I promised that when I had some concrete answers about my recent medical struggles, I would share them here.
I share for those who love me, so they can know I’m still standing and fighting. I also share for those of you who may stumble across this space because you’re struggling. So you may know that you’re not alone, and maybe you’ll find some hope in my words.
Just after my son left to head back to his father’s house, I started to have extreme pelvic pain. Because I have implanted birth control and don’t really have a cycle, I knew these weren’t female pains. Or, at least not the normal ones. At first I tried to write the pain off as RA settling in my hips. I restricted some of my walking and tried some different yoga stretches. My fiance rubbed my lower back each night so I could sleep. We tried it all.
Nothing seemed to help. There were times the pain was so bad that I would curl into a ball and sob uncontrollably. When the bleeding started, we rushed into the ER. The doctor there told me I’d had an ovarian cyst that ruptured and another one in my left ovary that was “concerning.”
I followed up with my doctor, who referred me to an OB/GYN. In the meantime, I was rushed to the ER three more times. The pain was so bad at times that I couldn’t eat. It got to the point I was told to stop all exercise. No bending, and absolutely NO lifting. Doctors threw around things like Endometriosis, Ovarian Cysts, and the ever lovely, “It’s all in your head.” It was clear to us that there was SOMETHING wrong, but nothing was showing up on their tests.
When I was finally able to see the OB/GYN, I was both terrified and anxious. I craved relief so badly that I was willing to sign the paperwork for a hysterectomy that day. Instead, after she performed my exam, she said I didn’t need surgery. It wasn’t my lady bits acting up at all, it was my bladder.
We ran some tests to see if it was an infection. In the mean time, I also had some blood work done to check for some things that had showed up in my family history.
Within days of each other, I got a call referring me to a hemotologist to discuss a rare blood mutation and I got a call from the OB/GYN telling me there was no infection, I needed to be tested for Interstitial Cystitis (IC). For weeks leading up to the appointments, I was a constant mess. Anxiety, fear, and pain warred inside me.
This week I had my appointments and got my answers.
Yes, I have a genetic mutation that actually runs pretty strongly in my family. Fortunately, my particular mutations are not as bad as they could be. At this time, all they indicate is that I’m at a higher risk for a stroke or heart attack. But we talked with the doctor about lowering my other risk factors and we’re confident that I’ve got many good years left ahead of me.
The testing for IC was positive. While this might sound terrible to some, I’m happy to finally have an answer for this horrible pain. There is treatment for it, but it’s on the spendy side. So while we wait to see about getting me insured, I can control most of the pain with diet changes. While some items will make me sad to give up, it feels good to know that I can take an active and direct approach to controlling my symptoms.
As for the cysts, we’re looking at possibly changing my birth control method. While this method has worked well for me in the past, all the changes in my body have made it not a great option for us now.
August and September were rough months here. It seems as though every free moment has been spent in the hospital, at a doctor’s office, or a pharmacy. I’ve missed out on things because I’ve been confined to bed or my couch, in pain.
But not anymore. I have answers and a clear path to move forward. I have great doctors that are all working together to give me the best care and keep me as healthy as possible.
I have the tools now to take care of myself and be the best me I can be.
I must thank all who have prayed for us, sent well wishes, sent care packages, and for all the texts and phone calls during this time. Your love and support is how we’ve made it. Without it, we would have been lost. From the very bottom of my heart, thank you.