Herpes Expert Forum
A month now
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Welcome to the Herpes forum. This forum is for questions and support pertaining to herpes simplex virus infections (HSV-1 and 2) and herpes zoster (shingles) and the virus that causes it, varicella zoster virus. Questions about genital herpes are welcome both here and on the STD Forum.

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A month now

Terri,

I had a similar situation a year ago if you remember. Pain all over my boxer short area, headaches, back pain.  Dr said pelvic pain syndrome which is just like saying we don't know.

Well it started again 4-5 weeks ago.  Excruciating pain in my penis and boxer short area.  Pain in one spot then in another.  Pain in my area between penis and belly button.  Pain down the inside and back of my legs to my feet.  Headaches often.  At week one I had a 'hot flash' woke up sweating.  The pain will come and go.  A lot like when i first contracted type 1. No lesions, but redness at tip of penis.  No pain urinating.  But again shocking pain all over.  The skin feels hyper sensitive in my pubic region and penis and scrotum.
This is a lot like last year when I wrote.  Had a great year after that.  I have had the same partner for 1.5 years and she has HSV 1 like me.  Unless she cheated which worries me, it's not from sleeping around.  This is the worst this pain has been.  My primary dr gave me std test among other tests 3 weeks ago and nothing but HSV 1.  Could type 1 cause all this?  My dr gave me cipro in case of prostatitis.   No improvement.  

I'm so tired of this pain.  I tried 1000mg of famvir yesterday to see if it helped and very little.  

All this non sense started 5 years ago when I got type 1.  Could herpes have damaged my nervous system?  Could I have type 2 and the lesions aren't there cause I had type 1 somewhat block it?  Could I have type 1 and type 2 taking turns with OBs so to feel like non stop pain?  I'm begging everyone for answers.  I will go back to urologist next week.

My dr thinks its stress.  I have been stressed, but not this much!  

Oh I had redness/rash in super pubic region my dr called nothing and small discoloration on my penis head.  All these symptoms come and go in 24 hours it seems.

55646_tn?1263664409
Have you had testing for herpes to know what if anything you have?  This may be a follow up post to a previous one, but I don't know that.

How long did you take the cipro for possible prostate infection?
Have you had any imaging done to rule out any spinal nerve compression?
Your symptoms are the classic chronic pelvic pain syndrome, I can see why that diagnosis was made.  We can identify the syndrome, but aren't good yet at knowing how to treat it.  The amitriptyline may be very helpful indeed.  Another option some people use for this is Lyrica.  

I'm so sorry you are having all this trouble!

Terri
16 Comments
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Avatar_m_tn
Well yesterday and today I am having lots of muscle aches in my legs and buttocks.  My hamstrings hurt.  Nothing is better symptom wise. The muscle aches have been there a week or so but now are more pronounced.  4 weeks going on 5 of this garbage.  It's depressing.  I went and took 500 mg of famvir last night to see if it helped and I slept well but woke up and it started all up again.  Frustrating.
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Avatar_m_tn
Dr just gave me Amitriptyline.  Said it could help.  Did a UA, HSV, and hepatitis panel.  Looked at me like I was crazy.   This is a lonely feeling.
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Avatar_m_tn
I was tested 2 months ago for everything.  All negative.
HSV results-
Type 1 - 1.66
Type 2 - .12

I just retested Friday.  I was given diagnosis of pelvic pain disorder last year but got better.  This time is much worse!  Been 5 weeks.  

I took cipro for 7 days.  

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Avatar_m_tn
Results from blood work:
Hep - negative
HSV 1 -1.45
HSV 2 - .04

This is week 5-6 since pain started.

New med is knocking me out!  I'll have to stop it.  I feel like I'm in a fog, but the pain is much less.  Guess that's the trade off?
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Avatar_m_tn
A feeling of burning started running down the back of my legs today and all over my boxer short area (especially my penis and anal area).  The muscles in my legs are cramped and have been for days.  This is 6 weeks since it all started.  My gut is telling me this is bad.  I was negative for HSV 2 but its only 6 weeks since this started and I see it says 7 weeks to 17 weeks.  

I have taken famvir (500mg) each day this week.  

Seeing urologist Friday.  

I have type 1 herpes.  Could this cause all these problems?  
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Avatar_m_tn
I'm scared this is going to be like my type 1 infection from 5 years ago that took over a year to become positive.  I had readings from .30 to .84 during the year before getting to 1.4 and positive.  I visited every specialist i could trying to discover my issue before i was positive.

  I guess if I get a sore now it'll be answered on the type 2.
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55646_tn?1263664409
The test can often miss HSV 1 infection, so just because you are positive now doesn't mean you weren't positive all along.  

Your symptoms are simply not consistent with HSV 1 genitally.
Can you answer my question about how long you took the cipro for your prostate?  Your symptoms are way more consistent with prostate problems than with genital herpes.

Terri
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Avatar_m_tn
One week of cipro
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55646_tn?1263664409
Most clinicians would prescribe 6 weeks of a drug like cipro for prostatitis.

Terri
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55646_tn?1263664409
for chronic prostatitis.

Terri
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55646_tn?1263664409
And also prostate massage can be very helpful with this kind of condition.

Terri
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Avatar_m_tn
Still no relief at week 6.  Urethral pain from deep in peranum to tip of penis.  Cramps in my back legs (weakness/heavy feeling) from my back to my feet.  Pain shocks still all the way to my feet. Pain in boxer shorts area, but concentrated in my genitals and anal area.  Redness on the tip of my penis.

I'm getting an MRI of my back on Friday.

Thoughts?
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Avatar_m_tn
Still no relief at week 6.  Urethral pain from deep in peranum to tip of penis.  Cramps in my back legs (weakness/heavy feeling) from my back to my feet.  Pain shocks still all the way to my feet. Pain in boxer shorts area, but concentrated in my genitals and anal area.  Redness on the tip of my penis.

I'm getting an MRI of my back on Friday.

Thoughts?
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Avatar_m_tn
Woke up this morning with a drainage from my penis.  It was a mix of clear and mucous looking stuff.  Went straight to my dr and he swabbed the urethra (ouch!!!!).  This is the first time I've had non clear drainage.  I'm so confused.
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55646_tn?1263664409
Also consistent with either urethritis of prostatitis.  Follow your doctors instructions on treatment.

Terri
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