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Worried...Two doctors two very different answers and I am getting scared

Posts: 2
Joined: Apr 2016

I am 48 years old when I was 24 I had a total hysterectomy I had one ovary removed during an emergency surgery (age 21) during my C-section the ovary ruptured and I nearly bled to death so it was removed. a couple of years later I had 3 different surgeries to remove endometriosis, it was everywhere inside me ovary, kidneys, stomach, liver, everywhere! That didn’t get rid of it and at 24 it became so bad that I almost bleed to death in my doctor’s office while he was on the phone with my insurance company trying to get them to approve the surgery. I was taken to the hospital by ambulance and had an emergency hysterectomy removing everything and cleaning out my insides as best they could. I thought it was all over, I went through menopause the entire 9 yards of the hot flash HELL. I had several test during the years since to check hormones levels and such and also many many abdominal ultrasounds for various reasons and none of them showed any ovaries. Then one day 2 weeks after having an ultrasound that showed NO ovary’s I started having pain and swelling in my abdomen so I was sent to the ER for another ultrasound and there full formed was an ovary which pretty much freeked out everyone. It had grown in less than 2 weeks. I was sent to an OBGYN to have test ran and to set up to have it removed because everyone said it had to be cancerous. When I went in for the test they did a pelvic check and PAP and relied that part of my cervix had also started growing back and my pap came back abnormal. Well, they did the surgery and removed the ovary and all the other things that were growing back and when I went in for my post op check they told me that the pap had come back saying there was cancer present and so they did a bunch of other tests and biopsies and I was told I had a very rare form of virginal cancer, the doctor told that only 15 people in the world have been diagnosed with it, but for me not to panic that it was a very very slow growing cancer and I probably not need any treatment for at least 10 years. I would be following up every 6 months to make sure there were no changes. My 2nd follow up I get a letter stating that he no longer excepted my insurance and I had to find another OBGYN. I did so and this doctor told me that there was no such thing as the cancer he told me I had and that under no circumstances does ovaries or cervix or anything grow back after a hysterectomy and that the doctor I had was full of it, her words. Now I don’t know what to do. It’s been 3 years since I have been seen and I am having problems but I don’t know where to turn now. Please help me if you have had anything like this or know what I should do. I should also say that I have several autoimmune illnesses and take 2 different types of chemo for them along with many other medication.

Posts: 27
Joined: Mar 2016

I'm sorry I don't have any knowledge about what you're going through, just wanted to offer some support.  Since it may be too difficult for you to pursue at this point, I would notify your insurance company about the possible malpractice you experienced with your first doctor and have their team look into it.  They have the resources to do that and they have incentive too, if they paid for any of those services.  You need clarity on your situation so you can proceed in the right direction.  Don't stop looking into this and being your own advocate!


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