My journey with adenomyosis and endometriosis begins many years ago. While my symptoms continued to progressively worsen and eventually bring my quality of life to a halt, I sought out to solve my own medical mystery while enduring the most intense pain of my life. I had a hysterectomy four months ago and while it did help some of my symptoms, I unfortunately continue to experience debilitating pelvic pain. Subsequently, I continue to educate myself on endometriosis and adenomyosis. I want to share my experience and high-level learnings with you in hopes of helping you as you navigate this painful journey met with suffering and medical gaslighting by doctors who lack knowledge on the conditions. First, you should know symptoms of endometriosis and adenomyosis often overlap. This means the symptoms of either condition are similar and often mirror each other. It is possible to have adenomyosis or endometriosis without the other. However, in many cases both conditions coexist together. This is where many GYN doctors get it wrong. Moreover, contrary to popular belief a hysterectomy does not cure endometriosis. In fact, a hysterectomy (removing the uterus) will only cure adenomyosis by removing the uterus. For many surgeons this is the gold standard of treatment for adenomyosis. But a highly skilled surgeon with extensive experience is capable of successfully removing adenomyosis without removing the uterus. You do not have to lose your reproductive organs to free your body of adenomyosis. You have options. Removing your uterus will make it impossible for you to carry your own baby if you hope to someday become pregnant. If you choose adenomyosis excision with a skilled surgeon who can successfully reconstruct the uterus after adenomyosis excision you keep a vital organ a baby needs to grow – the uterus. If you have no desire to become pregnant this may be irrelevant to you. A hysterectomy is a permanent non-reversible surgery. I implore you to explore all options in your journey while educating yourself extensively to make a proper informed decision about your body. Remember these words as you continue reading: a hysterectomy is not a cure for endometriosis.
What is endometriosis and adenomyosis?
Endometriosis is a hormonally active inflammatory condition that causes lesions to form in normal tissue inside the body. These lesions create inflammation and for many a cascade of symptoms related to an inflammatory response. While endometriosis lesions are outside the uterus, adenomyosis is isolated to the uterus. Endometriosis is an inflammatory condition that can affect multiple organs within the body including the reproductive organs, bowels, bladder, diaphragm, etc. Additionally, it can also affect the autonomic nervous system due to creating a host of symptoms driven by chronic inflammation making it difficult to pinpoint one cause for specialists who are not educated in endometriosis. When your body is under chronic stress from high levels of inflammation caused by endometriosis it is difficult to recover from the smallest tasks and your body will become overwhelmingly fatigued. You will essentially go to bed exhausted and wake up exhausted the next day. The fatigue alone limits quality of life despite one’s best efforts to keep up with daily tasks. Endometriosis is not just a painful period. It is an inflammatory condition that causes abnormal growths of endometrial tissue outside the pelvis and these lesions must be excised. And it’s not ‘’all in your head.’’ Women are often handed a prescription for birth control or antidepressants and labeled with anxiety or depression when the underlying cause is endometriosis. It is common to experience severe anxiety or depressive symptoms when you have an underlying physiological illness causing miserable menstrual abnormalities while trying to keep up with a mountain of responsibilities. The underlying physical stress of a body enduring chronic inflammation makes every small task feel like a mountain. Endometriosis and adenomyosis are medical conditions. Tossing birth control and antidepressants at endometriosis is not going to treat the underlying disease process. At best, they can help mask certain symptoms for some people. However, for the majority of us the symptoms persist and will not improve until endometriosis and / or adenomyosis are excised.
Common symptoms of endometriosis and adenomyosis include (but are not limited to):
- Debilitating chronic pelvic pain (during period or may be chronic)
- Severe menstrual cramps and uterine spasms
- Pulling or tugging sensation from endometriosis bands / adhesions
- Nausea and / or vomiting
- Excess blood loss during menstrual cycles
- Heavy or prolonged periods
- Anemia and / or iron deficiency
- Bloating / abdominal distention
- Anxiety, depression, panic attacks and mood swings
- Pain associated with bowel movements
- Painful sex with penetration
- Back pain
- Uterine contractions
- Blood clots during menstrual cycle
- Dizziness / feeling lightheaded
- Extreme fatigue
- Pelvic pain radiating down the legs
- Infertility or miscarriage
- Difficulty passing urine or sudden urge to urinate
- Diarrhea and / or constipation
- Pelvic floor dysfunction including hypertonic pelvic floor
- Medical gaslighting (I included being medically gaslit while desperately seeking answers to these debilitating symptoms due to how frequent this happens)
How is endometriosis treated?
