by: Samantha Parent.
Home Blogger & Momma Village member Samantha Parent shares her story of living with endometriosis.
March is endometriosis month. I am one of the 1 in 10 women who have this "chronic pain disorder" that is so seldom talked about. Many don't even know what it is when I bring it up, yet 10% of women suffer with this. How is it that a disease that impacts 10% of the female population is not talked about? Because it's "private" because it's "invisible" and because it involves female reproductive organs so previous generations have been too ashamed to bring awareness to this horrible condition. Endometriosis is very misunderstood, even by some doctors who presently still cite outdated research on how to treat the condition. Depending where you look for info, even the medical definition of endometriosis is confused. There is no current cure, and treatment options are also generally invasive with no guarantee of improvement of symptoms. That being said, we live in an era where women's issues are garnering more attention than in the past, with endo research finally starting to get the attention and *hopefully* funding it deserves to help change the future for endometriosis and hopefully push for a known cause and cure.
I follow The Endometriosis Coalition for leading info on this disease because they are at the forefront of endo awareness and only look at the modern day research breakthroughs. Any factual information I state in this post, I am citing from them and also endometriosis.org which is another great up-to-date resource committed to present day research and dispelling widely believed myths.
I was formally diagnosed with endometriosis when I was 25 years old through laparoscopy, a surgical procedure to confirm the condition is present. I also had an ovarian cyst removed at the same time. Symptoms for me were present for many years but began to severely worsen around the age of 22. I spent my 23rd (and first married) birthday on the bathroom floor at a B&B writhing in pain all night long with no sleep. I knew something was up. By the time of my surgery, the amount of endometriosis present in my reproductive organs was considered "moderate". Sometimes those with extreme pain can have mild endo, and some with no symptoms at all can have severe endo so pain is not always a way to determine severity of the presence of the condition. I have always considered myself "lucky" if you will that not every single back-to-back cycle has been debilitating for me. I would say it is generally every other or every third cycle that would have me in extreme, hard to cope pain for about 2 days. It's difficult when you experience pain that all women generally experience and so it's hard to gage how serious your pain is compared to the next person. For many years I would pop way too many painkillers and just try to get through it without communicating what I was experiencing because as far as I knew, everyone experienced what I did. For me, what made me finally seek medical help was when severe cycle pain began spreading to my back, legs, and bowels. When I could no longer move but just writhe in pain on the bathroom floor, I knew this was no longer just "period pain" because I could compare it to the pain I had once known and was able to see how much things had changed. Along with those symptoms, I also experienced painful sex and extreme indigestion/diarrhea each cycle, day 1-2 of my cycles I could not leave my house and had to spend the time between bed and the bathroom. It was embarassing, hard to hide, and definitely took a toll on me. Our fertility issues began as well and continued for 4 years before we finally sought fertility treatment in 2016. Anxiety and panic episodes began for me around 2013 at the age of 25. Without wanting to go on medication to cause other long term health issues, I have since 2014 effectively treated all of my symptoms with natural health products, with the exception of seeking fertility treatment. I also have a-typical PCOS so with two fertility issues stacked against me, I did need medical interventions and am SO thankful for them! The benefits definitely outweighed the risks in that case - Hi Isla!
So what is endo/endometriosis?
Endometriosis is tissue similar to the lining of the uterus that is found outside the uterus, on other parts of the body. This rogue tissue creates lesions that become inflamed, bleed, and break down causing pain, scar tissue, and inflammation, particularly during menses but also during other cycle times. Even though it’s mostly found in the pelvis, endo can also be found on odd places like the bladder, bowels, appendix, diaphragm, and even lungs.
Signs & Diagnosis
Every woman experiences symptoms differently. Symptoms can range from “killer cramps” to heavy periods, nausea, vomiting, diarrhea, constipation, pain with urinating, pain during sex, fatigue, brain fog, and infertility. Some women may experience all of these symptoms, while some may experience no symptoms at all. This colorful symptom profile is one thing that makes endometriosis difficult to diagnosis. The only way to receive a confident and formal diagnosis is unfortunately through surgery.
