I wanted to post an update to my Endometriosis journey today. I'm motivated to do this for several reasons. One is that Endo. is not very well understood & I thought an update would also give me the opportunity to educate a bit on this disease. Two, my approach to dealing with Endo. is changing & I want to share that with my readers, many of whom are also battling with this painful condition. And finally, I just want to reach out again. So much about autoimmunity is lonely & I have a strong desire to help others feel less alone. You can read Part 1 & Part 2 of my Endometriosis story here & here.
I was diagnosed with Endometriosis in March of 2010, after undergoing laproscopic surgery. Endo. can often be suggested by a person's health history & pelvic exams or imaging, but it cannot be confirmed without laproscopy. Laproscopy is when small incisions are made in the navel & sometimes other spots on the abdomen, so that a very small fiberoptic camera can be inserted into the body. This camera allows a doctor to visually confirm Endo. & in most cases remove as much of the endometrial tissue, scar tissue, & adhesions as possible. Biopsied tissue is used to verify the diagnosis.
Based on this procedure, a doctor will then stage the Endo., with Stage 1 being minimal & Stage 4 being extensive. The stages refer to how much scarring & diseased tissue is found, but does not necessarily reflect how much pain a women is in with the condition. A women with Stage 4 may not be in severe pain, while a women in Stage 1 may find her monthly cycle intolerable & debilitating. Staging is important, because it determines alot about treatment post-surgery. For instance, Stage 4 will usually require some treatment with hormonal medications & if the woman is trying to become pregnant, IVF may be the best way forward at that point.
After my surgery in 2010 I was told I had Stage 4 Endometriosis. It was found on & around most of my pelvic organs, had caused adhesion between my uterus and other organs & had been found wrapped around my bowel. I had been in intense cyclic pain prior to the surgery & had a great deal of relief after the procedure. It was recommended that I take low-dose birth control continuously at that point to help prevent future endometrial implants. Endo. is a progressive disease, meaning it normally gets worse over time & it can return after surgery. Hormonal treatements are used, because Endo. is driven by estrogen.
Endometriosis is not considered by all in the medical field as an autoimmune disease. However, as I tell fans on my FB page all the time . . . "if it quacks like a duck." There is strong evidence that autoimmunity is at very least a part of the process. It is also often associated with other AIs, like Celiac, thyroid disorders, etc. Further, there is a genetic link; a woman who's mother has Endo. has seven times more risk of developing it herself. Many women in my family have Endo.
After my surgery, I did take BC pills continuously. At the time I did not know about dietary interventions, like AIP, & frankly, I was scared & stressed. I did not want to be looking at repeat surgery a year or two later. This treatment did work well for me. I was relatively pain free for about a year, but I then began having complications from long-term pill use (BC can contribute to leaky gut) & still undiagnosed Celiac. I spoke to my gynecologist in 2012, shortly after my Celiac diagnosis, & then stopped the pills abruptly when I started AIP.
Despite starting my menstrual cycle again & not having the hormone regulation of the pill, my periods remained really manageable initially. I attribute this entirely to AIP. There is lots of evidence that low-inflammatory diets are very useful for women battling Endo. During this time, I also made an attempt to use Calcium D-Glucarate, with the guidance of my functional medicine doc, to encourage faster estrogen detox in my body, since Endo. is estrogen driven. Unfortunately, it did not work well for me.
Then, starting about a year ago, the pain started to creep back in with each cycle. I was normally able to still function just fine, but I had to take one dose of Tylenol on the first day & use heating pads. Compared to pre-AIP, pre-surgery this was nothing! However, I normally do not take any OTC medications with AIP, so I was concerned that the disease was progressing.
In January, I realized that there were signs that Endometriosis may be affecting my bowel again. I saw both my gynecologist & my GI specialist & it was agreed by all to monitor things for three more cycles. It is now very clear that Endo. is either on or in my colon wall. I have decided to consult with three different, very skilled gynecological surgeons & will try to determine over the next few months if I must have a second surgery or if hormonal treatment is necessary to shrink the implants & possibly avoid such a high-risk procedure near the bowel.
Endometriosis can form almost anywhere in the body, it can even affect the diaphragm, lungs, &, though rarely, the brain. It is because I know that it is progressing & because I am aware of all the other areas of my body that could potentially be impacted that I have decided to move forward with possible surgical or hormonal (or both) treatments. Although methods like these are not my preference when managing autoimmunity, I am aware of the limits of diet & lifestyle. After two years of AIP & no hormone intervention, I need to seek out new ways to manage Endo. While my pain is still very well controlled with AIP, the spread of endometrial implants in my body is something I want to do my best to prevent. I also want to preserve my organs, so treating sooner & hopefully avoiding drastic measures, like hysterectomy or bowel resectioning, is my number one goal.
If you are one of the many women out there that are dealing with Endometriosis I want to give you hope that dietary changes, like AIP, can have an immense impact. My place at this stage of my journey should not discourage you from using this powerful tool in your AI management arsenal. My pain is not even in the same ball park . . . heck the same continent, that it was before. You very well could find the same relief with this very gentle, very safe approach. On the other hand, if you've used diet changes, but are finding that other options are necessary, like I have, don't feel ashamed of all your dietary efforts. I'm definitely not "quitting" AutoImmune Protocol & I know that I took Endo. healing as far as possible with food. In fact, all that diet work is very likely going to help my next steps go so, so much more smoothly than they would have otherwise.
There are tons of great resources on the web about Endo. & they were my sources in writing this post. I like: Endometriosis Resolved, Endometriosis.Org, & The Endometriosis Association (to name a few).
How do currently manage your Endometriosis? Have you ever considered a long term plan that includes surgery or medication, in addition to diet & lifestyle changes? I would love to hear about your experiences.