I know I've given a brief introduction about myself and the chronic pelvic pain conditions that I've experienced, and at this present time continue to experience, but I want to back track a little and take you through my past, so we can get to know each other better.
If I want to really take it back, let's begin when I started having sex in my later teens. I experienced a lot of Urinary Tract Infections (UTIs) or Cystitis and it wasn't until I was in a stable relationship in my early twenties did I get on top of them - many prescriptions for antibiotics later.
I learned about sexual health from a work colleague - to always pee after sex, and that changed the game for me. I then ensured I went to the toilet before and after sex, had a shower after sex and peed again just for safe measure. I started taking probiotics and the holy grail at the time for me - Cranberry Tablets.
The other strange issue I always had for my whole life, was I would sometimes get a crippling pain in my rectum so bad that I'd have to stop walking, stop talking and sometimes fall to the ground. I figured it was normal.
Fast forward to 2008 when I was 27. I was in a not so healthy relationship and I got a really bad UTI. I was down the South Coast of Australia with my then partner and I went to the local country hospital to be admitted and treated with antibiotics. This was the first bladder infection I'd had in about 5 years. I took the medication and in the morning was feeling better. Then out of the blue I started experiencing severe abdominal pain....back to the hospital I go.
Now remember I was there with a UTI the night before (more on this). I was rushed in, bloods taken and my white blood count was up...I was fighting an infection. The UTI, but this wasn't really taken into account and before I knew it I was being prepped for surgery for an appendicitis. Naturally after such surgery, you're on heavy antibiotics to stop any infection.
After that surgery, I started getting lots thrush (or yeast) infections, which then led to Vulvodyina. I got on top of the candida in my gut through diet and probiotics but the vulva pain stayed. I was lucky, because I was a vigilant Googler, and found a pelvic floor therapist who helped me after 6 months of not knowing what was wrong with my vagina. I took some time off my very stressful job and worked with him intensely. My muscles were hypertonic, meaning extremely tense but weak. I worked with a home biofeedback machine and dilators and after 3 months I was 95% back to normal. I wish that was the end of the story.
In 2009, I was very stressed, said bad relationship had ended again - I was heart broken, so my body sent me a clear message by stopping my periods. I didn't think anything at the time except "great, no more periods!" If only I could tell my younger self what a strong message that was. That something wasn't right.
I got another UTI during this 'non menstrual period time' and it was a bad one. I would equal it to child birth (which I've also experienced). It came at night and whilst I should have called an ambulance, I rode it out til I could drive myself to a doctor in the morning. I took the antibiotics and the infection went away but the symptoms never did. That icky feeling in your bladder, that constant uncomfortable feeling, always wanting to pee. Not fun.
Here in started the quest of finding out what this was; I was devastated reading what Interstitial Cystitis (IC) was, completely stricken with anxiety and depression. I had a cystoscopy and was cleared of IC but that didn't fix the pain, fix me. I was in the dark, and sent on my way. I went to my gynocologist (wonderful man) and he put some dots together for me.
Not menstruating + ongoing UTI symptoms without infection = "let's check her hormones".
He was on the money. I had extremely low estrogen and what I now know is that estrogen is so important for the vulva, the vagina and the bladder lining. It plumps it up. Low estrogen means a thin bladder lining, you're more prone to UTIs, vagina atrophy, vulva pain; loads of issues.
He put me on The Pill (birth control) and it was like someone had waved a magic wand. My bladder symptoms where gone. Totally gone. The bad side to this part of the story is that I started living again, partying again, not looking after myself (I was a party girl), and with an increase in estrogen from the pill and drinking a lot, I started to get a few yeast infections which started a new kind of Vulvodyina where I felt pain in the vulva tissue. Sex was painful but I just pushed through as I was so happy not to have the bladder pain.
Fast forward to meeting my now husband in early 2010, every time I tried to go off birth control the bladder pain would come back, so I said to him, "I'd really like to get off the pill to see why I can't menstruate so if and when we want to have a baby I know I can". He was a strong man to stick around, only being together for a short time and with the vagina issues.
I worked with an amazing Integrative GP in Adelaide who worked on my hormones, and low and behold I came off the pill...no bladder symptoms. Mike drop! The reason being was that I was pregnant with my first baby. You have high estrogen levels when you're pregnant.
Fast forward again to after my daughter's birth, the end of August 2011. Somehow the vaginal birth put a reset button on my Vuvlodyina and it completely went away, but there are always two sides to a coin.
I noticed about 6 weeks after the birth, my bladder symptoms started to come back. Not to a point where I was worried but I took note. I was breastfeeding her and at the 12 month mark, those bladder symptoms came back ten fold. I was in pain, really bad pain. It was awful.
I stopped breastfeeding my baby and then when on the quest to find out what the hell was going on...again. I was a new mother finally finding my groove after doing the new born thing, mastering breastfeeding, and figuring out the whole 'how to be a mother', to my whole world being turned upside down yet again. Going from loving life to, "no not this again, anything but this!"
My journey led me to a few more cystoscopies - showed nothing, which led me to the WHIRA clinic in Sydney and after an MRI, an in-theatre nerve block and test with some blue dye (very technical), I was diagnosed with Pudendal Neuralgia (remember the strange rectum pain I had all my life? That was PN). I was put on daily medication which completely killed my libido and sent on my way.
Now this seems like a long story - it isn't. It doesn't take into account the mental anguish I've been through, going from doctor to doctor, the pain, the pain killers, having a second baby, more bladder pain, new medications, a benzo addiction, failed medical procedures, psychologists just not getting me, opioid addiction, and again just the mental trauma both to myself, my family and my husband. The lost connections with friends, the forgetting who I am, the mourning of who I was (a girl who traveled the world on her own), the mother I wanted to be, the suicidal thoughts, the attempts on my life. The damage. All the damage.
Every story has a happy ending right? I just haven't written mine yet.
I'm still here, still standing and I have found a new way forward after 12 years of all of this 'stuff'. I've finally stopped chasing the symptoms, and like a student again, I'm learning about how the mind body connection works, how pain works, how neuroplasticity works. It's truly been my saving grace. I have a long way to go, I'm still dealing with the mental trauma and the physical pain, but I'm working on that.
That's where I'll end this very long story but I do want to say, whilst it looks like a very sad journey, I wouldn't be the person I am today without all the pain, the trauma. I'm stronger now, I am here to serve, to help others who suffer from Pelvic Pain, who need answers, who are finding their own path.
I'd like to also add that, I myself don't put my health in the palms of a specialist anymore. I only work with my wonderful local GP to manage my medications and with a good psychologist to work on the mental traumas. I made the firm decision to choose the mind/body path about 12 months ago, and I can feel the mental changes every day, every meditation, I'm also starting to feeling the physical changes, but...
the body takes time to catch up with this mind.
If this is something you want to consider, please read my disclaimer as I'm not a medical professional, just a warrior with a strong will, a lot of knowledge and determination to create massive awareness of pelvic pain. It's not normal.
Love & Healing
Lu Lu x