Aa
HSV2 & PHN
I am a female diagnosed(via blood test) with HSV2 in 2004. My symptoms were onIy rashes, abrasions & tears in the skin. But, 8 months ago. I started with VERY strange symptoms. I started with difficulty urinating & severe pain radiating down my legs, it became more difficult to urinate, & my abdomen was bloated & my legs were edematous and constantly ached. I went to my doctor she treated me for cystitis & ordered some tests, but she had no idea why I was having the leg pain. After a MRI, CAT scan, pelvic ultrasound, & 3 different doctors, it was noted that I had extremely dilated ovarian veins(according to one doctor I had pelvic congestive syndrome), large uterine fibroids & cystitis. But why was I having the pain in my legs? Nobody knew. But they wanted to do a vaginal hysterectomy. I decided to wait. Months went by & the urinary symptoms were better, I still have a feeling of retention & discomfort, and the leg pain will migrate from one area to another just overnight, the leg edema resolved; but by the end of the day my legs are throbbing in pain. I read on the net about Post Herpetic Neuralgia, but this only seemed to be associated post Shingles. I found a lot of postings from people in the USA who were demonstrating some of the same symptoms & have HSV2 also. But, all the doctors told them that there is NO documentation that PHN can be caused by HSV2. I still only have about 7-10 good days month of almost no symptoms, then things start up again a week before my period & continue for another 2 wks. I am finally to a point I am able to consider having the sx.
So my questions are:
1) Do you think the best MD to see re: HSV2 would be an Infectious disease MD?
2) Do you think PHN is possible from HSV2?
3) Since my HSV2 is constantly active, if I have the hyst. there any chance of spreading HSV2 from vagina to pelvic cavity once that pathway is opened during sx?
So my questions are:
1) Do you think the best MD to see re: HSV2 would be an Infectious disease MD?
2) Do you think PHN is possible from HSV2?
3) Since my HSV2 is constantly active, if I have the hyst. there any chance of spreading HSV2 from vagina to pelvic cavity once that pathway is opened during sx?
A related discussion, hsv 1 - severe episode - lasting 1 year and more was started.
I greatly appreciate your advice and honesty, and maybe you are a distant online expert...but by far you have discussed this in depth with me and listened to all that I am feeling and have experienced more than anyone else I have consulted, and I thank you for that. Maybe I still do not know what is wrong with me, and maybe I will never know, but at least I was able to get this off of my chest. Thanks, K
MEDICAL PROFESSIONAL
As a health professional, you know that all a physician or other provider -- or a distant online expert -- can do is rely on the available data plus his or her clinical experience. In most people with your genital symptoms, herpes isn't the cause, and I have never seen or heard of genital herpes resulting in "rash, tears in the skin, or abrasions every day, 24/7". Also, when HSV-2 does cause such severe symptoms, it is almost exclusively limited to the first infection, not seen in people who are chronically infected. That antiherpetic therapy didn't help is further evidence against HSV as the cause.
As far as you pain goes, many people have both HSV-2 and unexplained pain in the back, abdomen, or legs, undoubtedly neuropathic in some cases. By random association alone, 20-25% of those with such pain have positive blood tests for HSV-2. Since both problems are very common, it is obvious that lots of people have both. Their simultaneous occurrence in a particular person doesn't prove that one caused the other.
Maybe there is a causal relationship in your case. As I said, it is theoretically plausible, since HSV is a neurotropic virus. And of course you are exactly right that there is always the possibility that a particular person can have atypical manifestations. But what are the odds? I can buy atypical genital symptoms; I can buy recurrent rather than initial herpes causing such a severe, prolonged outbreak; I can buy lack of response to antiherpetic drugs (although that's a stretch); and I can buy an atypical pain syndrome caused by HSV. But realistically speaking, what are the chances of any particular person having all those atypical features? They are astronomically low -- zero, for practical purposes.
I genuinely believe it is your best interest to try to look at your blood test result and all your other symptoms as coincidental, probalby not related to one another. That doesn't mean I don't have both sympathy and empathy for what you have experienced.
As far as you pain goes, many people have both HSV-2 and unexplained pain in the back, abdomen, or legs, undoubtedly neuropathic in some cases. By random association alone, 20-25% of those with such pain have positive blood tests for HSV-2. Since both problems are very common, it is obvious that lots of people have both. Their simultaneous occurrence in a particular person doesn't prove that one caused the other.
Maybe there is a causal relationship in your case. As I said, it is theoretically plausible, since HSV is a neurotropic virus. And of course you are exactly right that there is always the possibility that a particular person can have atypical manifestations. But what are the odds? I can buy atypical genital symptoms; I can buy recurrent rather than initial herpes causing such a severe, prolonged outbreak; I can buy lack of response to antiherpetic drugs (although that's a stretch); and I can buy an atypical pain syndrome caused by HSV. But realistically speaking, what are the chances of any particular person having all those atypical features? They are astronomically low -- zero, for practical purposes.
