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No Answers, Just Questions...

Sunday, July 28, 2013

I feel completely lost.

I have been following the "Low Amylose" diet for six weeks and have lost almost 15 pounds. I'm over the moon! After trying different approaches for so long, it has been so refreshing to see weight literally fall off of me for the first time EVER. I started this approach because I was 92% positive that I did, indeed, have PCOS and this is the recommended diet for the syndrome. The only thing left was an ultrasound to confirm there are cysts on my ovaries.

The ultrasound technician was a dream to work with, I felt completely comfortable. I asked if she saw anything at all, and she said that there were many small cysts on my ovaries. Instead of feeling upset, I felt relief. FINALLY I knew what was going on. I had a tangible opponent to fight! I had been doing the right things! These hormone irregularities aided in my insulin resistance! I didn't just do this to myself!

The next day, I'm told that my ovaries look fine.

What am I supposed to do with that? How can this be? I don't FEEL RIGHT, and it's not my thyroid, and now it's not PCOS... well what IS it then? Another day crying in the doctor's office trying to get my questions and issues out clearly, but stumbling over myself because I'm emotionally distraught.

I don't FEEL right. "What does that mean? How so?" Valid questions that are nearly impossible to answer when your brain is in overdrive trying to make sense of the contradictory information you've just received. My stomach hurts, I get dizzy, I'm not in control of my emotions. I feel off. I don't feel like myself.

Another battery of tests have been ordered. Now we are looking for signs of Celiac or Chron's Disease. (I don't even think I'd test positively for Celiac if I have it, since I haven't been regularly eating gluten for months, and that contradicts the guidelines for testing!) Internal medicine, endocrinology, OBGYN... more doctors. More stress. And more than anything else, I am terrified that no one will ever figure out what is wrong, or that I'll have to leave the area (and network) to get answers.

Something in me just doesn't quite accept that I don't have PCOS. It's not always an easy thing to diagnose, and symptoms vary. I don't know how else to put it other than a gut feeling, but I just keep thinking that I have way too many of the symptoms, and that there is most certainly a hormonal issue happening.

I just want answers. I want to know that I'm not crazy, that I'm not having psychosomatic symptoms! I want to feel GOOD for a change. I the occasional pity party, but I feel like the last chick at the pity party ball right now. I don't want to be a whiner, and that feels like all I'm doing. Ugh. Am I just getting all the frustrations out of the way now, so that the rest of my life will be smooth sailing? Cause... that would be RAD!

OH, and just for funsies, my body has decided to bless me with an extra period this month. Cause that's EXACTLY what I want and need right now! :P Thanks ovaries.
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Member Comments About This Blog Post
    Thank you so much for the reassurance that it could still be PCOS! I will be discussing this with my doctor(s) for sure. I think that I've overwhelmed my primary care, she's even said that she she's run the tests she can and it's beyond her expertise now. I'm still on the hunt for answers, and I'm really trying to stay positive. I was feeling totally helpless, and now I still have hope! Thank you so much!
    1664 days ago
    Like Risingbluestar, I too have PCOS without cysts! (I did have cysts when I was a teenager, but now I don't.) I'll have to look into the diet you mentioned!
    1665 days ago
    Don't get discouraged! I have PCOS and guess what? No cysts on my ovaries! Still was able to get diagnosed.

    You do NOT have to have cysts on your ovaries to have the condition. It is only one part of the condition. If that is all a doctor is going by, get a new doctor if possible! I would recommend an endocrinologist (if that is not who you are seeing already.)

    What you need to do is get a test for your androgen (male hormone levels.) Women with PCOS have high testosterone levels. Also, the endocrinologist will examine you and that will be part of how he diagnoses you as well.

    Also, did you know that women with PCOS are 4x more likely to develop Hypothyroidism?

    Just because tests come back "within the normal range" does not mean you aren't suffering from these conditions.

    I had 3 blood tests done and the doctor kept saying it wasn't Hypothyroidism but guess what, the 4th time and boom, it WAS my thyroid. I knew it was because of the symptoms. Exhaustion, weight gain, dizziness, etc. The results were actual showing that I had sub-clinical (barely there/borderline/mild) Hypothyroidism but I felt incredibly sick for it being sub-clinical. Also, I had CRAZY mood swings and emotional just how you described.

    Doctors may go to med school for years but we have lived in our bodies all our lives.
    Trust your instincts. Your body will always tell you something is up and a lot of times your instincts are correct! :)

    Your stomach issues could be unrelated. You could have Irritable bowel syndrome
    or your stomach could hurt from all of the stress from this situation. Then it again, the stomach issues could be related. Hypothyroidism can cause constipation and
    probably other issues too. It just depends on the person.

    If you have any questions at all, feel free to stop by my page or send me a spark message.

    emoticon emoticon

    1666 days ago

    Comment edited on: 7/28/2013 7:41:40 PM
    I'm so sorry you've been going through so much! I hope you get some answers to all your questions. emoticon
    1666 days ago
    I would get another opinion if at all possible. I'm going to check out the plan you've been on. That 's one I've never heard of. Good luck to you!
    1666 days ago
    Thanks, I appreciate it. Low amylose, primal, and whole 30 have more in common than differences! I'm almost grain free, only eating quinoa and on rare occasions, oats. I've tried to eliminate sugars, and the majority of what I eat is whole. I've thought about going whole hog and give the 30 a try!

    I've just been feeling like I can't seem to catch a break, when I leave one bad situation it opens up another set of problems! It's just becoming exhausting!
    1666 days ago
    emoticon I'm so sorry you've been going through so much. But I think you're right. You know your body better than any doctor, and you should trust your instincts. Maybe the diet you've been following, was doing more for your body than just allowing you to lose weight, and that's why your test results weren't enough like a typical PCOS patient for your doctor to give you that diagnosis.

    Recently, I discovered the Whole30, and ended up completing a Whole90. Even though the site had tons of testimonials about how eating clean changed their health and their life, they all just seemed too good to be true, but then I followed the plan and experienced dramatic changes in my own health.

    Hang in there Linnea! You'll figure it out.
    1666 days ago
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