I’m Amanda from I Know Endo. I have Endometriosis and suspected Adenomyosis and I’m gonna tell you all about these underfunded conditions. I want you to know that I believe your pain!
What Is Endometriosis?
What exactly IS Endometriosis? It’s complex. It’s the presence of endometrial-like tissue on or in unexpected places in the body. It still takes years to be diagnosed and addressed. It affects our physical and mental wellness and our entire lives in general! It’s found in extra-pelvic locations such as the lungs, lymph nodes and even the brain. It can infiltrate organs fusing them together, which is as scary and as dangerous as it sounds.
In other words, it’s a complex full-body disease that has been known for quite some time but still lacks basic understanding. We smile through excruciating pain every single day. This disease rocks us to the absolute core. Despite the common assumption that Endo only affects women of childbearing age, it actually affects people of all ages, children included. Not all menstruators are women either, so it's important to make an active effort to use inclusive language!
Due to the long-standing systemic racism within the healthcare system, Black and Indigenous human beings experience further delayed diagnosis of Endometriosis and further stigma related to the colour of their skin, especially women. It’s absolutely unacceptable, and it’s happening right here in Canada, and around the globe. Iknowendo is aware of the ancient global acts of oppression on Black and Indigenous humans of colour, especially within the healthcare system. We want to help change it.
Humans have actually been documenting Endo longer than anyone thought. Instead of believing patients were in pain throughout ancient history, they diagnosed them with hysteria. Similarly, Endo patients today have all heard “it must be in your head” or “you’re overreacting”. All while the leading theories on endometriosis have been embryonic, genetic, and otherwise ancient, meaning not only do they date back millennia; nobody causes or cures it without medical intervention to this day. It means modern medicine did not discover it, cure it, or effectively treat it either.
Symptoms of Endometriosis
Symptoms of Endometriosis include but are not limited to;
- pain that is unrelated to your period
- pain that radiates to the back and thighs
- painful periods
- abnormal periods
- heavy periods
- painful bowel movements
- painful urination
- frequent urination
- painful orgasms
- painful penetration
- pain with other sexual activities
People with Endo often have comorbidities such as PCOS, Adenomyosis, Interstitial Cystitis, ovarian cysts, fibroids, vulvodynia, mental illness, and the list goes on and on.
Treatment Options For Endometriosis
To ‘treat’ Endometriosis, it must be excised via laparoscopic surgery by an experienced team of Endo specialists. But even that isn’t curative. It is, however, currently the highest standard of medical care an individual can get. But it’s not accessible to everyone. Some patients will require repeat surgical intervention, whether related to incomplete removal of disease or disease recurrence, we still don’t know for sure. It really is that complex. In short, a quick fix does not exist here.
Hormone suppression does not treat Endo, even if the pill can offer some patients relief from debilitating symptoms; Endometriosis is not the endometrium. It means hormone suppression affects Endo differently than it does the endometrial lining because they are separate entities altogether. Most doctors will continue to push hormonal contraception when it offers no relief without considering the long-term effects, or that they’re allowing the biggest uncontrolled experiment on vulva owners in history to happen all while filling their wallets with each signed prescription. The reality is it changes our hormone's natural ability to function, and while there is a much-needed place for hormonal birth control in healthcare, it isn’t a treatment for Endometriosis.
When it comes to treating an incurable disease, doctors still claim ancient myths like having a baby or a hysterectomy. Some doctors claim that diet alone, lifestyle changes or positive thinking will be enough. Avoiding trigger foods is individualized so someone with bowel Endo might feel pain with anything they eat, regardless of its nutritional value. We can change every part of our lives and ourselves and still need help because this disease isn’t about what we do or how we think. Putting pressure on us to ‘get better’ when we have a physical disease with no cure is arguably more harmful than the disease itself. This contributes massively toward mental illness and societal mind/body disconnect. It’s the longest slap we could face, to be told repeatedly and for generations that we know nothing about our bodies, and it’s a disservice to us all.
I believe that you’re in pain and I’m sorry it won’t go away.
