Stomach ache but only at night | nocturnal abdominal pain | and what I did about It.

Stomach Ache But Only at Night | Nocturnal Abdominal Pain | And What I Did About It.

If you have found this page, chances are you too suffer a mysterious abdominal pain but only at night.  I suffered this for over 10 years and eventually worked out a cure.  I cannot offer that this will help you at all, but I write this in case it helps at least one other person.

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The chances are you are reading this in the middle of the night as you continue to search for help in desperation. I’m hoping my story might offer some hope and help.

The discomfort would wake me up, a broadly diffuse discomfort, not excruciating, but enough to wake me up and then prevent going back to sleep again.  The main focus of the pain was the left lower abdomen, 2 inches below my belly button and offset to the left.

You know the story already. Persistent visits to the GP, but only to be dismissed as irritable bowel syndrome (IBS), all diagnostic investigations coming back normal, multiple medications tried without effect.  Permanent fatigue from insomnia as part of the package and then the raft of secondary problems such as aches and pains, issues with work, overall unreliability, disbelief from everyone else and on and on.

Background and initial onset of night-time abdominal pain

I was a nurse and at the time I was working as an occupational health advisor, now working as a therapist in mental health.  One night, out of the blue, at around 1-2 am, I awoke with an abdominal discomfort just below my right ribs, over my liver area.

Rather concerned it was my liver (or gall bladder), I booked an appointment and was referred to hospital for investigations.

  • abdominal ultrasound – normal result
  • blood tests – normal result
  • colonoscopy – normal result
  • gastroscopy with biopsy – normal result
  • stool samples – tested for blood, parasites, tapeworm, virology, bacteriology – all normal
  • tests for helicobacter pylori – negative

After a period of a few months, this nocturnal pain subsided and my life went back to normal.

Progression of the symptoms to diffuse abdominal pain at night

About 2-3 years later, symptoms gradually reappeared with a difference. I’d be waking up in the middle of the night, with mild lower gut pain, but if I moved about and then managed to fart, I’d be able to go back to sleep again.  These periods of discomfort would last a month or so and then vanish for a period of time before starting up again.

Over the following ten years the frequency of episodes increased, the duration of the episodes increased, and the intensity of the pain increased.  This eventually got to the point that normal life was almost impossible owing to the adjustments I had to make to my sleep-waking cycle, the consequences of insomnia and fatigue and all the secondary problems that arise from that.

Luckily I am self-employed. I know that if I were in fulltime employment, I’d not be able to maintain that job and would be faced with the situation of being the guy who looks very well, but claims to be ill and unable to work and facing much incomprehension or disbelief from employers, doctors, relatives, and friends. I can imagine such a situation would only compound the problem out from being a simple medical difficulty and into a psycho-social nightmare.

If you don’t look unwell, people assume you aren’t unwell. As a result, despite explaining to people time and time again the problem, as time passes they forget and assume you are well.  Thus every time you tell them you are visibly ill, it surprises them and you have to explain it to them all over again.  And again, and again. Every. Fucking. Time.

But they never actually listen. It just washes over them, like every time before.

Then there is the other category of person who, knowing little of the reality of your situation, decide that they know exactly what you need to be cured and then won’t go away as they take you on as their pet-project.

Hot and Bothered?

One thing I did notice was that around this time I’d sometimes wake up in pain and very hot.  The hotness wasn’t due to the central heating or heavy bedding. If I uncovered myself and allowed my body temperature to drop (would take about an hour) I would be able to go back to sleep again.

Investigations and attempted treatments

It soon became clear that my GP practice had long dismissed me as being some kind of crank.  I had been offered lots of dietary advice and medication, none of which helped.  My given diagnosis was IBS and I know only too well that once such a diagnosis is made, it is almost impossible to get doctors to move beyond it.  In medical parlance, this common effect is known as “labeling.”

So I began my own research.  I am sure you know this only too well from your own investigations.  This is what I tried:

  • Was it the water?  I recognised that the symptoms had started shortly after moving house to a new area.  As a hobby, I breed fish and am well versed in water qualities, electrolytes, nitrites/nitrates and so forth. I was also aware that having moved house there were certain fish breeds I could no longer keep in untreated tap water owing to the GH of the water.  I requested a tap water analysis (you can get this from the local water board – it’s common for fish breeders to do this) and stopped drinking water from the tap.  Initially, I switched to filtered water, and then when there was no improvement from that, I switched to drinking only bottled water.  Did this for over a month without benefit.
  • I went up to a clinic in Harley Street for skin patch allergy testing. I didn’t think this would show up anything, and despite being tested against a wide range of common allergens, nothing showed up.
  • I spent a small fortune on a private consultation with a leading gastroenterologist and had a colonoscopy, biopsies, etc.  Nothing negative showed up.
  • I saw a chiropractor (getting desperate at this point) and whilst I walked away straighter and feeling pretty good having been thoroughly crunched and cracked (this alone made it worthwhile and I went back for more) there was no improvement in the abdominal symptoms.
  • FODMAP – I followed the FODMAP diet to the letter for months.  No improvement.
  • High fibre diet.  I began eating bran daily and a high fibre diet generally.  I persisted with it but whilst I pooped a lot more, the symptoms were made worse than ever.
  • Given the problems with high fibre, I switched to a meat-only diet. No improvement to symptoms.
  • Lots of pro-biotics.  Everything from the aerobic probiotics (milk-based probiotics such as Yakult) and anaerobic probiotics (Kombucha, Saurkraut, Kimchi etc) and whilst this did seem to improve overall health, they tended to significantly exacerbate the symptoms.

