Radiation Question

I have HS and one of the treatments is radiotherapy. I'm having my hysterectomy at the end of December and will be keeping my ovaries. However I've heard that radiation can cause ovarian malfunction and menopause. Well, heck! If that's true, the heck with it.

I have an appt. with my Dr. on the 28th, but I was wondering if anyone knew (off the top of their head) if this to be true or not.

I don't have an answer for you, but I wanted to send you a

I'm also going to this message up to the top of the page, and hopefully another sister will be along to answer your question.

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I'm glad you're going to be asking your DR!

What is HS? It will probably be a "DUH" moment when you tell us, but I'm really not sure.

Thanks!

Hidradenitis Suppurativa (HS), also known as 'Acne Inversa', is a non-contagious, recurrent 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 typically manifests itself 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.

Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulitis (deep tissue inflammation) are likely at these sites.

Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.

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. There is no known cure nor any consistently effective treatment; what works for one person may not work for another. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon.

Although the cause of this disease is unknown, very little research is being conducted on Hidradenitis, with Europe at the forefront. There is essentially NO research being performed in the United States! 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. Recent estimates, however, indicate at least 1,000,000 Hidradenitis Suppurativa sufferers in the United States alone!

Thank you so much for enlightening me! I really had absolutely no idea what it was. I'm so sorry that you are suffering from it. Does the radiation help? I'm sorry if this is a sensitive subject to you, if you'd rather not answer I understand.

A lot more people are aware of this disease, thanks to you taking the time to educate us.

Best wishes, and I hope the US medical community starts doing research into cures for it.

Radiation in the pelvic area can cause the ovaries to stop funtioning.

I have a step dd that had either Hodgins Lymphoma or the Non-Hodgins Lymphoma, but any way she had to have radiation to her chest area (it caused some side effects as far as her hair and teeth go but that was it).

Since her radiation she had 3 beautiful ds's. So depending on where the radiation is targeted it should only affect that area.

I hope that I answered your question

God Bless

Nothing (so far) can actuall cure HS. Patients have had results with radiation up and down the scale. The last option at this point (I'm stage 3) is surgery. I've had three surgeries in the past nine months. I could only find one doctor in the entire area (Sacramento, CA) and within my medical group who would even talk to me. He tried his best, but this is really difficult.

CO2 laser surgery is the latest and greatest. Using a laser they can get more of the infected area and hopefully... but as I said, it might not even help. However, I'm hopeful.

Finding www.hs-usa.org was a huge turning point for me. I was able to find a doctor who knew what he was talking about, up on everything, listened to me, and is willing to help me. He's in the Bay area (about an hour and a half drive from Sacramento), but I don't care. I'm just thrilled to have found him. I thank everyday I found Dr. B. and the support groups. People are ashamed to come forward, so we live our lives in isolation as well as horrible physical pain. I don't know which is worse.

I'll ask my doctors about radiation, but I think I'll bypass it. My dermotologist told me that some surgeons don't want to perform the laser surgery if radiation has already been done, for whatever reason.

After I recover from the TVH in December, my doctors and I will decide when I can have the CO2 laser surgery. I think I'll be off work a lot next year. After the laser surgery, the patient has to stay in the hospital for two weeks. Yikes! To think I was rolling my eyes when I thought about spending two or three days in the hospital after my TVH. By the time I'm finished with all the doctors and hospitals I'll look like this.