Some medications are necessary to keep people alive (such as radiation and other treatments for cancer and augmentation therapy for alpha-1 antitrypsin deficiency), which outweighs the side effects if that's what patients are looking for. However, with other illnesses (for example endometriosis), those suffering are trying to decrease their pain and other symptoms as well as be able to bear children.
I talk about Lupron frequently because of what I and so many others who are suffering with endometriosis have been through when we tried this as a treatment. Lupron is an injection that is used to treat prostate cancer, but many doctors/gynecologists use it to treat endometriosis. Because it is used for cancer treatment, this makes it a chemotherapy drug. Endometriosis is not cancer even though it can spread throughout any part of the body. So why are doctors trying to treat an illness that isn't cancer with a chemotherapy drug? This is one question that has yet to be answered other than with the response money.
Side effects that people who use Lupron can experience and doctors may not tell patients include osteoporosis (thinning of the bones, brittle bones no matter the age), suicidal ideations, brittle or breaking teeth, hot flashes/menopause/night sweats, headaches, among others. Oftentimes, these side effects are irreversible meaning once you have them, you can't improve them. For example, once you break a tooth or have osteoporosis, you can try to prevent breaking other teeth by taking more vitamin d, calcium, etc., but you can't grow a tooth to replace it. Once you injure a bone, you can't go back in time to not injure the bone. You can use crutches or a splint to try to heal the bone as much as possible, but it will never be the same. This is how side effects can be life altering.
Lupron isn't the only medication that causes harmful side effects that may be worse than what the medication is trying to treat.
Should money outweigh the side effects that patients may experience from a medication? NO.
Is it true that doctors can't predict which side effects each patient will have from the medication? YES, but patients still have the right to know all of the information about the drug from their doctor upfront.
Should doctors give patients ALL of the information about a medication before asking the patient if they want to use it as a form of treatment? YES.
Unfortunately, this isn't how the health care system or the world works. We are responsible for looking up information about our illness, treatment options, and any other important information that could affect our health care. We have to be our own advocate.
Please research the treatment options you are being offered for your chronic illness as well as other options you may have before making a decision because side effects may not go away and can be life altering. It's important to know the side effects that are possible and weigh your options with the illness you are trying to treat.
I hope you find this information helpful.
It's important when talking about endometriosis, we talk about fatigue. Unfortunately, fatigue is something that quickly accompanies endometriosis and can be life altering. Being in a constant state of pain takes a lot of energy out of a person. Having to plan your day/life around a chronic illness is exhausting.
Fatigue is different from just being tired. With fatigue, it doesn't matter how much sleep or rest you get, you're still tired. Fatigue leaves you with little to no energy or motivation. Some people who suffer with endometriosis also have chronic fatigue syndrome, which is oftentimes diagnosed when there are not any other explanations for symptoms the patient is experiencing. It can be difficult to get a proper diagnosis because there isn't one single test that leads a doctor to diagnose a patient with it.
Fatigue can also occur because of a vitamin deficiency. There have been studies conducted to determine the link between people who have endometriosis and vitamin D deficiency as well as a link between low vitamin B levels and chronic fatigue syndrome. The levels of vitamins can be checked by your doctor by ordering blood tests.
Early menopause and other gynecologic risk indicators for chronic fatigue syndrome in women (1,2) is a study that was conducted from 2004 to 2009 to determine if there is a link between women who have endometriosis, an early hysterectomy, menstrual abnormalities, and/or early menopause and chronic fatigue syndrome. The study found that 71 percent of the women who had a complete hysterectomy at a significantly younger age developed chronic fatigue syndrome. At the time of this study, more research needed to be conducted to determine if these body changes cause or lead to chronic fatigue syndrome.
I haven't been diagnosed with chronic fatigue syndrome, but fatigue is something I have struggled with for more than ten years. While I was attending college, I would study in my bed, and more times than not, I fell asleep. I wasn't like most college students. I couldn't pull all nighters studying or going out because I was always tired no matter how much sleep I received each night. Energy is something I didn't have then and still don't. I do have a vitamin D deficiency, which I was diagnosed by a doctor and take a vitamin D supplement. I have talked with many women who have endometriosis and suffer with some degree of fatigue and/or vitamin deficiency.
Rest is necessary to heal. It's okay to rest however long you need to. Fatigue that leaves you with no energy, no motivation, and canceling plans regularly is not normal. If you feel like you could have chronic fatigue syndrome and/or a vitamin deficiency, talk to your doctor about possible testing and treatment options.
