PCOS & Fibromyalgia… I have them, now what?

I’ve really battled with whether or not to share my diagnoses publicly. Why? Because I am a private person. Because I don’t need people sharing and discussing information about me. Because I don’t want pity. However, I’ve been increasingly convicted to share my story. Why? Because I know I am not alone. Because the purpose of my blog has always been to use what I know, feel, and experience as a means of helping others. Because I want to be free of the burden of keeping these very real conditions in my life a secret.

In order to understand my journey to diagnosis with each of these conditions I am going to go back a little. Note, this post will be very long, open, and honest. I feel it is important to tell this story in all of those ways in order to accurately portray what I’ve been through to get to this point.

It was late 2013 when I first started to experience some symptoms that troubled me. I’ve been a relatively healthy person the vast majority of my life. No major illnesses or injuries. A cold here, a stomach flu there, allergies. Normal stuff that I have been able to live with, with much ease. But the symptoms I experienced at the end of 2013 alerted me that something was terribly off with my body. Exactly one week after my cycle ended I had another full week of a menstrual cycle, which has never happened before. This second cycle was extremely heavy, caused me to have painful cramps, I had severe lower back pain and I had blood and mucus in my stool. All of those things happened for seven days. And then they stopped. Just as suddenly as they started they stopped. And one week went by. Then another week. Then another week. So naturally I assumed I was alright. And then the next month a very similar thing happened. By the third month I knew I needed to see a doctor, so I made an appointment with my gynecologist (assuming it was a gynecological issue). However, it took me 4 months to see her as she was totally booked, and having not shared my story with the front desk clerk there was no rush made to get me seen. So I waited 4 months, and in that time span I was completely fine. Not one incident. Not one symptom. And when I finally got in to see my gynecologist and shared my story we both assumed that whatever was going on had resolved itself on its own. After all, my blood work and all the other tests she ran came back normal. So why wouldn’t we think that?

At that appointment my gynecologist told me that if my symptoms should appear again I was to call immediately and demand to be seen and to mention that she (Jennifer) had specifically advised me of such and would be furious to find out I had been placed on hold. So when all my symptoms returned just a month after that appointment including some new ones like migraines and huge/frequent mood swings, and when those symptoms continued into the next month I made another appointment to see Jennifer and demanded to be seen as soon as possible. I got into her office in less than a week and again all tests came back normal. So she scheduled me for a vaginal ultrasound.

When I had my ultrasound appointment the first person to come in was a student technician. She introduced herself, the process, and then the vaginal ultrasound began. First off, this procedure isn’t the most comfortable thing in the world. It’s not painful, but having something stuck inside you and then pushed around with a bit of pressure doesn’t feel good. Nevertheless, I looked at the screen as she explained where my uterus was, my Fallopian tubes, and my ovaries. And then she stopped. Really suddenly. And she looked at the smaller screen, made some notations and measurements and then hurriedly excused herself from the room to go get someone else. The doctor.

The doctor comes in and the student sticks the wand thing back inside and says something along the lines of “So I was looking around and then I see THIS here and THIS over there. Then the doctor takes over the wand thing and moves it around some more and then says, “Okay, hold on let me get Dr. “So & So”. I got the impression this was the head doctor and then I got a bit scared. The top gun comes in, the three have a mini discussion, the top gun introduces himself and does the little thing with the wand and then just says, “Okay. When was your last cycle?” Me: “It was a week ago.” Top Gun: “Well first of all, I can see that you don’t ovulate because these (points to ovals on the screen) are all your eggs which should have been released. Second, you have PCOS. That is Polycycstic Ovarian Syndrome. You see these things here (points to some dots on the screen) and these things here (points to a lot more dots on the other side of the screen)? Those are cysts on your ovaries. You have about 12 on your right and a bit more than 12 on your left ovary. They aren’t that large though. Roughly the size of an eraser head. But I’ll let you get dressed, print some stuff out, and have a chat with you in a few minutes.”

