8 weeks of pelvic, nerve pain. Does it end?

[RingofFire]

Hello all,

I had unprotected oral and vaginal sex with a woman in early October. I felt initial burning, pelvic pain, slight groin swelling, stinging at tip of penis, testicle pain and light nausea for several days. These symptoms have been intermittent throughout the last 8 weeks.

I have felt all of this before 5 years ago, but that time, the symptoms went away in around 6 weeks and I was never tested for HSV 1 or 2. So we just assumed it was some sort of unidentified bacterial infection.

This time, the doctor did test me. My HSV-1 IgG count was negative and my HSV-2 IgG count was 18.7. Which seemed high. I was told by them though that I may or may not have been exposed to the virus. They gave me no medication at first until I visited a second time a couple of weeks later because I was still having very intense symptoms. I tried 1g of Vacyclovir 2x a day for 7 days but it did not help.

Anyhow, I'm eight weeks in and while symptoms seem to be diminishing on somedays, they seem to come back, but not quite as intense. I have no visual lesions, just the internal, intermittent burning and pain. It seems worse after sitting.

I thought things would have subsided since they say the first out break is the worst, but I believe this is the second and it's still going. 

Has anyone else had this experience with nerve pain? I'm just hoping it gets better. I'm supposed to travel a few times this winter and I can't imagine it if I'm in pain like this. Any background or experience you can point me to would be much appreciated. Thanks!

[RingofFire]

Update on this one: My doctor is now 90% sure it is a hernia. 

I've also had a full exam done 3 times on my genitals, no lesions at all, but that HSV-2 Test IgG level at 18.7 still worries me. I was taking 5,000 mcg of Biotin daily at the time of the test (and also took it right before I went to the doctor that day) and had heard it could elevate and provide false results. Has anyone else had experience with this?

[Flowerteacher55]

Hi!!! 

Sorry for the late reply. 

I hope you are feeling okay. 

I am so sorry that you've been suffering with such pain. The symptoms do sound like it could be a testicular hernia. Did you experience any rash or sores? Did you notice swollen glands or any flu-like symptoms when these other symptoms first started? 

The high IgG result indicates you have antibodies, and for an HSV antibody test, your score is definitely positive. Typically for HSV IgG scores, anything greater than 0.99 indicates a positive test result. Did the doctor do a herpes-specific IgG blood test, or was he testing for another type of IgGs? 

I am unsure about how Biotin impacts IgG scores but I will look into that! 

It is also possible you have HSV and a hernia, just HSV, just a hernia, or hypothetically neither! Further testing and perhaps a PET scan or ultrasound would help the doctor see if there is a hernia or internal issue occuring. Also, another herpes HSV test may help, too. Asking your doctor to clarify the results and if the blood test was definitely for HSV-specific antibodies.

Sending blessings of health and happiness your way ☀️. It will be okay, and we are here to offer support and advice any time! 

Blessings,

grace

 

[RingofFire]

Hey, thanks @Flowerteacher55 for getting back to me!

No rash or sores, and I may or may not have had swollen glands. It may be that if it's a hernia that it makes it feel like my groin glands were swollen, but I couldn't feel any increase in size. It was just kind of a dull to mid-level pain in my groin area. The only flu-like symptoms were a bit of light nausea and fatigue, but I'm still having that occasionally, and the fatigue could very well be due to loss of sleep.

The IgG test was definitely for HSV-2. The doctors said that it may or may not indicate that I have HSV-2. That I should come back to test if I see any lesions, but I haven't seen anything like that.

Having an ultrasound done here for hernia in the near future. I'll let you know how it turns out. Thank you again for your support!

 

[Flowerteacher55]

Hello,

Okay, thanks for clarifying! Then it sounds like you could have asymptomatic HSV-2, especially if you've never noticed sores or bumps. Also, the fact that the IgG was for HSV-2 indicates you would have had the virus for at least 12 or more week (that's the time that the body needs to build up detectable levels of IgG antibodies. So, if you do have HSV, it definitely seems it would have been from a past partner, and perhaps you've been asymptomatic (assuming the symptoms you've been having are from HSV and not the hernia!). 

It's great you're getting the ultrasound. Keep us updated on what happens! Stay strong! We are here for you! 