I hope you find this information helpful.
Prescription medications are manufactured by drug companies that are purchased by pharmacies for patients to receive to help treat a wide range of illnesses. If you have endometriosis, kidney stones, alpha-1 antitrypsin deficiency, neuropathy, high blood pressure, or any other chronic/long term illness, you’ve had some type of prescription medication.
I want to provide you with some advice I wish I would have had before I was diagnosed with endometriosis. Don’t always trust what medications your doctors are prescribing. Ask questions. No question is a dumb question. If your doctor won’t answer your questions, my recommendation is find another doctor. Do your own research no matter how much you trust your doctor or how long you’ve been seeing them. Unfortunately, some doctors can and do receive kickbacks (money) for prescribing certain medications. Drug companies can and have been sued for how they advertise their medications, but that doesn't stop them. How many times have you been watching TV and seen a commercial for the "newest" or "best" medications on the market?
One medication that I know this to be true for is Lupron, which is often prescribed for endometriosis treatment even though it’s a chemotherapy drug for prostate cancer. In my experience and others that I’ve talked to, our doctors failed to mention the awful side effects that can accompany Lupron use. Orilissa is a new medication that is similar to Lupron and has received a lot of advertisement. Even though it’s not guaranteed that we would experience these side effects, we should have been told just in case we didn’t want to take that risk. We trusted our doctors to be upfront with us. I was young and didn’t know any better. I trusted my doctor to give me all of the information, not just the information they chose to share. How can patients make informed decisions about their bodies without all of the information? To these drug companies and the doctors that prescribe their medications and receive kickbacks, it's always about the money. Money outweighs the patient's health, which is disgusting, and in my opinion, should be against the law.
It is important that we do our own research to make sure we are making the right decision for our bodies and what medications we decide to put in our bodies as they can have lasting effects down the road. I hope you find this information helpful.
I decided to take it to the streets (the social media streets that is) and ask people what they would like to know about alpha-1 antitrypsin deficiency as it’s not a well-known illness. Here’s what people wanted to know:
• At what age does it start?
Alpha-1 antitrypsin deficiency is a genetic condition, but isn’t usually checked in infants. The onset of symptoms can start at any age and smoking increases the onset of symptoms. Someone who doesn’t smoke is less likely to show symptoms than someone who smokes.
• What is it?
Alpha-1 antitrypsin deficiency occurs when the liver doesn’t produce enough alpha-1 antitrypsin protein that is made by the liver and helps the lungs function properly. It can cause decrease in lung function, shortness of breath, need of supplemental oxygen and inhalers, as well as other symptoms.
• Can someone have it and the symptoms never manifest? Also, if the symptoms don’t manifest, how does it affect overall health?
Yes, someone can have alpha-1 antitrypsin deficiency, but never show symptoms. As far as showing symptoms, smoking is a major contributing factor to showing symptoms and further progression of the illness. If symptoms (like shortness of breath) don’t manifest but someone knows they have it, they can go to a pulmonologist to have routine lung function tests to see if they are losing lung function and need to start treatment for alpha-1. It is possible to live a long life with alpha-1 with lifestyle changes and early augmentation therapy for treatment. It’s also possible to have it and not ever experience symptoms depending on lifestyle.
Thank you so much for participating with your questions! I hope you all find this information helpful in learning more about alpha-1 antitrypsin deficiency.
I decided to take it to the streets (the social media streets that is) and ask people what they would like others to know about endometriosis. Who better to talk about endometriosis than those who suffer with it every day? Here’s the much needed information we want people to know about the disease:
• “We are almost always in pain. There is no cure.”
• “Endometriosis is more common than asthma and diabetes. Yet the medical community more specifically the ACOG is so out dated, people are still taking 9-10 years to get a diagnosis. It only takes 3.5 years to sail around the world, but 176 million people are suffering worldwide with endo and most OBGYNs do not know how to properly treat endo.”
• “Endometriosis is not just ‘killer cramps.’”
-Heather Guidone, Center for Endometriosis Care
• “Endometriosis can lead to other health issues as well as mask itself as other health problems without properly being diagnosed.”
-Rebecca Gardner, Worldwide EndoMarch South Carolina
• “It’s more than just a period issue. It impacts your WHOLE life. Not just your period.”
• “We want to be there, more than you know, but some days we just can’t. Physically, mentally, emotionally endometriosis steals so much away from you.”
