I had grown up thinking my pain was normal. And only learned after my surgery that I have a disease and it wasn’t normal.
But what does that mean for me physically? What’s changed?
Whether it be from my excision surgery and D&C, my change in diet, the 6 months of Lupron Depot injections, my new birth control pills, or a combination of them all: I won’t know. All I know is things have been very different. Please be advised this blog may be a little bit of TMI…
I no longer have killer period cramps
Granted, I’ve only had two periods since my surgery before the hormone therapy stripped me of my cycles, but those two periods were the easiest periods I’ve ever experienced. The cramps were so minimal, I didn’t even know I had started. They were like an annoying gnat, barely given a thought. We shall see what my next cycle holds in store for me…whenever it decides to kick in. At the time of writing this entry, I haven’t bled in nearly six months…
I no longer have incredibly heavy or long periods
The two periods I have had since surgery were incredibly light and only lasted 2-3 days. UNHEARD OF! If you told me six months ago that’d be the case, I would have called you crazy and laughed in your face 🙂 Again, waiting to see what my next cycle brings…
I no longer have constant lower back pain
I used to have daily lower back pain. I figured it was because I sat at my job all day, lumbar pressure and all that jazz. I used to also continuously crack my back in the hopes of relieving that pain. But now, it’s gone. Hasn’t returned. During my research, I have since learned that chronic lower back pain is a symptom of Endometriosis.
I very rarely have headaches anymore
I’m assuming this has more to do with a change in diet than it does with my Endometriosis. Before, I rarely drank any water, but had tons of coffee and soda during the day. I think the headaches were my body’s way of screaming at me to hydrate. But I very rarely get any headaches anymore. And when I do, they’re incredibly light and go away with just a few Ibuprofen. They’re very well-behaved. However, there have been studies linking migraines and Endometriosis.
I no longer get stabbing, shooting pains in my ribs (I used to refer to these as a “bubble in my lungs” or “lightning”)
I used to get sudden, and quick, stabbing pains in my ribs or lungs. They were so fleeting it’d only last about a second, but it was so powerful it was enough for me to intake a breath and “Ow!” Whatever they were, I haven’t had one since my surgery. I’d like to think it’s because the doc removed the Endo implants from my diaphragm. And through today’s research, I’ve found that there is a link to lung/chest pain and Endo on the diaphragm.
I poop at least once a day now
Part of my amazing new poop schedule is due to my new diet, BUT many women with Endometriosis also suffer from chronic constipation (or diarrhea). I’d sometimes go 3-4 days without pooping. Suffering from the pain and bloating that came with it. Sometimes stool softeners didn’t even help. During my surgery, my doc found my bowel had connected to my uterus by adhesions, and also removed implants from the surface of my bowel. And since, I’m a poopin’ machine! Yay!
I no longer have firey, stabbing, tearing pain when I poop
Again, I thought this pain of poopin’ was considered normal. Sometimes it was agony, even when I wasn’t constipated. Felt like someone where stabbing me in the gut over and over again. And I was NOT about to discuss my bowel movements with my doctor. Why would I? Everybody poops. I’m sure it hurts everybody when they poop; right? Wrong. This change has almost been as spectacularly amazing as the decrease in my period cramps. A complete reversal. Oh my god. Pooping is a joy!
A huge part of me is terrified that this relief is temporary. But I’m trying to remain positive and think good thoughts.
Anyway, now that I’ve shouted to the heavens about my bodily functions and thoroughly grossed you out, I’m hoping that surgery (or other efforts) have drastically affected your pain as well. I’d love to hear about it in a comment below.
*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic. Today’s topic came from an my best friend, Rosie, who encouraged me to write about what’s changed physically since my surgery. What doesn’t happen anymore? What’s better? Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician (or in this case, attorneys). Always. Yours ~ Lisa
Many women with Endometriosis either cannot work or miss several days of work each month due to their pain. Others miss work due to the side effects of their treatments or medications. Others because of surgeries and recovery time. It’s can be a massive economic loss, and many women are reprimanded or fired by their employers due to the lost time.
What protection do we have as Endometriosis sufferers? What can we do? Aren’t there disability laws for stuff like this?
Important: I live in the United States. This blog contains information regarding United States disability rules. If you live in another country and are interested in any disability benefits you may have available, I strongly urge you to check out your local rules and regulations.
Just as important: this will be a long-winded post. Feel free to walk away…I give you fair warning!
Is Endometriosis Considered a Disability
The Federal government and each individual state may define “disability” differently.
Womenshealth.gov defines a disability as, “a physical or mental impairment that interferes or prevents normal achievement in a particular function.”
