HS (Hidradenitis Suppurativa) and PCOS
Chances are you have never heard of Hidradenitis Suppurativa (HS) before or how it may relate to PCOS.
What is Hidradenitis Suppurativa (HS)?
The HS-USA website describes Hidradenitis Suppurativa as follows:
“Hidradenitis Suppurativa (HS), also known as ‘Acne Inversa’, is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact – armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration — hence the name) involving significant scarring.
Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These ‘flare-ups’ are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.
HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million – potentially up to 12 million – Hidradenitis Suppurativa sufferers in the United States alone!”
Hidradenitis suppurativa is a hormonally related chronic, painful, condition that is often misdiagnosed as a problem of poor hygiene. The incidence of HS is increased in PCOS. Hidradenitis Suppurativa and PCOS can go hand in hand. HS has been linked to a hyperandrogen state.
Diagnosis & Treatment of Hidradenitis Suppurativa
Some studies suggest that female patients presenting with HS should prompt investigations for underlying PCOS and insulin resistance. (2) Talk to your doctor if you suspect that you have HS.
Recommendations for all patients include avoiding trauma to the affected area, losing weight, smoking cessation, using gentle antibacterial soaps, and avoiding shaving these regions. Antibiotics are used for secondary infections, but they do not alter the primary course of disease. Antiandrogens may be useful; however, in trials, only finasteride has provided minimal relief. (3)
If you suffer from HS you might also try some the natural remedies below:
- Changes in diet avoiding inflammatory foods, and triggers like wheat, gluten, dairy, caffeine, foods high in refined carbohydrates.
- Warm compresses with apple cider vinegar, and taking hot baths with apple cider vinegar in the water.
- Turmeric: 1 tsp morning and at night in warm water.
You can find more info regarding natural remedies at http://www.earthclinic.com/CURES/hidradenitis_suppurativa.html
Amy Medling, best-selling author of Healing PCOS and certified health coach, specializes in working with women with Polycystic Ovary Syndrome (PCOS), who are frustrated and have lost all hope when the only solution their doctors offer is to lose weight, take a pill, and live with their symptoms. In response, Amy founded PCOS Diva and developed a proven protocol of supplements, diet, and lifestyle programs that offer women tools to help gain control of their PCOS and regain their fertility, femininity, health, and happiness.
Resources:
1 Alikhan, Ali; Lynch, Eisen (2009). “Hidradenitis suppurativa: a comprehensive review”. J Am Acad Derm 60 (4): 539–561. doi:10.1016/j.jaad.2008.11.911.PMID 19293006.
2. J Cutan Med Surg. 2007 Jul-Aug;11(4):125-31.Hidradenitis suppurativa in 64 female patients: retrospective study comparing oral antibiotics and antiandrogen therapy. Kraft JN, Searles GE.
3. Jansen I, Altmeyer P, Piewig G. Acne inversa (alias hidradenitis suppurativa). J Eur Acad Dermatol Venereol. 2001 Nov;15(6):532-40. Review
I am soooooooo glad you wrote this article!! I have been suffering from this ever since I was diagnosed with pcos. I have scars under my arms and my upper thighs. I have had boils that have had to be cut opened and drained. I never knew what this was until I saw a talk show and they showed a women with it (they did not say she had pcos) but I recognized the same marks and scars so I looked up what Hidradenitis Suppurativa was and it matched what I have. Anyway I think this is a great article and I am so happy you are spreading the word about this.
Thank you
~andrea
HI again!
Just a few more things on this…I have lost weight since last year and that has helped with this problem I had also started taking turmeric capsules a year ago and that was not in relation to HS it was because I heard it was good for you but reading this I think it has helped with the HS. I also use anti-bacterial soap in the shower and since I have started getting more regular periods since starting progesterone cream last year I have noticed that the HS usually will flare up right before my period is going to start…like a few days to a week before it starts but other than that I don’t get them as much as I used to.
Thank you for publishing this information. While I don’t think I have this condition, I do suffer from cystic acne that is very painful and takes a long time to heal. Sounds similar to what you are describing here but far less severe. I can’t imagine how debilitating this condition must be for people who are suffering with it – and to feel shame or embarrassment about it must make it all so much worse. For so many of us, covering up our various symptoms is so normal…I can’t tell you how liberating it has been for me to see you TALKING about all of this stuff. I’m convinced now that talking and sharing with one another is a huge factor in staying healthy.
