desperate as nobody is helping me

[puzzle2779]

Grace, I am sorry this will be a long post but I desperately need your help. my life has stopped because of this so please please help me. My world is falling apart and nobody is listening or helping.
I had unprotected vaginal and oral sex a couple of times with a man I know and trust. Previous to this we had both been in very long term relationships and had previously been tested for all stds with past partners so were confident we were clean. However two or three weeks after our first contact I developed an array of horrific symptoms. The slight pelvic pain I'd experienced for the previous couple of weeks became unbearable along with severe vaginal itching, swelling,redness,burning and discharge. It felt like my insides were very swollen and heavy with pressure too. I had pain urinating for a couple of days too. I also had growths on the entrance to the vagina which started small and lumpy but grew into long floppy bits of skin. I also had the chills and a terrible fever with sweats. I felt very ill. I developed a small area on the vagina that looked raw along with papercuts in some folds. As well as this I had had chapped lips that wouldn't heal that sort of looked like red raw and a bit swollen as if I'd bitten my lip but not massive fluid bubbles which would then become dry skin. Not classic cold sore but never like anything I've had before. Also a sore throat with difficulty swallowing.
This is the full list of symptoms which developed. I went to my doctor on day two when I knew something was wrong. She agreed I was red and swollen with lots of discharge and in pain so tested for everything. I asked about the growths and was told it was normal skin so nothing to worry about. I asked about herpes as I'd read on the web that all my symptoms pointed to that. She said it wasn't herpes because I didn't have sore blisters. I suffered for a week with the severe and intense itching burning and swelling and chills while watching these two skin growths get bigger. The tests all came back negative. No chlamydia or thrush etc. I did have mild bacterial vaginosis and was treated with antibiotics. I still wasn't happy with this as I knew something was wrong with me and these severe symptoms couldn't be just bv (could they?). Long story short I have been to four doctors now including sexual health clinic and all have told me the same thing. I can't have herpes as I don't have sore blisters. And the growths are not warts just normal tissue. The man has been twice to get looked at and has been told he does not have herpes as he's displayed no signs whatsoever. He did have a slight rash on the top of his leg which they told him was just a fungal sweat rash and cleared up the next day with cream they gave him. His past partner never had anything like this and he even called his previous partner before her from years ago who also has never had symptoms.
This was all nearly two months ago. Since then I have had more lip trouble and my throat gets sore and red and swells with difficulty swallowing. Also got chills and fever again as well as a feeling of sunburn all over my body especially in the lower back and hips. Vaginally I have had the odd itch and small paper cut but nothing out of the ordinary. I am convinced this is oral and genital herpes but doctors just say it isn't and won't test for it as the blood test they do isn't reliable and as I've no blisters they can't swab fluid to test. They think I'm overreacting which is frustrating as I have been so so ill and nobody is helping or even believing what I'm saying eg the growths are new-not just that I haven't noticed them before! So I am just left. What do I do? Just wait and wait for months to see if I get an outbreak or blisters. That's no way to live. I can't function. I need this sorting.
So I have hundreds of questions obviously but mainly, do you think this is herpes and warts. can you please explain reasons for your answer please as nobody is doing that for me! Thank you so much for taking the time to read this. I am truly desperate. I need somebody just to help me. Thank you.

[gracefromHHP]

at least you have answers now and can deal with this all and move on.

just to confirm -you also had an oral swab come back hsv2+?  

what herpes medication did they give you?

[puzzle2779]

Ok. This will be my last post. Especially after being 'warned' about using the site too much, which I must admit I was very upset (and a little angry) about. I used this site to ask questions and to genuinely learn things, because I was deeply worried and very anxious with nowhere to turn to. Not because I'm a hypochondriac or trying to annoy people. I really don't have that much spare time on my hands. I posted cause I really NEEDED to.

Anyway, it turns out all my panic was justified. I wish to god I wasn't posting this, and I nearly didn't but thought others may benefit as I know I always wanted to know what happened to people. So I had an appointment yesterday to get results of tests I demanded to get done by different specialists-I'd had enough.