The Americans with Disabilities Act defines disability as a “physical or mental impairment that substantially limits one or more major life activities of such individual.” It goes on to define major life activities as “…caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working. [A] major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.”
The Disability Evaluation under Social Security is a publication also known as “The Blue Book” (due to it’s blue cover). It itemizes disabilities recognized by the Social Security Administration and lists impairments for each major body system that are considered severe enough to prevent a person from gainful employment. It is also an aid used by healthcare professionals to better understand disability options available to their patients.
Endometriosis is NOT identified in the Blue Book. It is not considered “severe enough to prevent an individual from doing any gainful activity.”
So Endometriosis is not classified as a disability with the SSA. Does that mean it’s a lost cause? No…Swallow your lumps and read on.
Social Security Disability Benefits
The Social Security Administration offers two types of disability benefits : SSDI (Social Security Disability Insurance) and SSI (Social Security Income). SSDI is for people who have worked in the past, paying (and accruing) Social Security benefits; and receiving these Social Security benefits early (as opposed to waiting for retirement). SSI benefits vary from state to state and pose different requirements that SSDI.
The Social Security Administration does not recognize Endometriosis as an official disability. Their strict definition of “disability” is:
“The law defines disability as the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”
Or more clearly (maybe):
“You cannot do work that you did before;
We decide that you cannot adjust to other work because of your medical condition(s); and
Your disability has lasted or is expected to last for at least one year or to result in death.”
What does that mean in English? Basically, if you believe you have a disability, you must be unable to work and earn less than the “substantial gainful activity.” For 2015, the Federal Substantial Gainful Activity amount for non-legally blind individuals is $1,090 each month. You must also not be able to adjust to other work with your disability, and your disability has lasted, or will continue to last, for at least one year (365 days) or will cause your demise. Think long-term. If you’re seeking SSI benefits because you can’t work one week out of the month; you’ll likely not succeed. If you can work with a different vocation, then you’ll likely be denied. These are long-term disability benefits – reserved for those who are no longer able to work on a daily basis in any vocation due to their chronic pain or disability.
It does not; however, preclude you from applying. If your Endometriosis symptoms are so great that you can no longer work at your current job, and you cannot work in another vocation, you can apply. It’s my understanding that successfully applying for Social Security Disability benefits can be an arduous process.
You can try to prove that your Endo limits you so you cannot work a full-time job, and the Social Security Administration may find that your “functional capacity” has been so limited by your condition and finding a job that suits your needs and abilities may be impossible.
If you submit a disability application to the Social Security Administration, a Claims Examiner reviews your application, medical records, employment records, and even financial records. The Social Security Administration will not award disability status simply because you have a disease; rather, it weighs the functional limitations presented in your paperwork and history. Your application may be denied, and you may wish to seek an appeal. It’s commonplace.
According to a former Disability Claims Examiner, this is because Social Security makes no attempt to obtain a statement from the treating physician, and this is usually only obtained by the claimant during an appeal process. Prior to a hearing, the claimant has no opportunity to express to their Claims Examiner the extent of their disability and symptoms. And Disability Judges can frequently overturn prior decisions.
VA Disability Benefits
The Department of Veterans Affairs offers compensation to servicemen and women who were who were injured during service, or whose pre-existing injury/conditions were aggravated while in service. Additionally, post-service disabilities, if found related to an injury which occurred during service may be paid for. Certain requirements must be met in order to qualify, including you must not have been dishonorably discharged from service.
How does Endometriosis fit into a military service-related injury? My guess is if you were unable to seek proper medical treatment during your service (on deployment, denial of medications, etc.) you may be able to claim that it was aggravated during that time. Or you were diagnosed with Endometriosis while still in service.
Successfully making a disability claim with the V.A. office may be difficult. My EndoSister, Lauren, made a claim and she has recently been victorious!
Short-Term Disability Insurance
AFLAC is the most well-known company that provides supplemental insurance when recovering from a covered illness or medical procedure. Some employers offer supplemental insurance coverage packages to their employees (you may want to talk to your HR Department). You pay a monthly premium for coverage, just in case you are ever hurt or temporarily disabled and miss time from work. You maybe paid a supplemental income (a percentage of your salary) due to a “covered” sickness, time in the hospital, or physician-documented short-term disability. It helps with the bills as they stack up, but there is usually a 10-14 day waiting period while your claim is being processed before the check(s) arrives.
Unfortunately, I have been advised that AFLAC does not cover time off due to Endometriosis symptoms, hospitalization, or surgeries. There are other companies out there…
If you do decide to go the Supplemental Insurance route, please have thorough conversations with the agent or broker:
Make sure that any treatment or time missed from work regarding Endometriosis would be covered by the policy.
