What could be wrong with me? - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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What could be wrong with me?

About five months ago, I developed a mild itch in my urethra as I finish urinating. I wouldn't really describe it as an itch, or a pain, more like something in between. It doesn't cause me any form of discomfort at all and I only feel it when I am on my last urine drops. The awkwardest thing about it is that when I take enough water to dilute my urine, I do not feel a thing. There has been no discharge since day one.

I tried urinalysis and I was pronounced healthy as far as the test could see. I have taken meds for UTI, twice, with no effect.

Recently, I was diagnosed with hyperacidity and completed my prescription, still nothing. Now I am experiencing daily migraines mostly in the morning, but they spread out throughout the day on bad days.

What could be wrong with me?

4 Replies

My bladder is typically triggered by high histamine foods and beverages. When it first started I was at a loss just like you. There was microbial contamination in the home that I was not aware of. Bladder issues and itch without discharge were huge for me. Headaches happened definitely, along with a bunch of other symptoms.

Are you having any other troublesome symptoms no matter how unconnected they seem? Do you have EDS? Are you diagnosed with it or any other conditions? What is your diet like?

As for the migraine, do you take contraception? Obviously everyone's body reacts differently and you're not the same as me, but you're guessing about issues, so may as well hear what's caused resolution of symptoms for me. I took the pill for 15 years and for those 15 years I had migraine. When I swapped to the Mirena device, I had the most savage migraine I'd ever experienced. After 15 years of severe migraine so that I would vomit and experience numbness etc and be bedridden for days, yet I did not recognize this migraine as a migraine it was so much worse again. I was scanned for an aneurysm, none found. My mother begged me to remove the Mirena claiming personality change seen in me. I did not believe here. I appeased her by removing because I love her. What gift to get back!!!! Didn't have migraine for the following 15 years! Hormone disruption can be the cause and can escalate symptoms from other causes also.

I'm sorry you're frightened, I hope the questions help bring some thoughts about your environment and diet changes that may bring you some relief.

People with EDS are extremely susceptible to microbial contamination. Many EDS patients share the same mutation in genes as those with collagen VII defect that is also found in those with conditions like epidermolysis bullosa. This is because (put simply) people with eds have defective collagen, so if they're attacked by mold, virus, bacteria it can cause a gene expression change that causes autoimmunity. Mast cells are located in connective tissue, inflammatory mediators like tryptase, which acts like a meat tenderizer wreak havoc in the connective tissue.


Hi Spooked

Now I have an issue with my urethra which had caused me issues unknown to anyone until a camera was being removed from my bladder after examination, the consultant left the camera on and discovered I had a tiny diverticulum at the top of my urethra just before going into the bladder, as you will probably know the urethra in a lady is very small measuring only 1.9 inches (4.8 cm) to 2 inches (5.1 cm) in length.

A diagram here of a urethra diverticulum:


Quite a reasonable explanation here:


A few years later I had to have another camera because I was having more problems and the consultant could no longer find the diverticulum and said that was good and not to worry about it but I do...

Anyway I would suggest a couple of things you might want to try, incidentally I was much later put on a daily maintenance dose of an antibiotic to help recurrent UTI and then read an article from a urologist talking about the exact same antibiotic I was taking and suggesting the use of cranberry tablets daily to dilute the urine, so over 2 years ago I started using triple strength cranberry tablets just one last thing at night before going to bed, I stopped taking the antibiotics and have not had a repeat episode since, I was then told by another member of my Behcet's forum about product that had been recommended by a consultant called D-Mannose this has been used successfully for UTI and diluting urine too, I take this too in tablet form once a day.

If you feel the hyperacidity my be affecting the urethra then you might wish to try the above.

Hope you start to feel some improvement soon.


hello, I am having serious trouble in the same place, are you male or female, don't know if it makes any difference but can tell you of other symptoms I have.


Hey there, I think you might want to look into d-mannose. have you heard of this?

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