It occurred to me while writing this Chronic Hope series that I have a good understanding of endometriosis, interstitial cystitis, and pelvic floor dysfunction but you may not. I don’t want to bombard you with medical terms and definitions throughout the series. Instead, I would like to make this post a safe place to view the definitions of each disease or disorder that I will mention throughout the series. Periodically as I share each new part of the series, this post will be updated with the terms you will come across.
I feel it’s important to have the most up to date theory of endometriosis posted here in case someone is searching for deeper answers on the internet. If you’re not already aware, there are different theories of origin when it comes to endometriosis. A majority of specialists believe in a certain theory and the majority of non-specialists believe in an outdated theory. I believe this outdated understanding of endometriosis is responsible for the delay in diagnosis, treatment, infertility, and overall poor quality of life in patients with this disease. I’m losing too many peers to suicide, organ failure, and other related deaths from this disease and refuse or remain silent on this topic.
- What is endometriosis (endo)? Endometriosis is where tissue similar but not identical to the lining of the uterus is found in the body. I’m paraphrasing from my endo specialist here but I feel this explains it perfectly: Endometriosis is not just painful periods nor is it small parts of normal endometrium implanted in abnormal places, caused by retrograde menstruation as many articles, the media, celebrities, endometriosis foundations, spokespersons and even some scientists continue to incorrectly describe. The endometrium (the lining of the womb which breaks down and is shed during menstruation) is histologically different from the functional glands and stroma that make up endometriosis. Unfortunately popular public doctrine is dangerously inaccurate, although endometriosis tissue is similar to the endometrium that lines the uterus it is not identical. This means that the belief that retrograde menstruation or backflow of bleeding during menses causes endometriosis is outdated and incorrect. My specialist and others like him believe in the theory of Coelomic Metaplasia where endometriosis is mapped out in our bodies in the womb. How, when, and if someone becomes symptomatic depends on that person’s genetics and environment. The disease is understood to be activated at menses and the symptoms that present do not correlate with the extent of the disease. This means that a woman with a small amount of disease can have debilitating pain, fatigue, and a myriad of other symptoms but someone with significant disease could be asymptomatic.
- If you’re interested in learning more you can follow this link to see an interview of my specialist talking in depth about the definition and treatment options of endometriosis at https://jessicarealept.com/2019/03/18/video-interview-with-dr-ken-sinervo-internationally-recognized-endometriosis-expert/?fbclid=IwAR09dXACg6FOWHg0g8iZB0BGMQs5Ak4vfDFM95Zl2j50k9Y9egIHyo3VAPk . I will include the website of my specialist who performed my surgery here at https://www.thecrrs.com/about/dr-nick-kongoasa/. Additionally, here is the website of my current specialist at http://centerforendo.com/endometriosis-understanding-a-complex-disease. My previous specialist worked under my current specialist and went on to open his own practice in the same area. Both of these doctors are phenomenal and are highly recommended by me and thousands of endometriosis patients around the world.
- Laparoscopic Surgery: a surgical diagnostic procedure used to examine the organs inside the abdomen. This is the only definitive way to diagnose endometriosis at this time.
- Excision of Endo: removing endo via surgery by cutting the tissue from its root. This is the gold standard in endometriosis treatments by a specialist. It is not the gold standard of treatments by non-specialists because they often miss disease due to their limited training and understanding of how endo presents and acts within the body. True recurrence rates are very low when performed by a specialist.
- Ablation, Fulguration, Cautery, Vaporization: Superficial removal of endometriosis by burning off the top layer of disease. Recurrence rates are extremely high since the root of the disease is left imbedded in the healthy tissue. Unfortunately, this is the most common method used by OBYNs.
- Interstitial Cystitis (painful bladder syndrome, IC) is an inflammatory disease of the bladder in which chronic inflammation of the lining of the bladder and swelling of the bladder’s interior walls result in pressure and pain above the pubic area and urethra, and frequency and urgency of urination. IC is more frequent in women than men and symptoms and treatments vary from person to person. There are several subtypes of IC that are being researched to better understand treatment options for patients who suffer with this disease. Please visit https://rarediseases.org/organizations/interstitial-cystitis-association/ for more information on this disease. 70% of women with endometriosis will go on to be diagnosed with interstitial cystitis.
- Pelvic floor dysfunction (pfd) is the inability to control the group of muscles and ligaments in your pelvic region. My physical therapist explained that the pelvic floor acts like a sling to support the organs in your pelvis. These organs are the bladder, rectum, and uterus or prostate for men. Contracting and relaxing these muscles allows you to control your bowel movements, urination, and sexual intercourse. Women who experience chronic pelvic pain tend to have pelvic floor dysfunction; this usually presents as having tight and weak pelvic floor muscles from constantly contracting in pain over the span of years. Pfd can be caused by prolonged pelvic pain from chronic pain conditions or diseases but can also be caused by giving birth, physical trauma, or even psychological trauma and abuse. Pfd effects both men and women as well all have pelvic floor muscles. There are different types of pelvic floor physiotherapists, not all of them are created equal. There are a number of symptoms associated with pelvic floor dysfunction. If you are diagnosed with pelvic floor dysfunction, you may experience symptoms including: urinary issues, such as the urge to urinate, painful urination or burning urethra, constipation or bowel strains, lower back pain, pain in the pelvic region, genitals or rectum, discomfort or pain during sexual intercourse, pressure in the pelvic region or rectum, and muscle spasms in the pelvis. I feel like that doesn’t really cover it all but it’s a start. If you’re interested in finding a pelvic floor physiotherapist please visit www.apta.org.
- Mindfulness: Mindfulness is the psychological process of bringing one’s attention to experiences occurring in the present moment.
- Adenomyosis (adeno) is defined as the presence of endometrial glands and stroma found within the muscular portion of the uterine wall. Unfortunately, even less is known about adeno than endo.
As I mentioned earlier I will be updating this post periodically as more definitions or clarifications need to be added as supportive materials for the Chronic Hope Series. If there is anything you would like added to this post, please let me know.