Have a thorough understanding of what is, or isn’t, covered (time off work due to surgery, side effects of medication, appointments) and if there is a financial cap on what they can pay you.
Understand the rules of the policy regarding how many days you are required to be “out sick” before the coverage kicks in. If you only miss 4 consecutive days of work and submit a claim, you may not be paid if their minimum requirement is that you miss at least 7 consecutive days of work. Am I saying to miss more work than necessary? No. But you know your body, your habitual “miss work” time…it may help you in making this decision.
Do your homework. This may prove worthwhile if you can afford it. Or it may not…
Assistance in Finding a Different Job with your Endo
If someone has a disability that interferes with their ability to work, or to work in a certain type of job, the State Vocational Rehabilitation Agency is there to help. Each state has its own departmental offices, but the Agency is intended to “coordinate and provides counseling, evaluation, and job placement services for people with disabilities.” Each state will define “disabilities” differently, as well as offer different services and access to local programs.
What if you only need to find a way to protect yourself for those few days you miss from work each month? Or are recovering from surgery and don’t have anymore vacation time? What if you’re scared of being fired because of your condition?
In 1990, the Americans with Disability Act (the ADA) was passed in order to prohibit discrimination against and ensure equal opportunities for people with disabilities. However, due to their definition of disability, you cannot rely on an ADA lawsuit protecting you from missing work.
In 2003, Shannon Kampmier was fired after failing to provide a doctor’s note of her absence after a recent surgery (and pending hysterectomy). She filed an ADA suit, which was lost and later appealed. Ultimately, the court found that “she did not have her claim under the ADA because she did not make an individualized showing of a disability. The court found that even though her conditions could impair major life functions, she lived an active life, cared for herself and her family, and could perform the tasks central to most persons’ lives.” (Update on Disability Discrimination: Emerging Issues Affecting the Public & Private Sector, by Sheryl J. Willert and Jessie L. Harris)
The Family Medical Leave Act was passed in 1993 to provide employees job protection and unpaid leave for certain family or medical reasons, without facing retaliation from the employer. This includes “a serious health condition that makes the employee unable to perform the essential functions of his or her job.” However, not all business are required to follow FMLA Rules. If you work at a business with less than 50 employees, you are not protected by the FMLA regulations. If you work at a business that employs at least 50 employees, you then have to meet additional requirements (work so many hours, been employed for at least a year, etc.). If you plan on seeking leave under the FMLA, I strongly suggest you familiarize yourself with the Frequently Asked Questions on their site or even consult with an employment law attorney.
In 2002, the case of Trivisonno v. Metropolitan Life Ins. Co. was brought before the Federal court. The plaintiff, who suffered from Endometriosis alleged she was fired in violation of the Family Medical Leave Act. The court found; however, that she was only terminated after she “stopped showing up for work and had abandoned trying to meet her production requirements.” Upon her return to work, she was unable to meet her sales quota and stopped showing up to work, in violation of the employers’ policies. Unfortunately, I cannot locate enough facts to understand the basis for her FMLA claim, but do know that she did not win her case against her employer.
A 2016 case, Cheryl Perkins appealed the denial of her disability claim; however, she did not win. They found that she was still able to be gainfully employed and did not suffer from impairments of normal living.
But don’t be discouraged! Another 2016 case, Lyndy Slaughter, was also denied disability benefits. She fought the decision, and the court ultimately approved her claim for benefits!
If you think you are, or have been, discriminated against by your employer regarding your Endometriosis, you may wish to seek out legal counsel. Most consultations are free. Do not lose heart in the above-mentioned rulings of these lawsuits. Every case is different, much like every woman’s Endometriosis is different.
What YOU Can Do
If you’re missing some time off of work and want to take steps that may help you stay employed:
You may wish to talk to an attorney who specializes in employment law and disability issues.
See if your physician can write a letter regarding your condition, symptoms, treatment, and side effects to keep in your employer’s personnel file.
Review the ADA and FMLA regulations to see if your employer is held liable to these standards.
If you desire to file for long-term disability benefits:
You may wish to talk to an attorney who specializes in disability claims and appeals.
You can file online or in person at your local Social Security Administration office.
Your physician may be asked by the Social Security Administration to provide written reports or opinions regarding your condition. It is important that your physician understand the full extent of your symptoms and any limitations they present.
