Dear all, I hope this helps at least one person on this site. I am now 37 years of age and on and off for the last 20 years I have suffered with recurrent cystitis (no bacterial infections ever found therefore antibiotics not effective), pelvic pain - throbbing sensation lower abdomen pain and also shooting electric shock pains up and down inside my vulva (or like a stabbing sensation). I suffer with pain during and after intercourse, pain if I have been on my feet for a while, pain after exercise. Interestingly I also suffer from constipation and haemorrhoids despite a veggie healthy diet.
After years of negative tests; bladder, kidneys x-rays, negative dip tests and urine testing, negative endometriosis the one thing that showed up was a poorly bladder wall and looked as if it was bleeding on cystostomy scans (when they put the camera inside you).
For years my consultant urologist and GP's were unable to help and offered me antibiotics for cystitis, long term Trimethoprim for cystitis, pain killers - codeine phosphate. I was able to work as my job was desk based (although had to take time off for infections and once a three month sickness leave). I was able to get a lift to and from work as sometimes was unable to walk due to the pain.
However I am pleased to say that from Autumn 2012 I was referred again to a different Urologist who has helped me so much (and most of all he listened and empathised with my troubles). These are things that have helped me and I want to pass these onto you all. Some are things I have realised myself as well. I have made a list.
1) Firstly my consultant suggested that my bladder wall was poorly allowing any acidity from foods and drinks to pass through my bladder wall and causing pain. For a year I went through weekly, then fortnightly then three weekly bladder catheter instillations (which involved washing out my bladder with a solution to help). This didn't work for me but I pursued it for 18 treatments. So my dr then has put me onto a trial medication of METHENAMINE HIPPURATE 1gm per day (it should be 2g per day but I cannot tolerate it). This neutralises any acidity in my bladder to stop me getting pains. Since Jan this has worked and I only ever get mild pains and not enough to take my painkillers. Still get pain after exercise and with intercourse but not as painful.
2) Change painkillers from codeine phosphate to TRAMADOL. It causes less side effects of constipation. As I have read on this site constipation and pelvic pain are very much related. So my diet is now high fibre - green veg with every evening meal, high fibre bread, fig yogurts etc. More fibre than the average person. No reading on toilet. try to elevate feet when on toilet. don't wait to go. if you cannot go then just get up and go when you need to.
3) Food Diet. Change this to avoid acidity in diet. I am starting to eat more things and have no reaction now. Foods to avoid - tomatoes, onions, chocolate, sweet foods to avoid the sugar, chilli, spices, ketchups, pickles, cheese, most fruits ! etc. I do have a link to a full list of these foods if anyone is interested. My consultant only gave me about 10 foods but found more on a website. I can now eat the majority of these foods again without any reaction.
4) Drinks diet. No diet drinks which contain Aspartamine. No fizzy drinks. No fruit juice. No alcohol !! No coffee. I now drink volvic water (flavoured) and Pret a manger sell some good canned juice drinks. I have found no reaction to vodka (absolute) but at first could not tolerate any alcohol.
5) Sex. Always go to toilet before and afterwards. Take painkillers straight afterwards if needed. Be careful. I am very fortunate to have such a caring and empathic partner.
6) Exercise. From my treatments last year I put on a stone in weight but I could not exercise. Don't be too hard on yourself. Now that I am better I can exercise a little bit without pain afterwards. Gentle exercise to start with. I have also found using a steam room and Jacuzzi extremely beneficial physically and also mentally. Learn to relax.
I hope this helps at least one person. Please keep thinking positive.