Essential Resources

Let me start out by saying that this post probably holds no interest for the vast majority of you, and your time would be better served reading about things other than my medical history and grievances. But if you have a friend struggling with endometriosis, please direct her to this post. It could save her a world of heartache.

(In short, tell her to read this book. Before her next doctor's appointment. It may be the best investment she can make, I wish I'd found it a long time ago).

Usually in moments of pain and desperation, I end up consulting Google to see if there are any links I haven't clicked yet that boast new pain relief techniques or treatments for my condition. I feel like I've tried everything...besides my staple of Advil, I've tried natural hormone supplementation and other supplements such as B vitamins, magnesium, and Omega 3s; I've tried cutting out gluten, soy, and processed foods from my diet,
limiting sodium...you name it. Some have helped a little, but never enough. In effect my research usually reveals nothing new, and only serves as a way to pass the time while I try to distract myself from the agony.

During my last bout of curl-up-in-a-ball-pain, though, I decided to browse through my Kindle store instead. Why I limited myself to the confines of digital resources for so many years and didn't consult the wide world of traditional print is beyond me, and I'm kicking myself for it. Because I found a book by an expert who has studied and treated the disease exclusively for over 30 years, and I now have an entirely different perspective on what my treatment plan should be. It's called 100 Questions & Answers About Endometriosis by Dr. David B. Redwine.

In short, this book shoots holes in all of the theories that are perpetuated by standard training in the Ob-gyn world and pharmaceutical companies' quests to milk patients for all they're worth, and boils the best treatment of endo down to one thing only: surgical removal of all the sites of endometriosis within a woman's body. All other methods simply treat the symptoms and just put the disease on 'delay,' and within a few weeks of completing the treatment the issues return with a vengeance. Therefore, the only way to truly be free of the effects of the disease is to eradicate it completely from your body through excision (surgical removal). It makes sense and sounds simple, but I learned in reading that most OB/GYNs don't have the knowledge or training to recognize the different appearances or sites of the disease, and therefore end up missing up to 70% of endometriosis sites during a routine laparoscopic surgery. They also tend to use a type of laser removal that 'burns' the endo sites instead of cutting them out, allowing for imprecise eradication which can fail to completely remove the endometriosis and also cause far too much collateral damage--creating scar tissue--to the surrounding tissues and organs.  The author states that it's no wonder many women have emptied their bank accounts to go through multiple laparoscopic surgeries with little relief. And he even asserts that the over-treatment of the disease with drugs and hormones instead of excision is completely misguided:

"Medical therapy of endometriosis is not medical treatment in this classical sense, because there is no medicine that eradicates endometriosis. All medicines for endometriosis treat the symptoms but not the disease. Once medical therapy is finished, the patient will still have all of the disease she started with. If the patient achieved any pain relief during medical therapy, the pain begins to return in most cases within 2 weeks to 2 months. Despite their shortcomings, medical therapies are popular with health maintenance organizations (HMOs) and capitated health plans, which make a certain number of dollars available each year for the care of a population (the subscribers to the plan). The popularity of medical therapy stems primarily from the fact that a few months of this kind of therapy is cheaper than surgery." (100 Questions & Answers About Endometriosis, Question 43: What is symptomatic treatment?).

Now, I've known for a long time that the artificial hormone therapies doctors tout as 'treatments'--the pill, Lupron, and other menopause-inducing drugs--are useless, and that surgery is one of the few plausible options. But every OB/GYN I've been to (save one) has looked at me like I was clinically insane when I said that I wasn't interested in hormone therapy, narcotics, or anti-depressants because they only treated the symptoms. And most of them shut down and shrugged with indifference when I tried to talk about treating the cause, feeding me the line that surgery--and the scar tissue it creates--would contribute to greater infertility. Most also said that even if the endometriosis was removed, it would probably "just come back"  and my best bet was a hysterectomy. Thankfully, the book goes in to great detail of why this is completely erroneous. Long story short, since many sites of endometriosis are camouflaged to the untrained surgeon, they report that they have removed all endo sites in a patient when in fact many unrecognized sites remain. When a patient returns for a follow-up or subsequent surgery, it seems that new endometriosis has appeared when it was actually there the whole time, and simply became more visible over time. Other surgeons report that excision of the disease isn't possible because it has become scar tissue that can't be removed. Dr. Redwine states the contrary, saying that any endo site can and should be removed, and all scar tissue explored since usually the most rampant manifestations lie under scar tissue, which has been created from the endometriosis aggravating the tissue surrounding the sites. While this is encouraging to me in many ways, it's extremely frustrating as well, since I was told exactly that by my surgeon after my laparoscopy: I had extensive scar tissue and adhesions, but there were no visible endo sites that she could remove. So effectively I started back at square one after my surgery.

Dr. Redwine also debunks popular myths like the fact that a hysterectomy or getting pregnant will cure endometriosis.

A hysterectomy may relieve other conditions which oftentimes present themselves, but if a woman's uterus is removed and she has endometriosis sites elsewhere in the pelvic cavity, the endometriosis can continue to aggravate the surrounding tissue and cause pain as long as estrogen is present. For women with one or more ovaries remaining, this means her natural estrogen can continue to keep the endo sites active and the pain can remain. For women whose ovaries have been removed, the artificial hormones supplements she must take contain artificial estrogen, which does the same thing--keep the endo active. So it can be a no-win situation for women who go through a hysterectomy in hopes of a "cure," only to discover that their pain continues.

As for pregnancy and endometriosis, there is no "cure" to be had. Women with endometriosis lucky enough to become pregnant may experience some relief simply because their cycle has been suspended for the duration of the pregnancy. But pain from scar tissue, adhesions, or deeply invasive endometriosis affecting organs can be just as acute. This last pregnancy, I lost count of the number of times I had to sit on my hands to avoid punching the nurses or midwives (as sweet as they were) who told me, "Well you shouldn't be pain right now, pregnancy cures endometriosis!" Hate to break it to ya lady, but yes, I am in pain.

That insidious pain is the last subject I'll address in my little summary. It's nice every once in awhile to have an expert confirm that you're not crazy, and in addition to understanding how to avoid the run around when dealing with so-called 'specialists,' Dr. Redwine devotes a section to the problem of pain. He recognizes that doctors often view women with endometriosis complaining of pelvic pain as having a low pain tolerance, seeking handouts for pain medication, or simply melodramatic. When reading this section I had flashbacks to all the times I spent curled up in the fetal position on my bed, or sitting on the curb clutching my gut in the middle of a run, or missing part of some important event, and eyeing the clock and praying for the time to fly so I could hurry up and take my next dose of Advil. And every time a doctor gave me that skeptical look, I really did begin wonder if I was crazy. But knowing that someone who has devoted his life to studying and treating my condition recognizes the debilitating  nature of the disease is a source of validation. It lets me know that I can continue to seek methods to minimize my pain while understanding that I shouldn't settle...that I should find someone who is willing to empathize, understand, and take REAL action to treat me. Natural remedies, diet changes, and drugs may help make me more comfortable, but excision is the only thing that can target the root of the problem. As frustrating as it is that it's taken 15 years for me to acquire that understanding, hopefully in sharing this, some other women out there can be spared the same duration of frustration and pain!