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Glad to have found this forum. Sort of reassuring to find so many others suffering with similar symptoms, and also shared experiences & frustrations at what seems to be a lack of knowledge & understanding from doctors & specialists.
Am 52, in the UK, and my problems (I believe) started or at least came to light after a sexual encounter. I know, I should know better at my age but after a long fallow period, a night of (unprotected) sex seems to have sparked problems. A few days later and feel good factor turned into discomfort and a fear that I may have picked something up.
I've copied in a sort of timeline . I'd be very interested to know if anybody else experienced any of the same or similar symptoms, especially those less frequently described such as low grade fever or swinging temperature
12th Jan: New partner. Unprotected sex.
20th Jan: Hives type rash on body, arms, groin. Feeling not 100%.
22nd Jan: GP re (genito-urinary discomfort )Urine dip test & sent off. Trimethroprim prescribed for possible UTI infection. Bad reaction (hot, racing pulse, anxious) reported to GP following day. Anti-histamine helped. Stopped taking Trim.
21st Jan & Jan 28th - STI walk in: 28th Jan: walk in STI clinic tests – full screen. Believe that symptoms (weeing a lot with some burning and discomfort, but also some discomfort & pain around the pereneum area and also penis tip) and could be non specific urethrtitis & prescribe 1 week Doxycline to cover all options incl. Chlamydia. New partner also tested (full screen).
31st Jan: Saw GP as symptoms worse prescribed a month of Cipro as he believed it could be prostatitis based on symptoms (but no urine or blood tests done). Having had previous issues (bad side effects) with antibiotics I didn't take these straight away.
5th Feb – New partner diagnosed with Chlamydia – so began Doxycline (as opposed to Cipro - that I hadn't started as had been waiting for STI test results). Felt sure this must be what was ailing me. But ...
8th Feb - my results back and all clear! No Chlamydia or anything else. Puzzled.
13th Feb. Still concerned about no improvement in symptoms so returned to STI clinic to discuss. Told that Doxy would’ve dealt with the Chlamydia so couldn’t be that. Prostrate exam at clinic and said that was enlarged. Wasn't that painful an examination. Said could be age related. & therefore may not need a long course of antibiotics but to see GP again.
15th Feb: Back to GPs who said that better to try Cipro as probably was (inflamed) prostrate & prostatitis but to return if couldn’t tolerate or bad reaction.
18th Feb: Sure enough, bad side effects after Cipro (first tablet – within 1 hour – heart racing, hot, bad anxiety, panicky, shaky, visual disturbances, weakness – similar to Trimethropin reaction but worse – Benadryl helped)
GPs informed & prescribed Doxycycline again instead (as tolerated previously). 2 week initially then longer if necessary.
18th Feb – 8th March – Varying degree of severity with symptoms over the period, but with increasing levels of anxiety, panic, worry, paresthesis (hands, feet, skin crawl), swinging low grade temperature; concentration issues; extreme tiredness – attributed largely to a Doxycycline (especially Paresthesia) side effect – BUT …. 10 days after coming off Doxy – those symptoms remain, and possibly have got worse (especially abdominal discomfort & tightness).
8th March – Bit the bullet and made a private appt to see a urologist. Did urine flow & bladder scan. Prostrate examination (tender & sore - more so than last time). Told to stop Doxy & Cipro suggested again! Explained tolerance problem. He suggested nitrofurantoin as an alternative option. Semen sample & PSA test
Genito urinary symptoms variable, but overall far less urinating & discomfort & tolerable. However, other symptoms much worse. Muscle weakness, fatigue, concentration issues, panic& anxiety feeling. Hands (and feet) swing from hot to cold and tingle, pins & needles feeling; sinus congestion, tingly/sore lips and tongue; temp up and down (35.8 to 37.1 - my normal approx 36.3)
• needing to urinate more often or urgently
• pain, stinging, burning during or after urinating
• discomfort, aching in testicles (right mainly), perineum, and penis (urethra) & tip of penis
• discomfort, aching (tightness) in lower abdomen, and groin.
• no desire for sex (lack of libido) - watery semen on ejaculation - some discomfort after
• Occasional chills, swinging (low-grade) fever
• aching limbs, weakness, fatigue, a feeling of needing sleep. Not sleeping
• anxiety, concentration problems, paresthesia
- Sinus congestion, sore & tingly mouth & tongue
March 20th prescribed another antibiotic (Erythromycin) for 6 weeks.
Very little change in symptoms over the period but by week 5 stomach issues (bloating, gas, pain, heartburn - I have reflux & IBS and have taken Lansaprozole for the past 5 years to manage this) became far worse. Assumption being as a result of Erythromycin so advised to stop (after 6 weeks).
Now 10 days after coming off Erythromycin all the above symptoms persist varying in severity on a daily basis. GP has made a referral to a Urologist (NHS) and Immunologist (for antibiotic issues). Stomach problems persist and have had a week of palpitations that weren't being felt previously. Have attempted a very bland diet but not doing the job. Still taking Lansaprazole but feels as though they aren't working at all.
Only 4 months on and I know that many of you have experienced this condition for far longer, but am wondering what help or advice you can share? Like all of all you at some point no doubt, I am desperate to be symptom free ASAP. The pain & discomfort is tolerable and I can manage that without even pain relief. The other symptoms (fatigue, weakness, anxiety, low grade swinging temp etc) are impacting significantly on my life though and I have missed quite a lot of work and am unable to exercise.
Hopefully a case of a problem shared is a problem halved ... or eliminated completely!!
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