• “There is NO cure, despite the myths you may hear, as of right now it’s a life-long invisible illness.”
-Courtney Raye-ann Vallier
• “No person should miss out on school, career, social participation, or motherhood because of pain and painful periods.”
-Dr. Sallie Sarrel, PT, ATC, DPT
• “Extra pelvic disease is not rare. Endometriosis is a whole body disease that can affect every system of the body.”
• “It spreads like wildfire, is hard to get rid of and causes constant pain. We aren’t faking pain. . . we’re faking wellness.”
• “I recently had a flare so bad that I felt like I was in active labor. I was vomiting and going in and out of consciousness because of the pain. I read somewhere that the pain we go through can actually feel like a woman who is 7-8 cm dilated, in active labor, having a contraction. I definitely felt that.”
• “Even excision surgery is no cure! I’ve had countless ill-informed doctors dismiss my endo because I had that surgery.”
• “It doesn’t just destroy our bodies. It destroys our minds and hearts because of the depression and anxiety we get from being in pain 24/7 and everyone treating us like it’s all in our heads. It also destroys relationships with our family and friends. It’s not just us that suffer. It’s everyone close to us who suffers too.”
-Alexandra Ali Morgan
• “It takes a toll on your relationships. People that love you try to understand, but have no idea what to do to help so it is also frustrating for them not just us. My hubby and I got in to that talk the other day. I have always said this is an US thing even though I feel like I’m fighting by myself he has never left my side! We also have to try so many medications for our symptoms.”
• “We want to get better to feel better and do what we want to do. Don’t just see us as baby making machines, trying to help us get pregnant. Especially when you haven’t even asked if that is our goal. Ask the patient what their goal is!”
• “We experience painful sex and some of us will never be able to be a mother.”
• “Endometriosis caused my bowel and bladder pain. I haven’t had those pains in five years since having excision surgery.”
• “There is no cure despite excision by a top doctor, despite those commercials, despite anti-inflammatory diets. It’s managed if you have lots of money. Most of us have much more than endo.”
• “Stop. Comparing. Normal. Periods. To. Life. With. Endo.”
• “It’s not just a ‘woman’s disease’. It can affect the entire family when an individual suffers from endo.”
-Melissa Tison, Endo InVisible
• “It is a horrible, silent disease.”
• “Suppressives in the GnRH category, hysterectomy with ovarian removal, and high doses of progesterone are putting people into severe estrogen deprivation far too young. It’s leading to severe osteo issues, which are not always reversible.”
• “Researching and finding a competent doctor made me not commit suicide. I had a plan for it if he wasn’t as good as he sounded. He was even better. Finding him saved my life.”
• “There is not cure even after a hysterectomy, which I had in 2017.”
• “Endo almost killed me; it’s not the end. I’m living hope.”
• “It will completely redefine what your ‘normal’ looks, feels, and acts like.”
-Michelle N. Johnson, Fighting Fiercely
• “More of us are told the pain is in our heads than actually being believed and helped. It’s not just a bad period!! It’s so so so much more.”
• “Endometriosis is tissue similar to the uterine line. It is not identical to uterine tissue.”
As you can see, endometriosis is a complex disease that has a wide range of physical, mental, and emotional aspects that impact every facet of our lives as well as our loved ones. It’s important that we continue speaking up as much as we feel comfortable to help spread awareness, provide education, and hopefully get closer to finding a cure.
Thank you so much to everyone who participated in this blog. I’m so grateful you all wanted to share. We are all strong Endo warriors! Keep fighting!
Endometriosis is a disease that occurs when tissue similar to the uterine lining is found in other places of the body like colon, ovaries, Fallopian tubes, as well as others.
Because endometriosis can be found anywhere in the body causing a wide range of symptoms, it also comes with other chronic illnesses or comorbidities.
Comorbidities associated with endometriosis include, but are not limited to:
As you can see, many of these illnesses have symptoms that overlap, which can make it difficult to receive the proper diagnosis. I have talked to many people who suffer with endometriosis and have also been diagnosed with other illnesses. It's important that we listen to our bodies and advocate for ourselves as much as we can to receive diagnosis and treatment for our illnesses. Unfortunately, we can't only rely on our doctors.
Personally, I was diagnosed with endometriosis in 2010. I have also been diagnosed with vitamin D deficiency, IBS, PCOS, IC, and osteoporosis.
I hope you find this information helpful in your health journey.
