Still physically struggling

[whitedaisies]

I really hate posting this. BUT I am so sad and I guess I have to vent.

 

It's been a year and a half and I still have frequent symptoms even on antivirals. Today ha shooting pain in my vagina and pain in my legs. Guess I am shedding.

 

I am doing all I can do. Taking meds, eating healthy, taking supplements. Nothig I do seems to stop te frequency. Severity has improve though.

 

I really don't know how to get out of he emotional funk when there are always symptoms there. I just want to have herpes like everyone else. You have an outbreak and then it goes away and you feel normal.

 

I am really losing hope that I will ver feel normal again. And I am not even looking forward to new drugs bc who knows when the ell it will get here and they likely won't work on me anyway.

 

I wish I could take that stupid night back. It ruined my life.

 

I got over the stigma. I got over losing love in a heart breaking way. I have educated myself enough to know the risks. Just none applies to me.

 

I am in my 40s. Struggling everyday with physical symptoms. I jut don't know how to accept getting it this badly.

 

For those of u newbies readig this...my case is really rare so not to fret.

 

I jut hate feelig guilty too posting my troubles with it bc I don't want to scare anyone else but I need support too.

 

I just want this to go away.

 

I feel like giving up.

[Getbetter111]

I feel the same way you do. It is super hard I have burning and sensitive skin to the touch and inflamed urethra 24/7 unless I'm off my feet. Today I tried to not wear cotton underwear so I could air out and the tip of my penis was unbearable rubbing on my board shorts.this is taking all the joy out of life for me. It's like my penis is taken over and feels 100% infected all the time.i almost want to ask for a IV of antiviral to see if that would nock it back. I'm at a loss?

[whitedaisies]

My skin does not irritate at all.

 

It's my nerves. God my damn nerves. Either burning or electric shock pain or itchiness or numbness. It's insanity.

 

I can't believe most people get cold sores once a year and I am such a small percentage.

 

Had to cancel sexy time today. I don't even know why this guy is with me. He might as well be celibate.

 

I hate whining but honestly this fuckig sucks and I can't try hard to improve these symptoms. I hve no control over them. They come and go at their will despite anything I do.

 

Iv likely won't help. It just gets meds to areas quicker and more evenly. Maybe u nee to up ur dosage. I am on 3 pills a day for 3 months and it shortens ob or prodome but doesn't prevent them.

 

I can't even be the lucky person who gets better on meds. How unlucky can one be? All because I had oral sex and it was a horrible damn experience anyway.

 

Bah. Somebody has got to one up with something to kill this bullshit!!!

 

I have had 3 children vaginally with no issues. And hsv1 knocks me on my ass for a year and a half and likely more?

 

God haven forbid I get a bad illness. I am petrified!

 

No matter how much personal work you do this physical bullshit is still there. Yes I can control how I react to the bullshit but it gets exhausting when it's all the time.

 

Anyway what's the point?

 

 

[Danaaaaaasaur]

@whitedaisies Im so sorry you're going through this! You're not alone though I'm still struggling with my nerve issues too so if you ever need to chat or vent im here :) You're an incredibly strong person so don't give in to that way of thinking today. Hugs :) xx

[whitedaisies]

Thank u @danaaaaaasaur

Now I look at my pubic area bc I have been havig burning between my hip/thigh and vagina meet. I look and one hard bump appears and a tiny hard bump beside. No fluid inside. No colour really same as skin colour. I tried to trim the hairs see f it's a blocked pore or folliculitis but so hard to tell.

 

Could this r a genital wart? Are you fuxking kidding me? It's round and hard not fleshy and all and doesn't stick out much but u can feel it when putting finger across it.

 

If this is a genital wart you will see me totally lose it.

 

Are their prodomes with them? Maybe it's just a coincidence.

 

I

[whitedaisies]

Maybe it's just a blocked pore from folliculitis.

 

It doesn't look like a wart. But who knows. It's hard. I think warts are more fleshy.

 

Ah well. Booked appt with obgyn. If it isn't a wart it should go away in it's own I guess. If it is I will have to burn it off.

 

I will wait I guess it's not on my genitals just on pubic hair region where crease is between leg and pubic area just am inch away from that.

 

I hate that I sound crazy but nonetheless there are bumps. They are not herpes I know that for sure.