Medications 

I tried slow-release peppermint (“Colpermin”), Buscopan, fluoxetine (“Prozac”), low dose tricyclics (amitriptyline), omeprazole, ranitidine, every new age and herbal digestive preparation known to man.  Nothing helped.

Other Symptoms

During these years, four other symptoms emerged, but both were repeatedly dismissed by doctors as either secondary or irrelevant.

My tongue was permanently coated in thick whiteish goo.  Daily scraping with a tongue scraper, flossing, and meticulous brushing did nothing to reduce this.  Each and every morning, my tongue was again thoroughly coated.

A lot of the time, my breath could peel paint.  It was clear that this was emanating from my stomach rather than from my mouth.

A strange skin plague developed on my right hand.  No matter who I showed this to, everyone told me the same thing – I must be rubbing my hand on surfaces and not realise it, possibly as I sleep. The same patch appeared on my right big toe, I was told this is from shoes rubbing.  I know only too well, this is not the case.

Lichen simplex chronicus (“neurodermatitis). Nearly always associated with rubbing, but is also associated with chronic herpes infection, but you have to dig deep into the medical literature to find cases of this. Not quite the same condition, but one such write up is given here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3604873/

The other is that I developed herpes lesions on my lower back.  These seem to happen after each episode of abdominal pain. Doctors told me this could not be the cause of the symptoms, after all, I had IBS, and that I needed to relax more because stress is a known trigger of herpes outbreaks.

I became increasingly convinced there was a correlation between herpes and the nocturnal abdominal pain, which by now was every night.

The other thing was constipation.  Most of the time, the stool was normal, but when I “pushed”, nothing happened. I’d get heavily backed up and resort to laxatives (the only one that worked was Dulcolax, 4mg) and I’d have to take this 3-4 times a week.  As you will probably know, this itself then gives rise to all sorts of additional issues.

I reported this symptom to my doctor but of course, was simply dismissed and instead offered more anti-depressants and a referral to the mental health counsellor to discuss my issues. This is a common thing that is a medical practice with the legions malingerers and sufferers of health anxiety who appear in the GP surgeries every week. It’s known as “referring on.”

And then there’s this…

The other thing that began to happen, and more so in later years after I began treatment for malignant hypertension was that the diuretics I was taking meant I’d have to get up in the night to pee, something I’d never had to do prior to the blood pressure treatment.  The abdominal pain would start only after I peed (about 2-5 minutes afterward).

This is significant.  Read on.

Herpes and finally hope…

The problem here is that herpes is almost always associated with cold sores to the face or sexually transmitted genital herpes. It seems that few people realise that it can actually have other sites of infection.

There are three type of herpes – herpes simplex 1 & 2, and herpes zoster. Whilst there are biological differences between these viruses, diagnosis is most commonly differentiated via the site of infection.  i.e. infection to the mouth is called herpes simplex 1, infection to the genital is herpes simplex 2, and infection elsewhere is herpes zoster.  But the reality is, whilst the generalisation is generally true, it simply isn’t that simple.

I had to deep dive into the medical literature to find any supporting evidence of this notion: The herpes infection is affecting the nerves to the transverse colon, causing initially a temporary neuropathy, and can cause a more permanent neuropathy.

In old parlance, it causes spasticity of the colon by semi-paralysing it.

Here is what else I learned which came as a bit of a surprise – herpes lesions can appear on the inside of the colon, not just to the skin. And if you want a real horror show, consider herpes infection to the oesophagus: https://en.wikipedia.org/wiki/Herpes_esophagitis

At this point my symptoms were constant: I had a stomach ache every night, was permanently constipated, had two skin plaques and permanently had small herpes outbreaks to my lower back.

Some of these outbreaks were very small indeed, some didn’t ever break through to the surface but instead remained a small hard pimple under the skin.

Some of the herpes blisters are so small that they can be very easily overlooked and dismissed as just a small spot.

I began anti-viral treatment with acyclovir (800mg x4 times a day for 5 days) bought via online pharmacies (I have long since learned to stop bothering my doctor) and found that this brought rapid relief and a complete amelioration of the symptoms within 24 hours.

My tongue would clear, my breath was without malice and if I was herpes free for more than a month at a time, the skin plaques began to fade.

The problem is, despite having had an impressive effect, 90% of the time within days of cessation of anti-viral treatment, the abdominal pain at night would start again and within a day or two after symptoms starting up again, a small herpes outbreak would appear.

The acyclovir was not without side effects, mostly headache, which did not occur at lower doses. But lower doses were not so effective at eliminating the herpes outbreaks, especially when they hadn’t broken through to the surface of the skin.

I continued with intermittent herpes treatment for about a year or two, but as time went on, whilst the herpes outbreaks were increasingly managed, the abdominal pain symptoms persisted.

….dashing of hope and onset of peripheral neuropathy

What developed next was permanency to the nocturnal abdominal pain. Further deep dives into the medical literature revealed the following: herpes infection can cause a temporary or permanent neuropathy to a portion of the bowel.


Abdominal distention and constipation followed by herpes zoster infection https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3903839/

Herpes Simplex Proctitis Mimicking Inflammatory Bowel Disease in a Teenaged Male https://www.hindawi.com/journals/cripe/2017/3547230/

Acute constipation due to abdominal herpes zoster: an unusual association http://www.annalsgastro.gr/index.php/annalsgastro/article/view/1215/960

HSV1/2 Genital Infection in Mice Cause Reversible Delayed Gastrointestinal Transit: A Model for Enteric Myopathy https://www.frontiersin.org/articles/10.3389/fmed.2018.00176/full


This means that the movement of “matter” through the canal of the bowel is impaired, and gas can pool.  Specifically here:

With abdominal gas collecting in these areas, increased pressure is exerted as the bowel is dilated, causing pain.