The gold standard for endometriosis treatment is excision of the endometriosis by the root. Ablation is ineffective and may spread endometriosis to nearby organs that are unaffected by the disease. Birth control does not treat endometriosis; it merely changes hormone levels trying to outsmart the body’s natural hormones to try to control the menstrual cycle through hormonal manipulation. This is not a cure, and it is often unsuccessful. Additionally, birth control does have risks including side effects that may be intolerable for many. There are some studies suggest an anti-inflammatory diet may be beneficial to those with endometriosis. However, this is not a cure though it may provide some mild symptomatic relief for certain endometriosis sufferers. Endometriosis is a condition that must be approached with great care. Most GYN doctors are not experts in endometriosis and many GYN surgeons are unable to correctly identify endometriosis and especially deep infiltrating endometriosis (DIE). This is a warning: do not assume a surgeon who has endometriosis on their website is an expert. Many women have undergone surgeries for endometriosis and suffered tremendously due to improper or incomplete excision by surgeons who are not well experienced in endometriosis. Endometriosis can be as small as a grain of sand and missed by a surgeon who has not spent countless hours in the OR looking at and touching the disease. Experience matters.
What should you look for in an endometriosis surgeon?
Endometriosis is not always visible to the eye. Developing skills to identify endometriosis requires extensive experience and physically touching the organs to detect textural changes when seeking out deep infiltrating endometriosis (DIE). Deep infiltrating endometriosis diagnosis and excision requires great surgical skills by hand, not by robot scissors. I want a surgeon who will meticulously survey and touch every section of my reproductive organs, bowels, bladder, diaphragm, etc. with their own hands. A robot may not have the same sensitivity as a human hand in detecting endometriosis. While the da vinci robot is fantastic for certain surgeries, it is not the best option for endometriosis. There are FDA warnings related to the robot’s use and this is where informed consent comes in to play. A patient must be properly educated on all risks associated with any procedure to make an informed decision. Every surgery comes with risks; however, there are additional risks associated with surgery using a robot that many with endometriosis are unaware of. Full transparency related to surgical risks with a surgeon using robot should be discussed with endometriosis patients. That said, the robot does have practical use for different types of surgeries. It’s simply not the best or only option for those with endometriosis. If you’re going to undergo risks of a major surgery, you should ensure you are in the most capable and qualified hands. An incomplete excision surgery will inevitably lead to prolonged suffering of endometriosis symptoms. Minimizing scar tissue and surgery related adhesions are also important in long-term recovery. Your surgeon and the surgical technique used will have an impact on your long-term outcome.
After many months of extensive research and learning about endometriosis I decided to set up consultations with two endometriosis excision surgeons who perform their surgeries with haptic skills. The two surgeons I have consulted are Dr. Massahide Kanayama and Dr. Vilasagar. Both surgeons are experienced and dedicate their careers to endometriosis excision. I have spoken to women who have had surgery with Dr. Kanayama (insert link) and Dr. Vilasagar (insert link) whose patients have shared glowing reviews about their life changing endometriosis excisions. In fact, three women Dr. Kanayama has operated on sent me voice messages sharing their sufferings from endometriosis and praised him for giving them their life back. It’s important to feel confident and comfortable with the surgeon you choose, because that surgeon’s skill level plays a role in your post-surgical outcome. After undergoing a hysterectomy four months ago (which was met with post-op complications) I want to ensure I am in the most capable hands. I will update more as I continue my journey toward healing and becoming whole again. I spend many of my days debilitated by searing pain and crying. My heart goes out to all who are suffering. I encourage you to keep seeking answers and do not take no for an answer. My next step is to see Dr. Kanayama in his New York office to complete my full assessment to determine the next step in my journey. I have included links to both Dr. Kanayama and Dr. Vilasagar for those interested. If further surgery is determined to be the next best step, I will provide detailed information about my experience with all of you. My biggest hope above all is that I someday get to experience a life without debilitating pain while being a source of inspiration for all those struggling with health complications. You are not alone. Resources:
Endo Girl Documentary: https://youtu.be/NpXGG2EBBT8
Dr. Vilasagar: https://drvilasagar.com FDA Warning on robot surgery: https://www.aboutlawsuits.com/intuitve-surgical-warning-da-vinci-problems-51257/ Sincerely, Meranda