I have had vague urethral and pelvic pain symptoms since the birth of my first child by ventouse in 2000. It didn't go well and I ended up with a vaginal haemorrhage and a catheter in for several days following. I urinated blood for a week. In the years afterwards, I attributed the pain to a rough birth and futilely saw countless gynaecologists for the pelvic/vulval pain I was having and the low grade temps (which I thought must have been hot flushes) and nausea.
Everything really flared up around 2009. By then I had vulvodynia so bad I couldn't walk, was urinating blood, daily nausea, and generally in so much pain I wanted to end everything. I cannot remember how many doctors I saw, most (but not all) were tactful enough not to call me crazy to my face. I had so many swabs and cultures done, all of which came back negative. I was eventually was diagnosed by cystoscopy/hydrodistension by a urologist in Melbourne sometime after 2010. That was excruciating. Never again. I ended up under the care of a couple of great urologists and uro-gynaecologists, and a pelvic floor physiotherapist. They were all lovely and willing to help, but stumped as to what was causing the pain, only able to suggest things which I felt were just a stop-gap, band-aid solution. Short-term instills, counselling to come to accept my "new" life.
Then my urogynae, in desperation, gave me boric acid pessaries. Three rounds and no more vulvodynia. Now I use it only for maintenance. I also have Mirena which has stopped my periods and reduced the additional monthly pain. Since moving up to Brisbane I have found a sympathetic GP who has given me several rounds of antibiotics as well as prophylactic antibiotics. I have found that using high dose antibiotics, in combination with Hiprex, boric acid and dmannose have made a huge difference. It's a fine balancing act. I still cannot eat food that has much flavour, or is acidic, my diet is so boring. But I am now able to only take an antihistamine every couple of days, instead of three a day. Now when I do pelvic floor therapy it actually works and I can now walk around the block, go swimming and travel on the bus without dying in agony. The nausea and low temps are also gone. But I am worried about what happens when the antibiotics stop working. Without having identified an actual cause, treatments are really hit and miss and doctors are increasingly concerned about prescribing antibiotics without a positive culture. I don't want to go back to that level of pain again.
I really hope the ICBPS research team is able to find what is causing this - please.
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