Source: NIH – National Cancer Institute
According to Websters dictionary, the word “benign” is defined as:
of a gentle disposition : gracious <a benign teacher>
a: showing kindness and gentleness <benign faces>
a : of a mild type or character that does not threaten health or life; especially: not becoming cancerous <a benign lung tumor>
b : having no significant effect : harmless <environmentally benign>
Retrieved from: Merriam-Webster
The second definition is what applies to endometriosis. Nonetheless, I am not sure if I agree with that definition based on the research I have done and the experience I have had with this disease.
Endometriosis is a chronic condition that typically causes severe pain and fertility issues, although 25% of women affected have no symptoms.
Additionally, nearly half of the women affected with endometriosis have fertility issues. Id. How is this a condition that is “not harmful in effect”? Just because it is not cancerous? To me, the fact that the endometrial tissue grows outside of the uterus, where it is supposed to grow, has the ability to produce its own estrogen, and can bind organs to each other causing severe damage and pain – is that not harmful?
Today I met with a OB/GYN specialist who performs laparoscopic excision surgery to remove endometriosis and while having our consultation with her, I realized how little is know about this disease and how little respect is given to those who suffer from it. Fortunately, this doctor was beyond amazing. She understood the complications that this disease brings to one’s life, from chronic severe pain to infertility to changes in personal relationships. And, she is involved in ongoing research in the why of endometriosis and on new detection protocols that may be available clinically in the next few years.
The most encouraging thing we discussed was that endometriosis, when treated through laparoscopic excision surgery, improves the body’s ability to rebound. Inflammation decreases, the ability for attachment to the uterus increases, and overall health generally improves. The reason my surgery ten (10) years ago did not fully remove all of the endometrial tissue is because the surgeon only ablating the tissue. This means that he used a laser to cut the surface of the endometrial tissue from the area is was attached; however, if even one single cell is left behind the endometrial tissue will regrow. This is similar to the removal of any growth – you have to get everything out and be aggressive in treatment.
Currently, there are not many gynecologists who are properly trained in laparoscopic excision, but I am blessed to have found Jacksonsville Center for Reproductive Medicine through a recommendation on Nancy’s Nook.
Wondering If You Have Endometriosis?
The symptoms of endometriosis vary from patient to patient. There is a stage classification created by the American Society of Reproductive Medicine which is based on the physical charateristics of the disease only not on the level of pain or infertility. The stages are I-IV, and are described as follows:
- Stage I (Minimal)
Findings restricted to only superficial lesions and possibly a few filmy adhesions
- Stage II (Mild)
In addition, some deep lesions are present in the cul-de-sac
- Stage III (Moderate)
As above, plus presence of endometriomas on the ovary and more adhesions.
- Stage IV (Severe)
As above, plus large endometriomas, extensive adhesions.
- dysmenorrhea: painful, sometimes disabling cramps during the menstrual period; pain may get worse overtime, lower back pains linked to the pelvis
- chronic pelvic pain: typically accompanied by lower back pain or abdominal pain
- dyspaneunia: painful sex
- dysuria: urinary urgency, frequency, and sometimes painful voiding
Interestingly, the level of pain experienced does not always correlate to the stage of endometriosis – meaning, a woman with little or no pain may have extensive endometriosis with scarring, while another woman with severe pain may have only a few small areas of endometriosis.
Additionally, endometriosis lesions do react to hormonal stimulation as the tissue would inside the uterus; therefore, these lesions may “bleed” during the women’s cycle. This blood pools causing swelling and additional inflammatory responses due to the activation of cytokines (super sciencey stuff, sorry). Over time, the lesions may develop scar tissue that binds internal organs to each other and cause eventual dislocation. This, along with the blood pooling, contributes to pain on a daily basis and not just during the menstrual period.
So what the heck causes Endometriosis?
No one really knows. There are a few main theories but honestly it does not matter WHAT caused it if you have it.
In the next few days, I am going to be researching the new developments my doctor discussed with me and see if I can share the new detection protocols with you, as well as, this cool, unique theory of hernias in endometriosis suffers.
You can decide for yourself after doing the research whether you think endometriosis is a benign condition. As a endo warrior for well over ten years, I can tell you that it is not benign at all. It is the most invasive disease I have encountered. It has woven itself into every aspect of my life and taken pieces of my former self over the years that I do not know will ever return. Friendships have been lost. Hobbies have been abandoned. Relationships have been altered. My future is no longer a certainty as I have to take each day one moment at a time.
I will continue my journey to learn more about this disease, as it is the only way I can keep my head above water.
This is my therapy.
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