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 women 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 occured, 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
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and upcoming book "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.