I have had Hidradenitis Suppurativa (HS) for approximately 12 years. I never had HS until I went through a premature menopause at age 41. I also have psoriasis. I was recently diagnosed with diabetes.
In my opinion, HS is a "triangle disease". HS has very obvious hormonal, endocrine and inflammatory components. I understand it completely in women. Look when women are first and/or worst affected: puberty, menstration, birth control methods, childbirth, perimenopause and finally (and more rarely) menopause. Men with HS often have very low testosterone levels.
Why do some people see improvement when they lose weight or change their diet? Besides reduction of "skin-on-skin" contact and possible reduction of sweating, what could explain this phenomenon? If we look at the endocrine "leg" of the triangle, better blood sugar control could explain it. Adopting a diabetic diet with its low carbohydrate count CAN help you lose weight as it lowers your blood sugar. I like to call a good diet the "God Diet". If God created it in nature, it's on your diet. Notice how the "God Diet" is relatively low in carbohydrates, contains moderate protein and lots of vitamins and minerals? God did not make Twinkies; we did! Being overweight does not cause HS. It is far more complicated than that. Diabetes is strongly associated with other hormonal diseases. Women who are "hormonally challenged" like those with Poly Cystic Ovarian Syndrome (PCOS) are also prone to diabetes. Those women with PCOS who are having a hard time getting pregnant often can be helped with metformin, a drug used in the treatment of diabetes EVEN IF THEY ARE NOT DIABETIC. If you have a problem with yeast infections, think higher blood sugar levels. Men with low testosterone often have diabetes, too, or are at risk of developing it. I HIGHLY recommend all people who have been diagnosed with HS or think they may have HS, to visit an endrocrinologist and have the complete panel of blood tests done. You may be surprised what they show (like my premature ovarian failure or POF).
I have virtually cured the HS lesions in my underarms. I say "virtually" because I have had one lesion in 10 years. I had laser underarm hair removal. The one lesion that I did get was immediately following shaving of some leftover "whispies" (You can barely even see them). HS is a "clogging disease". Removing the hair shaft from its follicle allows for more "wiggle room" for sweat to be released. A number of HS sufferers stop using anti-perspirant because of its clogging factor. Drinking plenty of water helps to dilute one's sweat. Showering after exercise does not allow sweat to stay on the skin. I am considering having Botox treatments on my inner thighs done. I want to reduce the sweat factor as much as I can. I do very well in the wintertime, but not so great in the summertime. I have kept my disease as bay using as many preventative tips that I can learn from other sufferers (like boy-leg panties and tea tree oil, to name a couple).
I am interested in Tumeric. It makes sense. Long before antibiotics were discovered, people used other substances known for controlling infections. Tea tree oil is one. Honey is another. Wine was used as an antiseptic. Olive oil was used in biblical times for skin problems. When modern scientists examine these substances today, they can explain why they work.
One topic that I want to bring up that is not popular to hear is smoking. I've read several studies that implicate smoking in the development of HS. Quitting smoking doesn't seem to affect HS much, but never starting to smoke in the first place is a huge factor. There are genetics behind HS sufferers who have other famly members afflicted by HS, but smoking may be the kick off behind those without the obvious genetic link. The link between smoking and HS was as high as 90% in those studies. I once went to an HS support group meeting. There was a group of approximately 15 of us who went out to dinner together. I asked around the table who were smokers or ex-smokers. Of the 15 people present, only one person was a non-smoker/never been a smoker! That particular woman never had HS until after she had a complete hysterectomy - a hormonal-challenged woman of normal weight. Why didn't our group reflect the percentage of smoking adults in the United States? Why did our group reflect a smoking rate of over 90%? I mentioned earlier that I have psoriasis. Did you know that psoriasis and smoking have a connection, too?
I think HS can be conquered if we can attack it in its earliest stages. Most diseases are better managed before they really get bad. Early diagnosis is key. Please share with others what works for you!
Paula from NC. I like so many others are glad this site exist. HS is terrible to deal with. Have had mine for 40 years but not as bad as some. When I was in my 20's , living in SC, my OBGYN Dr put me on Erythromycin pills. The boils would be the size of a marble full of pus and blood. Some when touched would send a pain like a needle going straight in. The doseage was 2000 mgs a day for about a week. Taking Erythromycin has never caused me a days problem but some Drs may shake their heads no to put someone on this medicine for a long time. This dried up all the boils and inflamation for about 3 months then it would start up again. Process would have to be repeated. Of course I would get lazy and just deal with it. Over the years the infection has lightly spread up above the hair line. Now getting off my duff and going to a new OBGYN Dr she put me on Doxycycl. Before one week was up no boils, itching or inflamation. Just being knowledgeable about my symptons and treatments HS needs to be treated from the inside not outside. Hope some of this may shed some light on anothers situation. Best to all Hs suffers.
