Hi, I have horrible lower back pain and hip pain because of genital HSV 1. Many people have similar symptoms and are often misdiagnosed as back and sciatica issue. My pain is almost constant - sometimes better, sometimes worse. I also have almost constant constipation. It is because hsv attacks nerves, so the general idea it presents itself just with lesions is wrong. Unfortunately, medical community is very ignorant and uneducated in this matter...
http://jamanetwork.com/journals/jamaneurology/fullarticle/795486
Print it for your doctor.
I have fevers quite often, so I believe the virus travel through the spine to brain.
I wish medical community learn finally that hsv is not just innocent virus and there would be big pressure on vaccine development. The problem is, there is such stigma, so people suffer in silence or their symptoms are simply misdiagnosed.
I really recommend you to see honeycomb herpes support site. I check it daily because I am hoping for research which can help end our suffering. The website is good overall, very nice and helpful people, but my favorite section is research. There'll be something coming in few years, as I hope. I wish it's earlier as there was no improvement in treatment in 20y!
I have similar symptoms and I have HSV2. I had sciatica before, so this is just another nuisance.
I believe the type of Hsv doesn't matter as much as you body reaction. Some people are fine, some suffer a lot.
I believe the type of HSV doesn't really matter. What matters is how your body reacts to the virus. I had sciatica before, so I know the difference. I wish there's a cure one day for us.
I completely understand. I know that everything effects people differently and also every has different pain tolerance.
Started my HSV2 nightmare in January 2017. Digestive system became worse and worse with excessive gastric acid production. Constipation slowly became worse and worse. Had an endoscopy and shows chronic gastritis (damage to stomach lining). Seems the damage to nerves causes problems with small and large intestine motility. Hoping to hear more fromantic you in regards to motility GI doctors advice. Has anyone had these issues and improved. The constipation is debilitating, and so is the malnutrition and weight loss this is causing. I think it is much worse when immune system is compromised like mine is.
Did the constipation go away in the end? Am having identical trouble
I'm still dealing with my constipation. The impact HSV2 has on me is severe. I'm having issues with blood flow and veins showing now as well. I'm wondering if a level of anxiety and stress is exacerbating it all as well. I'm taking 500mg of Valtrex daily for suppression of the herpes and 20mg of Lexapro for the general anxiety. Doea anyone have any other suggestions for action(s) to take?
Hello. I've read all of your comments and find that we have similar suspicions and experiences, although I've been experiencing them on a much more long term level. 15 years ago I began dating my now husband. I got HSV around the same time I started taking birth control. I also started experiencing severe stomach pain and constipation. I didn't think about it being connected to the HSV; I assumed it was the birth control. I began seeing doctors about it, claiming it must have been the birth control. Doctors said they didn't think that was it, but I knew that was when my body started to change.
Fast forward 15 years and many GI doctors, colonoscopies, food allergy tests, pelvic floor dysfunction, and physical therapy attempts later, I saw a GI motility specialist. It took forever to get an appointment with her but I did get to see her in June. The appointment was discouragingly brief, but she ordered the same test you mentioned where I swallowed the pills and had an Xray. That was 3 weeks ago. The Xray technician said all 120 markers were still in my colon, which means my colon isn't working correctly. The motility doctor has yet to call me about the results and we don't have another appointment until October. The slow response time has made me delve more into my own research which had led me to find research connecting HSV and colonic inertia/ severe constipation. It suddenly occurred to me that it was likely not the birth control, but the HSV!
At any rate, I don't have any answers but I'm going to discuss it with the motility doctor when I get to speak with her. It's so frustrating but I'm encouraged to know I'm not alone or crazy!
How did you find a motility specialist? I'm in the Atlanta area and this seems to be handled by a GI doctor. But I need one that will believe I have this problem as they don't seem to believe patients. Also, what are you doing to help with the constipation? Thank you!
Hi all thought I'd my own story to this!
Contracted the virus back in September last year. I have constipation on and off and have no idea if this is related. So I was constipated for two days and now seem to get back to normal. I was constipated last in November for a day and have had no issues until now.
I don't know if it is a nerve thing or just general constipation.
Also read that's it very common for people with brand new herpes to have problems pooping and weeing as the nerves are affected, and it takes the body time to adjust.
Hope this is of some help!
I had my first outbreak about two weeks ago and have been experiencing constipation and weird nerve sensations on my back upper things, right below my butt. I am so scared reading all these posts about not really ever returning to normal pooping...I used to be fine, one to two times a day no problem. I am devastated. I really hope it starts to get better soon. I don't know if I should go to the doctor or not.
Anyways, I immediately looked up natural remedies to herpes and found that song doses of olive leaf can cure herpes. I know that is hard to believe, whether or not it is true though, it is supposed to help as well as help with constipation. I have been taking it for a week now and haven't seen any improvement though. Has anybody else tried olive leaf? If so, have you seen any improvement? I can't deal with this forever!
I'd like to hear the result of your test, as I have this same problem, and I'd like to know if the nerves can heal (if they are in fact dead). I've had chronic constipation for 1 month despite a lifetime of perfect bowel movements, and it all started with a herpes outbreak. Been married for 6 years and never new I had it...