PCOS. I didn’t know what to think because I didn’t know what it was. But nothing about having dozens of cysts on my ovaries sounded good to me. Nevertheless the doctor came back in with a print out of my cyst covered ovaries. He explained to me that PCOS was a condition in which my ovaries were covered with dozens of tiny cysts. These cysts were not harmful to me, but they did cause a huge shift in my hormones which was throwing my entire body off (hence the changes in my cycle, the migraines, the mood swings). I was told the condition often makes getting pregnant a challenge and increases my risk for diabetes and heart disease. I was also told that common symptoms include acne, weight gain, trouble losing weight, extra hair on the face/body, irregular or heavy periods, and even depression (most of which I had been experiencing in addition to my other symptoms.) He went on to note that the little discussion he, the other doctor, and the student were having was related to one of the cysts which was about the size of an olive and looked to the student like a “problematic” cyst. However, in their little pow-wow he pointed out to the student that it was missing the 4 of the 5 major characteristics of a problematic cyst and thus it was nothing to worry about at this point.

So what was the treatment? Hormonal birth control. I was told that for me hormonal birth control would essentially offset the effects the cysts were having on my hormones and get everything back on track. So I got my prescription and hoped for the best. And sure enough things did get better and I thought all would be well for the rest of forever…..

Until Fibromyalgia. Just as I was improving in early 2014 , I began to notice that something was again off in my body. I was again getting migraines 3 times a week that lasted for 1-2 days (yes, that means I had migraines everyday.) I was feeling abnormally tired. More like exhausted. Like the type of exhaustion that you’d feel after running a marathon. Only I felt that everyday. No matter how much sleep I got the night before. No matter how little activity I did that day. I was also in pain. A lot of pain. At first it was the type of pain that I’d liken to when you have the flu. That achy feeling all over your body- that is what I felt every single day for seemingly no reason. And as time progressed that level of pain just increased all over my body. For seemingly no reason. My back, neck, and certain points on my arms and legs seemed to be in pain the most often and the most intensely. There were times I couldn’t get out of bed. Times I couldn’t get out of the bath tub or get out of a chair unassisted because I was in so much pain. And suddenly I was incredibly sensitive to cold. Like 65 degree weather was cold to me. And any type of cold made the pain in my body worse. Air conditioning in the car on a hot day- I couldn’t handle it. An actual cold day outside was like torture to me. On top of all of that, I was irritable, had these sharp mood swings, and even some mild depression.

I went to see my general physician at the time who ran every test you can run on a person. And small things were wrong that he assumed were the cause of my issues, and thus if those small things were fixed I’d be fine. This was mid 2014 at this point. For an entire year we went back and forth. Tons of blood work and every other test you can think of. Low Vitamin D so we will increase Vitamin D intake. Still ill. Low Calcium, so we will increase Calcium intake. Still ill. Increase Vitamin B12. Still ill. Iron. Still ill. Drink more water and get more rest. Still ill. Exercise and go to physical therapy. Still ill. And after a full year of all of this and still being ill my doctor was at a loss. Now all my tests were normal and I was still ill. On a fateful day in now 2015 I heard my doctor pull a superior aside right out front of my exam room. He explained to her my symptoms and this year long journey that resulted in no improvement. And then this woman walked into my room and asked me some questions. She asked me about my life, my responsibilities, my job and educational pursuits. She asked about my son and my social life. And then after those questions she simply looked at me and said “You’re fine, you just need to get some more rest and take some time away for yourself.” That was the fateful day I decided to get a new doctor.

I went searching at Fort Norfolk Plaza for a former doctor of mine that I last heard was there. However, when I called to schedule an appointment they informed me that she was no longer there and asked if I wanted to see Nicole Donaldson who had an opening that week. I did not know it yet, but this was divine intervention. I said yes and was seen later that week. I told Dr. Donaldson about my battle. She took incredibly detailed notes. She observed my body language when I talked about my life and responsibilities. She listened to me. And then she ran a whole lot of tests over a period of months. And then one day near the very end of 2015 she sat with me and told me that it was her professional opinion that I had Fibromyalgia. I wasn’t crazy. I wasn’t too stressed or too tired. I had Fibromyalgia.

My doctor spent that day explaining to me that Fibromyalgia is believed to be caused by overactive nerves which can result in the following symptoms: widespread pain, chronic fatigue, frequent migraines, hypersensitivity to heat/cold, forgetfulness/inability to concentrate (Fibro fog), anxiety, depression, and mood swings, among many other symptoms Fibromyalgia sufferers can have. What makes Fibromyalgia so tricky to diagnosis is that there is no test for it. You literally have to be tested for everything else first. Then if all your tests come back normal and you present a certain set of symptoms grouped together, then and only then will be diagnosed by a doctor. But because that combination of symptoms is so broad and general, it often gets misdiagnosed as the various other conditions that can cause those same symptoms.