I read a lot about peoples boils draining on their own. I have only had HS for about 4 years now, and none of mine have ever opened on the surface. They are always deep and VERY painful! So painful that I have had them lanced and drained by a docter before they could get to that point. I can not even imagine waiting for them to surface.. Ouch!! Because of them always being deep I can not understand how anything applied to the skin will help?? Within one year I have had my armpit lanced 8 times and my groin once always deep and about nickle sized. Am I the only one who has a situation like this???
Hidradenitis: It is great to find this web page to read what is and is not working for different people. I've been diagnosed with HS for three years now. Tried most of the things on this page and some would ease the pain and make HS bearable, but no remission for me. I pray and hope for all of us, that a "cure" is found sooner than later. Just wanted everyone suffering with this currently incurrable disease to keep your head up. BTW as a single female, how do you explain this to your boyfriend or potential boyfriend? It looks horrible to me, especiallly when there's drainage, much less someone else. I have been tested for MRSA and Staph infections and they came back negative. I've been told it's not contagious, but tell that to someone you want to be intimate with. Anyone have any suggestions on how to discuss HS with potential mates?
Hi. I am so glad that I found this site! :) I really thought I was alone with this terrible disease. I have had HS since I was around 10yrs old. I am now 38yrs. Like many of you every doctor that I went to for many years gave me a different answer and a different treatment. I have been on so many different treatments that it makes me sick just to think of it. What I did notice though is that both times I was pregnant that I hardly had any flare ups. I also notice that when my hormones are going bonkers the boils will subside or act up depending on what my hormones are doing. I always have at least two going at a time if not more. Because certain areas are now numb (i believe because of the boils) sometimes I don't know that they are there until I notice them draining.
I had surgery about 5 years ago under the breast to try and remove some lesions that would not quit draining. What the doctor did was "an upper tummy tuck". I scarred miserably and they were back within two years. I now take magnesium tablets and that seems to help some. I also have found that prescription strength Silica and Hehp Sulph works great at the onset of a boil. It speeds the process up for me. I also use a salve called RID. You can buy it at the pharmacy. This helps with the pain to a degree. I plan to try some of the suggestions that I have read today.
Thanks for listening.
Hi there, my name is Liam and I am from Sydney Australia. I am a 30yo male.
I have had HS from the age of 15 roughly. I have even had a Dermatologist take a biopsy off me in 2000 and not tell me I had HS, all he said was it was a Follicle issue.
After breaking down several weeks ago at the local doctors is when the Doctor told I had "Hidradenitis Suppurativa".
At this point in time I am in severe pain as I have multiple boils under my armpit, and several on my bottom, oh, should I mention that I am sitting sideways! They have been there for about 8 months now and they go and come back. There are some days when I am in so much pain that I cannot go to work. The other worse thing is, I love tennis and coach the game also, due to this illness, I am no longer able to play & coach.
This disease has stopped me from maintaining a relationship and has made me so depressed.
Today I googled "Hidradenitis Suppurativa" and read as much as I could until I went cross-eyed, and I think on the 5th page in the search I clicked on this link.
I have now been reading everyones testimonials on this site for the last 2 hours and have not stopped crying . Snot everywhere, sadly pus later.. It is so much different hearing from others who have the same problem.. I honestly thought I was alone.
I can't even believe that I am writing this up to be posted, I have never been compelled to do anything like this on the net.
Whoever has taken time to maintain & create this site, thank you.
I will try the Turmeric Remedy and keep all posted.
(Melbourne , Australia)
I'm Michael and suspect I have this condition called Hidradenitis Suppurativa. Although I'm British I live in China and have had two operations in the last three years over here. I'm feeling quite depressed at the moment since my last operation was only three months ago and the wounds have not healed fully.
I had three big holes in my groin area after the operation and words cannot express the pain I went through. I've been reading up on this disease and it seems to fit exactly with all the sypmtoms I got.
It all started with lumps in the groin area. These became swollen after a while and eventually burst. I had three interconnected tubes connecting the different sores and so the doctors removed all the surrounding flesh and went quite deep as well.
After the first operation I said to myself I would never have that done again. After the second operation recently I thought the same again. Never again.
The thought that this problem might just re-occur over and over for the rest of my life is just unbearable. The thought that I may need another operation in 12 months or two years just fills me with dread.
I just don't know what to do. Phrase 3 Hidradenitis Suppurativa really sucks!!!
I was reading about a surgery procedure that looks far more painful than what I have endured to date. And the Doctor at the local hospital showed me some pictures of the patient after the surgery and it looks like all the flesh around his buttocks has been removed.
Has anyone out there had this operation or something similar? Was it successful? Can you offer any advise or suggestions?
My email is: [email protected]
Thanks for any help you may have!
