I am a lot better right now, no antibiotics and have not taken them for a year –

My pelvic floor is where it started

Six years ago, in my mid-forties, I was diagnosed with pelvic organ prolapse by my urogynaecologist, and advised to use a biofeedback machine to help improve my pelvic floor through the training and guidance of his pelvic floor nurse. As we ladies know, sadly issues with pelvic organs can develop from your forties onwards and it was very distressing to experience this.  However, I used the biofeedback machine religiously, as instructed to try to improve things and within a few weeks, developed a taser-like feeling in my bladder along with frequency, bladder pressure and intense pain radiating from my bladder down my arms and legs.

The urogynaecologist I was seeing in London immediately diagnosed Interstitial Cystitis (IC). I disagreed as I had no history of UTIs and felt this was due to the nerves being over-stimulated. He prescribed an antibiotic, doxycycline (which has an anti-inflammatory effect) and after two weeks my symptoms were gone. I used the machine again on the settings set up by the incontinence nurse and bingo – back to intolerable pain. Another course of doxycycline and everything calmed down. I left the machine alone for two months and on the recommendation of the pelvic floor nurse started using it again but only twice a week at 40% power instead of the 80% she had originally set it at.

I thought all was corrected but it came back five years later

All was great for five years, until a year ago. I was sitting peeing and I noticed my urine stream was very odd, like peeing through a colander. It then felt prickly, like the start of a UTI. I had an old packet of Macrobid antibiotics and started those immediately as we were due to travel to Africa on safari and I didn’t want to have a UTI there without sufficient medical support.

To cut a long story short, things spiralled downhill. I went back to the urogynaecologist I had seen five years earlier and he again, immediately said, IC.

He put me on Doxycycline and I responded well but in the meantime, I had been referred to Professor Malone-Lee. I nearly didn’t go to the appointment as I felt so much better. Prof put me on Cefalexin for two months. My pyuria count was 6. Initially I continued to improve but about four weeks into treatment all hell let loose and I was in the worst agony of my life. Incredible nerve pain, frequency and feeling of pressure. In October 2015 Prof’s clinic had been forced to close temporarily and I was left with no support, no idea where to turn and desperate, alone and very, very frightened. I saw an endless stream of so-called specialists whose advice included cauterising my bladder, and living on pain medication for the rest of my life.

The online community helped me seek holistic treatment

Through a Facebook patient support group for Chronic UTI, and my north London Bladder Support group I managed to find a way through and booked an appointment with Vik Khullar. I found Mr Khullar to be a very sympathetic urogynae, who was very accepting of my research and treatment ideas. He found two bacterial strains in a urine sample and treated me with rotational antibiotics for six weeks. He is a big fan of antihistamines and I followed the low histamine diet. I researched hormones and their role in my situation. I discovered I could have a standing MRI and this really showed the prolapse, particularly the bladder prolapse or cystocele.

I increased my Oestrogel. Things improved but it was a roller coaster. Eventually I sent a urine sample for broth testing to the US via United Medical Laboratories where two bacteria strains were identified. Because of that result, I persuaded Mr Khullar to let me stay on antibiotics for 10 weeks. Unfortunately, the antibiotics that worked best gave me terrible muscle pains and I had to stop them. At the same time, I started a Chinese medical herb trial under the NHS. The herbs are truly revolting but I have grown used to them. I decided to have my Mirena coil removed. I also took a three month course of Symprove to correct the bacterial balance in my gut. I have improved greatly but no one knows why.

I believe my situation was a combination of factors: prolapse, hormones through my peri-menopause and menopausal years, over-stimulation of the nerves by the biofeedback, bacterial infection and the terrible stress from nursing a very dear friend with pancreatic cancer and her death. Almost a perfect storm. Sadly, sex definitely sets things off again.

I felt I had aged 20 years overnight, I’ve lost my confidence, my sex drive and my sexuality. I wish I didn’t know anything about this condition, that it had never touched me. However, I have met the most wonderful group of women – brave, wise and supportive.

By looking at my overall health, I’m on the right track

I am a lot better right now, no antibiotics and have not taken them for a year. I am back at Pilates and yoga, although only once a week. I walk my dogs every day and I no longer take my health or life for granted. I’m feeling much more positive about life and more importantly I am me again, most of the time! I would advise those reading this to:

  • Be your own researcher and find what works for you – often it may mean piecing together several things that are contributing to your bladder problems. Don’t think about your bladder in isolation.
  • Find a doctor who will really listen. They are out there, but tough to find.
  • Don’t always accept what you are told. If it doesn’t fit all of your symptoms keep researching and questioning, you know your own body.
  • Live every day as if it is your last, this is now my motto

Find out about UK specialists in chronic UTI

Read more about Professor Vikram Khullar

More about hormones and how they affect the bladder

Read more about perimenopause, menopause and the bladder

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