[RingofFire]

Well, update here @Flowerteacher55. The ultra sound was negative, so the doc said he would recheck me in a week.

Is there any way this is being caused by HSV-2?

From other people's stories, it doesn't sound like they really align. My pain has been pretty constant on a daily basis for 10 weeks now. I've had dull groin pain, pins and needles, testicular, perineum, and penis pain. No lesions on penis or elsewhere and I've been checked by the doctor 4 times. 

I'm definitely getting really irritated with the daily pain. I'm also dealing with the idea of dating again. I was just finally getting my groove back when all of this happened. I haven't attempted dating since this happened 10 weeks ago. I'm not sure how to move forward. Right now, just taking it one day at a time. Hoping to feel better physically, then try to tackle dating again. I'm in my 40s now though, I've never been married and I live in a small town. I'd really like to find someone, but with the pain and potential hsv diagnosis, my head is all over the place.

[Flowerteacher55]

Hello,

It's wonderful that the ultrasound came back negative. It's also great that the doctor said they would re-check next week. I am saying prayers for another negative ultrasound! 

I also am praying that you get a diagnosis. From everything, it sounds like this may not be HSV. I will keep researching what it could possibly be. If your doctor doesn't have any possible diagnoses, it may be best to ask for referrals to a urologist and a virologist. 

I am so sorry that you've been struggling with the physical and emotional stress. You don't deserve that at all. Please know that this is NOT a sign from the Universe saying you shouldn't date or be happy. You have every single right to be happy and find a relationship that is built on true love, respect, and unconditional support and love. Please know that it is 110% possible to find love, whether you have HSV, another condition, or anything at all! You are not defined by your symptoms or your struggles. You are strong, you are a survivor, and you will get through this. We are all here for you! 

You are a blessing 🌟🦋.

The world needs you 🌎💛.

Blessings,

grace

[RingofFire]

Well, @Flowerteacher55,

I returned to the doc, but he doesn't really know what to tell me. He said that the negative ultrasound for hernia is more than likely correct and at this point to just see how things progress. He didn't have any suggestions for a specialist, because he's not finding anything that would be causing these prolonged symptoms, so he's unsure where to refer me.

My symptoms aren't what they where, but I still have daily discomfort, itching thighs, groin pain, but less testicular pain and penis pain. I feel like I'm getting my sex drive back, although I've been worried about spreading to someone else.

I guess I just wish I knew if this is basically a recurring infection or sort of the aftermath of having an infection. Prodromal symptoms are basically described as the same thing I'm having, but it seems unlikely from what I've read that I would have symptoms for 12+ weeks. I wish there was a way to know whether the virus was shedding or not. I can deal with my own pain, but I don't want anyone else to have to experience it if I can avoid it. 

[Flowerteacher55]

Hello @RingofFire!

I am so sorry that the doctors appointment did not provide a diagnosis. If the doctor doesn't know who to refer you to, that's just absurd! Could you ask for a referral to a urologist? That may help.or perhaps a virologist? The urologist may really help though since they specialize in the lower region and perhaps they've seen others with similar symptoms. 

it's great your symptoms have gotten better! I'm saying prayers for you to fully heal 🍀

I completely understand your worry about passing your infection to another person. It's great that you are considerate of the well-being of others. 

TO get back into saying you could always hold off on any intimacy and explain to the person what happened, and how you are currently trying to get a diagnosis. Waiting before being intimate is okay, and can often make the relationship even stronger and more romantic. 

I hope this helps! 

Stay strong! Things are getting better! 🌟☀️

[RingofFire]

Well, Happy New Year @Flowerteacher55and this is still going on. The intensity is not as bad, but I'm still feeling tingling, itchiness in my thighs and pain in my groin pretty much every day at some point.

What's weird about this to me, is that I know I experienced similar symptoms 5 years ago, but I have on record that they subsided in less than 5 weeks. I'm now into week 13. I'm hopeful that at some point it stops, but what's making me anxious is the idea that this means I'm constantly shedding the virus, so if I want to have sex, I shouldn't, because I'm not trying to pass this on to anyone.

My only hope is that this maybe will mean that the virus was dormant for a long time, was literally sucked out, and caused it to have an intensity far worse than anything I've experienced before. Maybe this means there won't be an episode for another 10 years. I still haven't had any types of lesions or sores, just these nagging symptoms which could either be constant prodromal or nerves I guess.

