Please help - unbearable pain

[Alladvicewelcome]

Hi. Sorry for the very long post.
I'm still waiting for swab results for which strain of HSV, but fairly sure after hours of reading on here that it's most likely type 2.

I got tonsillitis 2 days after first contact of who I believe passed the virus on to me. Followed by 3 lots of thrush in 7 weeks. Within 48 hours of the last sexual activity with this man I developed what I thought was just the third case of thrush. Having suffered with reoccurring thrush and BV since a teen (now 30) I knew I'd need a high vaginal swab to confirm nothing else was going on.

I also suffer with endo so I have lot of experience with speculums, but this felt off. On removal of the speculum after swab I thought I was going to pass out from the pain. The nurse just hurried me out really. When I got home I noticed what looked like a small cut at the base of the vaginal opening. from then on the burning and tingling started to be come more noticeable than usual thrush pain. Canesten wasn't cutting it and I'm fairly sure irritated me more as well as the pessary I was advised to use that night.
Day 5 and its uncomfortable to walk. By night I had a slight feeling over fever chills but didn't think much of it and went to bed
Day 6 was like I had flu on top of not being able to walk without pain. I noticed 2 or 3 small dark dots on the inner lips too. I spoke to a pharmacist as i was away for the weekend and she told me it sounded as though it was herpes.
She sold me Emla cream to get me through to being able to go home and see my doctor.
That night my temp was around 39.
Day 7 I was in a lot of pain and exhausted. When I got home mid afternoon and phoned 111. When the nurse called me back later he told me i was welcome to go down for him to have a look but he didn't want to step on anyones toes professionally (bc I was under my GP for thrush) I could tell by his face it was bad, I knew it was bad from the pain, either way he prescribed me with coldsore cream and told me to call sexual health in the morning. At this point I had a handful of blisters that were mainly red with a small whitehead. Struggling with peeing altogether. Discharge is very heavy and strong smelling
Day 8 - sexual health can't even talk to me until Friday (day 12). Called GP and went in for an excruciating swab. So far I've had no one ask me if I had any questions. No real advice other than to not have sex until we had results and to take AV for 5 days see how you go. At this point I had around a dozen blisters some just developing others were quite large and very white with a red outline. Heavy discharge with blood.
Day 9 - every day I thought ok tomorrow I'll feel better. I have to. I couldn't possibly feel worse. WRONG. By far the worst day and night. My 4th night of a high temp which hit 40. Pain in my bum and shooting pains in my legs.
Day 10 - called gp again as the pain was unbearable. Prescribed with Zapain. High vaginal swab came back abnormal for candida told to purchase fluconazol over the counter. Not sure which tablet did it but I had to call my mum to come over as I could barely keep my head up I was so out of it. Taken codeine many times for one reason or another and never had a reaction. Although very little appetite at this point so not much in my stomach. It took the edge off the pain... even if I couldn't see properly!
Day 11 - blisters start bursting now. Not able to pee properly, when I do it doesn't hurt as I'm drinking so much water. Pain in bum legs and feet is constant.
Day 12 - still very sore. Discharge heavy and bleeding from sores. One in particular keeps reblistering. Spoke to sexual health who again hurried me off the phone and prescribed me with another 5 days of AV. When I collected them I begged someone to talk to me. She advised salt baths and would call In a few days.
Day 13 and 14 blisters seem to have healed but still have hypersensitivity as well as tingling and burning. Nerve pain still constant. Sexual health seemed unsure on what to advise about this. Told me it was unlikely to be related and to talk to GP.
Day 16 I spoke to SH again. Another 5 day course prescribed.
This pain has continued. I'm now on Day 19. Waiting for SH to call me back again as I've been awake since 1am with nerve pain and all over body itching. Nothing I do is touching it. I've gone from sleeping for 11 hours a night to 2 hours of broken sleep.
I dont know what else to do. I've processed what I'm certain will be diagnosed when I get my results. I understand its a common virus but I also understand that my symptoms seem to be quite extreme and not so common.
Please just any advice at all. Anything.

[Alladvicewelcome]

Update. Confirmed HSV2

Sexual health doctor has informed me I have post herpetic neuralgia and there's nothing more they can do. I've been advised to stop AVs as no blisters and it may be causing itching, take antihistamine and painkillers. 

