A diagnosis nearly 10 years in the making...we think.

Thursday, May 7, 2015
So to say this last week has been a roller coaster would be an understatement. As I couldn't keep up with updating multiple people separately through all of this, here's what's going on in a brief summary.

An episode of sudden and intense abdominal and pelvic pain over the weekend was the catalyst for all of this. The doctor's original thought was something was up with my appendix.

Through the course of all of this since Friday, I've spent time in the ER, had a CT scan done, 3 ultrasounds, an MRI, and countless blood draws.


Once the CT scan confirmed my appendix was just fine (but found an enlarged uterus and fluid in my uterus), 3 separate ultrasounds were ordered since I had started bleeding a little bit (surprise!) and they didn't know where this pain was coming from or why.

The ultrasound found a lesion on my right ovary. Then an MRI was ordered. Turns out that is a harmless cyst. Yay! Doctors have long suspected I may have PCOS, but it's never been confirmed since I don't have most of the other symptoms.

The ultrasound also found what may be an answer for my bleeding/spotting issues that have been ongoing for nearly 10 years. Throw 3 healthy pregnancies and 3 miscarriages in there as well. Read a little more about my history in these posts::

http://hackberryadventures.blogspot.com/2012/01/tale-of-two-hearts.html

http://hackberryadventures.blogspot.com/2012/10/come-wake-me-up.html

My doctor suspects I have adenomyosis. Read it here::

http://www.mayoclinic.org/diseases-conditions/adenomyosis/basics/definition/con-20024740

Basically, if you don't click on that link, it's the same idea as endometriosis, only instead of my lining growing on the outside of the uterine wall, it's growing through the inside muscle of the uterine wall.

My doctor is fairly confident this is what's going on, though it's hard to say if this is what has always been going on with me. It's hard to say if this is why, 10 years ago, taking birth control continuously to skip a period didn't work (when my issues started). It's hard to say if this is related to never having regular cycles prior to Henry, between Henry and Claire or between Claire and Norah. It's hard to say if this is why I had major spotting issues at the beginning of all my pregnancies or if it's a related reason as to why I had so many miscarriages or couldn't maintain Henry's twin pregnancy. And it's hard to say if, after 10 years, I finally DO have somewhat consistent cycles since ending breastfeeding with Norah, or why those finally somewhat consistent cycles are wrapped on the front end and back end with additional, unexplained spotting.

Our next step in tackling this is, wait for it, testing my hormones!!!!! Ding ding ding!!! A family practice doctor has finally had the ground breaking idea to actually see what's all jacked up with my hormones. I've been crying for this for years. Rather than shove a pill down my throat and hope it works (never did), or throw an IUD in me as a "it'll probably fix you right up" bandaid that all previous OBGYN's have done or tried to do, I'm finally going to have my hormones tested and see what and where they are out of whack. And then take a pill to fix it :)

It will likely take two cycles to figure this out. My doctor is hopeful that it will fix the problem and I'll have normal cycles, only bleeding when I'm suppose to.

After 10 years of stuff not working, I'm not 100% optimistic, but it's worth a shot. If it doesn't work, it sounds like my only relief/treatment would be a hysterectomy. Since we are done having kids, this is an option I will absolutely consider when it comes down to it. Otherwise, he said I'll be dealing with this problem until menopause. And while I'm no spring chicken, that's a long long long time away.

My other issue, which is likely related because of all the bleeding is that I'm anemic. I'll start an iron supplement asap to fix that.

The fourth and final issue is that since the end of my pregnancy with Norah, my platelets have been low, and they been slowly declining since. My doctor isn't entirely sure if it's related or not, but since I've dealt with unexplained bruising (especially last year), he's referring me to a hemotologist to try and sort that issue out. Could be related, but probably not, I think he said.

So if I by chance know anyone out there that has this adenomyosis issue, I'd love to hear from you. It seems it's a hard thing to diagnose, and I've never heard of it before, even after 10 years of googling.

Thankfully, these three still came out after all these issues, and that's all that matters.

frisco_family_photographer_1738




1 comment:

Melissa Marciszko said...

Hi Jenna,

I hope they figure this out for you and you have relief soon! I read the links you shared. The second one you posted in Oct 2012 - I had to hold back the tears. We were pregnant and due within a month of each other and both miscarried. I was due in late March of 2013 with twins and we had seen a heart beat at the 7 week appointment so we'd gotten our hopes up as they said the risk of miscarriage was much less having heard a healthy heartbeat. I as well had to have a D&C when "spontaneous abortion" as they called it didn't start. Besides the obvious reasons it was bad, I agree the isolation from my husband just made it worse. Anyways, thanks for sharing your story. Some of my close friends know mine, but every time I think about sharing more broadly I chicken out.

Best wishes for a quick solution!
Melissa

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