Dr Hive - Herpes - half question, half angry vent

[abba12]

So, last year I had an Ectopic pregnancy that ended in the worst case scenario, a rupture 8 days after beginning medication. Thankfully I am fine, and recovered, and even ready to try for another baby this year. However, 4 weeks after the surgery, I had an outbreak of herpes. It was a classic first outbreak, textbook. I know the first thought is whether DH cheated, but, we didn't have sex for the three months previous to the initial outbreak (we'd had two miscarriages previous to the ectopic, so we stopped having sex as soon as I conceived) and the internet says if it came from him it should have led to a first outbreak within 6 weeks. He does not have herpes himself. I am convinced at this point that I have gotten it from the hospital or ultrasound clinic during the ectopic situation. 

 

I saw my doctor, and she denied that could be possible. Her theory? I got it when I was abused as a child, and it has lain dormant all this time until the surgery which triggered it to come forward. My research says this is impossible, that yes it can lie dormant, however if it does it comes forward with normal subsequent outbreaks and skips the 'first' outbreak (which is far more severe than any subsequent ones). My first outbreak was classic, complete with fever and total inability to walk due to the pain. Also, I've been in a weaker physical state than I was post-surgery in the past, when it should have been more likely to flare up. When I tried to tell her this, she said I could have given it to myself through touching a cold sore on my mouth and then touching elsewhere. Internet also indicates this is wrong. You can get genital herpes from a cold sore, but not from your OWN cold sore because your body recognises it or something. DH does not have cold cores btw, so again, not from him. My GP isn't an idiot, I actually liked her before this, so at this point I'm fairly certain she is covering her behind and the behinds of all the doctors who touched me, and is also avoiding the possibility of being dragged to court, rather than actually being this misguided. 

 

This is not actually the point of this post, but since I figure people will be as angry as I am, I have spoken to a lawyer friend about this situation and she says it sucks, but there's pretty much nothing I can do legally. There is only my word that we didn't have sex during the three months previous. There is only my word that I've never had any hint of a herpes symptom before now. And even if I could prove it was contracted during the correct timeframe and not from my husband, I couldn't hold anyone responsible, it could have come from any of two different hospitals, two different ultrasound clinics, and a GP office, all of which had access to my private areas during exams and surgery for the ectopic pregnancy. I have my beliefs where it came from, but absolutely no proof of that. Under Australian law, it would be a lot of pain and work and almost definitely no result. I'm trying to accept that. I'm not doing very well at it. Some of you know I came from a trauma background and was sexually abused by multiple people for years. Despite everything I lost because of that, including the ability to breastfeed and the ability to have sex (or, during bad days even walk) without pain, I could always say at least I never got an STD, I was spared that and never had to be careful of such things. Getting one now, from a hospital... I'm having a very, very hard time coming to a place of acceptance about it. 

 

Back to the original point of this post though. Most herpes flare up occasionally during times of stress. I couldn't possibly be that lucky. It has flared up every month coinciding with ovulation. my body has always been sensitive to hormone changes, so it doesn't surprise me but it is extremely upsetting. On top of that, despite taking lysine daily to see if I could prevent an outbreak that way, this month it had the ovulation flare up, then, after treatment, was fine for a week, but due to a very stressful week I've had another flare up this week, no more than 10 days after the last one cleared up. These are especially hard for me mentally, as any symptoms or issues down there put me in a very bad place with my PTSD, and trigger things. And the first day of the flare ups agitate other pre-existing issues and lead to a lot of pain. I can't do this. The internet indicates many people stop having subsequent outbreaks after a year, but I see no evidence of that happening yet. they're definitely not first-outbreak bad, but they don't seem to be improving or lessening.

 

And to add insult to injury, we are trying for another baby, which means having unprotected sex during ovulation. But DH doesn't have herpes and I don't want to go giving it to him. So the outbreaks coinciding with it means we're at a standstill as far as conception goes. I know there's the medicine dropper method, but... that's how my first child was conceived due to injuries from past abuse. I never wanted to have to go back to that. There's a lot of baggage there. We conceived number two and three normally, and... it's like, I overcame something my abuse tried to deprive me of, and going back to that, it's like I lost, and... I don't like my body very much, seeing it incapable of doing yet one more thing again, it's a big deal for me mentally right now. I'm not sure I can explain it well, but, for me that's a last resort right now. 