[chillmoksha]

Even this shall pass!!!!

[CHT]

15 hours ago, Alladvicewelcome said:

Update. Confirmed HSV2

Sexual health doctor has informed me I have post herpetic neuralgia and there's nothing more they can do. I've been advised to stop AVs as no blisters and it may be causing itching, take antihistamine and painkillers. 

Hello "AllAdviceWelcome".... so sorry for what you've had to endure. I certainly hope things are calming down by now... Many of us on this site have had similar initial outbreaks and I assure you the initial outbreak is typically the worst of any that may come later.  I'm sure you've done your homework now and know the basics for helping to prevent or at least reduce outbreaks.... avoid stress, eat well, avoid acidic foods, avoid excessive alcohol and caffeine, stay away from foods high in arginine (especially just about all varieties of nuts),  and try to get a good nights sleep every night. Many of us, myself included, also take daily supplements that help pump up the immune system (zinc, garlic, echinacea, krill oil, etc).... some believe taking Lysine supplements help (but, I've never seen it work on me and I too have HSV2).  

As for antiviral meds, I'm surprised your doctor recommended not taking them anymore.... I have found taking daily valacyclovir to be generally very helpful (more so than taking acyclovir).  Studies definitely demonstrate that valacyclovir can significantly reduce outbreaks, duration of outbreaks, and viral shedding.  The question for you will be how frequent your outbreaks may become (it's also possible you won't have more or they will be so mild as to be of little concern in terms of pain and mental stress).  As I'm sure you know, typically outbreaks will, with time, become less severe and less frequent.... you will then have to decide if it's worth taking any antivirals..... 

I hope this message helps just a little.... and that you are feeling better and staying outbreak free.....if you have any questions or just want more advice/opinions, just ask.... lots of us on this site have all sorts of recommendations in terms of what helps both in terms of helping reduce any future outbreaks or at least making them less severe and painful..... not to mention how to deal with the mental angst that comes with an HSV2 diagnosis..... be well, stay strong.

[chillmoksha]

@Alladvicewelcome many of us feel your pain. Trust me healing depends on immunity. If you look at my old post, you will find me in almost same situation. Since I took overdose of antibiotics (for other issues) for too long , i got more fucked up in this mess. unbearable and cont pain for certain years of life.

There no such thing as ETA for happiness (it';s in mind), but trust me after 2-4 years body adapts and control virus on its own besides you will have to be very disciplined in you approach esp sleep, food. Freedom which was literally free now comes with cost of food and sleep. But eventually after few months or years or some time you will be relived majorly.

Although my thought process is very much different from seemingly (I may be worng) narcisstic wilson, he has has relentlessy tried to increase awareness or you can say spirit of people in his own way. That also helps , the more bold you are the disease will be less aggressive, but this is lifelong discpline of food,exercise , sleep you have to follow atleast until cure or may be you/we are relieving last scene of morgan freeman in Shawshank redemption. They relieve him when he was actually ready/unexpected.

They are many thing's I have tried, certainly many things regional and easily affordable can also control this virus to certain extent, (I can vouch that natural/herbal may be ~ same effective as ACV,GCV etc. Medicine side effects are horrendous in long term) but  difficult is mind to control, easily distressed. Anti dote is Exercise which gives you sweat and good sleep is must.

Try warm water bag daily for 15-20 morning/evening and trust me I was in PHN for almost year (worst case was unable to just turn on my bed, or just bending down to lift pice of paper), phyiotherapy or yoga for as small as 20-30 minutes will bring rigour back in 1 year. 

 

P.S: dont stop research on your body and you condition,you may never know when you will hit good equilibrium with some unknown method.

Edited September 18, 2021 by chillmoksha

[HCT53]

On 9/3/2021 at 6:48 AM, Alladvicewelcome said:

Update. Confirmed HSV2

Sexual health doctor has informed me I have post herpetic neuralgia and there's nothing more they can do. I've been advised to stop AVs as no blisters and it may be causing itching, take antihistamine and painkillers. 

@Alladvicewelcome Hello! I have been reading up on post herpetic neuralgia and I see that doctors normally prescribed antidepressants or anti seizure meds (gabapentin or pregabalin) for the nerve pain. Have you tried taking those? 