Endometriosis is a disease that occurs when tissue similar to the uterine lining is found in other places of the body like colon, ovaries, Fallopian tubes, as well as others. The only true way to diagnose endometriosis is through laparoscopic surgery.
Two techniques that doctors use to remove endometriosis are ablation and excision. Ablation is burning the diseased tissue and doesn't remove all of the disease, only the surface. Excision, on the other hand, is cutting the disease and allows the surgeon to remove most, if not all, of the disease. Excision has a much higher success rate than ablation, but all doctors are not trained in excision laparoscopic surgery or frankly, what endometriosis is.
Because of this, patients with endometriosis have multiple surgeries trying to treat their pain and other symptoms. Each surgery requires at least one incision, most likely two to four incisions depending on the instruments the surgeon needs and where the disease is located. Along with incisions, the patient is put under general anesthesia, which can have its own risks. Being put to sleep multiple times can be dangerous. Having multiple surgeries can increase the amount of scar tissue patients have and can cause adhesions or organs sticking together. People can also get hernias from surgeries. Something as simple as sneezing can send someone who has just had abdominal surgery into increased pain and feel like a pulled muscle. As you can imagine, this is all extremely painful.
The recovery time for laparoscopic surgery can range from two to six weeks depending on what your doctor recommends and how extensive the surgery is. This means patients have to take time off work, which can cause financial strain.
Imagine you're living with pain that feels like barbed wire is around your abdomen and your insides are going to fall out. This is how at least 176 million people worldwide live every day. Now imagine that there is no blood test to properly diagnose your illness, but instead, only surgery. This is the reality of those who suffer with endometriosis.
Endometriosis has been found on the bladder, gallbladder, stomach, even the brain, lungs, and eyes. This is tissue that bleeds, causes inflammation, and doesn't belong on any of these organs. This is why other illnesses often accompany endometriosis.
In essence, a surgery is trauma to the body. When a doctor burns or cuts tissue, that causes trauma to the body so the body needs proper time to heal. I use the word trauma because trauma is physical injury and is synonymous with injury, damage, hurt, wound, sore, and lesion.
Doctors who are operating on patients with suspected endometriosis should understand the anatomy of each organ to properly diagnose and remove disease. Otherwise, there could be complications immediately or later down the road for the patient. It seems that doctors would rather operate on patients instead of referring them to an endometriosis specialist for proper care.
Personally, I have had six abdominal laparoscopic surgeries by six different doctors for endometriosis. I have had endometriosis on my bowels, ovaries, and pelvic wall. Five years ago I made the decision to have a complete hysterectomy (removal of both ovaries, uterus, and cervix) in hopes to find some relief even though I know it's not a cure and wouldn't be able to have biological children. I still experienced pain until I had excision surgery by an endometriosis specialist. I have also had my appendix and gallbladder removed. I tried several different treatments for endometriosis, but couldn't find much if any relief. This is why I had multiple surgeries.
Unfortunately, this is the truth for so many who suffer with endometriosis. It's time we get endometriosis sufferers proper care from an endometriosis specialist and better options for treatment that aren't as invasive and life altering.
Endometriosis is a disease that occurs when tissue similar to the uterine lining is found in other places of the body like ovaries, Fallopian tubes, bowels, as well as other areas. At least 176 million people worldwide suffer with the disease every day. There are many different treatment options available for endometriosis as there is NO cure.
Have you ever been recommended a treatment for endometriosis and wondered how others reacted to it? After our Facebook Live event, I invited Michelle N. Johnson from Fighting Fiercely: Unveiling the Unknown about Endometriosis to share her experience with the treatment options she has tried for her endometriosis symptoms.
Birth Control Pills
Birth control pills are often the go to when someone is first experiencing symptoms of endometriosis like pelvic pain and heavy bleeding. There are different types that have different amounts of estrogen and/or progesterone. Research before trying birth control as there could be side effects like possible liver damage, pulmonary embolism, and changes in mental behavior that people may experience from birth control.
Samantha’s Experience: I have been on several different birth control pills in a rather short amount of time. From 2010 to 2012 I tried Ortho Tri Cyclen Lo, Necon, Seasonique, and Natazia trying to find some sort of relief. At one point, I had a period for three weeks, but my doctor didn’t see anything wrong with this.
