*** Warning… there are several parts of this article that can be very trauma triggering about menstruation and pain, so please read with caution if that may bother you. ***
I never thought I would be writing an article revealing so much about my personal life as I tend to keep my personal story more private in nature. However, I share my story and this information with the hope it brings some guidance to help others that may suffer at the hands of this horrific affliction.
For context, I’m an herbalist, which means I use plants as allies to help the body shift to a healthier state whenever there is an issue, whether it’s physical, emotional, or spiritual. Unfortunately, many people in the world who are on the healing path often go through health issues partly for the purpose of being able to help others who come to them. This is my story of having to go through just that.
What Is Endometriosis?
Endometriosis is a “disease” that about 10% of the female bodied population suffers from. With endometriosis the cells that normally make up the endometrial lining of the uterus end up residing in other places of the body, besides just the uterus. So every month as the lining grows due to the natural change in hormones, these cells also grow.
However, unlike the “normal” cells in the uterus that shed in the lining via your monthly menses, these abnormal cells have nowhere for the extra growing material to go. This in turn causes high levels of inflammation in the body that can result in tremendous pain during your monthly menses, ovulation, or even on an everyday basis. In addition, these cells are like their own little hormone factories and send your hormone cycle out of control with an excess of estrogen leading to further health ailments.
If that wasn’t enough, many women often go undiagnosed and without any help and are left to suffer alone. To explain I will need to elaborate on my own personal journey with endometriosis…
My Story With Endometriosis
My menstrual cycle was very regular and I would bleed almost like clockwork. My menses came every month without much pain (although it was a very different story when I was younger) and with very little negative issues. I actually loved getting my moontime (the word I use to refer to my menstruation as we bleed following the moon cycles… future blog post) and embraced it. I loved the dreams that came and the inner connectedness I felt to Gaia, and to the generations of women that came before me. I also found it a time of empowerment due to my spiritual connection.
All that changed one day when my moontime was just ending and I awoke during the night with a cramping sensation in my abdomen. Seeing I just finished menstruation this was very abnormal for me. Could I be pregnant I thought… as this was the first thing I felt immediately upon conceiving each of my two children. I’m someone who considers myself pretty highly aware of my own body and notices the subtleties when something is different (a blessing and a curse at times). So with this new feeling, I knew right away something was different.
The cramping lasted for several days. Then it turned into actual pain. This was not normal for me so I immediately made an appointment to see my OBGYN. After explaining to her what was going on she did the typical pelvic exam.
Unsure of the cause she told me to take ibuprofen every 6 hours, every day, like clockwork, for the next 1-2 months. She told me that sometimes you need to take ibuprofen to reset your cycle, as if your body somehow forgets what to do I’m assuming she was implying. ARE YOU KIDDING ME was my reaction. Now remember I’m an herbalist. I personally stay far away from all types of NSAIDs. It’s a huge subject but let me just sum it up with the fact that it can really have a toll on your digestive system. I knew for me it wasn’t what my body needed and went back to my world of living.
The pain continued, but now it started progressing and getting stronger. I called the OBGYN office a few weeks later and asked to have an ultrasound and they agreed. A few days later I found out I had endometriomas in both ovaries and they were pretty impressively huge (doctor’s words). Endometriomas are a type of ovarian cysts in which you have endometriosis inside the cysts. Ovaries form different types of cysts often, and most can disappear on their own naturally. This type however is a more complex issue.
As I was originally seeing a midwife I now had to see an “actual doctor” in order to get my results. He gave me the official diagnosis of endometriosis and said he would have to do surgery and remove my ovaries right away. This was the beginning of a horror I never imagined to go through.
Although I ironically just studied endometriosis in one of my herb schools a few months prior to this happening, I still felt I knew far too little about my new diagnosis. Instead of going through with the surgery, I decided to go on a huge research quest to learn as much as possible and the suggestion of requiring my ovaries to be removed to solve an issue I never knew I had until a few weeks prior didn’t sit well with me.
I switched to another doctor (mainly because the male doctor made me feel very uncomfortable in how he spoke to me… or rather how he just stared at me with far too long pauses without speaking and didn’t offer any explanations for the questions I had).
The new doctor, although having a better personality, immediately told me she would be seeing a lot of me as I have many surgeries in my future and they will have to keep removing more and more things. Things. THINGS she said. AKA my ovaries, my uterus, every single thing that is my womb and makes me feel my power. Just rip out the insides of my solar plexus (where your will, your desire resides). So then again, I went to find another doctor… now number 4.
Doctor number four was less pushy about needing surgery and left it up to me. She told me that hormonal birth control, however, just as each of the previous ones said, would be a necessity. Basically, my body doesn’t know what the hell it’s doing and I need to shut part of it down. Medication is often the only solution besides surgery that the medical world offers, and sadly, neither one will fix the problem as their is no official cure. Birth control and ovary removal are all they can suggest, and both just shut down the hormones your body naturally makes, however, messing with hormones should never be done so quickly as it creates a cascade of reactions within the body. Plus, endometriosis itself is like a hormone factory, so removing organs or taking synthetic hormones has no full chance in solving the problem.
Endometriosis; The Disease Of Pain
At the root of the symptoms of endometriosis is one thing… pain.
We’re not talking minor pain either. No, sadly, it’s more often gut wrenching 12/10 level pain. I truly don’t think there is any other condition out there that equates to the level of pain women who suffer from endometriosis have to experience. Let me share with you a little about my experience for perspective.