Does anyone have any insight into the difference between prodromal and nerve irritation after an infection?

I'm very healthy in general, I don't have any immune deficiencies or any other reason why this should be happening that I can tell. My symptoms seem extremely rare from what I've read on here. Thanks for any insight!

[Flowerteacher55]

Hello! 

I am so sorry about this. You don't deserve this nagging pain and mysterious symptoms! I really think it is wonderful how despite this all, you are staying hopeful and calm. You are inspirational! ☀️

It is interesting that you had these symptoms five years ago. You could be correct that this has been a dormant and has recently awoken. 

Prodrome symptoms and lasting nerve irritation are similar but different. Prodrome symptoms can involve many symptoms, Including tingling, however these symptoms would typically cease after an outbreak. Nerve damage and irritations (usually called post-herpetic neuralgia) lasts and linger even after outbreaks end. A neurologist could best diagnosis and explain this as well. 

I hope you feel better soon!! It's great that you've seen some improvement. You are in my thoughts and prayers! 

Blessings! 🌟🌻

[RingofFire]

@Flowerteacher55

Well, another update here. I spoke with a doc online and he said what I've been dealing with may actually be something completely different. He said it could potentially be Chlamydia or Non-gonnococcal Urethritis. So they are trying out a week of Doxycylcine 2x a day for 7 days. So far, it's been 3 days and I do feel better. So I'm keeping my fingers crossed here. I'll be happy obviously if this does the trick, but also angry that the other 5 visits to a doctor in a real-life office and they couldn't figure out that giving me an antibiotic might do the trick. Instead I've spent a ton of money on all of these false diagnoses, plus an ultrasound and a false hernia test. So stupid.

I also spoke with Terri Warren and she said this in her forum

"Groin and thigh pins and needles feeling, pelvic pain, swollen groin, testicle pain and pain in the tip of my penis are not really signs of HSV 2. Neither are light nausea, loss of appetite, frequent urination, and exasperated symptoms after sitting. Some people who have HSV 2 can have the pins and needles feeling but it should not be constant."

Anyhow, keeping my fingers crossed here that this is just about over and I wanted to post so that those who think they may be experiencing a breakout, may be actually experiencing something completely different.

[Flowerteacher55]

Hello @RingofFire!

I am so happy that a doctor finally gave you some sort of possible diagnosis! If the Doxycycline works, it would make sense if you had some sort of viral or bacterial infection, since Doxycycline is a really strong antibiotic. However, urethritis can be caused by irritation and other urinary tract issues, too.

Thank you again for sharing your story with us-- your possible diagnoses helps so many others with similar symptoms, since now they can ask their doctors to rule out the chlamydia or nongonnoccocal urethritis. 

I am happy you are feeling better. Keep us updated! 

Blessings! 🙂 

[Flowerteacher55]

@RingofFire Oops! I forgot to add --

It's great you spoke to Terri Warren. She is wonderful. ❤️ 

Thank you for sharing her quote with us!

[RingofFire]

Hello @Flowerteacher55 Just thought I would provide a quick update. I finished the Doxycylclene and while it did seem like it helped, it did not eliminate symptoms. I returned to the doctor after speaking with a Urologist online who suggested a 2 week cycle of Ciproflaxacin to see if that would clear things up. Well, I'm almost finished with the treatment. I only have 2 days left, but I'm still feeling a decent amount of groin pain and itchiness on my inner thighs. It really kinda sucks. It seems to be much worse when I'm sitting down. I still don't know if this is actually an HSV-2 infection or something completely different. Hopefully someday I can figure it out. For the time being, it really sucks. I haven't had sex since this started out of fear of giving something to someone else, but I haven't had a chance to be retested. Everyone I've talked to though thinks that my symptoms don't align with HSV-2. So either I have HSV-2 and it's causing some super weird symptoms, I don't have it and this is something else, or I have it and I also have something else that's causing these other symptoms on their own. Anyhow. That's the news on this end. Kind lame, but atleast I'm better than I was back in October, November.

[Flowerteacher55]

@RingofFire Hi! 