So the 'end' to my story is - well, I've been waiting for all results to come back before posting. My partner got a blood test done which was negative but we're concerned about the accuracy of it as it wasn't a well know test. Unfortunately it turns out I do have hsv2 and warts. Confirmed via swab (so at least no need to try and find a good igg blood test now) and biopsy. And to make the situation even better I have both orally aswell. So oral hsv2 and oral warts may be rare but unfortunately I have it. partner in complete denial that he has given me these, so he is now my x partner. What a way to re-enter the dating scene after coming out of a ten year relationship. suddenly that relationship doesn't seem bad anymore compaired to this. Too late now. Appointment soon to discuss starting treatment.

Thanks to all who replied to my posts on here. Sorry if I annoyed anyone. I never intended to. I got lots of useful info so thanks.

So to anyone who has any cause for concern about their body, but keeps getting told you are ok-don't give up if you know you are not right. I KNEW it. I wish this wasn't happening to me but I'm glad I kept going back and demanded to be tested again by different people. You know your body better than any doctor. Look after you and make sure you get answers! Good luck.

[gracefromHHP]

out of all the posts I've made to you about your situation, you chose to believe that because I said that no one has seen any signs of herpes that that must mean that you really do have it?  You've had vaginitis going on which is the far more likely culprit and I've instructed you to continue following up for that.  even though tiny cuts in the skin are mentioned as herpes symptoms, typically they are due to other reasons like infection and thinning of the genital skin. the pelvic fullness you mention is not associated with herpes.

don't do yourself the disservice of fixating on herpes as a cause.  lots of gyn and skin issues can be going on and the odds of you having this many symptoms for this long and no one seeing an active herpes lesion on your cervix or elsewhere make it less likely that herpes is the culprit.  

[puzzle2779]

I was worried you'd say that. If this is the only reason you think I don't have herpes then I'm actually more convinced of it! Rather than you thinking it is not herpes due to my symptoms. The doctor I saw at the time was confident something was wrong due to the state of my vagina but wouldn't test for herpes because they said you have to have blisters-which I know now you don't, so tested for everything else which was negative. All other std tests were negative however the symptoms of herpes have recurred. I have only actually been tested once via a swab on very tiny cut. I have very little faith in the doctor's knowledge of herpes especially when saying you have to have blisters and would definitely know when you have it, but I read here that most people are unaware they have it. Plus at the time of contact the man had an itchy rash at the top of his leg. I got all the initial symptoms and in a big way including the chills fever intense itching and redness etc.. The pain of my symptoms have been extreme. I am burning with papercuts and a huge swollen pressure internally. But I guess my time here is done. Thanks for your time and all your help. I really didn't mean to annoy you or take up so much of your time. I had nobody else to turn to about this and was desperate for someone with expert knowledge to just listen and help. I apologise for taking up your time. I'll have to await blood tests to confirm now and will try somehow to sort this out. Sorry grace.

[gracefromHHP]

you've been told by multiple providers now who have actually seen your symptoms that this doesn't appear to be herpes related. why continue to doubt it so much?

[puzzle2779]

Thank you so much for replying. I'm going to ask to be referred to a gynaecologist anyway for the growths. However can I please ask why you don't think this is herpes? Because from what I've read about it and the other threads you comment on with similar symptoms all point to it. Initial outbreak after two weeks, fever symptoms, intense itching, burning and swelling with cuts and spots. And now outbreaks  with burning in boxer short area and lots of pelvic pressure and cuts and spots. With this plus all other tests being negative including stds and bacterial and fungal infections, I can only keep coming back to it being herpes. I would be interested to hear your thoughts and reasons why you think it isn't. And any other suggested of what else it could possibly be so I can pursue this with my doctor. I understand fully you can not possibly diagnose me, and I'm not asking you too, but I would be really interested and appreciative of you standpoint on this. Thank you.

[gracefromHHP]

obviously something is going on, just not likely to be herpes.

are you seeing a gyn for these issues?  

[puzzle2779]

Grace I am sorry. I am looking to you to rescue me out of this hell and I know you can't. Thank you for replying though. Even to see a reply from you is really helping me at the minute and I don't feel so alone. I have nobody to talk to about this and I honestly think I'm going mad now. My papercuts came back after more sunburn feeling in the hips and a couple of spots on my bum. Some milky discharge and mild itch too. Main problem is pelvic pressure. It feels like my whole insides are swollen. The swab of my papercut came back negative for herpes and there was no yeast or bv. Now what. I'm at a dead end. Doctors are fed up with me. They say they've done all the tests and there's nothing wrong. But I feel awful and I'm in lots of pain with these symptoms. Is it the most likely situation now that I do in fact have herpes but the swab test wasn't adequate from what I've read here and only way now is through a blood test? These symptoms can not be anything else, other than herpes.