I’m purely guessing here, but based on what I understand of the medical literature on the matter, the choice of sites will depend on which of the bowel is affected by herpes.

I recognised that the pain is mostly focussed on the left lower abdominal (site 3 – beginning of the “sigmoid colon”).

A full bladder applies a counterpressure to the pressure in the sigmoid colon, hence why there is only onset of pain once the bladder is emptied.

Sites 1 (“the right hepatic flexure”) and 2 (“the left colic/splenic flexure”) are at the upper abdomen, and my very first onset of pain was focussed on site 1.  I do not recall if I had any herpes signs at that time.

The Mission: restore bowel function, suppress all further herpes outbreaks

At the time of writing (February 2020) it is still early days, but I am pleased to report things are going very well and I am feeling healthier than I have done in over 10 years.

So, the plan: stop all further herpes outbreaks, increase motility of the bowel, reverse the neuropathy.

Increase gut motility.

I’ll spare you all the juggling about that I did and get straight to the solution I implemented. First off, increase motility:

  1. Ingest psyllium husk and a glass of water every time I eat something.  To save on costs and to make it convenient to carry, I bought a cheap capsule filler and a big bag of psyllium husk from eBay.  I use 000 size capsules (the largest) and take 4 capsules with every meal along with a glass of water.
  2. Ingest x2 capsules of slippery elm bark with every meal.  As with psyllium, I buy the powder off eBay, and fill my own capsules.
  3. One capsule (again, self filled) of Triphala powder (also from eBay).
  4. I take x2 Sennakot tablets every morning (first thing, empty stomach), and one last thing at night. I found that senna does not work for me as a laxative, but it is well proven to increase gut motility and reduce inflammation. Again, good old eBay, I buy Sennakot in bulk as it is a lot cheaper. This has an additional advantage, as not all senna is the same, there are different species of the senna plant, each with different potency. So adjusting dose accordingly is easy when you have a large batch that is all the same. https://www.researchgate.net/publication/50834010_Anti-inflammatory_laxative_and_intestinal_motility_effects_of_Senna_macranthera_leaves
  5. If I ever eat snacks, no matter what, I will take a psyllium husk capsule and some water.

Note: owing to the fact that psyllium swells and is a soluble fibre, I always drink water with it. I avoid taking on other medications at that time, as the psyllium is known to also absorb that too and thus reduce the bioavailability of the medication.

I used cellulose 000 size capsules and a cheap filler machine which costs around £10 (check amazon, eBay – but be sure they are being posted locally, otherwise you might wait for weeks for it to arrive from China where they are commonly sold from.)
In this picture, I am filling them with slippery elm bark powder bought from a herbal supplier on eBay.
It takes just minutes to fill 100 capsules. My first time doing this I managed to get it the wrong way round and spread it everywhere as I lifted it up and everything fell apart. It’s easy when you know how though. Instruction videos on YouTube.
NOTE: When buying a capsule filler be sure to get the one that matches the size of the capsules you intend to use!
x 100 psyllium husk, and x100 slippery elm bark. Total time – 10 minutes.


Reduce gas in the bowel

When I experimented with the FODMAP diet previously, it didn’t really help, but it did noticeably reduce the amount of farting. So I now avoid my main triggers: peas, apples, garlic, anything sugary, milk, cabbage.

Virus suppression.

I began a herpes suppression regime.  This is 400mg of acyclovir twice a day. This has reduced the outbreaks significantly, but I do still occasionally get an outbreak, in which case I begin a 5-day treatment of 800mg 4 times a day for 5 days.

If the doctor was sympathetic, I should be able to get a prescription for this. I have long since abandoned the notion of getting anything worthwhile from doctors regarding this issue, so I order my medication via a UK based online pharmacy that specialises in such matters. It works out at about £80-£90 for 2-3 months medication. The length of time depends on whether I use extra tablets to treat an outbreak.

I also investigated a more systemic approach and found some interesting data suggesting that persistent herpes outbreaks are [anecdotally] associated with low testosterone. https://www.apoe4.info/forums/viewtopic.php?t=4686

I decided to test this out and looked into methods for raising testosterone.  As someone in his late 40s, I had recognised a few of the changes associated with age-related reduced testosterone, but had always attributed it to the persistent fatigue caused by insomnia: less energy, lower sex drive, no morning boners, lower motivation, lower moods and so on.

All of which can be associated with depression and/or insomnia.

So, I began to take the following cocktail:

  • horny goat weed, 500mg of 5:1 extract, once a day.
  • boron glycinate, 10mg, once a day.
  • tribulus terrestris 10,000mg of 10:1 extract, once a day.
  • D-aspartic acid, 1000mg, once a day.
  • MACA, 1600mg, once a day.
  • Magnesium (1000mg) with zinc (15mg) once a day
  • Vitamin D, 10,000iu, once a week.

I took this for a week before I noticed anything happen. I broke out in acne and my skin became really greasy. I was hopeful that something was actually happening. And then at 10 days, I awoke with a boner. Something I’d actually forgotten about and something that is a well-known medical test for overall health in younger men (i.e. the lack of morning boner is a bad sign).

From that day I have felt completely different, my motivation is higher than it had been in years and my energy levels are back to how they used to be. All this alone has shown me just how unwell and debilitated I had been for so long. When it’s such a slow onset, I guess we just don’t notice it and adapt to it.