 

So, now I've gotten past the venting part, Hive, does anyone have any knowledge I haven't found about controlling and dealing with herpes? I know there's some diet changes I'm supposed to be able to make, but... I guess I'm still in the denial phase, I feel like I shouldn't have to go without stuff because of morons at a hospital who can't sterilise their equipment properly (or worse...). But I suppose I have to accept it eventually, so anyone want to make it sound less horribly constraining than the internet does? Is there anything else I can do to help, perhaps something I can do for hormones to try and stop the ovulation outbreaks? I have tried lysine obviously, but noticed no significant differences. I am going back to my doctor today, and she may put me on a daily dose of anti-virals, but I don't want to take them forever if there's natural options and I'm not sure if they're pregnancy safe anyway. Anyone have a herpes pattern like this and find it went away eventually? Anything encouraging at all? I'm so upset over this situation that it has taken me three months to even make myself write this post. DH does all the researching for me because it upsets me far too much, so I haven't seen everything online first-hand, only what he thought was important or what I thought to ask, so if I've missed something obvious let me know. 

Edited January 9, 2017 by abba12

[Janeway]

Your doctor doesn't want to be sued. And if you could get Herpes from their lack of proper care, you could get HIV. You need a lawyer.

[gardenmom5]

I'm so sorry.

 

It sounds like she KNOWS she's covering behinds.  could it also be dirty reused instruments?  (I know there are so many reports of hosptials/clincis not properly cleaning instruments. and it is almost a cliche of drs NOT washing their hands between patients.)

 

is the lawyer you spoke with - a medical malpractice lawyer?  I would talk to one who has specific experience in medical law.  if you spoke with someone in a different area - they are relying only on what they learned in law school - not in the field where they'd be doing more focus on medical case law.

[Liz CA]

No real knowledge but I would be royally p&%$$$ as well.

Some people who have frequent outbreaks are put on maintenance meds. One of them used to be zovirax and another valtrex but since you are in AU, it may be different stuff. Would this help at least while you are trying to conceive?

[Anne in CA]

My first thought is that where there is smoke there is fire. Other people have had the same experience you have, and probably your doc knows it. I still think it might make you feel more empowered if you could spread the word somehow, because this seems to be victimizing you in a really unfair way. Can you leave a review on every website for every place you received healthcare that this happened? It seems fair to warn others. Since the doc is covering the medical people, who is covering the others in your situation? 

 

I am sorry. It isn't fair, and I have no trouble believing it. I had two different close acquaintances who got Hep B after having a baby at a certain hospital and it turned out the hospital hushed up a huge outbreak around that time. I just easily believe that this is bigger than you think. 

[MercyA]

I am so incredibly sorry.  :grouphug:  :grouphug:  :grouphug:

 

If you can ignore the promotion of their supplements, Life Extension Foundation has excellent, well-researched protocols for all kinds of conditions, including herpes:

www.lifeextension.com/Protocols

 

Aloe vera also comes to mind. It is supposed to have anti-viral properties. I did a quick search and the Mayo Clinic site says "research suggests that aloe may be an effective treatment for genital herpes." I believe it can be used orally and topically, but you would want to have your DH research that. 

 

More  :grouphug:  :grouphug:  :grouphug: .

 

ETA: And, yes, I have zero trouble believing you caught it at one of your appointments, which makes me steaming angry on your behalf. 

Edited January 9, 2017 by MercyA

[Barb_]

I'm sorry. I definitely believe you could have caught it from a medical facility. You can pick up virulent staph, why not a virus?

 

That said, one of my girls did give herself genital herpes from a cold sore. She was only 12 or 13, not sexually active, and popped up with it not long after her period. It was pretty horrible.

 

ETA: Do you supplement with vitamin D? If not, you may want to try that first. Vitamin D is one of the best methods out there for immune system support and strengthening. The daughter I mentioned above had outbreaks every month for half a year but they went away after she began supplementing. She came down with mono in 9th grade and we found out her D levels were basement-level. She has been taking 5000iu a day since then and as far as I know the outbreaks have never come back (she's 22 now)

Edited January 9, 2017 by Barb_

[Guest]

I'm sorry. I definitely believe you could have caught it from a medical facility. You can pick up virulent staph, why not a virus?

