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Update- Headaches, anemia and sugery

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Post  sailingmuffin Thu Jul 09, 2015 5:58 pm

Hi All,

I know some of this isn't migraine related, but I've gotten so much help and support from this forum that I wanted to share this with you. (I discovered this forum only a month after diagnosis at age 17, now 34.)

The good news is that we have probably found what is causing the anemia. The bad news- it is kind of scary and will require surgery.

I was diagnosed with severe iron deficiency anemia in early May and began weekly IV iron infusions. My PCP and my hematologist also had me follow up with my ob/gyn to see if there was anything there that could be causing the anemia. Initial consult went well, but he also wanted me to follow up and have an ultrasound. It turns out that I have a 12cm cyst on one ovary and a 7cm fibroid in the uterus. My ob/gyn said that the ovary needed to be removed, as did the fibroid. Due to the fact that the fibroid is so large and it has messed up the uterus, we also agreed that I would need a hysterectomy as well. He drew blood work to check for tumor markers. If the blood work came back with a low risk of cancer, the surgery could be done here. If it came back with a higher risk, then it would be done at the University Hospital by the ob/gyn cancer surgeon there.

Last week, my doctor called me and told me that the markers were elevated and that he had gotten me in with the group at UAB. Actually, he got me in with the top guy there. I saw the surgeon on Monday. Fortunately, the cyst doesn't look malignant. He said that the markers were probably elevated due to the fibroid. He wants to remove the one ovary with the cyst, and will also do the hysterectomy. (Apparently, there is not much uterus to save and the medications used to prevent future fibroids are contra-indicated for me due to the migraines. If I ever became pregnant, the risk of uterine rupture would also be pretty high.) I will have surgery on Wednesday morning 7/1/2015.

The surgeon removed the left ovary and the uterus. The cyst on the ovary was benign. The fibroid tumor had completely destroyed the uterus. Fortunately, pathology reports have come back and both are benign- NO CANCER! Very Happy Yay. They were also able to leave the right- good-ovary. This means that I will not go into immediate menopause- Yay. So it went as well as possible. I was even able to come home a day early. I will be at parents house for at least a week.

I am ok and home recovering.

We hope that this will also help the anemia issues- since I won't be loosing blood or having periods at all now. The anemia makes the fainting and headaches so much worse. Currently, my hematologist and my ob/gyn surgeon are trying to figure out if I should continue with the last 3 rounds of IV iron or if it would be better to try oral iron again and check labs to see what is going on. Basically, decided to let them fight this one out and go with what they say. I just hope that the anemia gets fixed, if not, then we will have to look at other and scarier causes.

Headaches are still there- but meds are helping. Post-op and bad headache are responding to a combo of Percocet, Klonopin, and nucynta.

Thanks for always being here for me! Please keep sending some good thoughts and prayers my way- they seem to be helping.

Pain free days,


Posts : 550
Join date : 2009-12-05

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Post  Jeff2014 Mon Jul 20, 2015 12:41 pm

Hey, I'm so sorry you needed to have surgery SailingMuffin. I'm glad it went as well as you hoped, and I hope it helps your symptoms. I will be thinking of you, and take care.



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Post  dcook60 Wed Jul 22, 2015 9:01 am

sailing, i also discovered this forum 17 years ago, at age 57. and couldn't have made it as sanely as i have, without it. nobody visits much anymore though; don't know what that's all about.

after all these years SOMEBODY figured out your symptoms. geez, it took forever, but i am so glad for you, that most of the problems will be gone, or at least less severe. yay for you! dianne

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Join date : 2009-12-03
Location : spokane, WA

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Post  lorente Fri Jul 24, 2015 9:26 pm

I'm so glad they finally got it figured out, and I hope you feel better very, very soon.


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