My name is Michelle and this is my pelvic pain story.
It is Pelvic Pain Awareness month so I thought I would dive a bit deeper, get vulnerable and open up in a blog post about my long journey with pelvic pain.
I haven’t been as vulnerable with you all as I should due to the irrational fear of what others will think (family, friends, coworkers or exes who stumble across this page). But since I have grown so much as a person since starting this blog and listened to The V Hive: Episode 67 this weekend, (where Hannah M. and Gabrielle M. discuss their pain and emotions that come along with pelvic pain)… today I am ready to let it all go.
So… if you are someone I personally know(n) and don’t want to hear me talk about my vagina and bladder, please find your way out of this browser window.
~ 8 years old
I had a bad fall on my tailbone going down an icy tobogganing hill with my sister and dad around 8 years old.
Both my dad and myself got injured. He healed. I didn’t.
I dealt with the pain because I was embarrassed of the injury being so close to my bum. I didn’t want to use a donut pillow (Which I currently NOW use… funny how it came a full circle 23 years later).
My body adapted and I began to learn to live with the tailbone ache and pain because my doctor said that I was fine.
I personally believe this is when my “guarding” started.
12-15 years old
My chronic pelvic pain cycle started at the onset of my first urinary tract infection around 12 years old. I was treated with antibiotics and from that point the UTI-Yeast infection cycle began.
I went a few years with awful vulvar irritation that felt anywhere from a burning raw feeling to ‘paper-cut’ like pain from the various medications, creams and suppositories my family doctor prescribed me to desperately try to get things under control.
On top of all of this, I started my period around 13 years old. They were painful and heavy. My GP then referred me to a Gynaecologist at 15 years old after he couldn’t resolve my vulvar pain and UTI’s.
A vivid memory I have is being incredibly nervous in the obGYN’s waiting room around so many pregnant women. I felt incredibly out of place and was praying this doctor would have the answer or ‘pill’ to make this pain go away.
I was called in to the exam room, where from the exam and a Q-tip test, she threw the words Vulvodynia, Vestibulitis and possible Lichen Sclerosus at me and explained it is pain that some women unfortunately have to endure and that I needed to see a Dermatologist to confirm a Lichen Sclerosus (LS) diagnosis.
I asked what LS was and she explained it was an autoimmune skin condition and because my mother had Lupus and RA, it isn’t surprising to see the autoimmune connection.
When I got home from that appointment and I went straight to the computer to search these unfamiliar words she wrote down for me.
What a bad idea that was…
I searched Google in 2004 (maybe yahoo? lol) for Lichen Sclerosus and the first page I read explained how the skin condition LS ultimately closes up the vaginal canal.
Then I read about Vulvodynia and Vestibulitis which was the icing on the cake. I just balled my eyes out thinking I won’t ever find anyone who will love me and that I would never have sex.
I was worried I would be an unmarried virgin for the rest of my life.
Looking back, I can now see how I easily castastrophized that situation, but how else would a 15 year old girl who is going through puberty react to that information?!
In hind sight, this absolutely could have been a significant ‘trauma’ in my life.
Soon after that, I saw a dermatologist and she explained that she did not want to perform a biopsy to confirm Lichen Sclerosus based on my young age because of the scar tissue and pain that develops in the area afterwards (Incredibly grateful for this doctors judgement!!). She prescribed me Clobetosol cream and monthly Diflucan and my skin and vulva began to improve. I still felt pain but I could manage it better and hide my pain or discomfort from others.
I was embarrassed that the doctors and I were not able to fix my pelvic pain. I was doing everything the doctor told me to do but yet, I wasn’t getting better.
15-24 years old
From 15 years to approximately 24 years old I was constantly battling urinary tract infections, especially when I became sexually active.
Let’s talk sex for a second… sorry mom and dad lol.
I cannot say that I have ever had completely pain free intercourse. The night I lost my virginity I never spoke up about the pain to my partner out of embarrassment. The pain was horrible during the act and… for about a week after.
When you grow up, you hear that the first time is not enjoyable for most but I knew deep down it was not suppose to hurt THAT much. I unfortunately pretended it was the best thing in the world to make my partner happy and hoped it would get better the more we tried.
Spoiler alert: It didn’t.
I would constantly go to my doctors and explain my distress and after I would get swabbed for STDs I would get told to try to relax before sex, use lubrication, given the “Proper hygiene shpeel”, prescribed an antibiotic and sent out the door.
Another big red flag in my journey was having my sexual history doubted by the doctors. I understand they always “had to be sure” but they would make remarks about how men sometimes sleep around so better ‘safe than sorry’ when it came to testing.
These indirect remarks had an enormous impact on my self-esteem and relationships over the years without my partners ever really knowing how much it all affected me.
Again, I was embarrassed and I didn’t want them to think I was broken which would then lead them to “sleep around”.
My late teens and 20s were filled with a lot of emotional turmoil that I don’t think anyone was ever aware of. I tried to “be” and “feel” like a normal 20 something but I was constantly in a fight against my body.
Growing up, I had more male friends than female friends, so imagine the amount of sex related conversations I’ve been apart of!
When things like “I hooked up with [insert name] and [insert an over exaggeration of a 19yo mans sexual encounter]” were said, a young woman [me] begins to believe she’s missing out on something that naturally should be easy and enjoyable.
