In October 2014, I woke up one morning and went to the toilet as usual, however I didn’t feel any relief from going. I guessed it was a bout of Cystitis but had no rhyme or reason as to why it had occurred. I spent a few days trying the usual over the counter remedies but nothing seemed to work. I didn’t have the usual burning, just a constant need to go to the toilet. Prior to this, I had had a couple of UTIs during my teenage years, twenties and thirties, all easily resolved with antibiotics.
I went to see my GP who thought it was a “stomach bug” and was told to just wait it out as my urine was negative on their dipstick test. I went back a week later feeling no better. I had blood tests, various urine cultures and everything was negative. I was given Trimethoprim for three days which did nothing to help. I was given another course of Trim followed by a course of Doxycycline. Nothing helped.
I thought it was Interstitial Cystitis because no-one could diagnose me
A few weeks later I was referred to Urology and Gynaecology. After a very painful cystoscopy, another course of antibiotics, internal and external scans – nobody could give me answers or provide help. By now the pain had taken over, a gnawing, pulling and scratching feeling every time my bladder filled, it was like cats were using my bladder as a scratch post, I could barely walk and would drag my right leg around as trying to walk normally was incredibly painful. I was prescribed Oromorph and Amitriptyline for the pain which barely touched it. It was now Christmas and I was in a terrible state both mentally and physically – after googling the symptoms I had given myself a life sentence of Interstitial Cystitis (a word used by my GP and Urologist although not specifically diagnosed with it). I struggled to work full time and luckily my understanding employers allowed me to work from home in the afternoons. I could barely function and became very withdrawn from society.
Seeking support and a chronic UTI specialist
In January 2015, I found Bladder Health UK, a lovely lady, that I spoke to on the phone, helped to calm me down and pointed me in the direction of Dr Catriona Anderson at the Focus Medical Clinic and a wonderful supplement called D-mannose. The D-mannose helped with the pain. I had a consultation with Dr Anderson and sent a sample for her to culture using the Broth Culturing technique.
I was so relieved when she found E.Coli and Enterococcus. I was prescribed the correct antibiotics at a high dose (these were specifically tested against the bacteria in my bladder). I stayed on one antibiotic for six months, supplemented with D-mannose and oil of oregano. I felt about 50% better. We then switched to another antibiotic and things improved greatly from there. I added grapefruit seed extract and Hiprex (methenamine hippurate) which also assisted in my recovery.
I changed my diet completely to avoid any food or drink that could cause inflammation or more pain. I remained on the diet for just over 12 months, it was really hard to deny myself alcohol, caffeine, sugar, grains, dairy and various acidic foods but the results were amazing. I think I helped to starve the bacteria and allow my bladder the chance to heal from the inflammation.
It wasn’t just my bladder that needed help – I was at rock bottom
I also needed to get help mentally as the whole experience had really taken its toll. I was very self-absorbed and anxiety levels were through the roof, it would crash over me in waves and leave me completely overwhelmed. I thought I was strong and could deal with most things in life, 10 years as Lifeboat Crew had shown me just how strong I could be but this illness truly exposes you to the core. Through recommendations from the group I started taking Kalms and took a 12-week course of Cognitive Behavioural Therapy (CBT).
CBT is not for everyone and I think it depends on where you live as to how good it is but I must say that I found it really helpful with the incredibly useful tools given to me to help me deal with things. Mindfulness is fantastic but the best things I did was teach myself to live in the moment. It sounds easy but is incredibly hard to stop your brain from wandering off to dark places. I would go out for a walk with my dogs and concentrate on the walk, the dogs and everything going on around me – the colour of the sky, the birds singing, the colour of plants and flowers, make and colour of cars passing by etc. The more I did it the easier it became and I would recommend that working on how you feel mentally as well as physically is essential.
I also explored a potential hormone link and use local plus systemic HRT as my blood tests showed, at the age of 44, that I was going through the menopause. I think this also helped me along my path to healing and I would recommend that you also explore this avenue if you feel it may be of benefit. It certainly eliminated all vaginal pain and made everything feel more plumped up. I was very fortunate to settle very quickly on the systemic HRT and my hot flushes have gone, along with all the other awful symptoms of the menopause.
Dr Anderson’s holistic approach has given me my life back
I’m still taking antibiotics but at a low dose of one at night. I feel so much better and I’m living a normal life now. I still have the occasional need to go to the toilet urgently but it’s manageable – just a reminder that it’s still there though. Without Dr Anderson I don’t know where I would be now, I’m so thankful that she found a cause and, although it’s been a long tough road, she has given me my life back.
What helped me:
• Speaking to an organization such as Bladder Health UK who directed me to a specialist for Chronic UTI – there is help out there.
• The support of my partner, friends, family and my animals even on days when frankly I wouldn’t want to be around me.
• Looking at my body systemically, what could be making things worse in terms of my age, diet and lifestyle and reducing or changing these and then once I felt better gradually reintroducing them. HRT was a key missing piece I needed
• Joining an online support group – they got me through some dark early days as they understood what it is to live with a chronic UTI. I now repay this through my own support of others on the groups.
• Facing my own fears and accepting that I needed help to change these dark thoughts through the guidance and support of others.
Find out about UK specialists in chronic UTI
Read more about Dr Catriona Anderson
What is a broth culture? – find out more
How hormones affect the bladder during perimenopause and menopause