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 A bit about me and my IC/PBS

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Join date : 2018-08-20

A bit about me and my IC/PBS Empty
PostSubject: A bit about me and my IC/PBS   A bit about me and my IC/PBS EmptyMon Aug 20, 2018 10:18 pm

I developed UTI like symptoms in July 2015. As I was perimenopausal, my gynaecologist suggested I try HRT as he believed my symptoms could be related to low estrogen. This proved unsuccessful in relieving my symptoms. Prior to July 2015, I was experiencing symptoms two days before menstruation for several months beforehand that completely resolved once menstruation commenced only to return the following month. Then it became chronic where I have had ongoing symptoms on a daily basis. In November 2016, I went to my GP in desperation as I was struggling to cope with my daily activities due to the pain and consequent disruptive sleep as I was getting up to void several times a night. My GP ordered urinalysis which showed large amounts of microscopic haematuria and leukocytes with no significant growth. He prescribed antibiotics at the initial consultation, however they made no difference. As this was the second test showing blood, he referred me to a urologist in Perth. After two flexible cystoscopies, IVP scan, cytology testing and a urodynamics test, I was diagnosed with IC/BPS. I commenced a course of Ialuril installations along with pelvic therapy as I was also diagnosed with a hypertonic pelvic floor. I was also prescribed Amitriptyline. I had a reasonably good response to the instillations, the symptoms were still there but much milder. After a period of time I could feel the symptoms starting to increase so I had a number of top up instills. My symptoms are bladder pressure/pain, frequency and a feeling of needing to pee even though I have very little in my bladder. Mostly, I feel an improvement after I have voided only for the feeling to return in a short period of time. I also get low back pain, pelvic pain between the pubic bone and a couple of inches below the navel. Sometimes I have coxyx pain and stabbing pains in the vaginal region. I also experience painful intercourse. I ceased drinking alcohol, caffeinated drinks and carbonated drinks. I drink mainly water with the occasional hot chocolate or peppermint tea. I have also ceased eating many acidic foods including dressings. By doing my twice daily PF exercises, sticking to the diet and the help of Amitriptyline, I have improved overall. I’m still having symptoms daily but with the above treatment plan, I have more mild days than previously. I try not to overdo things and pace myself as exercise tends to aggravate me. Subsequent urinalysis over the past 6 months have shown small amounts of blood. This condition has had a huge impact on every area of my life as for many other sufferers. I was so thrilled to learn of Prof. Marshall and his team conducting research on IC/BPS. It would be wonderful to get some answers and hopefully a treatment that will benefit us. There seems to be so little known about the root cause. We are just trying to alleviate the symptoms and manage the best way we can. Thank you.
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