A diagnosis of endometriosis cannot be confirmed by CT scans, MRIs, or ultrasounds. The abnormal cells need to be collected via biopsy, during a surgical procedure called a laparoscopy. While symptoms can give doctors a suspicion of endometriosis, relying on symptoms alone may lead to misdiagnosis and improper treatment. If you suffer from any of the symptoms previously mentioned, book an appointment to speak to your doctor or a specialist and be sure to do your own research.
Though hormonal treatments are highly regarded as an acceptable treatment of the disease, in actuality, it only masks the symptoms. Excision surgery with an endometriosis specialist is the gold standard for effectively treating endometriosis. Most surgeons perform a less successful technique, ablation, that simply burns away the top of the disease, leaving the root behind so that the tissue can continue to form.
There are 4 factors that prevent women from receiving adequate care
One: Lack of awareness amongst the general public
176 million women globally are affected by Endometriosis
1 in 10 women in the US are living with the disease; many struggle in silence
Treating Endometriosis costs the nation an estimated $119 billion annually
Two: Misinformation amongst medical professionals
The average time between symptom onset and diagnosis is 10 years
Hysterectomy is often presented as a cure, despite the fact that current medical literature proves it to be an ineffective treatment
Hormone suppression is highly regarded as an acceptable treatment of the disease itself, when in actuality, it only masks the symptoms
Despite statistical evidence that shows women who undergo excision surgery have better long term outcomes, many OBGYNs do not acknowledge excision surgery as the gold standard of treatment
There is a general lack of surgical skill to properly perform excision
Three: LACK OF GOVERNMENT FUNDING
The National Institute of Health (NIH) had a budget in 2016 of $32.3 billion, yet Endometriosis only received $11 million, and will receive the same minimal funding in 2017
The amount of funding received for Endometriosis is much smaller when compared to other diseases that affect roughly the same number of people
Four: LACK OF INSURANCE COVERAGE
Despite current research and outcomes, excision surgery is viewed as an investigational service by many insurance companies
No incentives exist to improve quality of treatment because endometriosis specialists are reimbursed the same as regular OBGYNs
An Endometriosis specialist who performs a 4 to 6 hour excision surgery will receive the same reimbursement as a non-specialist who spends 30 minutes to an hour, using a less successful surgical technique such as ablation or fulguration
So why do we need awareness?
Many women suffer in silence, underperform in their careers or studies because of missed days from pain, and the correlation between endometriosis, infertility, and depression is sadly a very strong one. Endometriosis is the leading cause of infertility in women, accounting for between 30-40% of all female infertility. On top of this, there is much misinformation believed by the general public about this condition.
Dispelling the rumours
- Despite what you may have heard, pregnancy does not cure endometriosis but rather may help to reduce the suffering of symptoms, especially if breastfeeding without a montly period. For too long, women thought if they just got pregnant, the disease would cure itself and that is not medically accurate.
- It is not true that endo is synonymous with infertility, though it is obvious the link between the two is strong. But it is important to note that an endometriosis diagnosis does not necessarily mean fertility issues. It is generally believed that 60–70% of women with endometriosis are fertile. Furthermore, about half the women who have difficulties with getting pregnant do eventually conceive with or without treatment so based on those numbers approximately 15-20% of women with endo are considered infertile.
- It was once believed that a hysterectomy is a cure for the disease and that is now known to be false. Endometriosis up until only recently was believed to be endometrial tissue growing outside of the uterus. Now it is known through modern break-through that the tissue is endometrial-like but is not in fact the same but rather behaves the same. Because of this breakthrough, it is now realized that hysterectomy is not a way to eradicate the disease because simply removing the uterus does not account for the tissue that has likely spread throughout other organs.
- No one is too young to have endometriosis. With diagnosis taking on average 10+ years of symptoms present, the old stats used to point to endo being more prominent in women 30+ but that myth is now expelled by putting two and two together: young women are often misdiagnosed, symptoms brushed off, and are not taken seriously often until infertility symptoms become present as they approach their 30's. In actually, endo symptoms in women can begin with their first period as a young teenager and continue through to adulthood.
How can I help my friend or family member with endometriosis?