After my initial diagnosis and surgery in 2008, I was given a myriad of different birth control pills to help manage symptoms. So much so that with the exception of Ortho Tri-Cyclen and Lo-Loestrin I can’t even remember them all. Like Samantha, doctors ‘experimented’ with several different types back-to-back in a short period of time. As a result, I firmly believe that my negative side effects were terribly compounded.’ I experienced severe mental and emotions mood swings, headaches, and very painful, increased breast tenderness, regardless of being on my cycle or not. Ultimately, I settled on taking Sprintec continuously so as not to have a monthly cycle, since this is when my symptoms were most severe. I did have periodic episodes of breakthrough bleeding occasionally. Whenever, this occurred, my doctor would have me add 5-10mg of norethindrone to my birth control pill to stop the bleeding. This method worked very well for me for over 5 years.
Depo Provera is a birth control shot that is usually administered every three months by a doctor.
Samantha’s Experience: I tried Depo Provera for a short amount of time to try to help with my endometriosis symptoms. It did help with any of my endometriosis symptoms and I experienced some side effects from it like hair loss.
Michelle’s Experience: I had always been nervous about having 3 months worth of medicine being injected into me at one time, so I never tried Depo Provera.
Lupron is a gonadotropin-releasing hormone (GnRH). It shuts down ovaries and puts the person using in in menopause until the drug is out of her body. Lupron is also used for men who have prostate cancer.
Samantha’s Experience: I was administered three doses of Lupron from 2011-2013 by two different doctors. With the first two doses, I experienced side effects like hot flashes, night sweats, and headaches. I could tell a small difference in the amount of pain I was in. However, when I received the third dose in 2013, my pain increased and my doctor told me that this occurred because Lupron was killing endometriosis in my body. A year later I had my hysterectomy and the following year I was diagnosed with osteoporosis at 24 years old. Do I blame Lupron? Yes. Has or will a doctor come out and tell me Lupron caused me to develop osteoporosis? No.
Michelle’s Experience: I was diagnosed with endometriosis in January 2008 and scheduled for surgery that March. I was told by doctors that I would need to take Lupron for 3 months leading up to my surgery to help shrink my endometriomas and severe disease to make it operable; (something I now know to be absolutely false) and for another 3 months after to stop it from growing back (Another lie that I now know to be false). From the very first dose I experienced horrible side effects. The first injection did not stop my monthly cycle as I was told it would and I experienced contractions and bleeding so severe I ended balled up on my floor in pain needing to be carried to the car to go to the hospital. Being told ‘this would pass’, I continued with the injections only to experience severe depression and anxiety, suicidal ideations, hair loss, rapid weight gain, severe acne breakouts, night sweats, severe hot flashes, vertigo, seeing spots, hearing sounds that weren’t there, blurred vision, memory loss, headaches, vaginal dryness, bruising very easily, and extreme mood swings. I also developed severe TMJ and teeth clenching/weakening for which I still have to wear a protective mouth guard nightly 11 years later. I also still struggle with episodic anxiety and depression as well. A few years later, after my disease progressed, I was offered a second ‘round’ of Lupron by a different doctor. Having educated myself and thoroughly researched everything that the doctors DID NOT tell me about, I absolutely declined to put that in my body again.
Neither of us have experience with Orilissa
Sometimes changing our diets can be helpful to provide some symptom relief. This can include removing gluten and/or dairy as well as other triggers like alcohol and caffeine for two or more weeks and then adding them back to your diet slowly to see how you do.
Samantha’s Experience: I’ve never consumed a lot of sugar, caffeine, or alcohol. In 2013 before I had my hysterectomy, I did the elimination diet to remove gluten and dairy from my diet for two week and added it back slowly. I noticed a little difference in the amount of pain I was experiencing, but to me it wasn’t enough to keep me from having surgery and a complete hysterectomy.
Michelle’s Experience: In 2010, after a series of post op ‘Endo-Flares’, and finding little relief with the pharmaceutical pain management treatments at the time, I decided to work with a nutritionist to see if I could get any sustained relief through changes in my diet and nutrition. For about 6 weeks, I kept a detailed food journal chronicling everything I ate, as well and any subsequent pain/symptom flares. Interestingly enough I identified several specific foods that caused me symptom distress; namely: red meats, pork, sweets(sugar), and dairy (namely cheese). Even though I am what you would call a just social drinker, I also noticed that my tolerance for alcohol had significantly decreased. Although I playfully refer to myself as a ‘flexitarian’, as I am not completely vegan or vegetarian, I have found that eating a more plant based diet and continuing to eliminate my trigger foods gave me even greater sustained relief than most of my medications.
Herbal remedies are things that doctors don’t normally prescribe. They are often derived from some sort of plant and can aid in decreasing some symptoms related to endometriosis or other conditions.