[gracefromHHP]

honestly there's really nothing I can help you with at this point. following up each time you have symptoms is the best you can do at this point.

[Mistakeguy789]

Be seen by your doctor.  This could be herpes and it may not be.  But it isn't going to be herpes all over your body.  Be seen by a doctor.  If you can't get into your normal doctor go to a clinic.  

[puzzle2779]

Grace, please I really need your help. I cannot get to a doctor today and then it's the weekend. I am so frightened and feel so sick I can't stop crying.  I think I'm having another outbreak but it's a bit different. Can you tell me if these symptoms are familiar with herpes. Rash on thighs and little on stomach and lower back. Some red spots on bum. Sunburn feeling on bum hips and slightly on vagina, as well as between shoulder blades. Skin is hot to touch. Generally feel hot then shivery with a flushed face. Tiny papercut above clitoris. This is similar to how I felt in the initial outbreak and for a time afterwards but so far there doesn't seem to be much vaginal swelling itching and discharge going on. But of course this may come. Please grace, your input would be so helpful to me right now. I'm not coping at all. Thank you.

[puzzle2779]

How accurate is a swab test if the cut is new?

[sadone72]

Hi
I have problems too I wish weren't happening myself, lol.
Only other thing I can think of , is have you had a PAP smear lately.  I myself had a papercut, but it never went away.

[puzzle2779]

Hi. Of course it's ok. It's more than ok. It's really great that you're trying to help thank you. I have researched this and from what I've seen that are round hard lumps with a dimple so I don't think so. But I'll keep my mind open to it. Thank you. I am currently wondering if the few spots I've had in my groin are herpes related or just spots! That's why I'm asking if you get the same symptoms each time as I only had papercuts the first time and need to know whether to take notice of these or disregard them. I wish this wasn't happening!

[sadone72]

Hi Puzzle2779
Hope it's ok I chimmed in on this.  I was reading all the replies and everything. I was seeing someone who when we were together (and it wasn't from me, I got checked and was ok) he got molluscum contagiosum , it appears as "flappy skin growths" as you descibed.  They can be itchy, sore and red.  When I went to my doctor to be checked for these, he told me he's been seeing a rise in this lately.  I'm in the US, but might be something to look into, was the first thing that came into my mind when you mentioned the extra skin.  You can catch it anywhere except the palms of your hands and feets and can pick it up from objects, towels, clothing, toys, etc.  It can also look like blisters.  Just might be something to look into.
Again, hope it's ok I added my 2 cents :-)

[puzzle2779]

Thank you. I am not mad. I just know my body and want someone to help. That's all. Not too much to ask is it! Anyone know if each outbreak has different symptoms or would you always get papercuts or can you start with papercuts then develop blisters in future outbreaks. Thanks.

[victimizedperson1]

I feel your type of desperation too puzzle2779. This kind of feeling is really terrible. :'C

[puzzle2779]

Grace. I know you must be fed up with me, but you are seriously all I have at the minute. Hoping for results next week so hopefully you'll get rid of me soon. But can you tell me, do you get the same symptoms with future outbreaks as you did during initial infection? Or can you get blisters in future outbreaks if you only got papercuts the first time or would this not happen? Thank you.

[puzzle2779]

Thanks. I was hoping you'd say herpes wouldn't cause anything like this. But it looks like it could be another piece to the jigsaw. Sigh.

[gracefromHHP]

that can be due to herpes but it's more likely to be due to other causes - like infection.

[puzzle2779]

Any knowledge on blood and wbc in urine with relation to herpes. I can't find good info. Conflicting as always!

[puzzle2779]

Sorry realized that could be taken wrongly. By quick I meant concise question and answer so not to take up lots of your time. Not speed to reply. I appreciate all help here is voluntary and would never demand a 'quick' response! Thanks.

[puzzle2779]

Quick question and I would truly appreciate a quick answer. Does genital herpes cause blood and white blood cells to appear in urine?

[puzzle2779]

Bump. Anyone? Any ideas? Thanks.