 

Ok just googled. Could be a wart could be nothing. I have picked at it to see f it had fluid so now I am afraid I go get checked they won't know bc it looks different. Sigh

[Danaaaaaasaur]

Don't stress too much if it is a wart...I was lucky enough to get genital warts from my very first boyfriend and I had to have them burnt off twice in the space of a year and then never saw another one because your body clears that virus within a couple of years usually :)

 

Could it be a small cyst maybe? Let us know how you go at the obgyn :)

[whitedaisies]

I thought I remember you saying u had them.

 

Could I got this from my new partner we had sex once or have I been carrying it since a year and a half ago?

 

Anyway I don't know if they are warts. I have picked at them to see I have no idea so I don't know if drs will know as they look different not.

 

I thought it may be h and I wanted to swab it as I have swabs at home.

 

I am tired of all this. Is sex worth this much stress!?

 

Now do u disclose you get warts to your future partners?

 

I know I am getting ahead of myself but I am just so tired of all this. I want my body back!!!!

 

[2Legit2Quit]

Have you considered trying lyrics or neurontin?

[Danaaaaaasaur]

@whitedaisies From what I remember reading warts take 6-12 months to show up normally. How long have you been with your partner?

 

X

[whitedaisies]

Sex once 2 months ago

 

Last sexual experience before that 1.5 years ago

 

Oral only last August and November

 

: (

[whitedaisies]

Special hugs to you ladies!!!!!

[whitedaisies]

Bbith time sex w condoms

[WCSDancer2010]

Sorry you are having a hard time again friend... I don't know what else to say but know I'm sending you (((HUGS))) and healing thoughts that you will feel better tomorrow :)

[whitedaisies]

I know there's nothing to say.

 

I am just very unlucky with this virus. It makes my journey so much harder.

 

Loving the hugs!

[fitgirl]

@whitedaisies I am sure this feels like a life sentence and I know you are sick of hearing this but it will eventually get better. It may never be great, but it will be better :). I had OB's every 3 months for 15yrs and I learned to go with the flow over time and time is all you can count on right now. The meds may not be working for you now but the longer you have the virus, you may find out that the meds will work better...again, in TIME.

 

As for the warts (if that's what they are) that's JUST HPV. And the strain of HPV that causes warts is not the one that leads to cervical cancer. Very treatable! Anyone who has had more than 3 sexual partners has some form of HPV and much like herpes, most don't even know it! You may choose to disclose that but I have to say, it would be redundant in my opinion :)

Hang in there!

[whitedaisies]

@fitgirl I appreciate ur words

 

I just have ob repetitively. I feel emotionally stronger then another ob or prodome comes. Thank the good lord I don't get typical lesions I honestly would have I I no what.

 

Really the feeling of hopelessness gets overwhelming when I am doing everything I can to stop them.

 

Maybe it's time to find a ghsv1 partner. Too much pressure for me with my negative one. I dunno. When u have ob every 3 months were u with a h- person?

 

I don't think they are warts btw but they could be. I will have to wait for my appt.

[fitgirl]

@whitedaisies I have been with both H- and H+ partners and in the early years I had a relationship with an H- partner and I was not on suppressive medication. That relationship lasted 4 years and even with my frequent OB's, he did not contract herpes from me. I abstained when I felt an OB come on and yes, there were many times an OB followed intercourse almost immediately. I panicked a lot when that happened but now that I know better, I no longer worry so much. I am taking antivirals now and am with an H- partner who does not care if he gets herpes from me. I am taking the meds because I care! And after all those years of regular OB's the drugs really are working for me. Hopefully over time they will help you too. As far as dating gshv1 men.....well.... in a perfect world, you would meet your herpes positive soul mate and live happily ever after BUT.....its already hard enough to find the love of your life so limiting the pool to H+ men might leave you feeling much worse than you do now :). The solution is not to date H+ only, its to eventually get to a place where your mind and your body handle the virus better and you move on with a normal life. You will get there.... step one is to stop stressing about the things you cannot control and focus on the things you can.

[whitedaisies]

@fitgirl

 

I know u had frequent ob but I would say I get mine monthly if not more frequent.

 

There is really never a period of nothing. Trust me if I had no sensations I would jam pack all the sex I could!!!!

 

Ob after sex I know are from friction I don't worry about those. I don't like them but I don't worry.

 

Yes time I guess is the answer because there is no other unfortunately.

 

I am trying to live my life progress forward. Hard when symptoms are frequent.

 

Anyway not much to say....I gess I vented. Changes nothing but cathartic nonetheless.