I’ve continued on my herbal testosterone raising cocktail and all the benefits have remained and the skin has cleared (that took about 2-3 months).  Every four weeks, I stop taking these supplements for a week (so, four weeks on, one week off cycle).

Resolve the neuropathy

At this stage, I have managed no improvement in the neuropathy. What I know from my background in neurosurgery and neurology is that it is unwise to lose hope in the first 12-18 months of recovery, as neurological recovery does happen, and can take a long time.

So, now I have energy back I am able to exercise. I’m that guy who hates exercise but isn’t lazy. So I never use the escalators or lifts etc when I don’t have to. I walk the dogs, do a little strength training (too boring to persist too much with), some yoga.

Based on standard medical practice, I take a general b-vitamin supplement to add to my cocktail, and cyanocobalamin (vitamin B12) 500ug twice a day. I know it to be foolish to do this long term.


Also see:

Probiotics and Mental Health: https://23nlpeople.com/probiotics/
FODMAPs and IBS: https://23nlpeople.com/fodmaps-and-ibs/
The Human Gut Biome and Mental Health: https://23nlpeople.com/the-human-gut-biome-and-mental-health/

(Links open in new window)


First Conclusion (Feb 2020)

It’s still early days, and I’ll update here as time goes on. But today I sit here having slept properly and had another pain free night. I poop normally. The joy of this last small detail is ridiculous to me. Again, it is a reminder of just how bad things have been for so long.

The comments section on this page is open. Trolls will just be removed and blocked, I’ve no time or interest in that. Do please share your experience, any tips and tricks you have learned along the way.

Please don’t use the comments section to bash the medical profession or give endless examples of how crap they can be. I want to focus more on what we can do about this problem rather than concentrate on the negative.

I look forward to hearing from you.



Want more info?

Here is an exceptionally well written all-inclusive guide to chronic constipation (IBSc) on Reddit which is worth reading: https://www.reddit.com/r/ibs/comments/bujy3a/i_made_a_comprehensive_guide_for_those_of_you/

(link opens in new window)


 

56 Comments

  • Is there a test that confirms a herpes zoster infection someone? Perhaps a PCR?

    • Yes there is, but you’d need a proper medical laboratory test for that to be done. I’m sure there will be testing kits on the internet, but don’t use those, get a proper medical test.

      • Hi there, I found this really interesting. I’m a 32 year old man and had ibs for 8/9 years now. I had campylobacter in November whilst doing the low fodmap diet to try and improve everything including sleeping. Since being in hospital, everything makes me so sensitive to flare ups and wipes me out for days. I’ve had a colonoscopy and nothing. Still struggling to sleep well 6 months on and I’ve basically gone it alone on the diet as doctors aren’t helping me. I’m now gluten free, no onion or garlic and vegetarian. Not sure if diet could be playing in a part in my stomach issues when I go to bed but doctors think it’s just after effects of campylobacter? Any thoughts or experience out there on why I still have stomach issues when I try to sleep? Thanks so much and hope you’re all keeping well. Mike x

        • I’m no expert at all here, but i wonder if a high probiotic diet may help, or even a faecal transplant (google it if you are unfamiliar, probably best not to do this whilst eating)
          Also, ask here: https://www.reddit.com/r/Microbiome/

  • Wondering if, in early stages, you may have had issues with your illeocecal valve. Also surprised you did not incorporate AloeVera Juice into your regiment .

    • Did try aloe vera….no benefit at all.

  • I’m very interested in this information. I am having occasional (once a week or so) bouts of burning intestinal pain generalized in the center of the belly. They start an average of 9 hours since I last ate, usually between 2:30 am to 4:00 am with a burning in the upper abdomen that increases in intensity and area until it involves the entire abdomen in like a square shape. It can be so intense that my spine hurts intensely. I also feel bloated and have a full feeling in the back of my throat and sometimes a little nausea. It always lasts two hours and then subsides enough so I can sleep, but I may have abdominal soreness for a day or two in the large intestine until the material clears my body. I haven’t been able to connect any pattern with eating or food other than the time since I last ate.

    I have Lichen Planus, an autoimmune condition that causes swelling and soreness in my mouth, and persistent itchy rashes on my lower back up to my shoulders and even the scalp or occasional lesions on the arms or legs. This is diagnosed and I use cortico-steroid ointments and mouthwash for it. The LP is triggered by stress, lack of sleep and any challenge to my immune system. I have been able to keep the rash mostly controlled by taking a turmeric and black pepper extract supplement. The skin lesions are extremely itchy red bumps, that don’t crust or scab. I don’t think they are herpes.

    I would be interested to hear other accounts from people suffering from this. This is the first thing I have found that really describes what I am going through. I am not diagnosed with IBS, but do have acid reflux. I have not been to a DR about the night time pain yet.

    I am really grateful to benefit from your experimentation and research. I will look at implementing at least some of what has worked for you.

    • Good luck Marilu, I hope you find a resolution soon!

      • Cleanse to Heal has been an enlightening read and pretty much on point with this article
        I recommend you pick it up or listen on audio💫❤️

    • I also have pain at nights on my lower left side of abdomen, and when I take a shit it goes away and returns soon.

    • Marilu, your symptoms sound exactly like the symptoms I had. Turned out it was a parasite. You can get a test for this through your gp

      • Can I ask what kind of parasite??
        I’m having this too and want to research

      • Did you have burning pain in you spine and ataxia? Tinnitus?