Samantha’s Experience: Endovan is a supplement that I used before having my hysterectomy. I used it for about two months and noticed I didn’t feel so bloated. It did help with some of my pain, but my ovary pain remained constant.
Michelle’s Experience: As a massage therapist and wellness educator, I am always studying various herbal therapies to incorporate not only in my practice, but for my personal use as well. Like all medicine, it should be thoroughly researched and you should let your doctors know if you are using them, as some herbal supplements can be contraindicated with pharmaceutical medicines. One supplement that I used was Valerian Root, which is a pretty powerful herb known to provide pain relief, act as a muscle relaxant, helping to calm insomnia and anxiety. I have used this as both a tincture and a tea. I have also used Milk Thistle, which was actually recommended by a liver specialist to promote liver and bone health. Because of the high dose of pain management drugs I was taking, my liver function had started to become compromised. Normal levels of liver function rage between 14-19. Mine was over 900! Though it took some time, and other pharmaceutical meds were used, I strongly believe milk thistle aided in regulating my normal liver activity. I also explored different herbal CBD products including topical creams, salves, pain patches, and ingestible oils. While different products yielded varying degrees of relief, overall I found them to be an effective supplement in helping to keep my pain at minimal levels; especially the topical pain patches. CBD products are a hot topic right now, and issues of legality vary from state to state. So again, please do your research before blindly consuming.
Ablation is one technique to perform laparoscopic surgery for endometriosis. The surgeon cauterizes or burns the diseased tissue.
Samantha’s Experience: I have had four ablation surgeries: 2010, 2012, 2013, and 2014. Each time, my symptoms didn’t go away or came back within six months of having surgery. Each time I had surgery, scar tissue was also removed. In 2010, I was told she cauterized what disease she could as I had disease too close to my ovaries that she couldn’t remove. During my surgery in 2012, I was told it looked like I never had endometriosis. In 2013, I had disease in my colon, around my ovaries and pelvic region. I talk about my experience in 2014 in the hysterectomy section.
Michelle’s Experience: By November 2017, I had been diagnosed with severe diffuse adenomyosis, and based on symptom recurrence, both my doctor and I believed that the endometriosis growths/lesions had returned. We’d scheduled a diagnostic lap, to confirm suspected findings; with the plan being to excise any endometriosis present. As it turned out, it was actually the adenomyosis causing my pain. The disease had bore a literal hole in the back of my uterus which my doctor described as an internal ‘waterfall’ of sorts, continuously bleeding inside of itself, creating pools of encapsulated blood all over my uterus. But, because I had not consented to hysterectomy at that time (the only definitive cure for the type of adenomyosis that I had), my doctor opted instead to do ablation to cauterize areas of the uterus, in order to temporarily stop the bleeding; just long enough so that we could regroup and reformulate a more appropriate treatment plan.
Excision is the second technique a surgeon (oftentimes an endometriosis specialist) uses, in which the diseased tissue is cut. This allows the surgeon to get more of the tissue removed and decreases the amount of scar tissue that may form. Excision has a higher success rate, which means it is a lower rate or recurrence.
Samantha’s Experience: I had my excision surgery in 2015 with an endometriosis specialist. He found endometriosis in my colon and pelvic wall, diagnosed me with interstitial cystitis, and retroperitoneal fibrosis. Since then, I have not needed to have an endometriosis surgery or had pelvic pain like I did. Is excision surgery a cure? No, but it has the highest success rate of all treatments for endometriosis.
Michelle’s Experience: I had my initial excision surgery using the robotic DaVinci method in 2008. At the time, I didn’t know enough about my diagnosis to ask if the surgeon was an Endometriosis Specialist, but I do know that she was the founder and head of the gynecologic center at the hospital where I was treated. I was diagnosed as stage 4, and was told I had one of the worst cases they’d ever seen. Endometriosis was found all over my pelvic cavity, and had ravaged my left ovary and fallopian tube, both of which had to be removed. She also removed a dangerously large endometrioma and a smaller one from my right ovary as well. It would be a 10 years before I’d need another excision surgery. When I had my next major surgery, my specialist indicated that no evidence of any new endometrial growths or lesions were present.
A hysterectomy is a surgery in which the surgeon removes the uterus. Patients can decide with their doctor if they want to keep one or both ovaries and their cervix.
