Hello, I started getting boils in my groin area for a few years now and simply let them rise up painfully, sometimes tried to pop them and other times just let them pop by themselves. Then I started getting the same boils around my pubic area. Now, my partner is telling me that the entire pubic area and the left and right groin smells like bad cheese. Gyno tells me I have to see a Dermatologist and Dermatologist tells me I may have to make an appointment with special disease controls. Have you ever heard of this? Also, not only is there an odor but the skin under my pubic hair looks swollen.
Do you also develop these lesions anywhere else such as the armpits, breast or ear areas? How large do these lesions get?
When you pop them what type of material comes out?
I get them mostly in groin and pubic area but recently got them in both my armpits at the same time. They get as big as a quarter at the site and much larger under the skin. One time the largest one got as big as a ping pong ball in my groin and went to the ER. When popped, a thick white substance , sticky cheese like comes out.
It sounds like you have Hidradentitis Suppuritiva. Were you told you had this?
This is caused by the duct of the apocrine sweat gland breaking and clogging. This leads to painful "boils". The boils are known for taking a long time to go to the surface. Oftentimes, the area becomes scarred and patients develop deep painful abscesses. Since apocrine glands are chiefly found around the groin, axillae and breast this is where the condition is worst. Incidentally, there are apocrine glands around the ear, so if you get boils in this area, this might explain it. However, I think, from the sounds of your problem that you are also getting keratinaceous cysts. This is similar as there is a problem in the duct, which becomes clogged. Keratin builds up in this. Keratin, especially if bacteria are involved, can develop a rancid, cheesy smell. Thus, you probably have two inter-related problems. Let me know if you want me to discuss the pathophysiology further. For now I will jump on the therapy that I find helpful for this. Since I am writing an article on the subject, some of this may be new to your physicians. If you notice a pre-menstrual flare: birth control pills should be helpful. I would see your gynecologist for this. Accutane may be especially helpful for you: not so much for the Hidradenitis, but it may control the cysts you are developing. It does help with HS, but since sebum excretion is not an important issue with HS, the response is not nearly as good as it is for acne. Still, the majority of patients do have a satisfactory response. Long-term antibiotic therapy is also important. I like Doxycycline 100mg twice a day for a month followed by Oracea 40mg a day as long-term maintenance. Some life style adjustments may be in order: a low carb diet and weight loss have both been shown to help. Smoking is one of the few skin diseases that has been linked to HS. As soon as one of these boils develops they should be incised and drained; that is, if they become large and painful. Intralesional kenalog injections 5mg/cc should be administered to smaller cysts. If the Doxycycline does not seem to work, a secondary antibiotic such as Bactrim DS may be tried. I also like Cleocin T Lotion twice a day to these areas. If tolerated Benzaclin Foam twice a day may be even better.
I have been developing cysts on my ovaries as well causing me to miss cycles.
I do not think ovarian cysts are directly related. However, if there is a hormonal component to them, they might be exacerbating HS. A few other more recent suggestions for treatment: laser hair removal, Photodynamic therapy, and Humira.
My general doctor wouldn't touch it until it came to a head. It had been developing for a week.
If they are large and soft they can be incised and drained. If they are firm, and not yet fluctuant they should be treated with Dome Boro soak compresses to help them come to a head. The lesions of HS do not act like normal boils and it takes longer for them to come to a head. Dome Boro soak compresses are found in all pharmacies. Warm compresses twice a day for 15 minutes.
So, does HS ever go away or is it with me for life. Do I have MRSA? The skin under my pubic hair smells now whether there's a cyst there or not = it just never goes away.
It tends to burn itself out after awhile. Some advocate surgery. I like the idea of Hibiclens washes as you are doing but I would add bleach baths. Pour 1/2cup of bleach into your bath for the last five minutes and soak. Rinse off well. Accutane may have help the smell problem as it shuts down the sebum and keratin that create it. Photodynamic therapy has been quite successful. One coats the area with 8 levulilnic acid...a liquid, waits 1hour and then receives blue light treatment for 16 minutes. It would have to be for each area.
So I don't have the staph MRSA? I don't have the money for treatments like that. "burn itself out after awhile”??? What does that exactly mean? What is accutane and how can I get it? In the pharmacy?
It can occur with these. I would not know whether you have MRSA, that would only be known through a skin culture. I suspect you do not have MRSA or your physicians would have been treating it. Burn itself out means that it goes away for no apparent reason. Accutane is a strong drug and while it is obtained in a pharmacy, patients on it need close monitoring.
Is that all the home remedies you can think of?
Use Zeasorb powder to reduce friction in the area. That would be a home remedy. You might try an LED device such as Omnilux Clear U.
You might use a Retinoid such as Retin A or tretinoin to keep the pores open from the cysts. That would cut down on the odor.
Any other issues that HS can bring up or cause?
Prevent new cysts from forming.
Would it help to just get rid of all my pubic hair?
Yes, I mentioned laser hair removal above. That would help.
Wow, to stop the cysts, get rid of the pheromones.
HS is associated with a number of conditions such as cysts on the scalp, severe acne and something called pyoderma gangrenosum. You might keep that in mind as patients with PG often undergo needless and occasionally mutilating surgery. That is an uncommon disorder. I would be happy to discourse on it, if you want.
Is HS a disease or simple a skin condition like a pimple. No thanks unless PG is like HS. Can eating specific foods help HS? And what, if any, are foods to stay away from, soaps, and such?
I would say it is a disease. No PG is a diagnosis often missed. It forms ulcers that look like cancer. they had a case on Mystery Diagnosis in which a woman lost her breast until they got a dermatology consult and was told she had PG. I have had two patients with HS and PG...so bot***** *****ne if you begin to get a large ulcer think PG. Not that I am aware of any foods that help. I would recommend a gentle wash and not a soap. Cetaphil Restoraderm Moistuirizing Wash would be good.
Can you tell me a small bit about PG? Just a little so I understand the words broken down?
Rapidly enlarging painful ulceration usually on legs but can occur anywhere. Usually ages 30-55. Associated with Chron's Disease, Rheumatoid arthritis. hepatitis, leukemia and as I mentioned HS. Expanding ulcer.
Wow, you have been extremely insightful for me. Thank you so very much doctor.
You're welcome. I hope at least some this helps. I know HS can be a very difficult condition to deal with.
If you have extensive disease, wide excision of the area can dramatically improve your quality of life. Do realize that there is an increased risk of squamous cell carcinoma in patients with HS. A recent large study of over 2000 patients showed about a 50% increased risk. In doing a little research for you, I came across a recommendation for zinc, so it might be wise to take Zinc Gluconate at 25mg a day. Happy to answer further questions.