    • Hi everyone
      I also have been in this cycle of being unheard and desperate for almost 4 years now
      CLEANSE TO HEAL has been an enlightening read and pretty much on point with this article.
      In a nutshell, the author claims medical doctors are unaware and jaded…the cause of most of our human illness especially the symptoms all of us are experiencing with no relief, are a result of any of the 60+ Epstein Barr Viruses(which includes herpes)in us feeding off our diet. Cleaning the liver & starving the EBV by eating foods that don’t feed the viral debris, & particular supplementation for all kinds of illness are included in the book.
      I recommend you pick it up or listen on audio💫❤️

  • I’ve had issues for over 3 weeks now that had started out as excruciating heartburn. I had taken prilosec for about 4 days but ended up with mild-severe stomach cramps and *very* bloody stools(always liquid). At the time I had fully changed my diet to a more acid friendly/GERD diet consisting of plain chicken/turkey, whole grain breadsticks cereals, low fat dairy and skim milk, almond butter, crackers and pretzels, only drinking water, etc. I was totally on my own figuring out the best things to eat simply by doing research; since due to covid and being at the stage of switching from my pediatrician to a doctor(I’m 19 F) it feels impossible. Anyways, after I had stopped the use of Prilosec my symptoms had improved. Sticking to the same diet, I was able to eat with no issue and even branched out to very small portions of things that are known causes of acid reflux such as: fried food, red meats, and some salad dressings. I made sure to keep my portions small enough to avoid complications focused more on my acid friendly diet. My stomach seemed very happy and my bowel movements were normal. Unfortunately this luxury only lasted about a week. Once I got back to a high point and feeling much better, to my luck another problem arose. This time, however, did not feel like an acid issue. No heartburn, no signs of acid reflux, just extremely bad abdominal cramps all over. The majority of my pain persisted on my entire left side, but tended to bounce all over the place-from what seemed to be just my stomach, to my right side, back to my left, and the most excruciating times being every spot. These symptoms would ALWAYS spike to the highest point waking me up in the middle of the night. My bowel movements were also restricted to that exact time and usually happened shortly after waking up with the pains, but persisted even after going to the bathroom. My bathrooms trips were also never fun from that point on. Every night consistent liquid stools, accompanied by pains during the whole process. It would take 2-4 hours for my symptoms to calm down enough for me to go back to sleep. After the course of 5 days of dealing with this, I had completely lost my appetite, as well as not even being able to eat anything at all without upsetting my system. I ended up going to the ER since I couldn’t wait any longer for a doctor especially without the ability to eat and with how bad these symptoms were getting. I had also went from 105 lbs to 92 lbs very quickly(I’m 4’ 11” so this weight range is still pretty normal so no worries of serious weight complications, but still concerning). They ran blood tests(but didn’t even tell me what for…), preformed an ultra sound and a CTscan, and also did a rectal exam. The blood tests and scans all came back clean, as well as no UTI from my urine sample(which I figured would be clean), but they had discharged me before getting the results of my rectal exam. They also informed me that my symptoms do not seem like IBS, so no suspicion of that. I was there from 10pm-8am, and had gotten treated for gastritis, which I’m guessing is the one thing they found/figured to be an issue. I definitely didn’t doubt that my stomach/stomach lining was inflamed just due to the food intolerance/acid issues I had faced at the start of all this, and since that treatment I’ve been able to eat food with no immediate pains or cramps. However, my ever so persistent symptoms of the night are still occurring. I’m at a loss on what to do about this and I’m still unable to get a doctor even remotely soon. I have no known medical history for problems like this, so this whole occurance is a first for me so I wouldn’t even know where to begin on what this could possibly be. I am self employed at the moment as well, but these issues are leaving me exhausted every day.

    • I wish you all the best Kate and hope you find a resolution soon

    • Question, your symptoms sound identical to what I’ve had.
      However, I’m a woman and am wondering about the testosterone?
      I’m 57 now and have gone through menopause, and the stomach aches have really taken over.
      Would getting my hormones checked help?

      • My short answer is: sorry, I’ve no idea.
        Longer answer: the whole testosterone thing giving a decrease in susceptibility to herpes outbreaks is anecdotal at best. Female hormones and endocrinology is not an area I have any experience in at all. You might be better off asking on the Reddit forums to see what guidance is given there. Good luck and I hope you find an answer to your situation soon!

  • I have the exact same symptoms for about a year now and have been through a lot of different examinations but all of them showed nothing. Especially the part about have abdominal pain after getting up to pee at night seems weird and it seems like the doctors dont really believe me when i tell them about it. Did you figure out what was/is wrong and did it go away eventually?

    • I’m still following the treatment protocol outlined in the writing above, and all seems to be working fine. If i miss just one day, then I’m back in a whole world of hurt for a few days until things settle down again. The key is persistence and proactivity.

  • This is insane, I’ve been experiencing THIS exact things for about 2 years now. I am having the tiny out breaks on my neck like you mentioned and the plaque our breaks I have 3 spots about the size of dimes on my chest. I do have a diagnosis for HSV1 and have a prescription for acyclovir as needed for occasional break outs. I never would have guessed that this could be the cause of all my pain and linking to everything else I’ve noticed but didn’t contribute to my nightly excruciating abdominal pain… I just need to say thank you. I never would have figured it out.

    • Good luck, I hope things work out for you!