I genuinely believe it is your best interest to try to look at your blood test result and all your other symptoms as coincidental, probalby not related to one another. That doesn't mean I don't have both sympathy and empathy for what you have experienced.
I do understand where you are coming from & agree with you on some points, but not all. Anti-herpetic therapy has never helped me, even in large doses. And I understand how the nerves run & that HSV2 usually remains latent, but I do not believe that I am a usual case. And because I have spent many years in the medical profession, I also understand that doctors do not know or have seen everything, because everybody is an individual & there are some many variations & strains of diseases. I have just found it very frustrating to be a patient where no one can help you, or believe you. I have never had a "classic lesion, blister, or sore", I didn't even know I had it for 2 yrs after exposure, then one day I had a rash, tears in the skin, or abrasions every day, 24/7, it was agony. A blood test confirmed the diagnosis. I saw many doctors only for some of them to say, "Are you sure you have herpes?" Nobody knew how to help me, then after 6mths, it calmed down, then I only had irritation monthly....until 8mths ago when the other symptoms started, now maybe some of them might be gyn related, but the tingling shooting urinary pain feels so much like H. But the shooting nerve pain down my leg, that has me stumped. But thank you for suggesting a Neuro doc, I will try that next. K
MEDICAL PROFESSIONAL
It is unlikely that your pain has anything to do with your HSV-2 infection. It is logical to suppose that HSV might cause PHN the way the varicella zoster virus (VZV, shingles/chickenpox virus), but it is not know to do so. The only well documented neurological problems associated with HSV-2 are neuropathy associated with the initial infection, which can cause bladder paralysis and other symptoms, but aways goes away as the skin lesions resolve; an a prodrome, usually just tingling, that precedes an outbreak by a couple of days and doesn't last more than 2-3 days. Finally, if chronic HSV-2 were to cause PHN or other ongoing neuropathy, the symptoms would be expected to be stricly on one side of the body or the other, not both. That's because latent infection is in a nerve root, and nerves don't cross the body's midline. In other words, I agree with what other people have said "all their doctors" believed.
Having said all that, none of this has been researched very well, so I cannot say your symptoms absolute are not due to HSV-2. One way to test that out would be to try a period of anti-herpetic therapy, such as valacyclovir, in fairly large dose for a week or two, in the hope the symptoms might improve. The antiherpetic drugs have virtually no side effects (except cost), so there would be no harm in trying. But don't get your hopes up; I don't expect it would make a difference.
To the specific questions:
1) An ID doc isn't going to be able to tell anything more about the cause of your symptoms. If you haven't seen a neurologist, that would make more sense. Any doc can prescribe valacyclovir.
2) Probably not. See above.
3) It is very rare, if ever, that HSV-2 causes such frequently recurrent symptoms; the maximum frequency of recurrent genital herpes outbreaks is about monthly. Also, it is rare for a particular person's pattern of recurrent outbreaks to change. It is much more likely that something else started happening 8 months ago, not a change in your herpes. Anyway, if you're not having genital area blisters/soress, I doubt you are having herpes symptoms at all. If your leg pains are somehow connected to your gynecologic problem, maybe hysterectomy would make a difference. But hysterectomy certainly will make no difference in your genital herpes or its symptoms.
I hope this helps. Best wishes-- HHH, MD
Having said all that, none of this has been researched very well, so I cannot say your symptoms absolute are not due to HSV-2. One way to test that out would be to try a period of anti-herpetic therapy, such as valacyclovir, in fairly large dose for a week or two, in the hope the symptoms might improve. The antiherpetic drugs have virtually no side effects (except cost), so there would be no harm in trying. But don't get your hopes up; I don't expect it would make a difference.
To the specific questions:
1) An ID doc isn't going to be able to tell anything more about the cause of your symptoms. If you haven't seen a neurologist, that would make more sense. Any doc can prescribe valacyclovir.
2) Probably not. See above.
3) It is very rare, if ever, that HSV-2 causes such frequently recurrent symptoms; the maximum frequency of recurrent genital herpes outbreaks is about monthly. Also, it is rare for a particular person's pattern of recurrent outbreaks to change. It is much more likely that something else started happening 8 months ago, not a change in your herpes. Anyway, if you're not having genital area blisters/soress, I doubt you are having herpes symptoms at all. If your leg pains are somehow connected to your gynecologic problem, maybe hysterectomy would make a difference. But hysterectomy certainly will make no difference in your genital herpes or its symptoms.
I hope this helps. Best wishes-- HHH, MD
You are reading content posted in the STDs Forum
Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