This is the time of my life I label as pure hell. A hell I wouldn’t wish upon those I despise with my whole being. This is the period of my life when I learned the lesson of how much pain the human body can cause itself and the true loneliness that endometriosis can cause.
During that time period and for the next year if I was lucky enough to fall asleep at night the pain would wake me up only a few hours later. The pain felt like childbirth but without the relaxation of the body in between contractions. It felt like my insides were trying to burn their way through my body to get out. This went on for over a year, almost every single night, and sometimes during the day.
I’m someone who loves to plan, loves to have a morning routine, and loves to enjoy life. None of this was possible or is possible when you’re stuck in a situation of deep pain. There is nothing else in the world that will rip your power out of your body so fast and turn you back into an infant child rocking back and forth in hopes of a small amount of relief rather than pain. I feel so greatly for all the women in the world who have had to go through this for years and years. And especially for the ones that haven’t been listened to and told it’s all in their head. Ten years is the typical time it takes the average woman to get the official diagnosis. TEN YEARS of searching, questioning, and feeling unheard!
Endometriosis Is The Disease Of Loneliness
Now why do I call it the disease of loneliness?
Well besides the fact it takes soooo long for many to actually be told it’s not in their head.
Sooo long of being in misery being told you can’t trust your own body.
It’s also a disease where most doctors have no idea what the hell it is and what to do about it besides putting the body into menopause.
Then you have the pain itself that turns you from a human being living amongst society into a person who can’t perform basic tasks because the pain is so unbearable. Instead, you stay home, lay on your bed with the biggest heating pad you can find on your belly, trying to zone out to TV or anything else you can to keep your mind off of it. If you have loved ones that live with you you may see the sadness and pity in their eyes. But there is only so long you can tolerate it and respond to the simple question “how you are doing” accurately. Eventually you just mumble, or just lie and say you are fine, as seeing their hopelessness brings only more pain.
Endometriosis Surgery
As I mentioned earlier, birth control and surgery are the only two options the medical world offers as options. I didn’t want either, but I eventually tried both. First, it was the hormonal option, trying various forms of hormonal birth control, neither of which touched the pain, but only left with a newfound friend… sadness. Within days the world around me turned gray. I tried type after type but the same reaction occurred, and I preferred living my life with color, in full 2-D, and I knew in my bones my body didn’t want anything synthetic as it wasn’t going to help.
After I couldn’t handle the pain anymore I gave in though and had doctor #4 perform surgery. Two hours later I awoke to learn she had no idea what she was looking at and closed me back up to be referred to an oncologist, assuming I had cancer.
So I met doctor #5 who prepared me for all the worst case options. Going into surgery #2 I was prepared to have my intestines damaged needing a colostomy bag, and the hardest part was I was forced to sign away my ability to reproduce giving written consent for her to take my ovaries, or insurance wouldn’t pay for the surgery. I insisted I wanted neither to happen nor gave verbal permission for them to happen. Even on the morning of the surgery, I told the gastro surgeon who had to be present that I would not need him.
She did the surgery and saw the endometriosis and removed what she could while leaving me fully intact, but it wasn’t her specialty, so it returned again within months. I was told this time I would need a complete hysterectomy. I was 38 and unsure if I wanted more children. The decision it felt was being ripped away from me.
“Everything you have been told so far was a lie”
Again, I refused to listen as I knew that wasn’t the answer. My body called to me at my core for help so instead I read, and read lots. I started to listen to my body even more and tuned into what my body and my ovaries were telling me. I started to go to acupuncture weekly, and I had lots of energy work done. I used my magic, tweaked my diet, experimented with many different herbs and formulas, and questioned every herbalist and natural health care practitioner I could to get their opinions to learn as much as I could (which I learned sadly they all seemed to know as little about it as the doctors did).
However, I had a happy ending.
After two years of dedicated studying, tweaking, and processing a lot of stored traumas I finally found a formula that worked for me. The pain cleared. The symptoms released. I found my hope.
Despite not feeling any symptoms, I knew the endometriosis was still present according to ultrasound results I would receive that showed very large endometriomas so I found a specialist who actually knew what he was doing. When I met him, his words to me were… “Everything you have been told so far (by other doctors) has been a lie.” She shared with me more about the disease than any other practitioner I met, and explained to me what I knew was true all along, that synthetic hormones were not the answer, that removing your organs was not the answer, and that I (and all other women suffering with this) deserve to be heard and matter!
I let him perform my final surgery to remove all the endometriosis from my body; however I wasn’t fully sure I needed to seeing I no longer felt symptoms, but I knew I couldn’t let the endometriosis remain causing my ovaries to be tortured any more. It was a 9 hour long surgery, far longer than anticipated, and I was declared the worst case he ever saw.
After three years of pain and torment, 6 different doctors, three surgeries, and countless hours of research and exploration, I finally have a happy story. Thanks to the plants, my inner knowing, and the final doctor, I have a life again. I am free to live and free to plan my life however I choose. I wish this same happy ending to all the sufferers of this affliction. In honor of all the brave women out there know that you got this and don’t give up. Listen to your heart and have hope, even if you have to reach down to the depths of your soul, find the hope, you are not alone!
Want to learn more about supporting your own reproductive health? Here is a link to a post I wrote with ways you can support yourself as this post is already too long. Thank you for reading and listening to part of my story. If you suffer from endometriosis I wish you the best on your journey and feel free to contact me for support.