[Sem42]

On 9/3/2021 at 10:43 AM, Alladvicewelcome said:

Hi. Sorry for the very long post.
I'm still waiting for swab results for which strain of HSV, but fairly sure after hours of reading on here that it's most likely type 2.

 

Hi AAW, I am so sorry to hear about your pain. I have HSV1 and am also a scientist, so I read anything and everything I can. Here is a little of what I've learned and I hope it helps. 

- figure out the triggers. For me they are cold weather, chilis/spicy food, fever, vaccines, fatigue and dieting. also thyroid hormone and estrogen make a difference. 

- if you hit a trigger, take valacyclovir immediately: that is, before you get symptoms. this is important because the drug works by blocking an early step in the virus life cycle. after that, it does very little. there are new drugs on the horizon that work throughout the virus life cycle, like amenalief and pritelivir, so keep an eye out for when those become available.  A note about valayclovir: it's a great drug in many respects but long term can cause damage to mitochondria (the energy producers of the cell) so you don't want to be on it forever. 

- other things that help: creatine monohydrate has been surprisingly helpful. i take 5 gm but i might up the dose to deal with an OB. I take it in the morning, in the afternoon when my metabolism is low and last thing at night because for me, the nights are the worst. I notice a lessening of my symptoms in less than an hour. 

- i aim for a healthy diet and i take supplemental minerals and vitamins. zinc seems to help. Co-enzyme Q, B vitamins, I eat an orange every day but should probably take some vitamin C too. 

- recently I learned that i am allergic to our cat. we moved the cat to a relative's place and my symptoms immediately got better. i wonder if the inflammation from the allergy helped fuel additional reactivations. basically, herpes seems to respond to any little stressor so I try to keep them low. 

- after an OB, it seems I am primed for more OB. The longer I go without an OB, the more resistant i become. this is probably because the viral DNA gets wrapped up in cell proteins that keep it 'off' but that process takes time. So during and after an OB I try hard to stay away from additional triggers. 

- one last thought: doctors always want to see a cold sore or blister. However, in my experience, there's a lot going on that doesn't induce a blister. I get sensations that I associate with prior cold sores, but now only those sensations appear. for example, drying of epithelia tissue like lips, nose, eyes. tingling in my brain or ears (this worries me quite a bit as herpes is implicated in dementia). I think medicine has not figured out whether these symptoms are sub-clinical reactivations or just body sensations. My own bias is that these are reactivations, just not as strong, and I treat them accordingly. 

Good Luck!! Susan.

Just now, Sem42 said:

Hi AAW, I am so sorry to hear about your pain. I have HSV1 and am also a scientist, so I read anything and everything I can. Here is a little of what I've learned and I hope it helps. 

- figure out the triggers. For me they are cold weather, chilis/spicy food, fever, vaccines, fatigue and dieting. also thyroid hormone and estrogen make a difference. 

- if you hit a trigger, take valacyclovir immediately: that is, before you get symptoms. this is important because the drug works by blocking an early step in the virus life cycle. after that, it does very little. there are new drugs on the horizon that work throughout the virus life cycle, like amenalief and pritelivir, so keep an eye out for when those become available.  A note about valayclovir: it's a great drug in many respects but long term can cause damage to mitochondria (the energy producers of the cell) so you don't want to be on it forever. 

- other things that help: creatine monohydrate has been surprisingly helpful. i take 5 gm but i might up the dose to deal with an OB. I take it in the morning, in the afternoon when my metabolism is low and last thing at night because for me, the nights are the worst. I notice a lessening of my symptoms in less than an hour. 

- i aim for a healthy diet and i take supplemental minerals and vitamins. zinc seems to help. Co-enzyme Q, B vitamins, I eat an orange every day but should probably take some vitamin C too. 

- recently I learned that i am allergic to our cat. we moved the cat to a relative's place and my symptoms immediately got better. i wonder if the inflammation from the allergy helped fuel additional reactivations. basically, herpes seems to respond to any little stressor so I try to keep them low. 

- after an OB, it seems I am primed for more OB. The longer I go without an OB, the more resistant i become. this is probably because the viral DNA gets wrapped up in cell proteins that keep it 'off' but that process takes time. So during and after an OB I try hard to stay away from additional triggers. 