Samantha’s Experience: My surgery in 2014 was my complete hysterectomy. I was 23 years old and so tired of being in pain; I just wanted to be able to get on with my life. I knew going in that a hysterectomy was not a cure for endometriosis, but I was hopeful that it would decrease my pelvic pain. Going into surgery, my doctor wanted me to keep one of my ovaries for hormonal reasons. However, I made the decision to have both ovaries removed because they were both causing me a great deal of pain. During my hysterectomy, I had both ovaries, uterus, and cervix removed. Within a few months, I was experiencing the same pain, but my doctor told me there was nothing else he could do for me. This led me to find an endometriosis specialist.
Michelle’s Experience: I am actually just a little over a year post op from my hysterectomy I had in May 2018. After doing everything I could for 5 years to try and preserve my fertility, my adenomyosis had progressed to the point where there was literally nothing else I could do. I had maxed out on all of the highest doses of all of the pain management drugs, including opiates; and they had all stopped providing any measure of pain relief. The excessive bleeding had become almost constant and all of the medications had begun to compromise my liver function. Also, the hole in my uterus was growing and would only get bigger. Without the pain relief, I could no longer function with a productive quality of life. If I kept taking the meds, I'd be risking complete liver damage and failure. Either way, the progression of the disease would only get worse. It was at this point that I made the gut wrenching difficult decision to move forward with the hysterectomy. I had my uterus, cervix, and right Fallopian tube removed. I also had to have my bowel detached from my uterus, removal of several small fibroids, and slight excision of some residual scar tissue from my previous surgery. We decided to keep my right ovary to help maintain natural hormonal function, as my doctor felt I was still too young to be thrust into early menopause. I was grateful given my previous experience with this on Lupron.
Bioidentical hormones are hormones that most closely resemble what our bodies make and are compounded by a speciality pharmacy. This allows medical providers to prescribe only the hormones each individual needs instead of prescribing the same thing for each patient as everyone is different.
Samantha’s Experience: Before having my hysterectomy, I did saliva testing to see where my progesterone, estrogen, DHEA, testosterone, and cortisol levels were at to determine if I had too much or not enough of a specific hormone and to take bioidentical hormones depending on my results. I was prescribed progesterone cream at this time that was specifically compounded for me. It did help with some of my symptoms, but I experienced breakthrough bleeding.
Michelle’s Experience: I have no experience with bioidentical hormones.
Samantha’s Experience: Over the years, I have been prescribed Ponstel, Ibuprofen, Celebrex, Elavil, Cymbalta, Percocet, Tylenol 3, and Norco to try to help with the pelvic pain I’ve experienced. The only medications that somewhat helped were Percocet and Tylenol 3, but I couldn’t take them if I needed to drive or go to work and school. Also, they weren’t fixing the problem.
Michelle’s Experience: Over the years I have been prescribed Ibuprofen 800 (4x’s/day, every day), Dilaudid, Fentanyl, Tramadol, Elavil, Neurontin, Mefenamic Acid, Vicodin, Norco, and Oxycodone. Elavil helped for a time. But, it took quite a bit of experimenting to find the right dose to both control the pain and allow me to function for daily life activities as higher doses can cause marked drowsiness. On milder pain days, Ibuprofen helped get me through work and social functions. When pain was at its worse, the Norco would help, but render me pretty much useless for anything but staying at home and sleeping due to its side effects as an opiate. On any given day, if I wanted to have any type of productive quality of life, I’d likely end up taking some combination of all three. But as Samantha said, none of those were actually eradicating the root cause of the pain. They were only minimizing the symptoms. Temporarily.
Pelvic Floor Physical Therapy
Pelvic floor physical therapy is a form of treating pelvic floor spasms/dysfunction and can help alleviate some endometriosis symptoms. Pelvic floor physical therapists are trained in exercises, stretches, and techniques that pertain to the pelvic floor region.
Samantha’s Experience: I went to pelvic floor physical therapy in 2013 pretty much every week for six months. While it did relieve most of my vaginal pain, I was still experiencing ovary and abdominal pain. This is one of the things that led me to my decision to have a hysterectomy. I still use some of the stretches I learned in physical floor therapy.
Michelle’s Experience: Pelvic Floor Therapy was an absolute God-send to me! I had it following both my surgeries in 2008 and 2018. Along with active and passive stretching, it also included external and internal muscle work. The internal work was unfamiliar and at times, very uncomfortable; but for me, it brought indescribable relief! When I had it in 2018, an unexpected benefit was that the internal work released a group of muscles that instantaneously relieved painful tightness and numbness I”d been experiencing in my low back and down my leg as a result of a nearly year long episode of acute sciatica; a secondary condition that many women with endometriosis experience. Even after 24 sessions of regular PT for my sciatica and low back pain, I did not get the level of effective pain relief that I got with pelvic floor physical therapy.