Conventional medicine doesn’t grant us awareness, if they did they’d have told us they knew nothing of the long-term effects a tiny pill could have on our physical and mental health 5, 10, or 20 years later. We’re only just beginning to unravel the long-term effects of hormone suppression, so it deserves to be talked about just as easy as it is to be prescribed the pill. To make informed decisions about our health, we must be informed.
Alternative Treatment Options
CBD & THC have been documented to help ease symptoms of chronic pelvic pain and inflammation. Controversial as it is, I have been self-medicating for years. Does it take away my pain? No. Does it help me handle my pain better? Yes! You can smoke it, cook with it, swallow it in pill form or apply it topically in a lotion or body butter. There are even cannabis-infused suppositories used anally or vaginally that can offer much relief. The science is there to back it up, but what’s even cooler is hearing the actual reviews from 'endoviduals' around the globe, they’re the ones who have the say, and relief is a relief!
What we need to remember is that help for some does not generalize to help for all, and when it comes to alternative treatment options, if it works for you, that’s fantastic and that’s a big win. It doesn’t mean shoving whatever works for you down anyone’s throat, though. We’re just happy you’ve found something that offers relief!
Here are a few other alternative treatments, considering a complex disease deserves a multi-therapeutic approach perhaps add;
- Pelvic Floor Physical Therapy
- Dilation with vaginal dilators may help relax the pelvic floor
- TENS machine
- Natural supplements/herbs
- Food as medicine
- Grounding/Earthing – This connects us to the earth, where we are mostly disconnected because we wear shoes. The act of grounding has science to back it up and can profoundly reduce inflammation. Anyone can ground themselves, just remove your shoes while standing on cement, grass, a sandy beach, rocks, or dirt were permitted and safe of course. This is an ancient act, an Indigenous act, which I myself consider the most potent medicine. The power of the earth is absolutely essential to our growth; the First Nations and Indigenous people have always known this.
- The OHNUT – is a wearable set of 4 silicone rings that act as a buffer allowing full control of depth during penetration. Oh boy, do I recommend it! My partner and I would give it 10 stars if that was a thing. Seriously, it’s had a massive impact on my ability to have penetrative sex and I highly recommend it to anyone who struggles with vaginal penetration.
What Is Adenomyosis?
Adenomyosis is another complex disease characterized by pain, heavy periods and did I mention pain? Many humans with Endo also have Adeno, but it goes undiagnosed and untreated just the same. The only way to treat Adeno is with a hysterectomy, and it is considered a cure.
This disease affects the lining of the endometrium which can grow into uterine muscles causing extreme pain and discomfort all the time, especially during menstruation. Adeno goes undiagnosed for as long as Endo, overlaps symptoms, and can cause infertility like Endo.
Treatment consists of hormone suppression or removal of the uterus. Alternative options such as CBD/THC suppositories can help with Adeno pain.
There are natural ways to attempt to treat both of these physical diseases but at the end of the day, you’re doing your very best at managing your life with complex chronic disease and that’s badass.
My Message To You
The reason we can share any of this is because of platforms like CLITERALLYTHEBEST and IKNOWENDO who offer the opportunity to talk about these topics all while growing and educating ourselves continuously.
There’s so much life to live while chronically unwell, and it’s beautiful too. We’re allowed to be sick and well at the same time. I think we ought to scream it. Just because we’ve been handed an incurable mess, doesn’t mean we have to fix it. It’s ok. Endo is horrendous, but you, my friend, are awesome!
YOU GOT THIS (& when you don’t, your friends at CLITERALLYTHEBEST & IKNOWENDO got you) we’re in it with you.
love & support
(Amanda & Evie are patient advocate friends who met on Instagram)
Camran Nezhat, M.D., Farr Nezhat, M.D., Ceana Nezhat, M.D. (article in press) Endometriosis: ancient disease, ancient treatments
Clinton Ober, Stephen T. Sinatra, M.D. Martin Zucker (Basic Health Publications Inc, 2014) Earthing, Second Edition