Today I’d like to share with you Sandra’s inspiring story of recovery from Interstitial Cystitis.
After 30 years of suffering, Sandra has finally found a way to be symptom free and is enjoying life again.
Her story is a good example that recovery is possible and that we should never give up to look for ways to get better…
Interstitial Cystitis. My Journey
Today I am symptom-free and Interstitial Cystitis no longer rules my life. In sharing my journey I hope that you too can get on top of this disease and live the full, happy life you were destined to live. After a lifetime of pain, I am now living my dream. I dedicate this post to Lisa Benshabat who inspired me to tell my story.
Where it all started
When it all started I can not say, but there are so many similarities in my story to others. At a young age, I was put on the contraceptive pill because I had debilitating pain every time I got my period. At 17 things worsened to the extent that every time I got my period I would start vomiting and be crippled with pain. On several occasions, I ended up in the hospital for morphine injections to stop the pain. My periods were starting to rule my life.
After visiting a gynecologist it was discovered I had a cyst on my ovary. This was removed but during the surgery, they discovered that the bowel, bladder, and uterus had attached themselves to each other. Something that is common with endometriosis. The surgeon corrected this and I thought that was the end of my problems. I wished…
Unfortunately, I continued to be sick every month until I chose to stop using the contraceptive pill. Overnight the issue disappeared. For four years I had no health issues and in that time I found the love of my life.
Antibiotics started a vicious cycle.
Whilst on my honeymoon I got my first urinary tract infection. Honeymoon cystitis they called it. When we returned from our honeymoon I had another first, I found out I was pregnant. Nine months later my daughter was born by emergency cesarean. Intravenous antibiotics were given to me to prevent an infection which, unfortunately, led to me developing vaginal thrush. Over the following years, I had a couple more UTI’s and continued to get thrush sporadically.
Two more daughters were born by cesarean over the following four years which meant two more lots of intravenous antibiotics. At the time of my third pregnancy, I was suffering from enormous stress due to poverty and a failing business. It was after my third child’s birth, that my urinary tract infections really started to become an issue. I was visiting the doctor regularly with depression, thrush and UTI’s. It seemed to be a vicious cycle. The more UTI’s I got the more antibiotics I got the more thrush I got the more depressed I got. Worse was to follow.
What was wrong with me? The medical profession was baffled.
I began to have all the symptoms of UTI’s with terrible cystitis, but the urine cultures would come back clear. The doctors started questioning my mental health, “Are you sure it is all not just in your head?” They would remind me I needed to make sure I went to the toilet immediately after sex and to ensure I always wiped from front to back and to keep myself very clean. Surely they realised I wasn’t an idiot? Frustrated and in pain I was scared that I would never have any quality of life. My three little girls and a husband depended on me to be well. Did they think I was faking it too?
After a couple of years of this, my cystitis really ramped up. Everyday activities were becoming increasingly difficult because I was constantly in pain. On a good day, I just had mild burning and irritation. Bad days were hell, someone was pouring acid on my vagina. Every time I went to the toilet the pain was intensified. My stomach would swell up as if I was five months pregnant. Wearing anything tight around my abdomen or crotch was not an option anymore. Intense hot flushes became normal as if my body was constantly fighting off an infection. If anyone asked I just said I had the flu.
Feeling Alone and suffering
The doctors were baffled because the urine cultures often came back clear, so all they could do for me was to give me very strong pain medication. It seemed that this was my lot. And so it continued, year after year. Often in the dead of night all alone I would spend hours and hours researching on the internet for anything that would explain what was going on with my body. Soaking in baking soda in the bath seemed to offer some temporary relief, so the bathroom became my sanctuary.
My pain was always the worst in the morning and I concluded that this was because my urine was its strongest at that time. I began trying to wake up in the night so that I could drink water to ensure it wasn’t so painful in the morning. Physical and emotional exhaustion was taking a toll on me. My husband could tell just by looking at me if I was unwell, he said my skin colour would change and it was obvious.
Fortunately, I found some amazing relief by visiting a doctor who specialised in chemical poisonings. He would give me homeopathic remedies which would work almost instantly, but then I would come in contact with another chemical and the pain would return. It appears that my bladder was really sensitive to chemicals. I also realised that not only was my bladder sensitive to chemicals but I got cystitis 24 hours after sex almost every time. This naturally brought a strain on my relationship with my husband.
Searching for answers
Over a ten-year period, I visited four specialists before I finally got a diagnosis. There were several attempts to cure me of this mystery illness. At one stage I had a biopsy of my vulva to see if I had a skin condition. It was decided to laser the skin off my vagina and vulva.! As you can imagine this was horrendous and I felt so violated afterward. My skin was burnt and basically rotting off me. Every time I went to the bathroom it was torture. I was getting really desperate for relief and some answers. Once I healed though, it did seem to help a little bit.
At times I felt so alone and didn’t think I could go on. All this pain and illness and lack of intimacy were having an enormous impact on my marriage. Often I felt guilty and a burden to my husband. Every time we were lucky enough to go away for a weekend or holiday I would get sick and we would end up at the accident and emergency clinic. My husband felt helpless seeing me suffer. One specialist put me onto a long term plan for thrush. This did settle some of the discomforts I felt around the vagina and urethra, relieving some of the pain.
It didn’t solve cystitis and bladder issues. When I was at an all-time low I started to explore more alternative treatments. Spending a fortune trialing different remedies that I had found online. I tried acupuncture, antihistamines, cough medicine, herbs, healers, Chinese medicine, Reiki, boric acid you name it I tried it. Some of them gave a little relief but not enough. I will be honest, I did have suicidal thoughts, but I am a fighter and refused to believe I couldn’t find a cure.