Thanks for the update. I am so sorry that you are still experiencing these symptoms! It really does sound like it could be another illnesses besides HSV. Doxycycline is a pretty strong antibiotic, so if you had an infection of some kind that was causing inflammation, it should have helped. Perhaps you could try seeking an immunologist (allergist). They may be able to provide answers, since it seems this could be an inflammatory response of some type. Feel better!!!! 

Blessings,

grace

[RingofFire]

@Flowerteacher55 Ok, another update here. Saw a Urologist this week and he is suggesting Oxybutynin as he thinks the nerves issues could be bladder related. I've also been taking this OTC Magnilife Leg and Back Pain relief Homeopathic supplement I found at Walgreens. I've been taking it for a week and have had significantly improved the nerve pain I've had going on in my inner thighs and groin. I obviously can't say for sure that's what's helping, but I though I would post it here. Also, Lidocaine works really well for muscle and nerve pain. I've found it doesn't burn like Menthol based gels.

[Flowerteacher55]

Hello @RingofFire,

Thank you for the update! I'm happy you are feeling better. Oxybutynin is used to treat overactive bladder; if your nerve pain is coming from your bladder, this could help! Did the doctor give any hypothesis as to what possibly caused the bladder nerve pain? 

Sending happy healing thoughts your way!! 

[RingofFire]

@Flowerteacher55Basically, we've already covered a lot of ground. He's thinking that there's very little chance it's a bacterial issue, since I've already tried several antibiotics. I also asked if he though it could be something associated with HSV-2, but he said that is usually more localized pain. He noted there are a lot of nerve endings associated with the bladder and there could be potential spasms happening there, which could be a source for pelvic pain. I don't know. I wish there was a more clear pathway. But I guess this is all I can do for now.

[RingofFire]

@Flowerteacher55Well, big news here today. I decided to get another hsv-2 test for a few reasons. If I'm going to be taking Vacyclovir for an extended period of time or I want to seek out alternative treatments, I want to be sure I actually have HSV-2.

Anyhow, I got retested, since Biotin was a concern with my original test results. I had the test done by the same lab and that test was unfortunately positive. My IgG level was 13.00 this time. My previous test in October of 2021 was 18.6. So it's down 5.6 points, but no one has been able to tell me what the difference is in how many points you have. The doctors say it's a pass/fail test, but then why is there a number associated with it at all? I don't understand that.

So, anyhow I guess that closes the book on whether or not I'm dealing with a false positive. 

Anyhow, the weird thing for me is that I've had multiple physicians tell me that my symptoms for the last 7 months are not related to HSV or any other sti. Apparently I'm a complete anomaly. I have no lesions down there, but when I drink multiple alcoholic beverages over a weekend, I get nerve pain in my inner thighs, pinching around my groin and occasionally pain in my penis. There's never a rash or anything else. Sometimes my entire body will itch the night after drinking.

Anyhow, I'm posting this mostly for people who are experiencing these symptoms and every doctors tells them that there's no chance it's from herpes, because it may very well be. 

HSV-2 is the only smoking gun in my case. I've been tested for every other sti and I have no health issues beyond this. 

What sucks is that I have these prodromal symptoms on a nearly weekly basis and I don't know if it's just me feeling it, or if I'm actually shedding the virus while this is happening. I really want to make sure that I don't spread it to anyone else.

The weird thing is that I've taken Vacyclovir and it doesn't do anything noticeable for me. I still feel that same pins and needles and pinching in my groin. I'm hoping it helps to block the virus, but there's really no way to find out, and that really sucks.

[Flowerteacher55]

Hello!

Thanks for the update! We appreciate it 🙂 

That is so interesting! I'm sorry the test came back positive, but it is good to have reassurance and clarify the positive answer!

In regards to the number, yes, they test positive or negative or equivocal, but yes... there must be something being measured in order to produce numbers that are then applied to the "positive, negative, equivocal" scale. I can do some research and check out what exactly it is measuring! That would tell us what exactly is decreasing that would result in the decrease in number you mentioned. 

The tingling after alcohol is an interesting symptom. Alcohol does impact the neurological symptoms, which HSV is linked to. So, maybe alcohol is a trigger for nerve pain? It is just unfortunate that the Valacyclovir is not providing relief. I recommend avoiding alcohol and maybe try another one of the two other antivirals (Acyclovir or Famcyclovir) and see if that helps.

