2 Years on, still no wiser & suffering, input appreciated

[CerveloUK]

Hi, first of all I would like to say great forum! I have learned a lot from other peoples input and would like to contribute myself and get feedback along the way.

Current Symptoms: pain to the right testicle and swelling at the top of the right testicle plus some redness on the urethra / meatus swollen especially after ejaculation, I have at the moment.

Background:
I had Chlamydia about 2 years, was tested positive and treated with the two antibiotic pills taken once which seemed to cure it. 6 months on something still didn't seem right so I was tested again but it came back all clear, they also tested for syphilis, gonorrhoea and HIV. All came back clear.

6 Months further on to January 2016, I started to experience the symptoms outlined at the top and it back very irritable and swollen on the right testicle, I went to the doctors explained above ref Chlamydia and they gave me a 9 day course of doxycycline as they suspected epididymitis. Which seem to clear it up in about 5 days and I was even cycling and running again.

A week after the finishing the course of doxycycline, the symptoms came back, I read online the bacteria which can find itself in all sorts of places as the tubes in the testicles can be like a network of caves and it can be hard to completely kill off. I visited sexual health clinic who gave me a 14 day course of Ofloxacin but this slightly reduced the symptoms but they never went away. They seemed reluctant to run a doxycycline course again as they said it came back after taking it first time round, but from experience online the course may need to be longer for doxycycline to really work?

I had a UT scan to reveal I had a epididymal cyst but currently no pain, the doctor advised it would cause no harm and I would have to live with it. It is about the size of a pea.

At this point I currently I had no pain, just a red urethra when aroused, an epididymal cyst and what could be mild prostatitis? But this is new to me, I have read others with similar symptoms on here but more severe. My doctors thought it was all in my head and didn't really want to know because I had no real pain.

I lived with this for another 12 months, then had an onset of feeling really unwell and conducted a urine culture and update on symptoms:

• E Coli Culture in Urine.
• Bright Red penis tip after ejaculation.
• 5mm right epididymal cyst (which grew at the point of the infection starting) 12 months ago
• Scrotum skin red over and around right epididymal area
• Bladder irritation From E Coli infection
• Kidney irritation From E Coli infection

I dont have

• Any prostate pain
• No frequent urination
• Bladder holds normal amount
• Flow is normal when urinating

Prescribed Cipro 500mg for 6 weeks

Retest still shows E Coli

Prescribed Cipro 750mg for 8 weeks

Urologist follows up and E Coli showing all clear now, but body taken an a hammering from Cipro especially stomach and nerves.

Few more months on, symptoms persist to current day.

• Bright Red penis tip after ejaculation.
• Swollen Meatus
• Bright Red penis tip after ejaculation.
• Red Penis Glans
• 5mm right epididymal cyst (which grew at the point of the infection starting) 12 months ago
• Scrotum skin red over and around right epididymal area
• No general pain or irritation if I don't ejaculate for a few days, just redness.

MRI done on prostate, shows perfectly normal. Continue my life, trying to ignore the symptoms believing its just the aftermath of the E Coli, get back to running and cycling slowly.

Been having symptoms for 18 months at this point, decided to carry out more tests as seems to be persisting, for the first 6 months all test results for whatever test I tried came back negative, even semen and urine cultures through the NHS but I knew something was wrong (red meatus and red tip after ejaculation), I finally got a result of Enterococcus faecalis, I thought ok at least I know what I am dealing with now but after 2 long courses of Cipro 6 and 8 weeks the Enterococcus faecalis was still present? I have researched Oregano Oil kills off enterococcus faecalis in 80% of cases, so I have just started taking a high quality supplement of this twice a day and will keep you guys posted as I am loathed to do more antibiotics, as they have really taxed my body and I feel it could take years to recover.

I have had a five private urine cultures done now, the results as follows:

Feb 2017: Clear
March 2017: Unknown mixed growth
May 2017: 10,000 - 100,000 cfu/ml Enterococcus faecalis
June 2017: 10,000 -100,000 cfu/ml Enterococcus faecalis
August 2017: >100,000 cfu/ml Enterococcus faecalis

But urologist doesn't seem to think this is the problem and says it's nerves issues?

Current observations:

When I had a weeks holiday, total relaxation no sex or masturbation. I thought when I do get home and ejaculate the symptoms are going to be horrendous but there were none, totally fine no irritation after ejaculation.
If I cycle then ejaculate the next day, symptoms are really flared up.
Bad diet makes symptoms worse.

1. Is the sore epdidmyi with cyst causing nerve issues?
2. If I relax for a couple of days symptoms are non existent?
3. I would like to start a family with my partner but scared stiff to pass some kind of infection on I can't seem to cure.
4. I am really confused if this is scaring / nerve issue or an infection. I would be grateful for input or where I can go next with this?

[webslave]

1. Probably not, although an element of allodynia cannot be excluded
2. This is also a feature of CPPS, although you have no pain so you're not a CPPS patient yet.
3. It's very doubtful that you have an infection. You have been pursuing independent labs for tests and they have finally obliged you with a >100k cfu/ml result (the minimum level to be sure of an infection). At other times you had E. coli, chlamydia, so there is no consistent bug as there is in a case of for instance chronic bacterial prostatitis. I would stop chasing an infectious cause, because it's a wild goose chase. Eat lots of cranberries just in case you have some adherent bacteria problem, but I highly doubt it (cranberries make it difficult for bacteria to cling to the tissues of bladder and urethra).
4. Not scarring, not infection. Nerves: yes. Mast cells: yes. Take quercetin to calm symptoms. Follow the IC diet for a while to see if it helps (you report diet can affect symptoms). Cultivate a stress free lifestyle (stress makes your symptoms worse, so you may be on the road to CPPS).