had the previously mentioned on in my groin area, and then one more since then. Then I had one where my butt cheeks rub together. So all in all I'm doing good. Last year about this time I went to a hot and humid state, of course sweat a lot and then got 30 lesions. I again went to another hot and humid state most of last week, sweat lot, but came back and have not had any new lesions. I partially attribute that to the birth control, since I wasn't taking this kind last year.

A good portion of the hair in the area has fallen out, more than I expected actually. The darker/thicker your hair is more sessions it takes, I've been told I'll need 7 - 8. This much hair gone after the first visit makes me wonder if I'll actually need all of them. (7/24)Unfortunately I did not get a picture before I had more laser hair removal.

June 25th

So far everything is going okay. I've had 1 HS lesion in my groin area, but it went away within 4 days.

June 19th

Most of the pain was gone the next day after the laser hair removal, however there was one section that hurt for three days. This was the part that I have had a peice of hair caught under my skin for over two years now, so that was the reason and expected.

Here is a picture from that day. As you can see there is hair growth already.

June 16th, 2008 - Laser Hair Removal

Had an appointment at the Dr. Office to have the Laser Hair Removal performed. It was pretty painful, especially where I had some HS lumps. She did my mons pubis area, an inch down both sides of my legs, on then on my buttock where the cheeks rub together. It took about 25 minutes, and wasn't painful right afterwards. Some of the hair fell out right at the session, but the rest will come out over the next few weeks. As I drove home the pain began to increase. I was forwarned that there might be welting and that that was a good thing. I took some Ibprofen when I got home, it wasn't bad enough to stop me from going back to work, but it still hurt. I spent most of the evening sitting around.

Had an appointment at the Dr. Office to have the Laser Hair Removal performed. It was pretty painful, especially where I had some HS lumps. She did my mons pubis area, an inch down both sides of my legs, on then on my buttock where the cheeks rub together. It took about 25 minutes, and wasn't painful right afterwards. Some of the hair fell out right at the session, but the rest will come out over the next few weeks. As I drove home the pain began to increase. I was forwarned that there might be welting and that that was a good thing. I took some Ibprofen when I got home, it wasn't bad enough to stop me from going back to work, but it still hurt. I spent most of the evening sitting around.

June 2nd – June 15th, 2008

Skin in the Laser Hair Removal site is doing good. There have been no HS lesions. However the hair has already started to grow back.

On June 15th, I took the scary plunge and picked up my razor and shaved all my hair off in the area, which was needed for the procedure. I'm hoping that there won't be any negative reprecussions of this, but there probably will be flare ups.

June 2nd, 2008

Had Appt at Dr. Office, performed laser hair removal in small section to see how my skin would react. The procedure was painful as there is a lot of scar tissue in the area.

Prior To Start

My HS has been in a pretty good state lately. They have gotten better since I started taking Seasonique, allowing myself to only have a menstrual cycle once every three months. I have a few (3) lumps going right now, and a few sinus tract, all in all I'm doing pretty good. At any given time I have usually have at least 1 lesion going, but it is better than July of 2007 when I had 30 going at one time.

Precusor - My thoughts, theories, and beliefs on Hidradenitis Suppurativa

There are many theories with HS, but the true hard fact is no one knows what causes HS and there is no cure. There are different treatment methods that work with different people, but they don't work for all, and they only maintain or slow down the progression of the disease.

First and foremost I cannot stress how deeply my belief is that HS is NOT a bacterial infection. There are some quotes on the right side to support my theory from a medical standpoint. For me personally, all of my cultures but one have came back negative for bacteria. How can a disease be a bacterial infection when there is no bacteria present? Now I'm not saying a bacterial infection can't occur, because it can, you have an open wound, bacteria can get in there. But any bacterial infection is secondary, it is not the cause of the disease. Because of this I will not take antibiotics unless I actually do have an infection. I would like to give a shout out to the Dr. who asked me when I showed him my lab reports that showed my cultures did not have bacteria in them "how can your previous doctor know if the bacteria was MRSA when he didn't find any bacteria"...

The next thing I feel strongly about is HS is related to hormones. There are some quotes on the right to support my theory from a medical standpoint. My HS started after puberty at 16. I began to notice over the years that I would get flare-ups the week before my menses. So I started to take Yaz (Yasmin) continuously until I started to spot, which was about every two months. This helped out because it reduced the flare-ups. Over time that became less effective to take continuously, so I switched to Seasonique. Seasonique is a 3 month birth control, so you only have 4 periods a year, this helped out even more.