If you want to help push toward Endometriosis being classified as a disability:
Can’t find a petition? Create one! Spread the word! Gather the signatures! With approximately 5 million women in the United States suffering from Endometriosis, there shouldn’t be a problem amassing the required signatures. Unfortunately, all previous online petitions have failed to reach the minimum number of signatures…
You know your body. You know what you are, and are not, able to do anymore. I know this blog has made it sound like one hell of an uphill battle. Do not let these words discourage you if you wish to make a disability claim. Forge ahead. Remain strong and diligent.
*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic. Today’s topic came from an EndoSister and fellow blogger, Kitten, who wanted to know if Endo as a disease is protected under disability laws, so that you can’t be fired for missing work due to complications like pain, treatment side effects, or surgery.. So let the research began!
Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician (or in this case, attorneys). Always. Yours ~ Lisa
An EndoSister came to me with complaints of fatigue, exhaustion, and a general lack of energy. Is it related to her Endometriosis? If so, why? And is she the only one who has to take 2-3 naps every day? Let the research begin!
Fatigue & Endo
Fatigue is one of the many common symptoms of Endometriosis. But why does something growing in our bodies make us tired? No one is really sure. Some feel that it could be our body’s coping mechanism to the pain, it could be that our body’s immune system is working on overdrive to fight our inflammation, it could be from depression, or it could be due to the mental and physical stress women with Endometriosis endure. It could even been some deeper unforeseen medical reason that nobody has figured out yet…
Chronic Fatigue Syndrome
A news release issued in 2002 by the National Health Institute suggests that women with Endometriosis are more susceptible to other immune deficiency disorders, and may suffer from chronic fatigue syndrome and fibromyalgia. The study was of 3,200 women with Endometriosis and it indicates, “The women in the study were over a hundred times more likely to experience chronic fatigue syndrome than the general population of U.S. women.”
The Mayo Clinic defines Chronic Fatigue Syndrome as “a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn’t improve with rest.”
Talk to your physician if you have been overly exhausted, no longer have energy for everyday tasks, or just want to rule out if you have CFS. It may take time to obtain a proper diagnosis; however, during that time you just might find ways to manage.
There are several studies out there that link chronic inflammation to complaints of fatigue. If you can control the heightened levels of inflammation due to Endometriosis implants and adhesions, you may be able to better your sense of fatigue. Inflammation can be somewhat controlled, or at least lessened, through diet changes and taking supplements. More on what to eat (or not to eat) to help with Endometriosis symptoms (including inflammation) can be found here.
Stress raises certain hormones, like adrenaline and cortisol. These hormones makes us more alert, hyped up, ready for anything! And also deprive us of our sleep and relaxation. If heightened levels of adrenal hormones are your norm, it may effect your sleeping patterns and overall state of being. Chronic adrenal fatigue may lower your blood sugar levels as well.
Many women with Endometriosis also suffer from depression. Having a chronic, incurable disease can do that to you. Some women are depressed because their friends, family, or physicians do not believe their pain levels, or are unable to seek proper treatment. Some are just stuck lingering on the thought that it will come back, never truly go away, no end in sight. Others miss the lives they never had. Others want to raise a family, and are unable to conceive. Many, many reasons why depression may be rampant in the EndoCommunity. Depression fuels fatigue…and fatigue fuels depression. It’s a viscous cycle. If you are suffering from depression and are unable to pull out of it, you may wish to seek professional help. And it may just help with your fatigue.
Here are several ways you can try to combat your fatigue:
Drink more water : staying hydrated is very important to maintaining a healthy body. Our bodies may grow more sluggish if we’re not getting enough water intake. For more info on why proper hydration is SO important, click here.
Distract your brain : feeling too tired to leave the house? Find something inside to keep your mind occupied. Whether it be needlepoint, reading, gardening, or cleaning, the distraction may trick your body into forgetting it’s tired.
Find some happiness : if depression may be leading to your overall “blah” exhaustion, find something that you enjoy, that makes you smile, or go do something that makes you happy. Surround yourself with friends once a week, or buy fresh cut flowers for a bit of beauty in the house. Pet the cat or dog. Sing. Lifting your spirits may help lift the fog.
Exercise : who wants to exercise when they’re exhausted? Not me! But going for a walk around the block or bouncing around on your trampoline may help release good endorphin levels, raising your spirits and your energy levels. Follow it with water and a small snack! Reward yourself for the endeavor. And smile while you do it!
Maintain a healthy sleep cycle : go to bed at the same time every night (at a reasonable hour), try to get the same hours of sleep every night, wake up at the same time each morning. Force your body into a sleeping habit that is healthy. And if you need a nap or two during the day, maintain that routine as well.
Keep a Journal : Document your energy patterns! See if you can identify any triggers for your fatigue, or things that seem to help. Monitor your diet and exercise as well. Go back every few weeks and review for insight.