I’ve never heard of this condition and while my initial reaction is panic and frustration at yet another PCOS thing to worry about ~ knowledge is power… this (condition) seems heartbreaking. I guess all we can do is take care of ourselves and monitor our PCOS symptoms with diet and exercise (two things I need to get better about). I was diagnosed with PCOS in October 2012 and it felt almost like a death sentence… melodramatic, yes, but at the time it was pretty disheartening to hear as I had just had my first (and only) pregnancy/miscarriage the year before.
I am so greatful you wrote this post. I got symptoms for PCOS and HS at the same time although was diagnosed at different times. I figured the two might be related but I could never find any data on it. I have noticed that HS flares up around the time I get my period and has improved with a change (healthier) diet..
I have this 🙁 unfortunately they are most dominant in my groin area. I also have some flare up in my armpit and skin folds.
Like Andrea I also use an anti-bacterial wash which helps keep the majority of fare ups at bay. Along with the weight loss and reduction in “junk food”. I find when I have eaten too much fried or processed food the spots on my face are worse and so too are the HS I have.
A fab article as always Diva 🙂
I have known about this issue for years, as both my mother and I suffer from it. The thing is, we always just called them sebaceous cysts. Something I learned years ago, I do NOT wear pantyhose, tight pants or jeans, no tight shorts, or yoga pants, anything of that nature, as it can irritate it, and bring it on. And I get my flare ups even more so if I am not on my period. So, its one half crap, 50% pain. I either am on my period for who knows how long, or have a flare up. And no, the medications for pcos do not work for me. I have tried bcp off and on for years, they will work for a short time, and then stop. And Metformin causes me to hemmorhage. So, the doctors are trying to figure out what to do with me, I am a case and a half, lol.
I am so happy you wrote about this. Thank you so much. I ‘ve been making the connection between PCOS and these boils for some time. I am so sick of the doctors who say it’s poor hygiene and the heat! Even though I don’t think doctors will care about this, it’s nice to know that there are people who understand you and go trough the same.
I ‘ve been getting boils since I was 17, what I noticed that they r more likely to appear in the summer and during stress and poor eating habits. I also think they are related with milk, the gut flora and sugar. although I sometimes take antibiotics when they are too painful and large, it’s by having PCOS eating habits that I can keep them away.
My daughter was diagnosed with PCOS at 14 and she has cysts that flare up in her groin, no doctor has ever mentioned HS I will have it investigated next time. She also has a pilonidal sinus that was surgically removed when she was 15. I have asked many times if this was related to her PCOS but the only Dr who thought it may have been was the surgeon. I would be interested to know if there has been any research that shows that the pilonidal sinus is something that women with PCOs have a greater occurrence of.
I am beyond thrilled to read this! I’ve suffered from HS for years but never knew (and none of my doctors knew) that this could be linked to PCOS. I’m so happy to know that it’s not just me. It gives me hope to know that there are other people who have this and there are things I can do to help reduce this! Thank you so much for this article!! Huge sigh of relief.
Omg I was diagnosed with pcos at 18 and HA at 20 (after suffering with it for around 2 years) not sure why not a single doctor told me the two were connected (dermatologist, gyno, and general practitioner).
I’ve had every single horrible complication of this disease, at least I was able to have my daughter.
I was diagnosed with this before PCOS I didn’t know they went hand in hand. I’ve lost 167lbs in hopes of correcting pcos but still struggling with infertility. I was ashamed but had to get help got the pain and uncomfortableness. They can’t really do anything to help. ; ( Thanks for sharing
I am so thankful information is spreading about this condition. I suffered with HP for years and never knew what it was, what caused it, or how to treat it. I have tons of scars on my inner upper thighs and under my arms. The scars are purplish for a very long time, then eventually fade to a white pitted scar. I have at least 20 of these scars and they are so ugly! However, in the 2 and a half years since I was diagnosed with PCOS, I have lost almost 90 lbs, and most of my PCOS symptoms are history, including HP. I will occasionally get a flare-up, but it’s no where near as painful as in the past. There were many times walking was excruciating due to the pain.
