Hi JustLilOlMe23,
Have the antivirals helped with your IC symptoms? Are you still taking them?
Another school of thought is that IC is a symptom of Lymes Disease or a co-infection of Lymes Disease.
Ruth Kriz NP on The Dr. Melanie Show talks about IC starting at minute 32.
http://www.voiceamerica.com/episode/62680/lyme-disease-research-and-interstitial-cystitis-more-to-explore
I don't have answers, just looking for information.
Thanks and Best Wishes.
Hi Jason,
I have IC and tested negative for herpes and have never had a cold sore, but have had chicken pox.
Another school of thought is that IC is caused by Lymes Disease or co-infection of Lymes. Here's a link to the Dr. Melanie Show and Ruth Kriz NP talks about IC at minute 32. http://www.voiceamerica.com/episode/62680/lyme-disease-research-and-interstitial-cystitis-more-to-explore
Please let us know if your wife does try a herpes medication and how it works.
We all need to help each other.
Best of luck.
I see it wouldnt let me leave my email. please comment here then.
justjill,
my wife has ic and i feel for her. i thought to myself can herpes be intertwined and could valtrex help? i googled it and came across your comments. How have you been feeling? Do you also take Acyclovir? if you could could you email me directly. ***@****. anything may help! thanks! Jason
I have had herpes for about 6 years and then later I got a ureaplasma infection.
Now I have IC and have been researching these three infections/diseases and think there is a connection there. IC can be caused by many other infections.
I'm sure that the fact that I have Herpes then got Ureaplasma did have some effect on the development of my I.C. Now I have to be extra careful about everything that I eat or consume. Many medications affect my bladder and worsen my IC symptoms.
It took doctors over a year to figure out that I had Ureaplasma because it's rarely tested for and has similar symptoms to IC. I've read that doctors are starting to think that Ureaplasma is the cause for IC.
That might be worth asking to get tested for.
As for the people who have had IC since before engaging in sexual activity it's highly unlikely that you have Ureaplasma.
I guess in conclusion, we can continue to wonder about and research the topic. IC is a complicated condition and probably stems from many infections and conditions. Our bladders are sensitive.
Come to think of it, I've always had a weak bladder and had UTI infections since before I ever had sex. Maybe I always had IC??
It's really good to finally hear that other people are having this problem, too. Not that I like the idea of anyone suffering.
I've always been very prone to bladder infections, and yeast infections, and when I.C.-like symptoms surfaced soon after my diagnosis of HSV-2, I wondered if I would ever have a normal bladder again.
The pain has been constant for the past two months, but luckily over this past week, it has been steadily decreasing. I am almost 100% certain that my I.C. symptoms are due to HSV-2 outbreaks, although I am still awaiting a confirmation from my physician.
The only problem is that I got on antivirals about a week and a half after the initial symptoms, and the larger the dose, the worse my pain became. I was just dropped down to 500mg of Valtrex a day from having been on 3 grams a day, and am feeling better than I have in so very long. I do hope that I won't need to stay on a suppressive dose of antivirals forever, but I suppose I should just be thankful that I am able to get them at all.
What I want to know is if anyone else has ever experienced something similar to my circumstance: worsening symptoms on high doses of antivirals (P.S. the other side effects were pretty weird, too).
Shingles and chicken pox are the Herpes virus. There are different strains of Herpes.
They are now saying chicken pox is linked to shingles which is a herpes virus. I think there is merit to the idea of ic being linked to herpes. I hope we can look outside of the box here. I'm taking Valtrex and there is a distinct change in my symptoms. Maybe those who have ic like pain are mistaken and really have herpes pain? Maybe the virus really begins as chickenpox? I can't know. Drs certainly don't know everything. Lets hope that an answer becomes clear soon.
I just tried Valtrex for long standing IC with amazing results. I will stay on the Valtrex. I have always believed that the IC was caused by herpes virus also. I am really amazed at how quickly this IC flare has subsided. I finally have hope again.
Chicken pox is caused by the Herpes Varicella Zoster Virus (VZV)
Cold sores are caused by the Herpes Simplex Virus
Once you have contracted any strain of this virus, it lies dormant in your cells. When the body's immune system is low, it breaks out again.
With the Varicella Zoster Virus that causes chicken pox, once you have had chicken pox it is very unusual to have chicken pox again. But the person who has had chicken pox the same virus will erupt as shingles which affects the nerves. Someone with shingles cannot pass on shingles, but they can pass on the virus to others who have not had chicken pox. Anyone with the shingles should stay clear of pregnant women as the virus can affect the unborn baby.
Also anyone who has an outbreak of cold sores should not kiss. The virus is spread by contact to others and then will lie dormant until the immune system is compromised.
If you get cold sores or fever blisters, or have had Chicken Pox, you have the herpes virus in your body. And I will say, the only time I have an IC flareup is when I also have a herpetic flare.
Have you had Chicken Pox? If so, you have the herpes virus in your body.
I have interstitial cystitis and herpes, and I know for a fact that my cystitis started at the same time as my herpes. My sexual health consultant also agrees that this is one possible symptom if herpes. Of course herpes is not the cause of everyone's ic, but it will be for some.
As for the hysterical reaction of some people to the mere suggestion of a connection with herpes, saying it stigmatises those with ic, how much of a massive hypocrite are they? I presume they think herpes is something to be ashamed of because it is a sexually transmitted infection. That people have it are dirty or immoral or something. It is people with such small minded, judgemental, unintelligent attitudes that create stigma which is attached to medical conditions. So whilst you feel sorry for yourself and your own condition you think you have the right to stigmatize those with other conditions? How ridiculous.