We may never know why Endo seems to cause fatigue, but what we do know : if you have Endometriosis and you’re suffering from fatigue, exhaustion, lack of energy, or tiredness, you’re NOT alone.
*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic. Today’s topic came from my friend, Dana, who wanted to know if there was a connection with Endometriosis, inflammation, and her exhaustion. So let the research began! Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
I have heard that sometimes when physicians conduct a hysterectomy where the uterus was shredded/broken down and removed through small incisions then biopsied, cancerous cells could be detected during the biopsy. And that the presence of those cancerous cells may remain in the abdominal cavity post-procedure, which may spread and continue to develop. Some women who this happened to ended up having to go through a intense radiation therapy treatment to remove the cancerous cells.
In April of 2014, the U.S. Food and Drug Administration (F.D.A.) published a warning between hysterectomy, myomectomies, and cancer when the Morcellation Procedure is used. The Morcellation Procedure uses a small “power saw” called a Morcellator to slice and dice the tissue. A myomectomy is a surgery performed to remove uterine fibroids (which are noncancerous masses of growth inside the uterine wall). The procedure is similar, the tissues are broken up, possibly releasing any cancerous cells into the abdominal cavity. The F.D.A. found that 1 in 350 women undergoing these procedures have ” anunsuspected uterine sarcoma, a type of uterine cancer that includes leiomyosarcoma.” If these tissues are ruptured and/or shredded, it may spread the cancerous cells throughout her abdominal cavity. “For this reason, and because there is no reliable method for predicting whether a woman with fibroids may have a uterine sarcoma, the FDA discourages the use of laparoscopic power morcellation during hysterectomy or myomectomy for uterine fibroids.”
In 2015, AETNA ended coverage of most procedures using the morcellator. More info can be read here. In May 2015, the FBI opened an investigation of Johnson & Johnson to see if they knew of the risks of spreading cancerous cells. More info can be read here. (As of April 6, 2017, I cannot find any outcome of that investigation)
A report published in 2017 found that using specific specimen bags (in this instance, the Espiner EcoSac 230) led to fewer complications or spreading of cells and no bag-breakage during procedures.
So it has been suggested:
If you have any history of uterine, ovarian, pelvic, or some sort of abdominal cancer in your family, avoid the “shredding” hysterectomy/myomectomy, known as the Morcellation Procedure. Even if you don’t have a family history for any of these cancers, you may want to play it safe and avoid this procedure.
Don’t get a hysterectomy unless absolutely necessary.
If you DO need a hysterectomy or myomectomy, see if your physician can perform the vaginal hysterectomy, or conventional hysterectomy which removes the uterus as a whole, rather than breaking it down into pieces (thus avoid “freeing” the cancerous cells inside your abdominal cavity).
In light of new research, also talk to your doctor about the possibility of using a contained specimen bag if you opt to use a morcellator during surgery.
Is this post meant to terrify you? NO! It’s meant to educate you, to push you to have thorough discussions with your physician, to educate you to ask these types of situations. I learned SO much today, and thank my Reader who prompted this topic. Always, always, allllways have deep, intimate, and long talks with your physician. It’s what we’re paying them for…
*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic. Today’s topic came from my friend, who shall remain anonymous, “There is a laproscopic procedure where they shred the uterus to remove it, and there are issues with cancer being spread throughout the abdomen by this if there is any cancer in the uterus.” So let the research began! Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
A personal choice for every woman with Endometriosis : When have I suffered enough pain and when do I step up the treatment?
Some women prefer natural methods of controlling their Endometriosis symptoms : supplements, vitamins, diet, and essential oils. But these methods may not work for other women. I’ve gone the route of prescription narcotics, surgery, and chemical hormonal treatments. Other women have undergone hysterectomies.
When and how do you decide which is right for you? Only you know the answer to that question.
May women swear that they have obtained hormonal balance and gained control of their Endometriosis symptoms by a change in diet and following a regimen of natural herb, supplements, and vitamins. I have altered my diet along their same lines and have enjoyed a much healthier lifestyle. Unfortunately, I am also undergoing Lupon Depot injections and am unable to distinguish if my lack of pain and symptoms is due to the diet change, the Lupron, or both. In a few months when the medication is out of my system, I will be able to more readily judge. More information on diet and supplements that may help with Endometriosis can be found here.
Prior to learning I had Endometriosis, my primary care physician had prescribed me Naproxen Sodium to handle the pain. It was the only medication that helped. Of course, it came with it’s side effects, but the benefits outweighed any issues the medicine itself created. As stated above, I am currently on Lupron Depot…more of what that is and what it does can be found here. Once my regimen of Lupron Depot is completed, I will be going on constant birth control to keep my hormone levels in balance, hopefully slowing the growth of any new Endometriosis implants and adhesions.