      • I’ve had very similar symptoms that you outlined in the writing. Being a woman I just assumed I was having issues with my uterus, possibly endometriosis etc.. I’ve done so many tests and everything is fine, I have noticed if I stay away from gluten and sugar and certain things that cause gas my pain goes away.. I was thinking possible nerve damage from surgeries and having kids… I have had those dry patches for as long as I can remember, my sure about the herpes spots as I have so many scars from acne as a teenager, and if I slip up and eat sugar I break out like crazy. I have been using herbal anti inflammatory and liver cleanses and hadn’t had a painful attack in months until I accidentally ate some maple syrup which caused me so much gas which triggered my painful night attacks.. anyways.. how would I bring this up to my doctor to get tested for herpes to see if this is my issue

        • Whilst I would hope a doctor would be sympathetic and understand the request, it isn’t guaranteed. Most tests for herpes are carried out by swabbing an infection site (i.e. open sore), but I understand a blood test is also possible. I don’t know how accurate this test is if there isn’t a current outbreak, I’m quite out of date regarding testing procedures. It might be worth asking on the herpes reddit forum: https://www.reddit.com/r/Herpes/

          If you arent already familiar with it, look up FODMAP: https://23nlpeople.com/fodmaps-and-ibs/

          Good luck!

  • I go running, 3km each morning. I find it keeps me regular. Something something serotonin.

  • Thank-you for putting this article and associated video on laxatives together. Really useful stuff! I had IBS symptoms (bloating and spasms) for years and tried various diets, (FODMAP, high fibre, low fibre, paleo) as well as various medications and supplements with little change. I had a gastroscopy about 5 years ago which ruled anything out and then early last year found a hard lump in my lower abdomen which led to a CT scan and biopsy revealing a very rare, slow growing cancer called Pseudomyxoma peritonei. Cue a massive 12 hour surgery to remove 2 litres of mucinous acites, ascending and transverse colon, gall bladder, spleen, stripping of the peritoneum and outside of the stomach and liver all topped off with an hour of hyperthermic intraperitoneal chemo and a month in hospital… I never really suffered from constipation with IBS before the operation but now do (I was warned this was a likely ongoing issue from the surgery) and what really interests me about this article you’ve written is the plaques you have on your toes which I have also developed in the last year. I’m barefoot most of the time and wear loose fitting shoes so I doubt it’s due to rubbing. I’m 43 and also have borderline low testosterone according to a blood test 18 months ago and experience similar symptoms to those you have mentioned. I wonder now if I also have a viral issue contributing to my constipation…

  • Hi!
    I am experiencing all of these exact symptoms.
    However, I am just curious as to where this herpes infection could have came from? Might be a dumb question haha. Like is it derived from a sexual aspect? Or can something in your body cause it?

    • Typically herpes is transmitted through close contact with an infected person who has open sores, or is within a few days of sores healing (people continue to shed the virus for some days after healing). This is either via sexual contact or oral contact (genital to genital, mouth to genital etc). Herpes zoster, which is more commonly associated with shingles arises from a previous infection of “chickenpox” where the virus lays dormant n the body. The misconception seems to be that herpes contracted sexually will only affect the genital, but actually, although this is most common, the infection can arise anywhere. Though the lower back/upper buttocks is the most common secondary site.

      As a nurse, I once saw a patient with a buttocks site infection, and he had no previous known history of infection anywhere else. Chances are, he’d had genital infection at some point in his past, but hadn’t recognised what it was at the time.

      Herpes can be contracted at birth if the mother is infected and has active genital sores, but this would probably be known to the individual, owing to how serious such a situation can be.

  • Great information. Many thanks!

  • Wow!Sounds like you have been through the mill! Hope you keep improving I have always had IBS so I read. No symptoms when asleep. After my coronary stents I changed my diet to most plant based, very little processed foods and mostly whole foods. I eat oatmeal everyday of the world. No trouble with IBS unless I eat poorly! Lots of fiber , for me, too!

    I have bad simplex 1 that doesn’t care for Sun. Acyclovir 2, twice in 24 and it goes and usually stays. My dr.suggested it!! Guess, I am more fortunate than I knew.
    A lot of what you described sounded like “inside out shingles, reactivated chicken pox” in the body. Any chance a shingles vaccine might help. Usually get it at 60, but, just wondering if it might be helpful for you now!

    • Thank you for all your hard work! My mom and I were just discussing the possibility of shingles and of course the doctor dismissed it. I have been suffering for weeks since my gallbladder surgery to help improve the situation but it didn’t help and now things seem worse. Night pain, constipation inability to poop or have a feeling to poop, heartburn and laxatives don’t seem to help. Of course I have ibs so the doctor doesn’t want to help past that. I’m feeling helpless. I’m a female so I wonder about the testosterone and estrogen balance but my obgyn won’t give me a hormone test to check levels. I’m going to try out your method and see how it goes. Thanks

  • I was so excited to see your post and thought I had the same symptoms until you described the pain after urination and the bumps. I do get cold sores in my nose and on my lips. I’ve had it since I was in 5th grade. But I don’t feel like it is exactly the same. But my abdominal pain at night started about 5 months ago and keeps me up. I wake up around 3:30 every night in a full sweat and my lower abdominal is aching. For me, if I go to the bathroom to urinate and sometimes fart, I feel better for a bit, cool down and then sometimes I can go back to sleep. It’s so frustrating. I go to bed early just so I can get a few hours before the pain hits. I may still see if I can get tested. Maybe the symptoms are not as prevalent for me. Based on what you said, I may also try the 2 Sennakot daily as I have always had an issue with constipation. I didn’t realize it was safe enough to take daily.

    Thank you for all this information. It was so helpful. Also to know I wasn’t going crazy. I’m so happy to hear that you found all the right answers but it stinks that you now have to be so careful. Good luck on your journey.