I was devastated.
I kept up the facade of being healthy for years as I was trying to figure out what was going on with my body. I even had a cystoscopy done with my first urologist to rule out anything wrong with my bladder, which was a traumatic experience all in itself. You can read my blog post about that experience here.
As the years went on, I dated, got/pushed through university, graduated and started an exciting advertising career in Toronto, Canada.
In 2014, my go-to UTI antibiotic (Marcobid) was not working on an infection so my GP prescribed me Ciprofloxacin, instead. Within taking 1 pill, I had a severe reaction to my achilles tendons. I was unable to walk without sharp pain accompanied by tightness, and the feeling like my tendons would snap.
Click here if you would like to know more about the FDA warning regarding fluoroquinolones antibiotics like Ciprofloxacin.
At this point in my life, in 2014-2015, I was not in a healthy, respectful relationship, my sick days at work were maxed out, I was not taking care of my body, and I couldn’t keep up with work because my mind was constantly on my pain. I was really struggling holding it all together.
It wasn’t until my empathetic and understanding manager at the time directed me towards a Naturopath located around the corner from the office.
My life changed.
That Naturopath was able to help me get a handle over my recurrent UTIs. I was introduced to probiotics, Berberine, DMannose, Uva Ursi, and acupuncture which allowed me to get a better hold on my health and life.
Things got a bit better. I still had the vulvar pain and my menstrual pain would keep me bed bound for a day or two but I felt more in control than I ever had.
I began to get more confidence, dumped the good-for-nothing boyfriend and moved into a better place mentally and physically.
Fast forward to Fall 2017.
*Funny story actually:We were in the ER for a bad flu of his and I was unable to sit and was constantly leaving him to go to the bathroom. My boyfriend suggested I check in to the ER too, but I am stubborn and explained it’s probably “just another uti” that needed a different antibiotic to treat.
Well, fast forward a week or two after treating the UTI, and my painful symptoms persisted. (The best way I can describe this pain is if someone is sticking a hot double edged sword or poker up your urethra AND vagina.)
I was tested for everything under the sun but my results came back normal and inconclusive. Yet I was in debilitating, bring-you-to-your-knees, pain.
My Gynaecologist threw the word Interstitial Cystitis at me and referred me out to a Urologist plus referred me to start pelvic floor physical therapy as soon as possible.
I think my reaction to physical therapy was probably, “excuse me for asking… but physical therapy for my vagina?”.
I was confused.
There was also a discussion about Endometriosis but I was dismissed again after she told me I do not have endometriosis because “I have not tried to conceive and failed”.
I walked out of there with the Pelvic floor PT referral thinking, what the actual f*ck. But once I began pelvic floor treatment I learned way more about how my body worked and why body was dysfunctioning and causing my symptoms.
Pelvic Floor Muscles causing pain was something that I have never heard from any medical professional in over 10 years. I was skeptical at first but it was the first time in my journey that I was getting answers and validation to the pain that I have felt for so many years.
Many tears were shed in the first few appointments out of the release of built up emotions I didn’t realize I had.
This was the starting point of my healing.
I had to wait 6 months to get an Interstitial Cystitis diagnosis so while I was waiting on that appointment, I began to do A LOT of online research on forums and Facebook to find the best Endometriosis OBGYN specialist based on patients experiences.
As I started to advocate for myself, I made a list of the top 5 doctors and then asked my GP to refer me to the first one on my list.
At that appointment this specialist did not dismiss my pain and for the first time in my life, I felt heard and understood. He explained after the (painful) examination that I am dealing with multiple pelvic pain generators:
Pelvic Floor Dysfunction (Already in treatment at this point)
Possible IC/Bladder Pain Syndrome (Need a urologist to diagnose)
Possible Endometriosis/Adenomyosis (Need surgery to diagnose)
It was finally in July 2018, at 29 years old, that I was officially diagnosed with IC/Bladder Pain Syndrome and in August 2018 that I had Endometriosis excision surgery.
The surgery pathology confirmed an Endometriosis diagnosis but the outcome from the surgery did not have an affect on my bladder and pelvic pain.
Since 2018, my healthcare team and I have been trying to heal my chronic pelvic pain with a biopsychosocial approach. This includes physical therapy twice a week, mindfulness and medication.
The Biopsychosocial model of chronic pelvic pain:
It has been almost 2 years of treatment but I am not healed.
I still feel like I am on the verge of a UTI all the time, I can’t sit for very long, I can’t walk without pain but I am not giving up hope and neither should you.
It is possible.
I hear success stories all of the time from Pelvic Floor PTs, Pelvic health books and from others reaching out to me through The Happy Pelvis.
We just have to remember to try to be open to attempting different treatments despite the anxiety that holds us back because you never know what impact one treatment OR A COMBINATION OF TREATMENTS will have on getting our lives back.
If any part of my story resonates with you, please don’t hesitate to reach out!
Below are some links to my past blog posts that might interest you:
May is Pelvic Pain Awareness Month
8 Natural Tips For IC + PFD Flares
12 things to do instead of watching Netflix when you have a Chronic Illness
How Pelvic Floor Physiotherapy can help IC pain