Laparoscopic excision surgeries are common for women with Endometriosis. It identifies and removes any implants and adhesions, temporarily relieving pain. More on that surgery can be found here.
Hysterectomies are no cure. But it is what modern medicine leans on a fix. Although temporary for some Endo sufferers. Hysterectomies also come in various shapes and sizes,so to speak. Not all hysterectomies are created equal. More on hysterectomies, the different types, and why it may not work to relieve Endometriosis can be found here.
Talk to your physician when you need to make a decision regarding the best way to treat your Endometriosis. Then get a second opinion. Talk to your friends and family. And fellow Endometriosis sufferers. Get advice from every source you can think of. Then take a few days to digest it all, weigh the pros and cons, look deep within yourself and figure out how you best want to handle it.
Only you can decide.
I have one reader who has been suffering with Endometriosis all of her life, had a hysterectomy in her 20s, and now in her 40s (32 surgeries later), has recurring symptoms, even after a hysterectomy. This is a story I hear quite often…
Another friend of mine had a hysterectomy a decade ago and her symptoms are just now beginning to return.
Several Endo Sisters I know use supplements, but struggle to find a balance to maintain control of their pain. Others do not struggle at all and have found what works best for their bodies.
Some swear off “modern medicine” while others embrace it.
I have only recently had my first surgery and am going the “modern medicine” route. But who knows what my feelings will be if I need to go in for a second surgery. For me, recovery was miserable…and I don’t know if I would have the mental and physical fortitude to withstand multiple surgeries (and more importantly, recoveries). But also knowing that a hysterectomy definitely is not a cure scares me from going that route. I do not know what I will choose when I’ve hit the “enough is ENOUGH!” point…only time will tell.
What about you?
*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic. Today’s topic came from my friend, Lauren Siciliano, “When to decide enough is enough, either take pain medication or do surgery.” So research began! Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
So it’s Sunday, which is Reader’s Choice day, and a friend of mine asked if doctor’s can tell a woman has Endometriosis by abnormal blood test results. I know the answer is “no,” but wanted to delve into the different ways Endometriosis may be diagnosed, and the future efforts of modern medicine to help diagnose Endometriosis. For anyone reading this that doesn’t know what Endometriosis is, you can read about it here.
A run through of your symptoms:
Your doctor may ask you to describe your symptoms, but this is assuming you realize your pain isn’t normal. Symptoms of Endometriosis include pelvic pain, bloating, infertility, pain during sex, diarrhea, constipation, lower back pain, and leg pain. I’ve always complained of painful periods to my gynecologists in the past and was simply told it was “normal” and was prescribed Naproxen Sodium to manage the cramps.
During an exam, your doctor may palpate and manually feel your pelvic area and/or rectum for nodules, cysts, or abnormal, sharp pains. The Endometriosis implants will be too small for your doctor to feel; however, some Endo may form cysts, why he/she may be able to discern.
Imaging Studies (Ultrasound, CT Scan, MRI):
Ultrasounds, whether they be external or transvaginal, will aid your doctor to see if there are abnormalities or cysts on your reproductive organs. I had numerous ultrasounds the year leading up to my surgery : the presence of cysts had my doctor worried as we monitored their growth. My last transvaginal ultrasound was very painful when he would go near my ovaries, which led him to order my MRI.
CT scans use slices of x-rays for a deeper look into your body. Dyes can be used during CT scans to offer a contrasting view; however, CT scans are generally used for bones and non-soft tissues.
MRIs use magnets and radiowaves and offers an often deeper and different glance into your body than ultrasounds or CT scans, Soft tissues are more visible in an MRI. Dyes may be used for contrast and a better visual picture of your insides. After my MRI, what my physician thought was a regular cyst was read by the radiologist as a dermoid cyst on my left ovary and a small cyst on my right ovary. It’s the reason we had my laparoscopic surgery : to remove the possible cancerous dermoid cyst.
Laparoscopy or robotic laparoscopy:
To date, this is the only way to confirm the presence of Endometriosis. It’s what referred to as “The Gold Standard,” the only tried and true method of diagnosis. The doctor must “open you up” and physically go inside, see the implants, and remove the implants and adhesions. In my case, I had a robotic laparoscopy. Once the doctor was inside my abdomen, he learned it was not a dermoid cyst, but rather a chocolate cyst (endometrioma) which had decimated my left ovary. He also was surprised to find Stage IV Endometriosis throughout my pelvic cavity, on my liver, on my diaphragm, and bowel. Pathology reports confirmed his findings.