  • 35, and have been suffering for about 3 months. I have bouts with no pain but mostly every night. Interesting you mentioned the peeing thing. I too noticed it gets worse if I get up to pee. Drs have said it’s most likely linked to stress and anxiety. But your diagnoses was a very interesting read. I feel 100% fine during the day just not at night

  • I was shocked to read all this and find it to be herpes related. I’ve suffered with herpes in my bladder over the past few years, but didn’t even think that it could be what’s effecting my stomach issues I’ve been having. I’ve always been jealous of my husband who hardly ever deals with his herpes, but now realize it’s because of the testosterone that he takes. I’m female and my testosterone is in the crapper, but I don’t take it because it makes me really moody and very edgy. My husband brings enough of that into our home without me adding to it, so one of us needs to be the mellow one. I keep Acyclovir on hand in case I can’t get things under control with my herpes, so I’m going to see if it helps with my waking around 3:00 am each morning with stomach pain. It wouldn’t surprise me as I’ve been eating more carbs with higher arginine that could be causing them to be more active. I find it interesting you never mentioned a low arginine diet to help with your problems. Did you read on any of this on your journey to healing? I know I do so much better when I stay away from high arginine foods especially protein powders which I have used lately to try to up my protein intake. Thank you, you have really hit on something that could really be causing all my grief with my stomach lately. I hope you will continue having success with all you are doing. :o)

    • I hope you find some benefit, good luck! I did try the low arginine diet along with lysine supplements, but did not find it made any difference. Looking at the research on this dietary approach, the results are dubious, but it definitely does seem to work well for some people. I suspect there may be other mediating factors as to why some people respond well to this approach and others don’t.

  • I also wake up to uncomfortable lower and upper abdominal pains but of I take a few steps and pass some gas it will be better actually I will be able to sleep again. But before waking up I will be having difficulties in finishing my breathing in as it causes some pain in the stomach. Visited different doctors severally but I’m told it’s because of a pelptic ulcer. And the other thing when I wake up I will be having more saliva with very small clots of blood in my mouth. It looks like I do not get to swallow saliva when I’m sleeping until I wake up , but still the doctors ignore and brush it off.

  • I just discovered your thread after suffering with abdominal pains for the last few months. I am currently taking 20mg omeprazole and following a low fodmap diet however I personally feel things have gotten worse in this week since starting this treatment programme set by my gp. Your thread stuck out to me mainly because of the tongue but. I regularly have ‘geographic’ tongue where I get red patches which are covered in a white plaque. My dad who’s a consultant pharmacist has thrown the herpes idea around before but gp never taken this further. My abdominal pains occur in two pin point locations left side under rub cage – fullness and burning sensation/stich and exactly 2 inches under my belly button to the left side like yours! I’m constantly obsessing over my stools, some days they’re fine but mostly constipated even though I generally follow quite a healthy lifestyle. I’m fed up and dreading going back to my GP again after so many tests have come back negative. I’ve just been diagnosed with IBS (even though no inflammation was reported from my stool sample) gastritis and possible stomach ulcer.

    Feels good to know I’m not alone after finding your blog! / has given me a little bit of hope!

  • I wake up at 4-6 am every night n can’t sleep feels like I’m drying been 10 years I’m only 27 plz help he sharp pain in upper abdomen only when I go to sleep feel like I’m drying n test come back normal 😭😭jackcantres@gmail.com

  • Hi
    My mom is currently dealing with exactly what you went thru since 2009.
    She has all the tests , mri, ultrasound, biopsy, endoscopy, colonoscopy, and nothing came up. She’s taking meds for nerve pain, antidepressants, pantoprazole and nothing help. I’m going to show this article to her family physician and hopefully he’ll prescribe her the meds you’re taking. Thanks for posting your experience.

  • Well, I’ll keep it brief, but I do have a question at the end. I am still suffering from night time (used to be day time too) stomach pains. Have been for over 30 years. Various tests, drugs, diet changes have all come to nought. Almost everything you mentioned above I have been through too! I even had a flexi cystoscomy years ago (wahhhh!!!). I always noticed with a drastic diet change that it would help, but then the pain would slowly creep back. Best diet so far I’ve found that helps to a degree is close to a vegan diet, which I don’t mind.

    So my question before I try out your idea is – how did you come to the dosages – i.e. 4/2/1 tablets with each meal. I was going to try out by buying the tablets first, if they help, I’ll make my own. I guess I’ll juggle the amounts but didn’t want to be taking too many/too few for me.

    Do you have any thoughts on this?

    Thanks for your post.

    Julian

    • Hi Julian, my dosing was via trial and error, mostly via taking too much and the suffering diarheoa, then starting over slowly increasing to find a good balance – I’ve recently had to increase it. Following COVID infection and development of “long tail symptoms” my entire system has been disrupted.

      Weirdly though, I have found that the anti-histamine/OTC sleeping tablet, “Nytol”/Diphenhydramine alleviates the symptoms. I’ve experimented with the minimal dose needed to produce this effect, and it is x2 tablets (50mg total), any less, nil effect. This has caught my attention, as it makes no sense to me that this should work and I’m still working my way through the medical literature on this subject (its a well documented effect). The problem is, long term use of this drug is really bad news.

      I’m exploring differential diagnosis and looking at chronic Bilharzia as a possibility/co-morbidity – I think it extremely unlikely, but since the treatment for this is easy and safe, I figure its worth a try.

      • Thank you so much for posting this! Why do no doctors know about this and treatments? I’ve had blood tests and chest X rays and they found nothing. It now seems like I found the answer to my fatigue. I still have other problems related to ME though.

  • Hello
    Are you still taking antidepressants, along with the acyclovir?

    • No, I havent taken those for a long time. I found no benefit to my gut health but they did improve my mood significantly.

      • Hello
        How long did were you on the acyclovir and psyllium husk,slippery elm bark. Etc befor your symptoms went away ?

