Va Va La Lu Lu!
Lu Lu Padmore, creator of blog and Insta community @thepelvicwarrior
Lu Lu has become a virtual friend, a pelvic sister and Va Va Womb cheerleader, and we absolutely return the love because she really is a warrior, a supporter and an advocate for pelvic pain. She talks openly about her vulva, her vagina and the experiences she has been through to educate and help the next pelvic warrior. She’s building a community and sisterhood, ensuring no one feels alone on their stigmatised pain journey. Lu Lu is a mother of two and has been through it all when it comes to her pelvic area, greatly impacting her mind along the way. Pelvic pain is not just a medically physical impact, it can be trauma induced and emotionally traumatic.
Babe, you got this. Your pelvic voice matters, here is Lu Lu’s pelvic story.
Lu Lu’s story
I never thought of myself as a Pelvic Warrior until this year, when I finally found my voice and decided to tell my pelvic pain story to the world. My hope was and still is, to share my knowledge of my 13+ years living with pelvic pain. To help prevent some of the medical trauma I’ve been throughtrying to find a diagnosis, and to be a support for any womxn who need me.
Any type of pelvic pain has the same detrimental physical and psychological affects on a womxn. Our pelvic bowl is the centre for our creativity and defines us as womxn, so when things hurt and aren’t right in this space, we can feel lost, less of a womxn, abnormal, and very alone.
Like many pelvic pain warriors (I don’t like to use the term ‘sufferers’ or ‘patients’), I have more than one pelvic pain issue. I have at times, and in varying degrees of pain, a condition called Vulvodyina. Vulvodyina is a blanket term used commonly by doctors when they are unsure of the rootcause. However for me, I have a painful burning sensation when provoked at the vulva (the vagina opening). These symptoms are very consistent with most women with Vulvodyina, and pain can vary from mild to extreme pain all the time (unprovoked Vulvodyina).
The other conditions I have are Painful Bladder Syndrome, which is similar to Interstitial Cystitis but without constant urgency and frequency. My bladder is just sensitive and flares on the right side. This is due to the third condition I have, that links all my pelvic pain issues together, which is called Pudendal Neuralgia (PN). Not many people really know much about PN, or in my case Pudendal Nerve Entrapment, so I shall explain a little about the importance of these nerves.
The Pudendal Nerves branch off from your sacrum, both on the left and right side. They run through your pelvis, supplying the nerve endings and sensations to your anus, vagina, urethra, bladder and clitoris – very important nerves indeed. Nerves like to have space to move and stretch, but if they get aggravated from a fall, an accident, aggravation from surgery, or child birth; it can trigger a painful conditioncalled Pudendal Neuralgia. There is also a condition called Pudendal Nerve Entrapment, which is what I have. This is mostly a congenital condition where one or both nerves (bilateral entrapment) are entrapped, caused by compression of the pudendal nerve as it weaves through various areas in the pelvis; so through muscles, tendons, bone and ligaments.
As a teenager I’ve always has issues with my pelvic bowl. I used to get reoccurring UTI’s when I became sexually active. Naturally consuming loads of antibiotics upset my gut health, so was prone to yeast infections. I would also get crippling electronic shock type pain in my rectum, from a very young age. I just thought it was normal for everyone, so never told my mum or anyone. I didn’t know it was to become my arch nemesis later in life – Pudendal Nerve Entrapment.
I first experienced Vulvodyina when I was 27, I was working a highly stressful job, and I was in a not so healthy relationship. I’m a strong believer in the mind body connection and looking back I believe these where contributing factors to my Vulvodyina. This first experience was related to hyper-tonic pelvic floor muscles, meaning they were tight but weak. At the time, over ten years ago, there was not much info about Vulvodyina and there certainly wasn’t any amazing Instagram communitiestalking freely about vaginas and pelvic pain conditions. Like many of us have done, I diagnosed myself and found a pelvic floor physio, who worked with me for six months to get my muscles back to a normal functioning state. It saved my life, as the constant burning and discomfort was extremely traumatic, and it all went away after intense physio treatment. Yay! I felt like I had my life back again –for a little while.
I developed Painful Bladder Syndrome when I was 28, after a really nasty UTI. Again it was a time when I was still in my stressful job, had just been heart broken for the second time by the same partner, and all this stress led to my periods stopping for over a year. My hormones where all over the place, and what I know now was that I wasperimenopausal due to all this stress. When your body is in that state, you have very low estrogen. Estrogen is so important for your pelvic bowl, as it plumps up, supports and thickens the lining of your vagina, urethra and bladder.
That particular UTI was so painful I would match it to child birth, which I’ve been through twice, so can say it with confidence.
I managed to get through the night and drove myself to a doctor to get a script for antibiotics. The problem was that the infection went away but the symptoms didn’t. Anxiety and depression set in – to say I was a mess is an understatement. I was now on another pelvic pain quest to figure out what was happening to me, why was my bladderin so much pain all the time? I had a cystoscopy which ruled out Interstitial Cystitis and it was only when my gynaecologist had the sense to check my hormones did he find out my perimenopausal condition. He put me on birth control which boosted my estrogen and in amazement my bladder symptoms went away completely. However, the increase in estrogen, and me drinking a lot, meant I started to get more yeast infections.
Guess what happened next…
Vulvodyina started again, this time much worse, and it wasn’t muscle related, it was more in the skin, so the nerve supply (the pudendal nerve supply). What I now know, is that UTI when I was 28 triggered my underlying pudendalnerve that is trapped in ligaments on my right side to get aggravated, and was most likely the cause of my bladder pain and Vulvodyina symptoms. I was just a perfect storm for pelvic pain, everything was angry.