Due to the lack of non-invasive testing, and a general “unawareness” of the disease and it’s symptoms, diagnosis may take 10 years or more. Had I only known 20 years ago that it was not normal…
Potential Blood Tests for Recurrence:
CA125 is a blood test that may or may not help in the determination that Endometriosis has returned in a woman who has undergone laparoscopic excision surgery. CA125 plasma is found in all women, with or without Endometrosis. Endometriosis sufferers apparently have a higher level of CA125 plasma in their system. For a woman who has had her Endometriosis implants excised,supposedly her CA125 levels return to normal, stable levels. If those levels become significantly elevated, her physician may suspect that the Endometriosis has returned and it is time for another laparoscopy. However, Serum CA125 blood tests are not a certain way of diagnosing the presence of Endometriosis.
On a side note, CA125 tests also act as a “biomarker” to test for women who may have Ovarian Cancer. They would also show elevated levels of CA125. Another reason why this biomarker test is not a proven way to confirm the presence of Endometriosis.
New Tests Being Developed:
There may be a tissue-sample test to help diagnose Endometriosis on a genetic level. Certain genetic qualities may present themselves, even altering slightly with the different Stages of Endometriosis. However, this research is very recent (published September 2014) and greater testing of their findings is needed before an actual procedure can be used in modern medicine. You can read all about it here.
An Australian team believes they’ve found a way of diagnosing Endometriosis by running a biopsy on a sample of the uterine lining (endometrium) and testing it for the presence of Endometriosis nerve fibers. This study was published in 2009 and further testing was needed.
There are also ongoing research studies to continue to identify the genetic breakdown of Endometriosis. The Feinstein Institute was commissioned by the Endometriosis Foundation of America to conduct tests and after two years of literary research,they have finally begun the ROSE Study. Research Outsmarts Endometriosis will study 200 women per year by testing their DNA, Endometriosis biopsies, medical histories, etc. to get a better glimpse into Endometriosis on a molecular and genetic level. If interested, more information on ROSE can be found here. The results of this study may lead to further avenues of non-invasive diagnoses.
UC San Diego is also currently researching the variant levels of protein levels in healthy women vs. women with Endometriosis. The World Endometriosis Research Foundaton continues their efforts to aid in standardized collections of samples and data for Endometriosis research. And the World Endometriosis Society holds a Congress every few years to discuss present studies and findings and future efforts to help not only diagnosis but cure Endometriosis. Their next Congress is scheduled for May 17-20, 2017.
With all of these studies, efforts, and brilliant minds, there will be a non-invasive test one day in the future. And there will also be a cure. One day.
*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic. Today’s topic came from my friend, Erin Curlee, “Can they (modern medicine) tell that a woman has Endo by abnormal blood tests?” So research began! Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
A Swedish friend of mind sent me an article about a Swedish gal, Emelia, who died in 2011 due to complications of Endometriosis, and (more importantly) the neglect of her physicians. You can read it here, but unfortunately it’s all in Swedish. Google translate gave me the gist of it (which you can read here).
Emelia was diagnosed with Endometriosis when she was 21 years old, among the usual places it was also found on her intestines. In 2010 (she was approx. 26) she had been suffering from severe constipation (sometimes for periods of up to 10 days) which we well know is a symptom of Endometriosis. Over the next nine months, Emelia saw 32 different doctors. That’s right…thirty-two. Nobody could resolve her constipation, symptoms, or her pain. She sought referrals to an Endometriosis Clinic at the Uppsala University Hospital in the hopes they could help. But her referral requests were denied.
In 2011, she was admitted to the hospital due to her severe constipation and weight loss. She couldn’t eat, couldn’t keep any food down, and and constantly vomiting. Her Body Mass Index (BMI) dropped down to a 14 (severely underweight). The hospital was unable to perform a colonoscopy because she was so backed up. Her mother says that her stomach felt rock hard, like she had “a baby inside.” Emelia underwent surgery, and the doctors removed 10 liters (2.5 gallons) of feces!
I repeat : TWO AND A HALF GALLONS!!
Four days later, while still in the hospital…Emelia died. Her official cause of death : blood poisoning, aka Septicemia.
Her mother told reporters, “I amfully convinced thatEmiliabeen aliveif inGothenburgtakingher complaintsseriously.Although shemet so manyspecialistssonobodynoticed thatshewas about tofade away.” (Pardon the poor Google translation…)
It was all a downhill spiral, hastened by physician neglect. An Endometriosis diagnosis, complaints of constipation and pain, nothing done, her body couldn’t fight it any longer…the surgery she had was too late, she suffered a bacterial infection, and she passed away. I wouldn’t say Endometriosis killed Emelia. She died of medical malpractice and neglect…Poor, poor Emelia.
