October 18, 2016

A lot has happened since my last post in August and the thought of writing it all out is very overwhelming for me but I do want to share some of what's been going on for those who come by my blog looking for updates. I've gone downhill again and am quite exhausted so I will keep this as short as possible (and even copy and paste some of what I've already written to family and friends).

I think I last left off saying I was doing well and was starting physiotherapy again soon. I only made it through the two evaluations as after the second one I had a severe reaction just as I did last year and spent a couple days hardly able to get up out of bed. My physiotherapist was very careful and hardly did anything so she was surprised at the severity of the reaction and sent a report to my doctor inquiring why no imaging (ultrasound or MRI) has been done yet to look for abnormalities. I explained to her that after the first year of me being sick and my doctors looking for answers they somewhat gave up and for the most part now disregard and downplay my symptoms.

Then a few weekends ago I was in the ER due to worse pelvic pain and finding a swollen lymph node close by my right hip. The doctor I saw there was blown away that my doctor told me that imaging wasn't necessary even after 2.5 years of chronic pelvic pain so he ordered me an ultrasound. (When I was seen by specialists in the past they did a lot of tests but besides X-rays no imaging was done).

The ultrasound technician I had was also very concerned hearing my health history and was so thorough that she even checked organs that weren't requested by the doctor to be looked over.

A week later we heard back and found I have Adenomyosis. This is a disease that causes the lining of the uterus to break through and grow into the muscle wall surrounding the uterus. They can see evidence of this on my ultrasound and said overall my uterus is bulky and abnormal in appearance. (It's the size of a grapefruit and should be the size of a small pear). This explains in part why my pelvic pain has been so severe and stubborn in not improving much thus far. Adenomyosis can be painful and can cause very heavy painful bleeding. It is not life threatening but there is no cure. The only "cure" is a hysterectomy. There are options to try slow down its progression but that's all it does and I will eventually need the surgery. There are negative side effects to having this surgery so young but we have time to think about it.

We don't know what caused what but Adenomyosis is thought to be brought on by hormone problems. So either lyme caused hormone problems which started this disease or this possibly happened first and suppressed my immune system allowing the lyme to progress. There's no way to know for sure, but this is not lyme. While one may have made the other worse, these are two different diseases.

Although this isn't easy news we are thankful to the Lord for leading me to the ER that day and providing us with more answers.

Before all this we already made plans for me to travel to Ontario at the end of this month to see a doctor there who has successfully treated other patients with Lyme disease. He is able to test bacteria levels in the body and tailors treatment based on what he finds. He also works on balancing vitamins and nutrients and rebuilding the immune system. I am leaving for this treatment next weekend and will be there for a week before returning home to continue treatment here. We don't plan to make any decisions until after I have seen this doctor, gone through treatments, work on rebuilding my immune system and hopefully gain some strength back because that will be important if I need the surgery.

Please pray for our family, for the Lord's blessing on my treatments and for Kyle and I as we are faced with needing to make difficult decisions for the future.