Thursday, April 14, 2016

My Battle with Endo

It's been a hot minute since I sat down to blog. Life has been crazy as usual with all these kiddos and I've been having some health issues that have been interfering with things a bit.

In an effort to raise awareness, I have been very vocal on my Facebook & Instagram about my battle with endometriosis and adenomyosis, and the effects it has on my daily living. I may have had it for years, but it started rearing it's ugly head about 7 years ago when Jay and I first bought our house together. I was under a lot of stress from moving & planning a wedding, so originally we thought it was a GI issue. I went to a gastro doctor and was diagnosed with IBS. I changed my diet and it was better, but never 100%. It wasn't too long after our wedding that I got pregnant with M, and I was totally fine during my pregnancy (except for the excruciating hip pain, carpel tunnel & insomnia!) & while nursing. As soon as I stopped pumping and my period returned, I was right back to square one. It took quite some time, and I had to do a lot of advocating for myself before I got my official diagnosis.

My mother had terrible cystic ovaries (I was conceived with only 1 ovary) and endometriosis. She had multiple D&C's and ended up having a hysterectomy at 45. I couldn't know for sure, but I just had this feeling that my issues were not stomach related. I am like my mother in so many ways and I just had this sinking suspicion that I had the same condition. After a few more trips to the gastro and more testing, he suggested I consult my gynecologist. I took his advice and for months we tried multiple types of birth control to ease the pain and control my cycle. Nothing worked and they all distorted my mood terribly. After pleading with my doctor for months,  I finally convinced her to do an exploratory laporascopy in 2013. My fears were confirmed with the diagnosis of endometriosis. She excised whatever she saw at that time and put me on a regimen of new birth control after my surgery. Again I had the same problem, we could not find a pill that worked. She suggested Lupron, but after researching it, I decided the risks did not outweigh the benefits. In June of 2014 I underwent an endometrial ablation with the hopes that if my period stopped the pain may stop with it. I was told my doctor had a 97% success rate of stopping menses with this procedure. Of course I fell into the other 3%! It did drastically improve the duration and severity, so I found relief for about 8 months afterward. In the beginning of 2015 the pain returned, and has been getting consistently worse ever since. The sheer exhaustion is unlike anything I have experienced before. I still continue to do my best to function for my family, but it has become increasingly more difficult as time has gone on. In the fall of 2015, after months of complaining to my gynecologist about the severity of the pain, she sent me for an MRI to determine whether or not I had adenomyosis as well. I cried when I received the news that I did in fact have the adenomyosis. There is no cure for either, but the best chance for relief for the adenomyosis is removal of the uterus. It's still not a guarantee however, because leaving the ovaries behind means hormones still in the system, which means any edo adhesion left behind could continue to swell, become inflamed and cause chronic pain. I truly felt as though I was at an impasse. I had hoped to put off a hysterectomy until my 40's, as I am petrified of suffering the same fate as my mother. I was scared about how a major surgery like this would impact my family, my weight and fitness level, as well as our sex life. How will I take care of my kids if I need to be off my feet for 6 weeks? So many questions and doubts, so I continued to put the idea on the back burner and finally agreed to try prescription pain meds instead. I refused to take anything controlled, so 800 mg Ibuprofen & 500 mg Naproxen were my only options. They helped at first, but then not so much after taking them for a while... Last month the pain was so severe that I ended up in the emergency room. I spent the entire day there, and the only relief came from morphine. They sent me home with Ibuprofen with Oxy, and I knew in that moment that I had to make a decision.

I refuse to let this disease rule my life. I will not be forced to live on painkillers just to make it through the day. Not to mention the fact that I have teenagers, so I do not even want that garbage in my house. I have 5 beautiful children who depend on me, and I CANNOT be kept down. I had a follow up with my gynecologist the next day and we decided it was time to do the hysterectomy. It is not a cure, by any means, but for now I feel like it is my best shot. She will remove my uterus and fallopian tubes, and excise any adhesion she sees while she's in there. My ovaries and cervix will remain for now so I will not have to worry about menopause at the moment, or worry that my bladder is going to fall out of my who-ha. Isnt' that a relief?!?!

It was an emotional decision for me. Even though Jay and I decided we were done having children right after M was born, there is something much more final about having the organ that carries them removed as opposed to just having some tubes snipped. Not to mention the fact that this time it's me & not him! It makes me feel old, and I am still scared of ending up like my mom... but I try to remind myself that I take much better care of my body than she ever did. I am thinking ahead to the possibility of having this pain in my abdomen not be the first thing I think about when I wake up in the morning and the last thing on my mind before I go to sleep at night. I am looking forward to making it through the day without my eyes closing at my desk at 3 pm, to not having to go home and stick the kids in front of the TV because I literally cannot keep them open one more second. I am looking forward to no longer having days were I literally cannot get out of bed and function at all. I have wasted so many days, lost so many opportunities to be enjoying time with my kids, lost wages & wasted so many hours of my life at doctor's visits, not to mention money on co-pays and medications. It has literally consumed every part of my life for the last few years. So, to me it's worth the risk of it not being a complete cure. If I can have any relief, if it will restore my ability to function as a normal human being at all, it will be so worth it to me. I can't spend every single afternoon of my life laying on the couch.

I've decided to document the process since I will be home from work for a while. Writing always helps me process my emotions, so I thought blogging this experience may do me some good, and may hopefully help some other women dealing with similar experiences.

Over the next week I am going to be eating as healthy as I can and banging out my work outs. I am hitting the abs hard, twice a day, to try to make them as tight as possible before hand with the hope that it will aid them in the healing process. I am sad to be missing out on the beginning of the race season this year, but hoping I will be able to be back at it by summer. I already missed one race due to fatigue, and I will have to forgo a 10K I was planning to run with a friend next month, which is a big fat bummer. In July Jay and I will be going to Vegas to celebrate his 40th birthday because his parents are awesome & we will be celebrating our anniversary as well while we are there. My goal is to get myself back to pre-surgery activity levels by the time we leave. I'm not sure if this is a lofty or ambitious goal, but I always like to set the bar high for myself, so why not?!?!

Today I go for my pre-surgical testing, and the surgery is set for next Thursday. My plan is to blog a little with each step. My hope is to help others prepare and maybe cut down on some anxiety - for myself & hopefully other women in the same boat as well.

Wish me luck!!!

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