  • Is it possible to transfer this variation of the infection between people?

    • I feel like you’re describing my life. I started having upper abdominal pain that made me afraid to eat. I lost 12kg in that time. One difference was that vomiting was a common occurrence. I had my gallbladder taken out and had no improvement. Gastroscopy and colonoscopy came back normal. Blood tests normal. Helicobacter and std tests normal. CT scan and MRI normal. Everything we could think of was normal. We exhausted our medical plan and had no answers. The night time pain wakes me up but isn’t so severe that it sends me crying. I also got the diagnosis of ibs. None of the meds work. I’m going to try to get the herpes zoster test done even if I have to beg my doctor. I also have blister like pocs that form on my neck every now and then and deep pimple like spots on my chin. I really hope that after the test I can get some relief

  • I have stumbled across your article and am very grateful. Likewise story. Stomach cramping early hours of morning interrupting sleep patterns, changeable still motions, random bloating and distended stomach on occasions (Female 54 ) Had reasoned that it was menopausal linked. Tried dietary changes, healthy otherwise and exercise regularly. Have had Herpes 2 for almost 20 years with medication for episodic treatment. I would never have thought the two linked and will certainly take all you have said into account and revise treatment of these symptoms. Thank you for your research and comments.

  • This is so interesting! I have these red spots on my arm and a very rough dry patch on my ankles that won’t go away. It looks just like yours. I get terrible mouth sores on the insides of the cheeses and gums and tongue all the time. I also have nightly very bad abdominal pain and severe bloating for years. Nothing helps and all my tests and labs have always come back normal. I am so curious now if my skin things are also related. How did you get the herpes diagnosed? Would a regular PCP know about that?

    • My herpes was confirmed by tests in a medical centre. Initially in a genito-urinary centre when i was a teenager, but when the symptoms switched to other localities, in an occupational health department. I was working as a hospital nurse at the time, and wondered if it was a hospital-acquired infection owing to the strangeness of the symptoms.

  • After madly Duck-Duck-Go’ing my symptoms night after night, I thankfully happened upon this site. Writhing in pain still in the middle of an episode…it’s 4 AM and I’ve been awake with the nerve gut pain since 1. I now have an idea what to try, but my body knew it anyway. I had grabbed an antiviral herbs mix for some unexplained reason that my deeper intelligence knew, so I’ve started with that and some honey immediately. Tomorrow to Doc to request the a drug.

    Thank you for your generosity in sharing your experience!

  • I read different info on the senna , some say you become dependent on them and others say they take them daily.
    Is that something you are concerned about ? You take to in the morning and one at night , correct?
    Thank you

    • Hi Inge – yes, twice a day. I’ve read lots of reports of the same as you describe. I’m not aware of any medical research or evidence that confirms this. For me its an issue of necessity, even if i am storing up a problem for later on, to do otherwise would make life unbearable now.

      I’m currently testing magnesium citrate as an alternative, but this doesn’t seem to be too helpful in my case (many people report it is miraculous)

  • I’ve had a similar problem, it’s been relapsing remitting for 30 years with no diagnosis and I had to quit working. Oddly one of my great great grandparents had it and his family had to take over the farm because it I capacitated him. I’ve been through the same specialists rounds and drill you’ve been through. Here’s a list of things I’ve tried, hopefully they can be some help to you or somebody scrolling through the comments.

    Pariet worked better for me than somac.
    Peppermint tea better than the capsules and the sipping a warm drink part was helpful.
    Aloe vera drink seemed to be soothing as long as I didn’t have much.
    A heavy moisturiser helped with the dry scaly lesions and a tiny amount of low dose periactin helped with the tiny itchy ones.
    A couple of prunes and Benefiber help keep my gut functioning, laxatives just give me cramps.
    Gastro stop works on the pain etc if I have a flare with the runs.
    I either can’t lose weight or can’t keep it on and fast on occasion to give my system a break when it’s getting bad, I can’t eat whole meals.
    Sleeping slightly elevated on a few extra pillows helps with the reflux and associated upper GI symptoms.
    Light abdominal bodywork that works on the fascia rather than the muscles and hot packs help.

    Keeping a food diary through the allergy clinic picked up I can only tolerate small amounts of wheat, dairy and gas producing or irritant foods including artificial sweeteners that have a laxative effect. I tested positive and was treated for H. Pylori but I still have GERD. I ended up having a hysterectomy because it was the only thing I had any pathology for, it helped but didn’t fix it.

    My doc is pretty good about trying things he can see a justification for but baffled as to what’s going on, I had bad flare up recently where I got to his office (usually it’s the emergency department in the middle of the night) so he could examine me, he’s said it could be Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES) and they treat it with trigger point injections. Not a sinister condition but extremely painful and debilitating. He said it’s likely triggered from either overdoing it straining my abdominal (this last time was after a kidney stone) or from the muscles being in a hypertonic state (which I’ve had in other muscles and was on baclofen or Valium for).

    I’ll have to ask my Dr about neuropathy, I already have it in my hands and feet, and about the slippery elm bark, I haven’t tried it before.

    I hope you’re able to get some answers or a remission, there’s so many like us out there.

    • Thans Alex, I’ll look into some of the things you list here as they are unfamilair to me.

  • I’m having same symptoms on upper middle abdominal pain starts after I sleep for 4 hours, the pain wakes me up (exactly about 4 hours of my sleep) for the past 9 months or so. Its still continuous and worried. Interesting thing is, no abdominal pain during day time, but occasional GERD. Please update the page when you have a solid solution to this problem.
    I have stopped taking Milk, wheat/Gluten products. Thank you for the info.

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