The Battle Within - Coping With Endometriosis
12:01 PM
If you can survive the battle you war with yourself, you can survive anything.
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.
My story
I asked God to help me grow. It started raining.
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.
Treatment
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.
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.
1 comments
This is great, Sam! Thanks for sharing!! <3
ReplyDeleteThank you for your comment! :)