Doctors never knew what it was. I never had them lanced. Spreading the word about this condition is of utmost importance! Thank you!
Losing weight and controlling you PCOS will bring relief!
Thank you very much for sharing this information.
In your study did you find anything that suggests this would be misdiagnosed as MRSA? I’ve been suffering from this bumps/boils for years and was given a diagnosis of MRSA, but have always been skeptical of this.
I will definitely bring this information to my dr. and again I appreciate the information 🙂
Thanks,
Sonja
I have had boils off and on for years and never made the connection to PCOS until reading this article. Anti-bacterial soaps were mentioned, and one thing I wanted to say that has helped me significantly is using Hibiclens antiseptic cleanser on boils. For a while I was getting lots of boils and using Hibiclens was suggested by my doctor. I think it is what doctors use before surgery. I washed my boils with this multiple times per day and it really helped. I also use anti-bacterial soap (Dial) in the shower and since doing this, I have had very few boils.
Wow I had a pilonidal cyst removed at 15 as well and I have hs and pcos. And I also have cyst all over my head that I eventually have to remove, because they get so big and painful! She is not alone! These are very horrible auto immune diseases!
I notice the same thing right before my period is supposed to come I get a flare up. 🙁
In addition, to low glycemic diet and exercise, metformin is often very effective and reducing this problem.
At what dosage? I’ve been on 2000 mg/day of Metformin since May 2014 and haven’t noticed any decrease in HS flares; in fact, it’s been getting worse. Any links to studies or words of advice would be appreciated. 🙂
I have had boils/HD PCOS for many years. Cultures always came back negative for bactera/mrsa/staph. I finally went to the dermatologist and she told me to use a benzyl peroxide wash once a day ( its is over the counter and can be found by all the acne stuff at drugstores, i use panoxyl). Its been five days there is almost no sign of any boils (I usually have 4-5 active at a time) . It has seriously made every aspect of my life better. I urge those of you (with low severity HD) to give this a try. I can sit, move, sleep, and dress without pain or discomfort. I’m so happy.
Vitamin E oil and capsules work wonders. I get the super big painful ones in my underarms and recently found an article on Vitamin E. I used the oil in my smoothies and topically on the cyst and within a day the pain was gone and within a few days the cyst itself was gone. What a lifesaver.
I am currently 62 and have been post-menopausal for 10+ years. I was diagnosed with PCOS when I was 26 ….. and have concurrently suffered with HS. I have suffered with most of the symptoms of PCOS since I was an adolescent. A thorough blood analysis was performed by an endocrinologist when I was 40 …… and I was diagnosed at that time as having a hormonal (androgen) imbalance — for which there is no cure. It is genetic. It has plagued me physically and socially and psychologically my entire lifetime. I would not wish this horrible condition on anyone. And btw ….. once you develop PCOS [during the onset of puberty] ….. it doesn’t go away with menopause. I continue to suffer from symptoms. As a matter of fact ….. my HS has gotten worse over the course of the past couple of years. The only difference between my acne boils from the time period of my youth and the time period of my post-menopausal years is the LOCATION of the acne on my body. During my youth ….. it was on my face. During my menopausal years it has transitioned to my buttocks and inner thighs. Medical science could have done more research of this …. but hasn’t. At this particular stage of my life, it is too late for me ….. but not too late for future generations. At the VERY LEAST — the medical community should become better educated about this condition — AND STOP BLAMING THE SUFFERING PATIENTS.
I had a pilonidal cyst lanced at 15 too. I have had 7 surgeries for the really ugly boils that did not drain on their own – 4 of them on my face. All along, my Dermatologist just called them sebaceous cysts. My Gyn. is the one who finally made the correct diagnosis.
I am getting tested for PCOS next week. I had never heard the 2 put together til I saw this article.
I wouldn’t wish this disease on my worst enemy! You are not alone Melony!
I can’t thank you enough for writing this article! I’ve been dealing with this since puberty! I was diagnosed with pcos at 14, I’m 26 now. I’ll definitely talk with my Dr at my next appointment. My obgyn actually diagnosed me with this when I was giving birth, while he was stitching me up, but there was so much going on, it’s taken me two years to remember, and research. Thankyou so much again!