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(The Beach, Canada)
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(Las Vegas, Nv)
I guess one could say that I've suffered from HS for close to a decade. Yet, didn't really have a name for it for years and years. I am a few months shy of my 30th birthday and I remember when I first started to get the lesions in my groin area and thought they were an irritation from ingrown hairs and shaving. Not much later I feared they were some demented STD that I hadn't heard of... even though my fiance didn't have they same symptoms. I spoke to three different doctors that said they were weight related, if I lose weight and keep them clean they will go away. I have always been cautious about body odor so keeping it clean wasn't the problem and my weight has fluctuated over the past ten years but the sores got progressively worse. It wasn't until about a year ago that I started to try and research for myself what exactly was going on with my body. I believe that I have been blessed to not have ever experienced some of the worst of it yet. At their worst, the sores were no larger that a large grape. Still painful and still distracting from work and relaxation and so embarrassing that I had lost all confidence in my sex life. My armpits, stomach and groin area, i fear, are permanently scarred. I am writing to say that at the very least, finding this website has allowed me to feel less alone. Knowing that HS is a real ailment that others live with daily helps me to not feel so stupid for the misdiagnosis of uninformed health practitioners, or the awful days when I had to change my clothes three times in order to find the outfit that HURT the least, or the utter disgust I have felt seeing my naked body (let alone letting others see it). I have read advise from others who understand this pain, others who have tried remedies and failed or succeeded. I work at a health food store, and until tonight, haven't truly thought that there could be some relief to be found in the place I am everyday! I am planning on trying Tumeric starting tomorrow. I can only keep my fingers crossed that the first time trying to end this pain will be the charm. However, if it is not, at least I have so many other helpful suggestions on this site that I can always keep trying until I find the answer. Thank you Thank you Thank you!
Im only 15 years old and i found out i had HS about 2 years ago but the symptoms started when i had started to get my period around age 12. I thought it was from my weight so for the last 3 years i have been unsuccesfully trying to loose weight. I only just started to think about my future with this. and so i researched it. I dont have the severity of this condition as some people do but it still scares me. So, thank you for the tips. Since i suffer from depression as well, this disease doesnt make it any better. This is probably going to be more helpful than what my dermatoligists give me. HS has ruined part of my social life.. i was wondering if any body has any Wifes or Boyfriends or any signifacant other and how you told them about it.
I just figured out what I have tonight on this site. I have had HS for 11 years. It started when I was twelve years old. It started on my neck, causing embarrassing/painful lumps that people could see. A doctor told me that is was in the "fungus family" and told me to use compound W. This got rid of it, and left scarred holes in my neck. A year or two later it started between my thighs and under my stomach, and the compound W had no effect other than severely burning. Tried fungus creams... My husband has been supportive, but I feel for and understand the self-conciousness for the women (or men)who are finding new mates. It is embarrassing. I can't believe a cure may have been in my cuboard the whole time (i may have to purchase the capsules)! Anything is worth a try. I was getting to the point of wanting to scald all of my skin with as many chemicals as I could think of to get rid of it...the turmeric seem like a wonderful alternative, thank you all for the info. I will try to report back if I find this cure helpful!
Suffering from Hidradenitis Suppurativa (HS), Looking for cures!
Hello, I've been suffering from HS ever since I can remember. I'm now 20, and my mother tells me I've had it since I was very young. Around the age of 11, I saw a [rather uneducated] dermatologist regarding the hideous and painful sores I had in my groin and inner thigh areas. After showing her, she actually had to consult another dermatologist, and refer to some Skin Disease Encyclopedia, based on what the boils looked like. This dermatologist offered me an antibiotic to treat it, and I remained on the drug for roughly 6 months, with no relent in sight. After the antibiotic failed, I was prescribed an ointment (clindamycin), which too failed to have any impact on the sores after months of diligent use. When all this failed, the dermatologist recommended intralesional injections-- they basically inject something (I don't recall what was in the syringe) directly into each boil. Left with really no other options, I agreed to take the injections. The dermatologist administered three injections one day, which were pretty painful (mostly due to the sensitive area of the body) and left scars, BUT scared off the boils. I had two more injections after that day before I couldn't take it anymore. The scars still remain, but I'm happy to say I haven't had any outbreaks in those 5 spots since the injections.