Triton, you are not alone. I've had pretty much perfect bowel movements and a very healthy diet all my life. Didn't know I had herpes either, after 6 years of marriage to someone who has no signs of it. Then the constipation started, then painful urination & a hemorrhoid. The doctor didn't understand all my symptoms, but did diagnose a herpes outbreak. My body can't handle constipation. I have reason to believe I've got fissures or a small fistula affecting the vaginal wall. Pain. I believe in natural healing, so I'm getting some relief by following the advice on "ListenToYourGut.com." Their Aloe Vera calms my painful colon, and using Marshmallow powder with water makes a healing drink. I'm using their Oregano oil. It prevents the infection I had in the vagina from the fistula. The homemade suppositories with coconut butter and "fissure heal" or oregano oil, or potassium iodide seem to have a healing effect. Haven't tried their "healing enema" yet. Unfortunately the "ListenToYourGut" website doesn't specifically mention how to kill the herpes virus or deal with dead nerves in the colon. I know Oregano Oil and Grapefruit are supposed to help kill herpes. Oh, I'm also starting the "Elemental Diet" as a last resort, so I will have soft bowel movements and have a chance to heal. But, will the constipation come back??? I'd like to hear more about what is helping people here. Thanks for sharing!
JuliaAnna,
I had my initial outbreak in Jan 2017, constipation started 4-5 afterwards. I went to Mayo Clinic in MN, for a full battery of tests in their Motility Disorder Clinic. I had anorectal manometry, motility tests with radioactive tracers (technetium and indium pellets), and MRI defecography. Unfortunately, there is no direct test for nerve damage.
The GI doctors I saw read the Yale study journal paper and believe herpes is responsible for my constipation. In fact, they believe viruses are at the root of many chronic GI problems, even IBS. But no matter what the virus, and there’s no telling which virus is the culprit, people have recovered sometimes within months, sometimes years. There simply hasn’t been any research that pays attention to this problem to know for sure if it ever goes away. Based on this thread alone, the spectrum ranges from people getting it prior to an outbreak, during an outbreak and since the initial outbreak. Obviously the response is very individual. One woman on this thread has had it for 15 years so we know it can linger a long time.
This is is what came out of the Mayo visit. Keep in mind this is specific for me.
1) take Miralax once in the morning. miralax is an osmotic laxative. Do not rely on saline laxatives. Even with Miralax, I am constantly dehydrated (my skin is flaky and sometimes I get dizzy) in spite of drinking whenever I can. If Miralax stops working or if I still have problems with a bowel movement, I can back it up with magnesium citrate. This is the stuff you buy in a small bottle. It’s like preparing for a colonoscopy. It will purge you. So far, I use the MC maybe 2-3 times a month. All laxatives are not good when you take it every day but some people have to so it’s a delicate balance of having bowel movements and ensuring you don’t develop an electrolyte imbalance/dehydrated. I have lost 16 lbs since my first outbreak. Daily laxatives do not allow the full nutritional value of food to get absorbed.
2) physical therapy with biofeedback. My test results showed that Motility in my small intestine is abnormally slow and borderline slow in the large intestine (colon). In addition, the narrow stools indicate sphincter contraction is abnormal and pelvic floor muscles are also contracted too much, which affects expulsion of feces. So this virus got me in the gut, pelvic floor and sphincter. Physical therapy of sphincter and pelvic floor included massage with trigger point and myofacial release. The biofeedback part involves inserting a probe in the rectum and measuring electrical activity of the muscles. These measurements tell you how much you are “over contacting” the muscles. With specific exercises and proper abdominal breathingyou can reduce the electrical activity. For me, my problem is one of relaxing those muscles. One exercise is to squeeze the kegals quickly and then relax slowly. You are not trying to strengthen the muscle, that will worsen the problem, you want the emphasis on the relaxation part. Try it, you might realize that relaxation is hard to feel and do. I am still in therapy, going on 3 months now. It helps in many ways but it does NOT do anything to change your condition, it helps you manage.
3) Use a squatty potty or step stool when you have a bowel movement. I use a step stool that is a little taller than the squatty potty. Lean forward during bowel movement and make sure your back is straight. This helps propulsion.
4) Do not strain. I developed a rectocile and cystocele because of this. It was detected at Mayo Fortunately it is not prolapsed but it does not go away.
Sorry for for the long winded response, but wanted to get all this info out there.
As Triton said, train your body and take care of it. I have accepted the possibility that I may have to live the rest of my life this way. I don’t anticipate an end and I have learned to accept what I cannot change.
JuliaAnna,
I forgot one more thing that the GI specialists recommended. Probiotics. They prefer Align.
Nitelite007
Me
Omg YES ! I had a hunch because I never get constipated but sometimes I don’t drink enough water but lately I’ve been on top of it and was eating lots of greens so had fiber and all of a sudden at the end of a particularly viscous break out that lasted a month , omg the worse one I had ever gotten I had constipation .i thought to myself this has to be those damn parasites . So I looked it up here and I can’t believe it . I say yes for sure it’s the virus . Its time to do a cleanse ! I am determined to clean up my body and hopefully get rid of this thing ! But yes I believe this virus is a viscous little thing I am determined to beat it !