Catching herpes is as easy as catching a cold. Anyone who has ever had sex, even with a condom, can catch it. So unless u are going to judge anyone who has ever had sex, I suggest u look at your opinions and see them for the offensive drivel that they are.
I have interstitial cystitis and herpes, and I know for a fact that my cystitis started at the same time as my herpes. My sexual health consultant also agrees that this is one possible symptom if herpes. Of course herpes is not the cause of everyone's ic, but it will be for some.
As for the hysterical reaction of some people to the mere suggestion of a connection with herpes, saying it stigmatises those with ic, how much of a massive hypocrite are they? I presume they think herpes is something to be ashamed of because it is a sexually transmitted infection. That people have it are dirty or immoral or something. It is people with such small minded, judgemental, unintelligent attitudes that create stigma which is attached to medical conditions. So whilst you feel sorry for yourself and your own condition you think you have the right to stigmatize those with other conditions? How ridiculous.
Catching herpes is as easy as catching a cold. Anyone who has ever had sex, even with a condom, can catch it. So unless u are going to judge anyone who has ever had sex, I suggest u look at your opinions and see them for the offensive drivel that they are.
I have interstitial cystitis and herpes, and I know for a fact that my cystitis started at the same time as my herpes. My sexual health consultant also agrees that this is one possible symptom if herpes. Of course herpes is not the cause of everyone's ic, but it will be for some.
As for the hysterical reaction of some people to the mere suggestion of a connection with herpes, saying it stigmatises those with ic, how much of a massive hypocrite are they? I presume they think herpes is something to be ashamed of because it is a sexually transmitted infection. That people have it are dirty or immoral or something. It is people with such small minded, judgemental, unintelligent attitudes that create stigma which is attached to medical conditions. So whilst you feel sorry for yourself and your own condition you think you have the right to stigmatize those with other conditions? How ridiculous.
Catching herpes is as easy as catching a cold. Anyone who has ever had sex, even with a condom, can catch it. So unless u are going to judge anyone who has ever had sex, I suggest u look at your opinions and see them for the offensive drivel that they are.
I have interstitial cystitis and herpes, and I know for a fact that my cystitis started at the same time as my herpes. My sexual health consultant also agrees that this is one possible symptom if herpes. Of course herpes is not the cause of everyone's ic, but it will be for some.
As for the hysterical reaction of some people to the mere suggestion of a connection with herpes, saying it stigmatises those with ic, how much of a massive hypocrite are they? I presume they think herpes is something to be ashamed of because it is a sexually transmitted infection. That people have it are dirty or immoral or something. It is people with such small minded, judgemental, unintelligent attitudes that create stigma which is attached to medical conditions. So whilst you feel sorry for yourself and your own condition you think you have the right to stigmatize those with other conditions? How ridiculous.
Catching herpes is as easy as catching a cold. Anyone who has ever had sex, even with a condom, can catch it. So unless u are going to judge anyone who has ever had sex, I suggest u look at your opinions and see them for the offensive drivel that they are.
This is absurd!! I have had IC since I was 15 LONG before I ever was sexually active. There is NO medical evidence supporting this and you sould not post ignorant comments for new IC patients only to confuse them.
I have had interstital Cystitis since I was 15 LONG beofe I was sexually acitve. The is ZERO basis for this and NO medical evidence of this. this is probably as ridiculous as saying IC is a mental problem.
Did you have herpes blood or culture test?
I must agree, I have been fighting IC and Trigonitis for years. I finally took matters in my own hands and knew that the pain was so similar to a cold sore (only it felt like a giant one on my bladder) that I took Acyclovir and within 4 days I feel 90% better.
I also took the soda baths and added some essential oils.
I have not felt this good in years.
Well, if doctors are unsure what the cause of I.C is then i'm sure you yourself without any medical knowledge can NOT say what the cause of I.C is either ? I have had I.C since the age of 5 years old, Herpes is either a virus which gives you cold sores and makes you run down, or an S.T.I, to what i understand anyway ? I've never had cold sores and I can tell you for sure i know i didnt get an S.T.I at the age of 5. It's people like you that make people with a health problem (To no fault of there own, may i add) less able to look for help and understanding, this is a disease, it effects the bladder wall, it becomes inflamed due to many infections. it's something we all as I.C sufferers will have to deal with, so if seeing other peoples NICE comments helps us a little get on with are illness and manage are day to day life a little easier. "Thank you" to everyone for your helpful comments, it's nice to know i'm not alone. And for people with the silly nasty comments "i think" you need to read more information before going onto a site that deals with patient comments looking for help off of (helpful people with the same problems, and doctors who are looking to help answer are questions) not be slandered
I am trying to find out more information about this myself. I was diagnosed with Herpes 2 about 6 years ago and it was that same month that my IC started. I've always been convinced that the two were connected, even though I never really had any outbreaks with the Herpes. The funny thing about Herpes(or maybe not so funny) is that many people have it and never know because they do not have outbreaks. I had a doctor tell me that about 90% of my generation (late-20's now) will acquire this diesease at some point. If you look up the statistics its staggering. That being said, it doesn't mean that Herpes 2 is the only virus that could cause IC, perhaps it is an unknown, you really need a sleuth sometimes....
I agree with you that herpes could be a cause for IC; there are probably others. But the case known to me is caused by herpes, I'm absolutely sure. Could you PLEASE tell what it was that came to your knowlege about it? Desperate to find help and herpes is a hard thing to deal with. Thank you.
yea, I agree with Hayley723. Not everyone who has IC has herpes.