I went a few years in remission, with the occasional flair, however nothing I couldn't handle. About two years ago, I had another outbreak-- a very, very bad one. I didn't do anything about it, thinking it was just stress or irritation, and I'd go back into remission shortly. Long story short, that didn't happen, and the HS actually traveled north, so to speak, and I now have very embarrassing scarring and boils underneath my breasts. When I first noticed the spread to my breasts, I immediately called a dermatologist (a different one from the first, since I moved out of state for college). This dermatologist recognized the disease right away and seemed very familiar with it. She explained the lack of a cure for HS, and after telling her of all the medicines I'd tried years prior, she said the only option left was isotretinoin (sp?), aka Accutane. I was hesitant to begin a cycle on Accutane, since the FDA highly regulates the drug due to its connection with blindness, frequency of headaches, severe depression, and severe birth defects, if the child were to survive birth (miscarriage and stillborn children are common while on Accutane). However, with my options dwindling, I agreed to start Accutane. I'm currently in my third month, and have seen slight improvement, but nothing to jump up and down about. :/
I plan on seeing this cycle through (I have about 6 months left), but don't foresee anymore cycles. The risks are too high, and the payout is too low. I've read some other posters' remedies, such as epsom salt baths, tea tree oil, antibacterial bar soap, etc., and plan on giving some of those a try. I'm hoping something helps, because the condition is extremely embarrassing. I feel exposed, damaged, and don't feel like I can have an intimate life with my boyfriend, comfortably.
I am so happy to have found this site, it's a reminder that I'm not alone in my physical and emotional pain and suffering. I hope one day I live to see a cure for HS, and pray that doctors, especially dermatologists, become more educated on the subject.
Thanks, and good luck to everyone sharing this fight with me.
(Los Angeles, Ca)
hi im 23 and i have hs. After reading and seeing what other people have gone through and looking at some of the state that their HS have developed into, im really really upset and sad and i just need to know from everyone who is suffering from HS does HS get worse and worse as i age? please someone help answer this. Its really stressing me out. Im heartbroken. PS i really dont know where to post my questions. im so sorry, im new.
(San Fernando, Philippines)
My daughter has Downs Syndrome and has been suffering from Hydradenitis Suppurativa since she was 9 years old. She is now 25 years old and in fact she is home today with breakouts under both arms. It seems to flair-up just a few days before her menstual starts. Apparently for her it may be a hormonal deficiency. We have been to numerous physicians but not one has offered any kind of support for this condition. She has been on the Omega 3 after every meal but it does not seem to help. I find that soaks in Epson salt and warm water hastens it to a head. At night I apply Ichthammol ointment 20% to the area (which really damages your clothes - stain will never come out), however it does bring it to a head. Since my daughter has hyperthyroidism and is on Synthroid daily, I am afraid to try different remedies that may compromise the effects of the Synthroid. So if anyone out there who may be in the situation my daughter is in, I am so very excited to hear from you.
Im 32 and has suffered with HS for about 17 yrs, I have tried everything from antibiotics to steroid treatments. Oh did I mention Nothing worked I am more saddend by the psycological affect that it has. I have been with the same guy for 15 years he is now my husband and Im still ashamed to show him my outbreaks. I try all that I can do to not let him see my armpits, and times that he wants to be intimate I have to turn him down because I have an outbreak in my private area. Very stressful but I have been dealing with a very long time, I just want some relief because no one I know can understand my pain.
I have suffered from hidradenitis since puberty. I am now 40 and male. I have read comments about the effectiveness of turmeric for hidradenitis on this site and on others and having suffered in silence for so long I am optomistic, yet skeptical, as to whether it will work. I, too, have tried accutane (God-aweful experience), antibiotics, tretenoin cream, various soaps, etc. (all to no avail) and am very close to making the choice to have a sinus tract surgically removed from my groin. The pain is, as everyone knows, excruciating and until recently (probably the last 1 1/2 years) the disease has manifest itself on both buttocks cheeks. I have connecting sinus tracts all over my bottom (and also have the embarrassing scarring to prove it) and I can only guess that the tissue is so damaged from years of boils on my bottom that the disease needed "fresh meat" and headed to my groin in search of new apocrine sweat glands. Lovely, huh? All of this said, I hope it is understood that I have lived with this affliction for 30-some painfully (literally and figuratively) and, at times, humiliating years and no physician has been able to prescribe a medication that helps.
Inasmuch as I continue to search for a cure, to no avail, I am cautiously optomistically that turmeric is finally the magic bullet that will end the years of pain, scarring, embarrassment, smelly discharge and useless/expensive trips to doctors, who nearly always say that I should be glad it is "down there" and not on a visible part of my body. I always have been glad for that but somehow their words lack true sympathy for the debilitating nature of the disease.
So, last evening, after reading posts regarding turmeric helping combat/cure hidradenitis I ran out and bought turmeric from Walgreens. The pills are 950mg with pepper as a buffer (I guess). I took two pills last night and then made a salve from another pill mixed with neosporin and applied it to the boil (with sinus tract) on my groin. I have had this particular oozing, painful boil at this location for about 10 months. It started to tract about 2 months ago. This morning I took another 950mg pill, a second around noon and a third around 6PM. I'll let you know how the treatment works out after a week.
(Toronto, Ontario, Canada)
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