 

That said, one of my girls did give herself genital herpes from a cold sore. She was only 12 or 13, not sexually active, and popped up with it not long after her period. It was pretty horrible.

 

ETA: Do you supplement with vitamin D? If not, you may want to try that first. Vitamin D is one of the best methods out there for immune system support and strengthening. The daughter I mentioned above had outbreaks every month for half a year but they went away after she began supplementing. She came down with mono in 9th grade and we found out her D levels were basement-level. She has been taking 5000iu a day since then and as far as I know the outbreaks have never come back (she's 22 now)

I was going to say I had read before that you can transfer oral herpes to your own genitals. It's one reason I wash my hands constantly when I have a facial cold sore (which, incidentally, is almost never on my lips but is nasal. Yes, nasal herpes. I did not know that was a thing until only about five years ago.)

[Selkie]

I'm so sorry, how awful.  :grouphug:  I hope you get some helpful advice and are feeling better soon.

[Scarlett]

I am so so sorry. I am also,steaming mad on your behalf.

[happypamama]

I am so sorry.

[Noreen Claire]

Acyclovir (generic Valtrex) is safe and commonly used during pregnancy at a maintenance dose, as someone with an active herpes outbreak within a few weeks of their due date will have to deliver via c-section.

 

It is possible, knowing that you flair up at ovulation, to start taking anti-virals a few days before you usually flair up and then stop again after ovulation, in order to prevent the monthly outbreak.

 

I've had herpes for nearly 20 years (it truly is the gift that keeps on giving), but the outbreaks are very minimal and far between now. I also have learned what my prodromal symptoms are - the nerves in the skin on my legs get very tingly and touching my skin feels like fire - and immediately begin taking my meds. This usually knocks it down in 24 hours and spares me an actual outbreak.

 

FWIW, I've been with my husband for 10 years now and he has not caught the virus. (thank god!)

 

Good luck.

[EKS]

Do you know what type of herpes it is? You said the doctor thinks it came from a cold sore which indicates to me that it is herpes simplex 1. Has that been confirmed? If so, I'd wait and see if recurrences are a problem. They might not be. Having that situation here, I've had something like three recurrences in 30 years (and they were nothing like the initial outbreak). No treatment.

Edited January 9, 2017 by EKS

[Mom-ninja.]

I was going to say I had read before that you can transfer oral herpes to your own genitals. It's one reason I wash my hands constantly when I have a facial cold sore (which, incidentally, is almost never on my lips but is nasal. Yes, nasal herpes. I did not know that was a thing until only about five years ago.)

 

I've also been told herpes 1 and 2 can be transferred from any mucous membrane on one's body to another. This includes the nose and *eyes*

[Joker]

I've also been told herpes 1 and 2 can be transferred from any mucous membrane on one's body to another. This includes the nose and *eyes*

Yes. Ds had an outbreak of HSV 1(confirmed by testing) last summer. His area is high on his cheek and very close to his eye. They debated with the local children's hospital regarding admitting him to try and prevent it spreading to the eye. We were able to keep it on just the cheek, though. He's already had another outbreak but thankfully it was much less severe and we medicated right away. I worry about it getting to the eye though as the doctors said it is very painful. And they still have no idea how he got it on his cheek as he's never had it anywhere else (not even a cold sore on his lips).

Edited January 9, 2017 by Joker

[rmtzc2009]

I take Valtrex 500 mg daily and Lysine When I have a flare up I take Valtrex 1g. 3 times daily but I rarely have any flairs. Prior to starting this regimen I was having regular and horribly painful flare ups. Lysine alone reduced buy didn't completely prevent my flair ups.

 

It's protocol that you'll be put on Valtrex later in a pregnancy. You can't deliver vaginally if you have an active outbreak. At least that's what my OB said.

 

I do personally know someone who contracted it from a doctor's speculum that had been used on the prior patient. She had a solid lawsuit but in the end the lawyer advised that it would get ugly and they'd try to discredit her life in any way possible. She was a women later in years and was embarrassed this even happened so she dropped the suit. I felt so bad for her.

 

I'm sorry your suffering with flair ups.

