Most of us know the old saying, “strike one… strike two… strike three…you’re out!” We use this baseball-coined saying to describe the notion of persevering. But as I’ve noted before, not everything meets the “gold standard” of first, second, and third attempts. Some situations, like finding the right medical care, take much, much longer.
Strike One…Strike Two…Strike Three! You’re Out!
For those of you who do not know my story, I have been dealing with chronic periods and menstruation issues for almost ten years. In that time, I’ve seen primary care doctors (PCPs), excision specialists, OBGYNs, OBGYN specialists, endometriosis clinics… I’ve tried seven different birth controls, three steroids, and Depo-Provera injections. I’ve also had two excision surgeries and an appendectomy. All of these doctors, treatments, and surgeries struck out though, each leaving me more confused than when I started.
But the most confusing of it all is my diagnosis. The first “specialist” (worst doctor I’ve ever met, another story for another day) told me he was certain I had stage 2 endometriosis without taking a pathology or removing my tissue. The second excision specialist told me he believed that I had endometriosis, but the pathology report tested negative. The third endo specialist I saw claimed I had adenomyosis, but claimed to have no way to prove it. This summary isn’t even including those who came in between, especially my favorite: regular OBGYNs who wouldn’t even take me on as a patient because I need a “specialist.” As of result of this history, I spent the past two-four years living without help beyond my regular PCP. I have managed and done my best to live my life regardless of pain.
So What Happens Next?
Well, I’m not too sure what happens next. I was recently told by an OBGYN specialist to return to one of my past specialists because my case was too complicated for him. This experience was disheartening and made me want to avoid medical care like I have for the past few years. If you read my latest post, or even skimmed it, you would know that I can’t live without aid anymore. I really wish I could, but for whatever reason, this year has been horrible for my body. This led me to reaching out to a Nook Doctor. For those of you who don’t know, Nook Doctor‘s are doctors that Nancy Nook has certified as having thorough and accurate practices for treating endo. Of the three “specialist” I’ve seen, two had been Nook Doctors, and I would agree that they were very knowledge for endo. After the last doctor didn’t pan out, I didn’t know where to turn. Then, I remembered A Touch of Flourish recommenced Nancy Nook a few months back and I realized I should give it a try one more time.
Feeling Even More Confused Than Before
So last week I had a virtual visit with an endo specialist of Brigham and Women’s Hospital. I was so skeptical of this hospital since that first ever “specialist” had connections within the network. But since I’ve tried every other hospital network in MA, NH, and ME, I figured I needed to give it a shot before completely giving up.
And part of me is really glad I did: the doctor I talked with didn’t waste my time. He had spent the time to review the 22 page history packet I faxed his office, and knew exactly where I was at. He also wanted to get an MRI done to determine if I actually have adenomyosis. (FINALLY!) He is the first doctor that has been willing to give me the MRI that I have been asking four years for; he’s the first to recognize that an MRI can give me a true diagnosis.
Then there’s the other part of me: the part of me that is petrified of the MRI not detecting anything. At this point, I am way more scared to have the MRI done and for it to not find anything. If the MRI doesn’t show adenomyosis, cysts, or endometrium, then I’m basically screwed. If I have no major results, then the doctor believes I either have endometriosis or just horrible genes.
Facing My Greatest Fear
Which leads to the worst part of the entire conversation with this new doctor…If Monday’s MRI comes back negative for all of the above, then the doctor wants me to try a progestin birth control pill. For anyone who has ever read my blog, you know that I would be the covergirl for “Reasons to Hate Birth Control.” The worst I have ever felt is when I was on birth control; and the best was when I finally put my foot down and said no to birth control. I have also inspired others to try to see if they could feel better without birth control. For example, a close friend of mine said she never felt better six months after stopping birth control.
So for me to take birth control again feels like I am going against everything I stand for; it feels like I might loose everything I’ve worked for, especially the weight loss. The day I stopped birth control I was a size 18/20 in women’s clothing. Within six months I stopped birth control completely, I started loosing the weight, to the point now where I am a size 8/10. This weight loss was huge for me. Although I can’t seem to loose any more weight, I haven’t gain any either in 3 years. As a result, I’m scared that all of this work will go to waste and that I won’t be myself anymore if I take birth control.
So Monday is going to be a huge day for me… well, I guess actually 48 hours after when I can find out the results will be the crucial moment. Depending on the results, I told the doctor that I would try the .35 mg of norethindrone next week if I do not have adenomyosis. I agreed to do so because it can indicate whether or not I have endo, it’s only .35 not 5 mg like I used to take, and I’m home in quarantine going nowhere and seeing no one. And yet, a large part of me is scared that I am going to be making a huge mistake…I guess only time will tell…
If you made it through my rant, thank you. Your support truly helps me feel better, feel like I’m not alone in this battle. Have you ever tried or have heard of norethindrone? I’d love to hear an insider’s perspective!