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National Cervical Cancer Coalition


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 Post subject: Confused
PostPosted: Mon Sep 17, 2007 12:07 pm 

Joined: Mon Sep 17, 2007 11:08 am
Posts: 3
Good Morning,

I'm a newly diagnosed HSV 2 female. I'm very disgusted with the medical care I've been receiving.

Symptoms began 8/27. Went to the Dr. 8/30 at which time a culture was done. Showed flu like symptoms over the labor day weekend with serious ulcer outbreak and high temp 103.5, sever back pain, leg pain, etc. On 9/8 I began to have extreme difficulty urinating. By Monday 9/10 I was in the ER having a Foley catheter placed. Positive HSV 2 culture was reported to me on Monday 9/10. Removed the catheter on 9/13. Takes a while to urinate now, but at least I can empty my bladder. The other end is an entirely different subject as I haven't had a normal bowl movement in almost 2 weeks, with the urologist suggesting I try Activia to get my system regulated. All the while, I've been contacting my physician. I am experiencing numbness in my genital area, extending from my tailbone to my pelvic bone, radiating outward to my buttocks and down my leg (left especially) to my knees. I wake up several times per night with kidney pain. The ulcers have cleared nicely and I'm taking Valtrex 1gm 2x's per day (since 8/30). The pain has subsided considerably, however the kidney pain and numbness is of great concern, especially since this has been going on for 3 weeks. I have been able to work, however not many hours due to inability to concentrate from pain.

Thru all of this I have not had any kind physical exam (other than a cursurory visual and culture at the initial apt.), nor has a single clinician offered/suggested councling. Most are dismissive and unsympathetic. I understand that I may have to deal with these symptoms, but acknowledgement/guidance/support of my symptoms related to HSV2 would be helpful.

Is what I'm going thru typical for an initial HSV2 outbreak? How long can I expect the symptoms to continue? What is the best way to handle pain management? Do I need to be concerned with the numbness and tingling? What about the kidney pain? What is the best way to find a knowledgable clinician? (I've tried the local health department only to be shrugged off. My partner wants to be tested as well and we are being told there is no good test outside of a culture during an outbreak! The only blood test available is a "broad spectrum" test that won't identify between HSV 1 and HSV2.)

I'm hurt and angry, not only at the virus but at the treatment available in my area. I have only had 4 partners in my life (and I was married to 3 of them and engagged to my current partner!) I guess I'm not dealing well with this. I'm an educated, professional woman who has been floored by the diagnosis. I want information. The web has been helpful, but as with most sights, what's reliable and what's not?

Thanks for the ramble and any suggestions/information is appreciated.


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 Post subject:
PostPosted: Tue Sep 18, 2007 3:49 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
What - you aren't as stupid as they'd like to think you are? shame on you! Seriously I'm soooooooo glad you found this site!! I think we can help you with quite a bit of this :)

Are all your symptoms typical? Yes and no. They are known to occur in a small percentage of folks who have genital herpes but they don't occur frequently. Yes indeed when you are infected with genital herpes - sometimes it can effect the nerves that control the bladder and the bowels. It sounds like the bladder issue is slowly clearing itself up. Be sure to drink tons of fluids so that you are having to urinate regularly. don't hesitate to return for catherization if you feel that you aren't able to empty your bladder fully no matter how hard you are trying. The same thing that has happened to your bladder is also happening to your bowels. Activa just gives you the "good" bacteria to help you have more normal stools. At this point I recommend either an enema or a stimulant suppository ( yeah good times ). You probably have quite a bit of stool backed up in there which is also putting even more pressure on the nerves in that area which can in turn just make a bad thing worse :( You need to get that stool out of there with a stimulant - the nerves aren' t working normally on their own right now. Don't hesitate if once you've done either the enema or the suppository to repeat it again the next day if you still feel like you have a lot of pressure in that area. 2 weeks is a lot of stool to back up. You should consider taking a stool softener for a week or two to keep things nice and soft until the nerves are back to normal.

Take ibuprofen for the leg pains. if they continue for more than another week or two - follow up with your doctor or ask for a neurology consult just to make sure that you didn't have any pre-existing back/nerve injuries that weren't an issue until the herpes got in there and stirred it all up.

Same with the kidney pain - if that continues for more than a couple of more days - return to the doctor. You might have a uti on top of this all from the catheter.

As for getting your partner tested - if you are in the US - try www.healthcheckusa.com or www.tstd.org and see if either of them have a participating lab near you. You want to order the herpes select igg for hsv1 and hsv2. some planned parenthoods offer type specific blood testing - just call and ask. Also if you can get the name of the lab your doctor uses ( ie quest, labcorp etc ) I might be able to give you the exact test number they want to order. It's unfortunate that many practioners are not up to date on herpes in general :(


Be sure to watch the patient counseling video and read the herpes handbook at www.westoverheights.com. That and the info here on asha are very accurate and some of the best info you'll find on the web :)

feel free to ask any other questions you might have. I won't be online much for the next 2 days or so but I do check in pretty regularly normally :)

betsy

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 Post subject: THANK YOU
PostPosted: Tue Sep 18, 2007 8:29 am 

Joined: Mon Sep 17, 2007 11:08 am
Posts: 3
Thank you so much for the information! I was beginning to think I was going nuts. :lol:

This episode has really put me in a bind at work. I was off most of last week. I'm scheduled to head to Vegas next week, but the pain really distracts from things that need to get done. So much has happened in my life over the past 5 months (for the good) it is truly overwhelming. I was just named General Manager of the broadcasting cluster I work for back in August. Then WHAM, get hit with this!

I'm proud to report that I had a bm both last night and again this am! Never in a million years did I think I'd be so proud of bodily functions. :roll:

Thanks again for the information and support. I'm glad I found this site! I've already found the patient DVD and brochure info you mentioned.

Keep in touch!


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 Post subject:
PostPosted: Tue Sep 18, 2007 1:07 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Woohoo you pooped!! And here you were really looking foward to the enema weren't you? he he he Now go stand in line behind the old ladies at dunkin' for the bran muffins and keep things soft and regular so they keep going well :D

Hang in there - you aren't crazy! Unfortunately many practioners aren't aware of what can happen with herpes so they can't be of much support when you need it.

Also just because you seem to be having the worst luck of all right now - don't hesitate if you start itching again down yonder or get an increase in discharge to return to the gyn to get checked for yeast and bacterial vaginitis. Both are common with a doozey of a first ob. Our normal flora can get thrown off pretty easily unfortunately.

Go to vegas! Have fun!! You are already on suppressive therapy from the sounds of it so hopefully things should just keep on getting better for you :)

betsy

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