Hang in there! Thank you again for sharing your updates with us. It definitely helps others with similar situations feel like they are not alone 🙂 

Sending blessings and prayers your way! 🙂 

grace

[Bloomer]

@RingofFire so sorry for your experience with doctors who are refusing to see any correlation between your nerve pain and HSV. This is a well known fact and every doctor who denies this is not very well informed. 

Please avoid alcohol since it can be a trigger for HSV and usually makes nerve pain worse.

If you were you I would try to find neurologist or infectious disease doctor who is up to date with informations about HSV infections. 

I rarely get outbreaks, my symptoms were atypical ( at least medical community says so) and thanks to this I was misdiagnosed for years and my HSV infection was left untreated. In 2015 I developed transverse myelitis which was caused by HSV which was proven by spinal tap. I am happy to be alive. 

Please don't stop looking for answers and be your own advocate when it comes to your health. Most doctors know nothing about HSV, even so called HSV specialist.

[RingofFire]

Thanks @Bloomer I was thinking my next step would be to see a neurologist or infectious disease doctor. I definitely want to get to the bottom of this. I'm still having intermittent symptoms by the week/day. I've been experimenting with different dosages of Valacylovir to see if it reduces symptoms, but its tough to tell. After a weekend of drinking, my symptoms are increased probably 10 fold. For a few days after I get nerve pain in my inner thighs/backs of legs, pinching groin pain and overall body itchiness. Never any visible signs though. 

I have a couple questions if you wouldn't mind answering them:

What where your symptoms and why were they atypical?

What treatments worked for you and are you still treating it?

[RingofFire]

@BloomerAlso, I had considered getting a swab done when I'm experiencing tingling, nerve pain or other symptoms to see if I'm actually shedding. I've been taking between 500 and 1000 mg/day of Valacyclovir and I'm just wondering if these are indications that I'm shedding or if the Anti-viral medicine is working. I'm dating someone new and we've used condoms every time and I take the meds religiously, but I don't want her to get it. 

Have you ever done a swab test to see if you are shedding?

What was the symptom that indicated you may have transverse myelitis?

Thank you for your help! This really sucks, but it helps to know others are experiencing the same thing.

[Bloomer]

@RingofFire for several years I was misdiagnosed with urinary tract infections. I had all classic symptoms of UTI's but my urinocultures always came back clear. It was in fact HSV infection which was causing me all those symptoms but doctors were obviously clueless and didn't recognize it could be herpes. At the same time I started having nerve pain in my legs and pelvic area and that lasted for several years.

When it comes to transverse myelitis, it was in 2015 and at first I started having pin and needles sensation in my legs, it was horrible. Like ants are crawling on my skin. I went to doctor but he dismissed me claiming that I probably have anxiety. In the next few days I developed numbness in my saddle area and urinary retention and started having weakness in my legs and hands. Went to ER, ended up in hospital and was diagnosed with transverse myelitis caused by HSV. I am immunocompetent individual and doctors told me it can happen even to those immunocompetent. 

Acyclovir does nothing for me so I stoped using it. I am currently pregnant so I can't take any meds but soon as I give birth I will start taking gabapentin. I tried taking antidepressants few years ago but they caused me urinary retention. I already have urinary retention thanks to HSV and with antidepressants it was even worse so I had to stop taking those meds unfortunately. After childbirth I am considering to try ozone therapy, it is pricey but apparently efficient in treating viral infections and nerve pain. 

I don't know do you have access to pelvic floor therapist? Herpes virus causes nerve irritation then irritated nerves cause pelvic muscles spasm and dysfunction. It would be good for you to be checked for pelvic floor dysfunction.

During the last several years I was in contact with lot and I mean a lot of people who are HSV positive and have some sort of neurological symptoms and complications. Those people were healthy individuals before contracting HSV and started having neurological complications after infection. I don't understand why doctors refuse to see that. HSV induced neuralgia is well documented and it is a FACT. 

Don't be disheartened by my experience, it doesn't mean you will have the same. I know several people who developed nerve pain after infection and then after 2 or 3 years their nerve pain went. Try eating healthy, take immune and nerve health support supplements and avoid usual HSV triggers.