[Melissa in Australia]

:grouphug:  :grouphug:  :grouphug:  :grouphug:

 

 

[Tap]

Will they swab and test the lesions to identify if they are oral or genital herpes?  Dh has oral-herpes so I did a bit of research a few years back, and I did find material that said you could have either or both forms in either or both areas. I was having some canker sore looking lesions in my mouth (and a random mystery one on my thigh) that weren't quite canker sores. My MD wanted to rule out herpes as a cause so they cultured it.  

 

I don't believe that the idea that you can't get HS1 on your genitals from yourself, to be true, because if you body knew how to deal with them...you wouldn't have a second outbreak after the initial outbreak anywhere. So, if you had it on your mouth once, you couldn't get it on your mouth again.  

 

DH and I have been together since 18yo.  I have never had an outbreak but I am certain that at sometime I will have one.  I am sure I have it, but just haven't ever broke out from it.  

 

Same as shingles.  I had shingles in my 30s.  Most people don't have them until they are in their 60s.  But even kids can get them.  Just because most people have a certain pattern of outbreaks from viruses, doesn't mean that everyone does.

 

As as aside...I know a woman who had shingles in her peri-anal area.  So you may want to add that to your research.  They do look fairly similar and are both very painful. 

 

 

 

Sorry, that you had a horrible experience.  Not matter what is going on, it is not right that you should have to be dealing with this on top of everything else.  (((Hugs)))

[Carol in Cal.]

How horrible for you.  I am so sorry!  And, I believe you. 

[kiwik]

Have they cultured a swab? It would help to know what type.

 

Eta. I would be furious but you can't sue in NZ anyway. Eta. There may be exceptions but medical misadventure is covered by ACC in the unlikely event you could prove it.

Edited January 9, 2017 by kiwik

[gardenmom5]

 

 

Same as shingles.  I had shingles in my 30s.  Most people don't have them until they are in their 60s.  But even kids can get them.  Just because most people have a certain pattern of outbreaks from viruses, doesn't mean that everyone does.

 

 

 

shingles is caused by the varicella-zoster.  aka: the virus that causes chicken pox.  my dd had one at six.  

[lailasmum]

I have a friend who is certain she picked up an std at the hospital after being examined when she had a miscarriage. She didn't get far with getting them to admit that she could have picked it up there.

 

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[Tap]

shingles is caused by the varicella-zoster.  aka: the virus that causes chicken pox.  my dd had one at six.  

Yep.  I was just mentioning it as another virus that can lie dormant, and then get activated later in life.

 

There are 8 types of Herpes Human Virus.

3 of them are:

 

HHV1-oral herpes

HHV2-genital herpes

HHV3- Varicella Zoster Virus (shingles--anyone who has had chicken pox can get shingles)

 

What we call herpes is definitely different than chicken pox, but they are both variants of the Herpes Human Virus.  They are technically similar but vastly different.  Some people confuse the lesions of one with the other.  

 

I work in a pharmacy which vaccinates for Shingles. We get quite a bit of training so we an answer questions about it.  When I got shingles, it was on my face and the first couple of lesions were near my mouth (but not on the lip margin). Over the next day or so, they spread to my temple, in my hair and under my eyelashes.  I thought it was shingles in the first 12 hours, so I went to the urgent care to get antivirals.  The doctor who saw me said it was cold sores that were infected. I didn't feel he was correct in his diagnosis, so I went to another doctor an hour later who agreed it was absolutely shingles (pain, on a nerve path, only on one side, not on the lip margin, speed of progression, etc).   So, confusion definitely does happen even with doctors.

 

The person who I mentioned had shingles in the peri-anal area, thought she had herpes. She was elderly and didn't really know much about herpes, other than basic information.  She suffered for weeks before she finally asked her daughter to take her to the doctor.  The doctor misdiagnosed it at first too, and then finally changed his diagnosis to shingles. It was the pharmacy that finally alerted the doctor to the possibility.  The doctor was giving her medications for pain and treatment, so she kept coming into the pharmacy day after day to try different things for the pain.  Once it became obvious that she wasn't healing as fast as one would expect for herpes, then idea that it was shingles was put on the table. 

[Butter]

Try Lysine.  For some people that's all that's needed to control outbreaks.  If Lysine alone doesn't work, there are herpes medications you can take.

[Mrs_JWM]

I am so sorry, Abba12.

 

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