- one last thought: doctors always want to see a cold sore or blister. However, in my experience, there's a lot going on that doesn't induce a blister. I get sensations that I associate with prior cold sores, but now only those sensations appear. for example, drying of epithelia tissue like lips, nose, eyes. tingling in my brain or ears (this worries me quite a bit as herpes is implicated in dementia). I think medicine has not figured out whether these symptoms are sub-clinical reactivations or just body sensations. My own bias is that these are reactivations, just not as strong, and I treat them accordingly. 

Good Luck!! Susan.

PS, also - fatigue and flu like symptoms: those are also from the virus, in my experience. They are not a second infection. 

[chillmoksha]

@Alladvicewelcome you are still young, trust me ACV,VC,petlivXX wtc are all bullshit, will be cause of ruin in long run (would def help in extreme emergency), and till the time we become 60+(time when our immune system can be really fked up) , cure is inevitable almost  99.99% by then.  Many a times studies are contradictory and there are lot of things that  have not tested, discovered or less evidence/ trials, selfish motives etc. Many of the papers academics are too focused on claiming to be right/almighty that they often forget there can be other way or more potent solution so dont bother to feel depresses when you read neurological/dementia/alzheimers related to this disease.

I have almost 7 to 14 days of night shifts every month  in whole year, In 2021 ,  ~ I got only 1-2 OBS's. Make your diet strong and you Mind stronger. this shall pass as body become used to it , over the time every cell has memeory and become sharper to deal with that shit.

I almost have daibetes (yeah i know blaming) but cause of this shitty virus, I  was unable to do anything, PHN was pralysing for almost year or more along with other shitty STD's.

Almost reversed my diabetes (search json fung). I know this is offtopic but having diabetes would be hell for immune system to deal with herpes. Knwoing that  diabetes is  completely reversible/ in some sense curable(to degree you adhere) , would give great hope for those who have or may contract later, we dont want fucked up immune system while dealing with this  virus. 

The antibiotic gallore and Anti virals eventually fucks up your liver which can lead to uncontrollably chronic diseases, NASH,NAFLD,cirrohosis, cholestrol,stroke,diabetes etc. So when you commit yourself for antivirals, worst thing  is long term/unforseen consequences.

L lysine, R alpohaliposic acid and B vitamins in general are very  good along with Fasting(search autophagy / contradictory statement but belive me it works) specifically for this viruses cause this whole family loves nerve/ their endings and atleast in my case lot of nerve pain, cause some antibiotics fucks your B vitamins and d3 to super low and then this virus fks up more. I have taken only  B vitamins for few  month's in 2021 .

The only issue i find is lower  backpain(as seen many people who have herpes actually experience lumbar related issue (although aging does same thing but we accelerate)) , start exercising even if you think you are fit cause our bodies are meant to be mobile. No amount of supplement /medicine can make longer and happy/healthy life without exercise.

Exercise 7 days a week and aim for 30 min to 1 hour. If you feel horrible in sun(trigger) take vit D+k2 but make sure you get exposure to some sunlight(sitting for few minutes in window). As mentioned in above post control your cortisol/stress,  I find exercising daily and doing what you love never stresses you, if you dont have priveleges i.e if you cant do what you love then make sure you love what you do (howerver boring/disciplined it is), bodies hormone responds like wise. Lot of young energetic people havent survived half as much we did till now (covid/accident/cancer etc), so be gratefull and happy and find something interesting as long as your alive. if you are male increasing testerone is biggest boon(sometimes bane)  as this will keep you happy, so exercise and increase it (no external stimuli).

Currently HIV trials were started, hopefully in decade GHSV1/2  will be thing of past but def there will be something or other thing will be there to  worry, so be gratefull of what you have and  ponder the reasoning behind it/involve in something meaningfull as when reality hit that your are mortal and worst thing, you realise this  not only happens to other but can happen to you opens limitless posssibilites to improve ourselves and focus on what we love the most.

 

Somehow in winning /finding triggers/or taking too much precaution  for herpes (battle), you might lose war.(  chronic issues - enjoying life). 

Edited February 11, 2022 by chillmoksha