Many women with endo find themselves feeling misunderstood and unsupported. Often having to cite pain as a reason to be held back, they may find themselves feeling insecure, weak, and judged. Comments like: it's just a period, suck it up, take an Advil, put some heat on it, you're a wimp, etc. all contribute to women with endo hiding their symptoms and withdrawing socially. Endometriosis has a strong correlation with psychological health issues and sadly is associated through many studies with a reported overall lower quality of life than compared to the average woman. Pain overtime has a negative effect on mental health, often bringing forth anxiety, depression, and relationship issues. If you know someone with endometriosis, the best thing you can do to provide support is to empathize and not judge. Try to bring sunshine and love to them and remind them of what makes life beautiful. You (and the medical world) may not be able to provide answers or relief, but making sure your loved one knows they are heard and supported makes all the difference as they seek the strength they need to battle their symptoms. The worst thing you can do is not take them seriously or belittle how they feel. Some women battle constant chronic pain, so being supportive and understanding when the person is just not well enough to attend or participate in various things is so helpful as they are already battling embarrassment from symptoms and the feeling that they are constantly disappointing everyone. They might not even want to talk about the real reasons they are MIA, so if you notice they are withdrawn or less social, by all means check in, offer support, help, a visit, etc. but do not pressure them or guilt them for choosing to stay in or be alone. Sometimes that is just what that person needs. When you are constantly battling for strength, it is obvious that often you just feel very weak and need to take breaks.
What do I do if I have been diagnosed with endometriosis?
Well for starters, reach out to me if you need a friend. Don't navigate all your questions and fears alone! Definitely research on endometriosis.org and follow The Endo Co. on Instagram. Talk to your doctor about your options and all that jazz. From a non-medical perspective, take care of yourself. Self care is so important - I can't stress that enough. Diet is definitely helpful. Endo is still very misunderstood but we do know it's origins are actually an auto-immune disorder and symptoms are worsened and made more painful by inflammation in the body. Rather than turn to drugs or birth control to try and manage symptoms, consider trying other options first. I have nothing against medicine - it saves lives everyday! But you need to weigh the risks and benefits. If fertility is a concern for you, the last thing you want to do is hormone therapy or extreme pain killers. I recommend researching an anti-inflammatory diet and using herbs and essential oils for immune boosts, inflammation, chronic pain, and hormone balance. These natural aids I found turned my life around... and in a situation where I felt so helpless and out of control, helped me feel like I could help myself and take my situation back into my own hands a bit. Also, toxins and exposure to chemicals in the home won't cause endo (as far as we know) but it can make symptoms worse. So be sure to toss the garbage - anything that is an environmental toxin or is a known endocrine disrupter (xenoestrogens -google it!). In our house, I have thrown out most stuff that contains known harmful chemicals and look to safe, plant based products. I have actually seen symptoms improve even before pregnancy through the use of essential oils and the tossing of chemicals in our home. I also stopped using chemically treated feminine hygiene products such as pads and tampons and I noticed reduced menses pain right away. As much as I hate pads, I try to avoid all tampons because I found they aggravated my symptoms. This journey requires a lot of inner strength (okay and pain tolerance) so you need to take care of yourself. Take salt baths, go for walks in nature, have your stack of favourite movies ready for days that you are stuck inside, diffuse oils that help calm you and help you maintain balance in your thoughts and emotions, pray, do yoga, be sure to only enter in supportive relationships (both romantic and with friends) because the last thing you need is toxic people who drain you and make you feel worse. Fight back against the stat that our quality of life is worse and make the choice to make your quality of life fantastic. It's not an easy journey, that's for sure. But I can say - I have grown so much as an individual. The battles I have fought (mostly in silence and solitude) have made me a stronger person than I ever thought I would be. A journey that had me questioning God at every bend, has brought me so much closer to His heart and my faith has been made stronger through the fire. You can do it! You're not alone. 10% of women are fighting with you...and hopefully one day we will see a cure.
"I am Samantha Parent, a lifestyle blogger sharing my life as a mama who frequently talks about endo, PCOS, fertility, natural health options, shopping local, thrifting, and craving chocolate. I live in a very unique and fun fixer-upper century home we affectionately call Emberly House in rural Grey County with my husband Scott, daughter Isla, and dog Meadow. I am very passionate about having a voice and cause in your own community and making a difference in the world around you, one positive change at a time. "