I also feel strongly that a component of this disease is follicular occlusion, meaning the hair follicle getting blocked. In my case I noticed that my HS would flare up when I shaved, so I stopped shaving and went to trimming only and that helped. I have a few skin issues, so I wash with natural soaps, or ivory if needed. I stick with sensitive skin detergents.

I also think that heat plays into the disease. For me it always gets worse in the summer, last July I had 30 nodules flaring up at the same time over my groin and buttocks.

I also believe is that HS has a genetic link, there are many cases of familial HS. Although no one in my family has been diagnosed with HS, my grandfather "had a lot of boils" one of the typical misdiagnoses of the disease.

Below are just some of the medications I've taken for Hidradenitis Suppurativa.

• Keflex 250mg - Noticed no more effectiveness than if I had not taken them
• Keflex 500mg - Same as above
• Penicillin - Same as above – also was extremely itchy while taking it
• Bactrim DS - No marked effectiveness, had to stop after three days as it was making my throat extremely tight, it was difficult to eat/breath. Also had nausea and diarrhea.
• Ciprofloxacin - No marked effectiveness
• Clindamycin 300mg - No marked effectiveness, had to stop after three days as it was causing nausea, diarrhea, and vomiting.
• Minocycline 100mg - Took for two months, and was switched to Doxycycline. More nausea saw no benefit.
• Doxycycline 100mg -Even more nausea, saw no benefit. Switched to Tetracycline.
• Tetracycline - Also taken for two months with no marked benefit. Discontinued because of lack of effectiveness of Tetracycline medications and nausea.
• Cleocin T Gel - Use around skin when it is broken around the lump. Have seen no difference with or without it, but it is continued in hopes of preventing any secondary infection with an open wound.
• Benzoyl Peroxide Wash - Washed with it for a few weeks, but it irritated my skin too much, and again was seeing no benefit.
• Triamcinolone .1% - No bad side effects, but didn’t notice any difference whether it was used or not.
• Hydrocortisone 2.5% - Same as above
• Yasmin (Yaz) - This has been helpful. J Since the lumps tend to be aggravated around menses, the ob/gyn approved me taking Yaz constantly until spotting occurred, and then I was to let myself menstruate. This was effective in the beginning but now I can only take it about a month and a half before I start spotting
• Seasonique - This has been helpful too for the same reason that the Yasmin was. However with Seasonique I only have a period once every 3 months.
• I&D - It was painful of course, the healing time was greatly extended from the normal I was experiencing at the time
• Benzocaine 20% - Helps greatly with pain in smaller lumps

Some more info about me..I started smoking cigarettes when I was 14 and quit when I was 22, it will be 2 years in a few months. Although it was a great accomplishment and I'm glad I did it, it had no effect on my skin. I've taken a lot of antibiotics over the years and I'm sure that I've taken more than listed above...listed above is just what I had pill bottles for when I wrote it two years ago. I no longer take antibiotics unless I know I have a secondary infection, which only happens 2 or 3 times a year. Normally I leave them alone for the most part. I use Benzocaine to numb my skin to make the pain less. I use my own natural pain remedies when I'm at home. If they are really bad and I can't stand the pain I'll go get some Vicoden or Percocet. I started natural pain remedies because I was taking pain medication so much last year because I was in pain all the time that I started to become addicted to Percocet. Since I'll have to take pain medication all my life, I really don't want to become addicted to it or build up a tolerance, so I only take it when I can't handle it. I try to exercise on a regular basis at the gym, however sometimes it's more like twice a week instead of the 5 times a week that I want. I am not overweight. I strongly believe that you are in charge of your own health and you know you body better than any doctor. Your doctor may know more how the typical body functions, but you know how your body reacts. Everything I know about my disease is not from reading websites out on the internet, but actual medical documentation. You can get access to a whole bunch of medical documents by going to the HS Research Database link on my main page. When I found out what the name of my disease was I was left to research it on my own. My doctor did not take the time to explain the disease to me. However he might have not know, since my experience has always been, since I educated myself on the disease, I always know more about my disease than my doctor does. Quite a few of the doctors I've seen haven't even heard of the disease, so I always take medical documents with me.