One time I told my husband that I couldn’t go on in pain anymore and that I had booked myself into an ayurvedic wellness retreat for a weekend. Attending the retreat brought me great relief which was really weird. Not only did I feel calmer, but I was also in less pain, didn’t feel so light-headed and just had an inner strength. I was ready to tackle the medical professionals again.
Through my internet searching, I found a specialist in Sydney. So I arranged to go and visit my sister in Australia and booked an appointment to see him. He was very understanding and made some suggestions for treatment, but this was difficult with the lack of knowledge and information available in New Zealand. But it did give me hope. There might be a cure out there. All I had to do was be persistent.
Finally a diagnosis of Interstitial Cystitis
Back in New Zealand, I found a pelvic floor physiotherapist. I realised through this therapy, that my pelvic floor was clenched on all of the time, creating more issues. With the therapy I learned to relax those muscles which, in turn, decreased some of the pain. After completing a second cystoscopy with yet another urologist, I was diagnosed with Interstitial cystitis with Hunner’s ulcers. I was so excited to have a name for this condition. Finally!!! This was good news. The bad news? There was no cure for Interstitial Cystitis.
The doctor put me on a low-grade anti-depressant which would dull my pain sensors in the vagina and bladder and hopefully give me some relief. This did relieve some of the pain, but I still had a swollen belly, lower pain in the abdomen, recurring UTI’s and cystitis. Fantastic! Next, he lasered my bladder (I know!), hoping that the new skin that would grow would be healthier. This, although painful, had very little effect. Déjà Vu, I was starting to feel like a guinea pig and wondering when my Interstitial Cystitis would get manageable.
I continued to research online and explore different treatments. I didn’t know of anyone in New Zealand that had had this illness and the New Zealand specialists seemed to know very little about it. I began to follow the Interstitial Cystitis diet. Very quickly discovered that I had been eating foods that were definitely triggering my cystitis and swollen belly. A couple of years later I tried yet another specialist and he suggested taking an antibiotic every time I had sex. I was reluctant because of the thrush issues but was willing to try anything. Finally, I was really started to see some progress.
I started to get less UTI’s and cystitis. At the same time, I found a fabulous naturopath who worked on inflammation and healing of my bladder with natural herbs and minerals. She also worked on balancing my hormones as I had noticed that they seemed to affect my bladder. Slowly my bladder healed and my quality of life improved enormously. One herb that really made a difference to my pain was marshmallow root. For thirteen years I continued to use antibiotic therapy.
Despite all of this, I still got three to four UTI’s a year and the bacteria were becoming resistant to the antibiotics, meaning I might need to take two or three complete courses to get rid of it. As I starting going through peri-menopause I could see that the change in hormones was affecting my bladder and UTI’s were again more frequent. The future looked grim. and I was concerned that my Interstitial Cystitis was going to start ruling my life again.
The final answer to being symptom-free
I decided it was time to visit a new urologist as I had not seen one in eight years. Something of a record for me! Maybe the treatments had changed.? This urologist was a woman. The first time that I had seen a female urologist. And it was fantastic. Many non—invasive tests were organised just to be sure she understood what was going on in my body and to rule out any other causes of my issues. She suggested coming off the antibiotics and using d-mannose daily as she had been getting good results with it. To stop using the antibiotics made me extremely nervous but thought it was worth a try.
I got fairly good results from the d-mannose but it was expensive, as you need to take two a day to get the right strength and it was costing about $80.00 a month. I began looking for a cheaper alternative. That is when I discovered Uqora. A high strength d-mannose product (among other things}. I ordered it from overseas as it had really good reviews and I had nothing to lose. Everything else had been tried so why not.
That was twelve months ago. Since then I have not had a single infection or any antibiotics. Zero!
Why I am publishing my Interstitial Cystitis journey
How does it feel after 30 years of battling this illness, to finally be able to say I am completely symptom-free. Freedom would be the best word to describe it. Travel has always been my passion and now I can travel the world without the worry of being sick in a foreign country. I can eat what I want most of the time and be spontaneous and intimate with my husband whenever I chose. Sharing my story is the final step in the journey which has required me to take a leap of faith. It was something I felt I could never do because it was too painful and too personal but now I am ready.
My passion is now to help others, I even started importing Uqora to New Zealand and my little business “Her Store NZ” has been set up to help other women, just like me with intimate health issues, providing other women on a similar journey with a support network and to share my story. Interstitial Cystitis does not discriminate, men do get it as well. My focus is on supporting women as I feel it is where I have the most knowledge. Men, of course, are welcome to contact me for support, and I would encourage this.
Don’t give up. The journey may have been long but I now enjoy every minute. If I can help one other woman or man avoid the pain that I have gone through it will have been worth it. I can now enjoy being the woman I was designed to be. Happy, healthy and free. Thank you to all the people who have supported me on my journey, especially my wonderful husband.
Sandra Milliken. A survivor.
Connect with Sandra:
Blog and Store: https://herstorenz.co.nz/
MichelleDecember 3, 2019
Ive been using D-Mannose powder and its realitvley cheap. I looked at the Quora website was a little concerned that the target has vitamin C and Citric acid in it since many of us cant tolerate it. The D mannose powder works really well I put it in my tea in the morning its sweet because its a sugar.
Carolina Barrezueta EndericaAugust 19, 2020
Thank you Sandra for sharing your story. I have lived with IC for 23 years. Right now it has come back strongly. I have never had infections and always my urine cultures have come negative. Could d-mannose daily work for me? I am desperate. My life revolves around my bladder. Thank you,