Lost and Found: An Update

It's amazing that I suffered for so long not knowing, exactly, what was wrong with my body. It's equally amazing that in a few, short months I found a new physician, had surgery, had a definitive diagnosis, a laparoscopy, excision, and post-op counseling offering me a holistic view of the body as it heals from endometriosis.

To give an update (a happy update!), on August 2nd, I underwent a successful laparoscopy procedure, as well as a successful excision of the endometrial tissue. Because I'm not a doctor, I probably can't properly relay all of the medical details surrounding the excision process, but I can give a few remarks about my condition.

First, remember those endometriosis photos that you looked up on Google? (see above) Notice how the endometriosis is dark red, spotty, and clearly visible? Ok. Let's just say that mine looked nothing like this. In fact, most of the endometrial tissue that had clung to my organs and pelvic wall was white--like a plaque. My doctor pointed out that this kind of endometrial growth was, in fact, rather common but that pictures often represent endometriosis as being dark red and bloody, like a blood clot. I'll try to get some of my photos from the Dr's office so I can post them on this blog for further review. I eventually want to also post the details from his full report.

Secondly, he also discovered that I had 2 lesions on the back abdominal wall covering the uterus, as well as a site of adhesions where my own tissue had attacked itself due to inflammation. You see, when your body produces a foreign tissue in places that it's not "welcome," your body will attack it. This causes the tissue to be attacked, and thus, "dissolved." On one site of my pelvic ligaments, there was a horseshoe shaped spot that had been "hollowed-out" due to inflammation. Crazy! My doctor also mentioned that, to some physicians, this would appear as "normal" anatomy. However, he made a point to say that the apparent lack of tissue was not normal and was a classic sign of endometriosis.

Additionally, I wanted to remark about my personal issues associated with having endometriosis. And by "personal" I mean my peeing and pooping habits. No one ever talks about peeing and pooping--unless, of course, you're 8 years old. But as an adult, I thought it was normal that I had severe constipation at times (which is why I had a partially blocked bowel back in Dec 2011!) and I pee up to 30+ times a day. I know that peeing excessively was not normal, but I didn't have any reason to suspect frequent urination was caused by endometriosis. News flash: IT IS! So is constipation! Let me explain:

From what Dr. Harkins told me, your uterus, bladder & colon are all connected by your parasympathetic nervous system. When a woman with endometriosis has her period, the uterus and surrounding tissue with the growth, all becomes inflamed and agitated. You bowel habits are effected--sometimes you have diarrhea, and other times you are constipated. Typically, endometriosis patients have constipation. Constipation, in turn, leads to more frequent urination, as the pressure builds in your colon, so does the pressure in your bladder. Also, my colon was not even in its anatomical place, so to speak. Because of the endo growth, my colon had shifted and was not situated correctly in my abdomen. Hence, another reason why I had issues with constipation. Again, "it's all connected."

Back in 2011-12, I had severe back pain and constipation issues--along with my chronic abdominal pain. Which is why I was referred to both a Gastrointerologist AND a neurologist to assess my constipation issues, back pain, and more recently, urinary frequency. But it all can be explained by the endometriosis. In fact, it turns out that I have Stage III endometriosis (it is diagnosed in Stages I-IV). All along I thought (again!) that I was crazy--but I wasn't! My body was responding to the severe-moderate growth of endometriosis, and I knew all along that it was all related somehow. But doctors, in their defense, are trained to investigate the body's symptoms in piece-meal fashion. Which sucks for those of us who do not have unlimited sick time to get to every doctor's appointment that is scheduled for you.

Finally, I wanted to mention that because of the successful excision, my organs were found to be in-tact and not penetrated by the endo growth. Therefore, I'm lucky that I am predicted to not have issues with fertility if the endo growth does not come back more aggressively than before. My ovaries, uterus, and fallopian tubes are deemed "fine" to someday get pregnant. (someday!)

One more thing, though, that took me by surprise: I have adenomyosis. This is a condition that refers to when endometrial tissue grows (microscopically at times) in the outer walls of the muscular tissue of the uterus. My uterus is 1 & 1/2 times larger than the average uterus, which is apparently a "classic sign." So remember when my doctor told me in 2010 that I could have adenomyosis but that he couldn't diagnose me? Well, I have it. Dr. Harkins tells me that having a large uterus is pretty tell-tale of this condition. And since he teaches this stuff, seeing hundreds of uteruses every week, I trust him. Luckily in my case, this does not impair fertility. However, it can cause pain and eventual infertility. Fortunately, I know that this is another part of my "story." Unfortunately, there's not really anything that one can do about adenomyosis.

So for the longest time, I was lost in a haze of pain and grief, not knowing my full story, what was wrong with me, and what I could do to get better. But now I am "found." Dr. Harkins not only gave my life back to me, he also counseled me after surgery to help keep improving my quality of life. I have a daily pain regimen that does include Opiods, but they are non-addictive and work well to relieve me from my (still) chronic pain. I also take Miralax once a day, daily, to keep my bowels healthy and regular. Eventually, he says, the frequent urination will dissipate (and it can't come soon enough!), but I still pee at least 4-5 times a night. Also, I have the Nuva Ring and I insert a new ring concurrently so that I avoid getting a period. You see, if you can "shut down" the shedding and growth of the uterine lining, there is evidence to support a lack of endo growth. However, birth control is not a cure. It is only a preventative. Lastly, I am embarking on a dietary journey that is supposed to help suppress inflammation--and also may help me lose the excess weight that I have always had. You may or may not have heard of the "Endo Diet," which is quite similar to the Paleo Diet. Basically, the Paleo Diet eliminates processed foods, fat/fried foods, most of your carbs from wheat flours and dairy. So, you see, it sucks! But it's worth it. I've been able to mold it to fit my lifestyle. I haven't completely eliminated everything on the list, but I've been able to significantly reduce my sugar, fat & gluten intake which has resulted in a 3 lb weight loss in the past 2 weeks. Hooray!

Blogging about all of this has really helped me through the healing process. I have to be honest: I was in a really dark place for quite some time. I feel like I'm finally "waking up" from a long, horrific nightmare. And if my experiences can help one person believe that they "aren't crazy," and empower them to find answers, then I've done my job. When you have endometriosis, you begin to think you're all on your own, that no one could possibly understand. But we do! There are many people out there who know exactly what you're going through and want you to feel better! The problem is: they're not all right in front of your nose when you need them the most. So my advice? Keep looking for that doctor who listens to you. Don't give up to finding a pain regimen that works for you. There is light at the end of the tunnel, and when you get there, trust me, you won't feel so lost any more.