Fall 2009, was seeing chiro 2Xweek for R SI/Hip Issues. Had my period 1/10 and had an outbreak which I hadn't had for 8 mos (on suppresive therapy 500mg/day)(HSV2 since 1999). ~ week after my period and outbreak resolved, I noticed LEFT sided vulvar stinging/irritation. Also had toothache like pain between vulva and (L)thigh, deep. I ended up on 300mg/day of gabapentin which did help, but still had intermittent deep pubic rami pain but life was liveable. Fast forward to 8/10 ,came off the gabapentin because I was pregnant. Pain was manageable off gabapentin. Just after 3rd trimester had another bout R sided SI joint pain, along with another outbreak ( I was still on suppressive tx). from this point forward, the deep pain at the pubic rami progressively worsened as the pregnancy progressed, and also had the groin pain that comes along with pregnancy. Had elective C-section due to concern with the vulvar pain. 4/21/11 and post the pregnancy, the groin was better but I still had vulvar irritation, and pain at pubic rami so decided to pursue PT. Did PT through 9/11,developed sitting pain which has continued to the present. I stand all the time, sit minimally as it is too painful. If I sit, I get tenderness inside my sits bone, vaginal and vulvar pain ALL (L) sided. My questions are: Could the HSV2 have caused pudendal nerve irritation? If Yes, is it logical that the nerve pain progressed over a timespan of 1.5-2 yrs, frm manageable to lifealtering? There seems to not be consensus as to whether HSV2 can cause nerve damage, in my case pudendal nerve irritation. .There are very few PN specialists in the country; some claim association with the onset of PN with HSV2, I don't have the details of their claims whether these are primary outbreaks or what the situation is. I don’t want to pursue 'nerve decompression surgery' or other invasive treatments if the nerve itself has been damaged by the virus as these treatments will not help.
My opinion (and it is just that) is that all this pain is very unlikely to be caused by HSV 2. Yes, some people have nerve pain with herpes, but it is almost always, (in my experience) intermittent and not constant like you are describing.
I have certainly had patients who have continuous pain somewhere below the waist, but there is almost always another explanation.
To me, these sounds far more like a musculoskeletal problem of some kind rather than herpes. It doesn't sound like the suppressive therapy is making a difference, right?
I'm assuming you've had imaging done of some kind in the area to rule out things like disc issues?
I never had a history of pain with outbreaks, just the tingling itchy feeling upper left buttock where primary OB usually occurs. Wonder if this whole issue is due to HSV2 or some neuromusculoskeletal issues i.e. SI Joint issues, etc...
I also want to add, that when the pain worsened to sitting pain post pregnancy (~Sept 11), I had not had an OB since Oct/Nov 2010 which was mild. The pain I have however, is chronic, inside sits bone moving forward (it is pain, NOT burning, numbness or tingling). I am still on suppresive therapy and also am on 2700mg of gabapentin/day and the pain persists. I cannot sit at all as the pain worsens. It is present but more mild in the am and worsens throughout the day. The docs are confused as to the cause as there is the HSV2 factor but there is also the possibility of the musculoskeletal issues due to the SI Joint issues I have had. The pain worsened throughout the pregnancy but was this due to the minor OB I had? or was this due to the SI Joint (musculoskeletal issues ) and the coming off of the gabapentin? Its hard to tease out a cause. Does HSV2 cause chronic neuralgic PAIN?
To answer your questions, 'NO' the suppresive therapy has had no effect on the pain; however, I rarely get OB's so it seems to be having an effect on that. Regarding MRI, I have had a pelvic MRI but not a lumbar MRI. The pelvic MRI was normal. I guess I should request a lumbar MRI. Knowing that in your opinion you feel this is not HSV2 related is a bit of a relief as this at least offers me other treatment alternatives to look at for the pain. So it would seem that the initial onset of the pain in 2010 was a coincidence with the timing of the OB as I did have other issues going on precending it all that may/may not account for the pain..All the research I I have read myself on the subject seems to be intermittent pain with HSV2 that may start just prior but resolves with the OB. Thank you Terri and any other comments you may have are welcome. I appreciate your expert advice!!
You say you cannot be certain this isn't caused by herpes...is this based on research? your experience? have you seen or heard from colleagues of patients with pudendal neuralgia suspected to be caused by herpes? I could find only 2 or 3 papers where PN and herpes together were included and all were episodic meaning the pain eventually resolved.
From Jan2010 through to July 2011 I had just vulvar irritation, then post pregnancy it progresses to the point where I can no longer sit without flaring the pain immensely, and it is not a burning or tingling, it is a true pain/surface tenderness with some internal vaginal pain.
If it was caused by herpes, I would think the initial insult would have elicited a set of symptoms, but why would the symptoms worsen? would there be a slow progression of worsening symptoms over the course of almost 2 years?
I'm really trying to tease out if this could be the true cause. And it it is, what treatments are available? just meds?
Based on the course of my symptoms, truly what are your thoughts? Could herpes act like this?
My thoughts are that this is not caused by herpes. I can't provide anyone with 100% certainty about any medical condition that they have. I can only give you my best opinion based on 30 years of experience, professional literature, your symptoms and history. That's the best I can do.
Hi I read your post and I am dealing with the same issues, although I am a guy. During my year of researching and trying to treat this as herpes I came across a lot of information. And one thing that strikes me is your pain after giving birth, pelvic pain can be caused from this the way you describe. I am seeing the best pelvic pt in the country now for my pain and they help a lot of women with your condition. Best to see a good pt specialized in pelvic therapy and see if they can relieve your symptoms, good ones can even diagnose where imaging such as MRI cannot see nerve damage.
Get back to me and I can give you good links to websites for this if interested.
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