Samantha’s Experience: Before I had my hysterectomy, I didn’t feel like exercising because I was in so much pain and exhausted most of the time. When I wasn’t at school or working, I was laying in my bed trying to rest and get some form of pain relief. I started exercising regularly in between my hysterectomy and my excision surgery. I do think this helped decrease my recovery time after my excision surgery. I would exercise two to three times a week riding the bicycle at the gym and doing some arm, leg, and core exercises. I started out very slow and worked my way up to increasing repetitions.
Michelle’s Experience: Much like Samantha, when my pain and endo flares were constant, exercising was the last thing I wanted to do. If I wasn’t bleeding incessantly or experiencing contractions as if I were about to give birth, I was also lying in bed, wrapped in my heating pads and blanket just wanting it all to go away. Before this disease took over my life, I had a regular fitness routine and often enjoyed African Dance or Hip-Hop workouts or walking several miles each morning along the beach.
After both surgeries I experienced extended periods of post op fatigue and lethargy, so getting back into exercise has been quite difficult. But I generally start very slowly to ease back into it, usually doing a 15-20 minute video of moderate walking or mild cardio and building from there over time. For me, I think exercise has more of a positive effect on my mental and emotional well being, rather than my actual pain.
I want to thank Michelle for providing her experience with these treatment options for endometriosis and spreading awareness for the disease. Remember, everyone is different and what worked for one of us may or may not work for you. Please do your own research outside of this blog to determine what treatment option is best for you.
Samantha Bowick, MPH
Author of Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options
Founder of Chronic Illness Support, LLC
Patient Advocate with Chronic Disease Coalition
Michelle N. Johnson, LMT
Author of Fighting Fiercely: Unveiling the Unknown about Endometriosis
Patient Advocate with Chronic Disease Coalition
It’s crucial to go to your doctor appointments as prepared as possible. Unfortunately, we have to be our own advocate even when we feel awful. To me, this means having a list of illnesses you have, a list of medications you’re taking (prescriptions, supplements, etc.), a list of questions to ask your doctor during the appointment, researching endometriosis and treatment options (or the illness and treatment options you are going to see the doctor about), a list of your symptoms, a list of tests or procedures you think would be helpful in getting you closer to the answers you need to feel better, what treatments you have tried that didn’t help, specialists you’ve been to, as well as any other information you think would be helpful.
Here is an example of what I took with me to my doctor appointment regarding endometriosis before I had my hysterectomy in 2014:
• Irritable bowel syndrome
• Polycystic ovary syndrome
• Vitamin d deficiency
• Interstitial cystitis
• Progesterone cream
• Biest cream
• Vitamin d 5000 units
• What do my blood test results mean?
• Based off of what I’ve tried for treatment of endometriosis, what treatment options do I have left to try?
• Irregular periods
• Heavy periods
• Pain all the time that worsens with period
• Increased pelvic pain with standing
• Ovarian cysts
• Can’t wear tampons because of pain
Possible tests and procedures
• Bone scan due to Lupron and bone pain
• Excision surgery
Treatments already tried
• Birth control (Ortho Tri Cyclen, Natazia, Necon, Seasonique)
• Ablation surgery (2010, 2012, 2013)
• Colonoscopy (2010)
• Celebrex, Cymbalta
• Percocet, Ibuprofen, Tylenol 3, Ponstel
• Pelvic floor physical therapy
• Bio identical hormones
• Gluten free/dairy free diet
• Pelvic floor physical therapist
It is okay to question what your doctor is telling you. It’s your body and your right to refuse a treatment you don’t want to put into your body.
You can find out more in my book Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options.
Have you heard of alpha-1 antitrypsin deficiency, but not sure what it is?
How do you get diagnosed with alpha-1 antitrypsin deficiency?
What are signs and symptoms of alpha-1 antitrypsin deficiency?
Treatment options for alpha-1 antitrypsin deficiency
You can learn more about alpha-1 antitrypsin deficiency from Samantha’s upcoming book Living with Alpha-1 Antitrypsin Deficiency, which details her mom’s/family’s journey of the illness along with medical information. It will be published by Hatherleigh Press and distributed by Penguin Random House on August 27, 2019 and you can preorder today!
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.