I was oddly relieved. Because someone took me seriously and worked to get to the bottom of what was going on with me. Now that we knew what I had we could work on some way to manage it (there is no cure for Fibromyalgia).

So now it’s been 2+ years since my PCOS diagnosis and about 1.5 years since my Fibromyalgia diagnosis. I know what I have and I am still in the process of finding the right combination of things to help me live a good life. I take medicine for my conditions and I’ve made significant changes to my diet, exercise routine, and general life habits.

For my PCOS, taking my hormonal birth control is necessary to keep my hormones in line. However, I am also beginning to understand the role healthy eating can play in maintaining hormonal balance in my body. I’ve also been exploring essential oils (which have worked wonders for me) to help keep my hormones in check.

For my Fibromyalgia I have found a low dose antidepressant to be a Godsend for keeping my widespread pain in check. The antidepressant elevates my serotonin levels which in turn helps to combat those pain signals from my nerves. If I miss a day of my medicine, I feel it the next day, so I have no intentions of letting it go for now. However, I am also understanding the role food plays with regards to this condition too. As my nutritionist/health coach pointed out, food is medicine. I now understand the kinds of foods that cause inflammation in my body and lead to pain or an increase in pain within my body. I now also understand the kinds of foods that fight inflammation in my body and decrease pain.

I am still learning everyday what my limits are. It’s weird for someone like me who used to workout obsessively and run/jog a few miles in my neighborhood daily to feel pain and exhaustion after a 2 mile walk. I sometimes forget I cannot lift certain things or move certain ways suddenly without consequences for my body. The hormonal changes in my body and my decrease in physical activity have changed the way my body looks and feels…But I embrace where I am. I have good days where I forget I have a health condition. And I still have some really bad days that remind me that I do in fact have a chronic health condition.

Getting diagnosed with both PCOS and Fibromyalgia freed me from the mental anguish of knowing something was wrong but not knowing what. I admit that I had diagnosed myself with much worse conditions via my Google Search Doctor Degree (never do that!). But now that I know, I can take the necessary steps to continue to learn about my conditions and map out a plan of care that best manages them. This will be a lifelong journey. I learn new things everyday. My PCOS and Fibromyalgia won’t go away and they will likely cause new challenges for me as I age or try to conceive later in life. But I embrace them. They are a part of me. I am Diamond and I have PCOS and Fibromyalgia, and I am okay. I can still live a good life. And I will.

Look for me to be sharing information, resources, products/foods, and more stories with you regarding these two conditions in the future. Like I said, my purpose for sharing was to help others and if I find something that works for me, the least I can do is share it with others so they can figure out if it works for them too. And if you have information, resources, products, etc. that you have found work for you, I want you to share with me too. I am always open to learning and trying something new.

Thanks for reading and getting to know a little bit more about who I am. No pity needed. Just prayers. ❤

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3 thoughts on “PCOS & Fibromyalgia… I have them, now what?

  1. Adrienne D. Wimbush says:

    I was diagnosed with Fibromyalgia in 1995. Thankfully, I have what my doctor describes as a mild case. Nevertheless, it is definitely a game changer. Thank you for sharing information about your situation. You are and always have been an inspiration to many. My thoughts and prayers are with you. Be blessed!

  2. Natasha says:

    Thank you for sharing such an intimate portion of your life with us. Unbeknownst to you, I was just diagnosed with an ovarian cyst last week! I also deal with chronic fatigue due to a neuromuscular autoimmune condition. I felt we were kindred spirits the more I read your story. You have a God-given gift to consistently convey the feelings and thoughts of others through your writing. Although we don’t rejoice over sickness, it is great to know that we’re not alone in our struggle. I love you and I’ll continue to intercede on your behalf.

  3. Tina Cox says:

    Thank you so much for sharing. It takes a lot of courage to be transparent and open up a window into such personal details about Who We Are. You’ll never know how many people you’ve helped. Your such a sweetheart love you darling -Tina

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