gldn grl was founded in 2020, after a year of complete dismay prompted the urge for change.
My story with women’s health issues started when I was thirteen and began menstruating. It wasn’t long after that journey into womanhood began that I had troublesome problems. I suffered severe stomach pain, cramping and nausea.
It wasn’t until I was older that my symptoms became crippling. When I had my period, I became immobile. I experience excruciating pain in my abdomen, heavy bleeding, and massive blood clots. I remember having to crouch down under my desk at work, hide in the dark and lay in the fetal position. There have been times I can remember blacking out on the toilet from the pain, others where I lost myself in the haze of agony. If I am menstruating, a typical day means changing my super plus tampon every hour, finding roughly ten golf balls of blood clots each day, and not being able to walk my dog without either soaking through my clothes, or constantly fearing the latter.
I began the birth control pill when I was fourteen to help with my symptoms and regulate my period. I saw my first women’s health specialist in 2016. Now, to preface this, this was not my first run in with health professionals. I was diagnosed with stomach ulcers when I was thirteen after having a series of tests looking for any possible causes for my discomfort. I was also diagnosed with IBS and lactose intolerance.
When I met my first gynecologist, he explained that based on my symptoms it looked like I had endometriosis, and after an ultrasound confirmation, I also had a large cyst wrapping around my right ovary. We discussed the options for treatment, as endometriosis was completely new to me and everyone I knew.
Simply put, there is no cure. There are some treatments that have helped those with endo, but there is no one-stop-shop for remedies. He mentioned that what seems to work for many is to get pregnant, or have a hysterectomy (removal of my uterus). After I looked at him searching for the possibility he must be kidding, he laughed and said, but you probably want to have kids right? I was in my early twenties, and while kids were not planned, I thought it insulting that you could make a joke about removing the organ responsible for producing life.
I thought if someone can make jokes about a procedure that drastically alters your life, I should probably find a new doctor. However, I knew that finding a good gyno or doctor that knew about women’s reproductive health issues for that matter was no easy feat, so I stayed.
The list of treatment options began. I was taken off of my birth control pill as I was having severe periods, clotting, and pain despite the “regularity” the pill was supposed to provide. My gyno recommended Depo Provera, the birth control shot. It is an injection he put into my glute every three months. This seemed to help with my endo, but I had a new side effect occur; alopecia. I first noticed it in the shower when washing my hair - clumps of it fell out. I reported this to my doctor who told me that alopecia with the shot has a one in 1000 chance of occurrence. I was that unlucky one.
I had my first surgery in 2016 to remove the cyst that was strangling my ovary and determine if endometriosis was present (there was no test to definitively prove if one has endometriosis but to take a look inside). They found that I did in fact have endo covering several of my organs. They also found a hard lump of what they presumed was endometriosis that they could not access in that type of surgery. I would have to see a specialist.
I was referred to the women’s health centre in a local hospital - what I presumed to be my saving grace. I had multiple very painful transvaginal ultrasounds (painful because I seemed to develop another symptom of severe pain with any form of insertion or pressure), discussion on birth control, and talk of another surgery. I was put on a new pill where I was only to get my period every six months, but was instructed to skip it due to pain, and we scheduled my next surgery.
Now, while it seems like a good thing I’ve already had two surgeries, I was in my early twenties when this was happening, meaning that I was creating a lot of scar tissue in my body at an early age; something that can end up causing additional problems.
They removed more endo and found a new discovery, I have a bilateral uterus. This means where my uterus should have one path, there was a little wall (presumably of endo or scar tissue) that turned it into two. This is something that causes high miscarriages in women.
After discussing my surgery and diagnoses with my doctor, I told her that everytime I try to talk about it I cry. I was crying at happy commercials, oversensitivity, and basically anything. The diagnosis had pushed my depression to a new level - I wasn’t ready for a lifetime of pain. She informed me that when her patients receive diagnoses like these, it’s important to grieve and come to terms with it. She told me I had to see a therapist.
The next step was to address my uterus. A fun procedure - with the longest scissors I’ve ever seen - to snip out that extra wall. During the procedure I experienced horrible cramping - something I was used to. The nurse told me what I was feeling was equivalent to labour pains, as they were putting pressure on my uterus. The car ride home was one of the longest and most painful of my life.
A new hope arose when I went in for a checkup and my doctor at the hospital told me that they were conducting a research study and I’d be a prime candidate based on my symptoms and confirmed diagnosis. I went through some basic admittance questions and was successfully enrolled in the trial. Each night, I had to answer an e-diary with questions on my pain. That diary was the bane of my existence, but if it meant I could get a trial drug that would help me, it was worth the nuisance.
Being a part of the trial also meant frequent access to the doctors, something that is extremely hard to come by. Appointments at the hospital are booked a year or more in advance, and unless you call every single day asking for any cancellations slots, like I did, you will not get another appointment.
In order to be eligible for the trial, I had to make some changes. I was no longer allowed to take my Naproxen, Motrin (the drugs I used for pain) or any other medication except for what they gave me. Additionally, I could not take my birth control pills. Now, this was a big hurdle to get over as the pill was the one tiny thing that moderately helped me as it prevented my period, which meant a lot less pain.
But again, I thought the chance at a miracle drug was worth it and went ahead. During my routine checkups, I was examined and diagnosed with vulvodynia, a new disease that explained the extreme pain with insertion or pressure. A new hurdle. This was especially devastating as I was experiencing severe pain when trying to be physical with my new boyfriend.
A few months in, I was notified that my trial had been cancelled as they had bad results with lab rats - ovarian cancer. This was a low point for me. I now had two diagnoses and no possible treatment. In fact, I had actually gone backwards as I had to stop my treatment altogether for the trial.
I now have no solutions, only to try and skip my period even though it comes when it wants in full force, staying longer than it should. I manage my depression and anxiety, but it is always there. I have come to terms with my diagnoses, but that doesn’t mean it makes it easy. There is a strong connection between your physical and mental health.
gldn grl was made to help people like me, supporters or women in general to raise awareness about women’s health issues, the hurdles and try to find a little bit of gldn in our days everyday.
Jewelry has always been a huge part of my lifestyle. I associate meaning to each piece I wear and never take them off. They’re a part of me. I hope that when purchasing a piece you know that you are making a difference and wear it as a reminder to keep trying to find that little bit of gld everyday.
You can also read more about my story on the EndoAct Canada.
I décide to read about You,because i wanted to buy a cap from You,I am an old Lady,that live wearing caps …and afther reading it…i could tell you,that I am 70 years old and since i am 9,i have pain " down there" i se that terms,because the doctors never found really what i have…afther all the invasives surgeries i had…i am still in pain but nobody knows why…i used so many kinds of drags…that stop working afther a while!!!! Today,i am drug free and i do meditation ,Yoga in the mind and ask something or somebody Greater then me to take care of it.I might never know why my body acted out like,but for today,i am fine! Sending You courage my Dear and i Will also by some of your Gold… with LOVE!
I am so sorry to hear that you have been going through all this. Thank you for sharing your story and bringing awareness. <33