[elle789]

@whitedaisies I have been in the same boat as you with GHSV1. So dang angry still coming upon 2 years..Which antiviral are you on? From July 2013 to May 2014, I wasn't on anything and had pretty much constant small outbreaks. Enough to send me into a deep depression. I then got on acyclovir and the physical outbreaks (one sore here, one sore there) stopped, although I had near constant prodromes and irritation. Finally, in October, I decided to go to planned parenthood and told them that what my gynecologist prescribed me wasn't working (she decreased the normal dose by half, so I was doubling up the dose and it still wasn't working)..... The Nurse practitioner there said that in a lot of cases, acyclovir doesn't work as well and suggested valcyclovir because generic valtrex recently became available. Soon after I started taking it, I noticed a world of difference. On occasion I still have weird itches and twinges, but it pales in comparison to before. Maybe you should try a different type of anti-viral?

[whitedaisies]

I have tried them all already.

 

@elle789

 

I took valtrex at beginning and it took a bit of burning away at double required dosage but ob still happening.

 

Then I was off a while bc had to do the western blot blood test.

 

Then I started famvir bc I thought hey if I have defied all logic this far why would te meds that every one else take work on me? Famvir works on 5% of cases better than valtrex I believe. It reduces symptoms I and the I ration is shorter but still constant ob.

 

I have heard that hsv1 doesn't respond to antivirals as well as hsv2. Yay!

 

I tried acyclivir for about 2 weeks a few months back and I just panicked and switched back to famvir.

 

I am so happy valtrex worked for u though. Yay! Happy dance!!

 

When I am a little settled with not too many symptoms I have to go off again. I have pcr swabs at home and gonna start swabbing again to make sure what I think are ob actually are bc I don't get typical lesions just tiny little bug bites that show up on tailbone bum back thighs. I am trying to figure out of these are h or an overreaction of my immune system.

 

May then try acyclivir after that and valtrex again.

 

I don't have a dr that is helping me thru this. I am pretty much experimenting myself.

 

No dr I have been with has cared much about hav1 b everyone has it. And no one believes my symptoms except my therapist.

 

Easiest thing for dr to do when they can't put u into a herpes box is to say it's all in ur head. Herpes isn't constant ob....it come and goes. I wish I had a $1 for every time someone said that.

 

Anyway I have mustered up courage to go see an obgyn again. We will see if I follow thru.

 

Maybe one day the antivirals will work. I personally think there is some genetic component to having herpes that dictates how severe u get it. I hae no underlying health issues and have a pretty good immune system. I do hve eczema which I believe caused te spread of virus bc my entire body would sometimes itch head to toe.

 

Blah blah

 

Your story did give me hope though that one day sthng may work.

 

Xo

 

Btw did u hve a relationship during those 2 years and did u pass it on?

[whitedaisies]

@elle789

 

What r ur symptoms like now.

[whitedaisies]

I don't think they are warts. If anything foliculitis or h.

 

Great now in a new place. Ne'er ever had any on vagina or groin mostly bum thighs and tailbone.

 

It's extra sad now it's near my privates.

 

Oh well.

[Danaaaaaasaur]

I reckon it has a lot to do with the viral load too. I think the person I was seeing had a recent infection (turns out he was sleeping around all over the place) so that magnifies it and then there was ALOT of rubbing in the areas which I have stacks of pain so I think I basically rubbed a shit tonne of the virus into my skin.

 

Glad it's not warts :)

 

I can only take Valtrex not the other one because I get crazy itchy and burnt when I'm not taking Valtrex.

 

xx

[whitedaisies]

I go from thinking they are warts to they are not. THey are mostly gone now barely a tiny little bump. I did pick at it which is gross but I was trying to see if fluid from h and then I was trying to see if there is an ingrown hair. Man vaginas are so hard....I can barely see what's going on down there. Not to mention I am in my 40s and I can't see far or close now....and it just felt hard bump. I don't think I could pick a wart off, could I?

 

OBGYN called today...she said I need another referral from my GP which means its the universe telling me not to bother going. There's hardly anything to show anyway.

 

I don't think genital warts would cause a prodome on both sides of my groin and then have sharp stabbing electric shock pain....could warts have come up the same time as h prodome? Maybe? Very unlikely it would show itself after 1.5 years...unless I got it from oral with the guy shedding the virus but fuck I can't be that unlucky could I?

 

Anyway with HPV so hard to tell b/c hardly anyone knows they have it so I don't blame anyone it would just be really unlucky and I can't be the most unlucky could I?

 

What do you mean, which antiviral gave you those symptoms and what were they and how could you tell they were not h?

 

@Danaaaaaasaur