Hi ladies! 🙂
I am a 43 year old woman who thinks she has been misdiagnosed by doctors for over a year. They came up with multiple scenarios of what was wrong with me, most that always changed. They thought maybe I was blocked up, gaseous, pre-menopausal, and/or had wheat belly (too much wheat in my diet), yet my symptoms remained the same. Back in January I continued with feelings of distendedness, feeling full all of the time, heavy bleeding, changes in periods, as well as just overall fatigue. I worked through it all and continued my days as normal, I worked out, did housework, worked, hung out with friends, everything!
After yet another visit to the doctor (my normal doctor was out and we had to see a nurse practitioner) I was put on gas relief pills. A few days later I was in so much pain I was crawling on the floor. Unbeknownst to me I had a cyst that had ruptured. The pain went away and the nurse they said they would just dissipate into my system. They scheduled a CAT scan after and when the results came back no one took note of a mass that was already there at 2 mm. Whether they thought it was another cyst or not, I still do not know.
After still having heavy bleeding and changes in my period for months they said I was producing too much estrogen and not enough progesterone and I was pre-menopausal. The bleeding was just too heavy and I was still walking around with the same distendedness and symptoms as before. I needed more answers, so I went back. I had a vaginal scan which they said was inconclusive. I finally had an MRI, which unfortunately showed a mass on my uterus and ovary, surgery was recommended immediately.
A week later we found out I had endometrial cancer, stage 3A. Where did my life go?? My head was swirling and still does some days. The cancer was in my uterus first and had traveled to my ovaries. It was just overwhelming. I had a full hysterectomy where they removed everything and tested everything. Mine had not traveled to my lymph nodes but I have been diagnosed with a rare cancer- clear cell andocarcinoma (CCA). There is very little research on CCA and the best treatment is not known as they have few patients with this (if anyone has any info on this please pass it along). I am in chemo treatment now. I am being given taxol and carboplatin along adjunct radiotherapy to my vaginal cuff in a couple of months. I am just on my second round of chemo and I truly give credit to all you ladies who have gone through this!!! YOU ARE ALL AMAZING!! I have a wonderful support system that keeps me going as well. I cannot say how blessed I am to have friends who have hearts of gold and who pick me up and give me laughter when needed. We have reasons to smile every day. 🙂 Some days you just have to look a little harder to find your rainbow – color it how you want. 🙂
I also have been diagnosed with Lynch Syndrome as well. My biggest obstacle is that there is a 50/50 chance that I passed down this gene to my son. I am not sure on how to have this conversation with him, but I do want him tested so we can do everything preventative as necessary. I am an advocate for the genetic testing and of course for endometrial cancer and any cancer!! Make sure you get early screening and to be an advocate for your own health ladies, as too often they look at our chart and we get ‘pigeon holed’ as they say. They heard the same problem but are not coming up with different solutions! If you can find everything from an MRI, a CAT scan, or a vaginal CAT scan then why not do it!! What about the blood tests?! How many times have you had blood drawn? Why not make it mandatory to test the CA-125 and CA-19 during your routine pap test?? I find no logic to not do testing due to all we know and all we have had to go through.
I am at the beginning of my treatment and have a good five months to go! Keep the motivation coming ladies, as you know it is easy to slip into negative mode. You are the true heroes of today!!! My next venture is looking into the DES estrogen shot from way back when. If anyone has heard of this please let me know. I am looking to find the origin of my CCA. FIGHT LIKE A GIRL! 🙂
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.