I was sent to a Pain Clinic here in Australia, because no doctor could figure out my complex case. My pain specialist did an MRI, and a diagnostic nerve block in my rightpudendal nerve. I was now 32; I had had my first baby vaginally by then and was formally diagnosed with BilateralPudendal Nerve Entrapment. Luckily for me the vaginal birth of my eldest daughter total fixed my Vulvodyinasymptoms, but mentally after the Pudendal Nerve Entrapment diagnosis, on top of my painful bladder, which came back after 12 months post birth – I was a broken womxn. I was happy to finally have a definitive diagnosisbut I was told I would never get better and it was a condition I would have to live with forever.
A life sentence of pelvic pain.
I would have to “manage it”. That just didn’t sit well with me. It never has.
Years of medical hot potato, passing me around from specialist to specialist, not being able to enjoy things in life like pain free sex, alcohol, delicious spicy or acidic foods, and even some exercise - my mental health was shocking.
I was extremely depressed, I had no one I could talk to who really understood what I was going through, I knew no other womxn who had these issues - I felt so abnormal, so alone, and so angry. I would scream into a pillow “why me”, all the time. I had no rational control over my emotional state, and it took a toll on me. I was suicidal at times, and it put a lot of pressure on my relationship. My newly wed husband didn’t want to see me in such pain physically and mentally. I withdrew from everyone and he lived with the depressed Lu for a long time. Not the happy-go-lucky Lu I once was.
Another piece of the puzzle, which I think is relevant to many pelvic warriors, is something that happened to me when I was 16. I was sexually assaulted by an older boy one night in the city. There was a group of us out in town and some how we were separated from the group. He was 18 and went to the all boys school that we hung out with. After that night, he spread a terrible rumour about me, which saw me ostracised by most of my friends, as he was seeing on of them; and an all girls school can be very cruel. I was called a slut and I’m sure a lot of other names by the boys. Being so young and blamed by everyone, I took it all on - all that blame, guilt and shame for over half my life. I think this is very common for sexual assault survivors when it wasn’t a violent attack. I buried that shame and blame so deep, thewhole experience - well what I could remember of it. I told no one, because I thought it was my fault – I was told it was, so I believed it.
It wasn’t until 2018, when seeing a psychologist about my pelvic pain, that she told me it wasn’t my fault. That I was sexually assaulted. It’s taken two years for me to really believe that, and a lot more psychology sessions to talk about it, and work through those feelings of blame and shame. I’m still working through them.
Why it’s relevant is that I believe the body and the mind never forgets, so maybe some of my pelvic pain issues arerooted in what happened to me as a 16 year old. A young girl, that was too intoxicated to say yes, or say anything.
There are so many other parts to my story but we’ll be here forever, so I’ll fast forward to the beginning of 2019, I just had had a nerve block trans vaginally and botox injected into my pelvic floor muscles which did not help, instead it skyrocketed my pain. I was mismanaged after that procedure, which really messed with my already fragilemental state. I just couldn’t take any more. I didn’t want anything to do with specialists; I was done with the medical world.
Around mid 2019, I hit rock bottom. I literally had a mental brake down (I had two children by then); I was having panic attacks and couldn’t leave the house. All I could do was sit in my garden, I hadn’t really meditated before, but that’s when I started, just being still in my garden. I also stumbled across the documentary ‘Heal’ on Netflix, and the story about Dr Joe Dispenza changed my healing path forever. I thought if he could heal himself from a horrific back injury through mediation, then that’s what I was going to do.
I started reading everything I could about the mind body connection, neuroplasticity and how pain works. I meditated every single day, sometimes for two hours.
Slowly I noticedimprovement with my anxiety and depression, it just all left me. I also noticed small improvements to my pelvic pain. Most importantly I found myself, the real me-
I started having a glorious love affair with myself, and that is the path I am on now.
I started my Pelvic Warrior Instagram page and blog when COVID hit, and it has contributed so much to my healing. Helping others navigate some of the things I’ve been through has been so rewarding. I just love helping womxn.
In June this year I started a free Makeup Touch Therapy class that I run every month. Being a Professional Makeup Artist and Fashion Stylist, I know that applying makeup is a form of art therapy which is very beneficial for people with chronic pain. I also know that touch therapy is another great therapeutic tool, so I developed a course that combined art, touch and self care/self love. It not about slapping on makeup, it’s about feeling sensations, being present in the moment (mindfulness) and ultimately teaching basicmakeup skills to help pelvic pain warriors look good and hopefully feel better. The feedback so far has been amazing, and is so rewarding to help womxn build up their confidence in themselves.
This is the amazing healing path I’m on now. I love my pelvic warrior community and teaching my makeup classes. I’m now currently working on a guided meditation that is specific for pelvic pain warriors, which will hopefully be ready soon.
So that’s my story. I’m a pelvic warrior here to lift womxen up when they need it, and create awareness like the work of VaVa Womb - breaking down social stigmas. I’m also passionate about raising awareness of medical mistreatment, as that is a huge issue for so many pelvic pain warriors, and of course to talk about my journey in a hope it can help others.
My journey isn’t finished, in June this year my Pudendal Nerve started playing up a lot, so I made the decision to go back to my PN specialist to have another nerve block (not through the vagina!). This doesn’t mean I’ve given up on the power of the mind and how it can heal, but right now I’m using a multidisciplinary approach to my condition. Using all the tools I know to ultimately be pain free one day. It’s only a matter of time.