Hi everybody,
First, I apology for my long post and for my English (I'm French).
26 years old male, I have been suffering from butt sweating before bowel movement for almost 12 years now (I was 14 when it appeared).
Things got worse in 2014, so I started a serious medical investigation with some of the best doctors of Paris and there are many things that I'd like to share with you.
It's the first time I find recent posts of other people reporting the same weird pathology, it is almost exciting.
My main symptoms didn't change since the beginning: as soon as the need to go appears (even a slight feeling of full or "active" bowel), I start sweating from the butt. Important need to urinate also activates it (as well as important gas...).
The "source" of the sweating seems to be in the coccyx area, then it expands to the buttocks and testicles. The back of my thighs and knees is also moist, as well as my hands' palms.
I often sweat so much that it drenches my pants, which is awkward and very umcomfortable when it cools down in winter.
Other symptoms accompany the sweating, some of them systematically:
- I feel too warm, especially on the perineum, hands and feet
- Strange sensations of heat AND coldness in the same time which mostly follows the same pattern as the sweating but also goes down to the feet via the legs' back. Tingling accompanies it
- Important contraction of the dartos (testicles' muscle), like when you go into cold water
- Overactive bladder
- Abdominal pain/discomfort with shameful noises, etc. (classical IBS symptoms)
- Sometimes an important pain in the lower back
- Sometimes headaches
- More globally, I feel like if my energy was blocked somewhere between my guts and perineum
The more I need to go, the more my symptoms are important. So it is particularly active on mornings and after eating. Stress also worsens them, but it's not the cause.
As you all noticed, the only way to relieve is to go to the bathroom.
But in my case, even more important is to feel really empty after it. If I don't, the symptoms would go on. On the contrary, if I feel empty after, they disappear and I can start a normal day. Actually when I succeed I feel like a totally other person, light, energetic and dynamic.
Since I noticed the link between the bowel and my symptoms, I have organized my life around the "morning emptying", with a lot of technics which became real rituals year after year.
It used to work rather well until 2014. At this moment, for unknown reasons, the feeling of being empty disappeared and I started to feel like constipated, which was my biggest fear. I started to spend hours in the bathroom, a real nightmare.
I first thought about some sort of dyschezia and tried many things to relieve it, until an endoscopy revealed that my colon was empty even when I feel constipated...
Before 2014, doctors and I thought I had post-infectious IBS as, like you Rcece, I had a rather terrible food poisoning some months before the apparition of the pathology (btw some stupid doctors also claimed that my problem was psychologic, which is ridiculous and upset me a lot).
However, I quickly noticed that no one in the IBS forums reported such sweating. So I thought there must be something else.
And indeed when I start my deep medical investigation in 2014, one of the most renowned French neurologists immediately focused on my Autonomic nervous system. After finding an important **** hypertonia (yea, I let you imagine the horrible examinations...), he first thought about some lesion on my lower vertebras, but the examinations didn't reveal anything abnormal. Then I was tested for Dysautonomia but the results were again negative. He finally concluded that I had atypical dysautonomic symptoms, probably genetic, and that I had to live with them. Other doctors had the same conclusion. I got a neurostimulator but it didn't help.
In the same time, the two French IBS spe******ts confirmed that apart from abdominal pain and post-defecation relief, my symptoms were not typical of IBS at all.
So I was very depressed, when the physiotherapist I was sent to to relieve my hypertonia found that my coccyx had a 90 degrees angle!
A neurologist told me that on the front of the coccyx was the ganlion impar, part of the nervous system. Could it be crushed by my 90 degrees coccyx, hence the sweating and other nervous symptoms? The doctors found the hypothesis interesting and sent me to a specialized medical unit in Nantes. There, they found that my coccyx was also half-broken. Then I had a nerve block on the ganglion impar. I was very excited before, but unfortunately it didn't help at all. My symptoms were still there after the intervention. What a disappointment.
The doctors of the unit said there were other nerve blocks to try in other areas but I am still waiting.
Like you Rcece, I have always felt that something was triggered when my lower bowel (and bladder) isn't empty, activating the nervous symptoms.
The problem is that since 2014, this thing keeps being triggered even after the emptying.
What is this thing and why does it keep being triggered? That's the question.
When it comes to the causes of my pathology, there are many dubious things in my past:
- I had some minor digestive troubles during my childhood and teenage, but it was partly my fault. By this time, I used to retain bowel movements every morning while attending classes at middle school (it was pretty embarassing and stressful), then forced them at the evening to prepare the next day, even if I didn't feel the need to go (I had this stupid non-healthy "organization" since my childhood). According to one IBS spe******t, this broke down my body and explain my symptoms.
- I was quite athletic and had some violent falls which hurted my back while biking or playing judo. Not to mention the chaotic and dangerous kind of bodybuilding I practised alone (no warming up nor stretching, badly done exercices).
- I used to have a great pain in the area of the sacrum/coccyx while doing crunches on the hard grounds of gymnasiums, but I forced myself to go on so that not to appear weak in the eyes of the others. The pain was awful. Could it explain my dubious half-broken 90 degrees-angulated coccyx?
- Last but not least, at the age of 2, a vaccine gave me the Guillain-Barré syndrome, which affects the peripheral nervous system.
(There are other doubtful things I could mention but it would be too long).
Now, after 12 years of struggling alone, 3 years of persistent symptoms and 2 years of medical fails, I am tired and more depressed then ever.
Beside being terribly uncomfortable and awkward, this weird pathology simply destroyed every side of my life, from studies to girls. It stole my youth and future. I just want to go back in the past and get a new chance to grow up without this horrible bizarre thing.
However, I am still decided to find an explanation and a solution, and I hope that we could progress by sharing our experiences.
I found many other (and older) posts reporting our problem, on both French- and English-speaking forums. I am sure there is something to do.