Which brings me to the point of today’s EndoBlog : Physicians need to truly listen to their patients. Understand their complaints and questions. And not just pass them off as a weak patient, or a prescription-chaser. I am very fortunate to have a Primary Care Physician and a Gynecologist who are both very well aware and very experienced with Endometriosis. Unfortunately, though, many women are not.
If you have Endometriosis and your physician is not either taking you seriously or is not helping you, please, please, PLEASE find another. You know your body. You know your pain. There is no way your physician can ever understand what you’re going through. Find the right doctor for you. Find them now.
~I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
In all of the many books and webpages I’ve read since my Endometriosis diagnosis, I’ve read the same stats over and over. 1 in 10 women will develop Endometriosis. 176 million women affected worldwide. But where did those stats come from? When were they last updated? How do they track it?
After scouring the web, I finally found some of the sources of those figures, but nothing that actually gives me a current number of diagnoses around the world today:
In September, 2014, C Mehedintu, MN Plotogea, S Ionescu, and M Antonovici published “Endometriosis Still a Challenge.” J Med Life. Sep 15, 2014; 7(3): 349–357. The article states that 10% – 15% of women of reproductive age suffer from Endometriosis.
The Florida Hospital does not cite their source, but states that 5.5 million women in North America have Endometriosis, and that it effects 2% – 10% of women in their reproductive age. Pit those figures against those presented by the Endometriosis Foundation of America, which state 8.5 million women in North America have Endometriosis. See how frustrating it can be to pin down a figure?
July, 2007: Rogers’ article references an article which states the costs of treating Endometriosis in 2002 in the U.S. along was approximately $22 Billion, citing between $1,023 – $2,801 annually for each patient. This figure took into account “productivity loss.” To quote the author, “There is a need for more and better-designed studies that carry out longitudinal analyses of patients until the cessation of their symptoms or that model the chronic nature of endometriosis.” Simoens S, Hummelshoj L, D’Hooghe T; Endometriosis: cost estimates and methodological perspective. Hum Reprod Update. 2007 Jul-Aug; 13(4):395-404.
October, 1999: An article cites that Endometriosis effects between 5% – 10% of women. Caroline Wellbery, M.D.; Diagnosis and Treatment of Endometriosis; Georgetown University School of Medicine, Washington, D.C.; Am Fam Physician. 1999 Oct 15;60(6):1753-1762.
June, 1997: Rogers’ article references an article which states that 1 in 10 women will develop Endometriosis. Eskenazi B, Warner ML; Epidemiology of Endometriosis. Obstet Gynecol Clin North Am. 1997 Jun;24(2):235-58.
Since most of these figures in the past 20 years have all been relatively similar, all of this research led my curiosities to “When was Endo first discovered?”
Ivo Brosens (Professor Emeritus of the Catholic University Leuven, Belgium) and Giuseppe Benagiano (of the Sapienza University of Rome’s Department of Gynecology-Obstetrics & Urology) wrote an article in 2011 entitled, “Endometriosis, a Modern Syndrome.” They state that Thomas Cullen was the first to accurately describe and classify Endometriosis. Further research shows Mr. Cullen’s discovery was back in 1908, just a little over 100 years ago! We’ll get there…
In 1880, Malaria parasites were discovered in a patient’s bloodstream. During the building of the Panama Canal and the occupation of Cuba, the U.S. upped it’s efforts to control the disease and successfully “eliminated” it from the U.S. by the efforts of the Center for Disease Control in 1951. It took 70 years from discovery to cure.
In 1912, Measles had become a problem in the States and had to be reported by all physicians. In the first decade after, 6,000 deaths were reported. A vaccine was created in 1962 and made available; however, Measles wasn’t considered “eliminated” from the U.S. until the year 2000. That’s 88 years.
So, in conclusion, what have I found today? That different sources all have different estimates of how many women have Endometriosis today. It has varied between 2% – 15% of women either have, or will develop, Endometriosis. To quote the National Institute of Health, “Because some women might have Endometriosis, but do not have symptoms, it is difficult to know exactly how many women have the condition.” The world may never know just how many women carry this disease inside of our bodies.
The one thing I am certain of since today’s assignment: too many women have Endometriosis. Better treatment, and a cure, must be developed. And I know steps are being taken by various agencies around the globe to do just that.
*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic. Today’s topic came from a fellow WordPress blogger, Elizabeth, “How about some percentages and recent stats on Endometriosis?” So research began! Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa