Second opinion and I guess I know better than the doctors

[Aleksa1121]

Hallo everybody,

After my stay at the hospital in my city where I got diagnosed with endometriosis (which I know I had for 12 years) I decided to fly across the country to see a ovarian cancer specialist. In the meantime my symptoms changed and I got general abdominal pains and pain in the area of my liver (ct and ultrasound showed cysts and hemangioma- cysts were not there 6 months ago). So at the time of the date I not only had more symptoms, but I also connected all the dots, the whole history of endometriosis and the cysts i had all those years- which were controlled by my gynecologist once a year and from 2018 once in 6 months. In April 2018 I had a 8 cm cyst that was discovered by my doctors husband (my doctor couldn’t see me so I went to see him). He gave me hormones and told to come in one month. I didn’t take them because in the past I got huge headaches from them. But I came one month later to my regular gynecologist and she told me the cyst is gone. I had only small cyst which didn’t really grow. I went back in December 2018 for a check up and the same small cyst was there, no changes. I will only add, that the last 8 years I never had any symptoms, or any pain. The last pain I remember was 11 years ago from endometriosis and cyst torsion. Anyway my idea is that in 2018 this 8 cm cyst ruptured and I had malignant cells in it (clear cell coming from endometriosis) and months later (February 2019) all the symptoms started.

Coming back to my ovarian cancer specialist date- it was a big disappointment. The doctor had around 15 minutes for me, because he came 2 hours late from surgery. He told me he couldn’t give me any answers right away, but if I agree to stay at the hospital he will look further.

Next day I got admitted to the oncology ward and stayed there around 10 days- for nothing. I never saw the professor again, the whole interview was made by the professor from endometriosis. She was great and wrote everything down. I also told her my hypothesis about ruptured cyst. The plan was they were supposed to look to my mri (I didn’t have results so they had to send it to the radiologist) and ct scan (both test were made at my first hospital stay in my city), make blood tests and let me know what i have. I had a really honest conversation with endometriosis specialist and she admitted that by my first laparoscopy in Feb something could be overlooked. So the whole 10 days I had only blood tests and ultrasound of my abdomen. At the end they let me go home saying that I should make a date with endometriosis specialist and that they don’t suspect I had cancer. How could they suspect anything if during those 10 days they didn’t even check my mri cd - first they told me sth is wrong with the cd and at the end one dr said that professor will look at it sometime in the next days..

I had really big hopes, because this professor (from Ovca) is one of the best in Europe and I was hoping that he will look outside of the box- or outside of endometriosis. My symptoms are far away from endometriosis and the only way to confirm that I have cancer is making second laparoscopy and taking sample of my peritoneal fluid (which they didn’t do during the first laparoscopy). Anyway I made a date next week with the endometriosis professor and we will see how it goes. I have a possibility to see another OVCA specialist, but I’m just tired from going from dr to dr.

I didn’t really want to write here, I was/am really depressed from all what’s happening with me, my health (I feel very sick), but I decided to do it, because maybe in the future someone with also look for answers. I realize I’m a complicated case, but in medicine nothing is black and white and doctors just don’t listen. I’m a doctor myself- well a dentist and I was hoping for more understanding from a professional. Unfortunately the time had passed and two months later I don’t have any answers for myself.

I wish you all a great evening!

[Hidden]

If you are not happy and your gut feeling is telling you sometime is wrong go back and ask for a ct scan and 125 blood test. I can understand you being anxious about being fobbed off, I wish you all the best

[Lindaura]

Dear Aleksa,

Your story is very heartbreaking, but sadly, all too familiar.

So many women are not listened to and their symptoms just escalate until the doctor finally pays real attention.

It is shocking that no one looked at you scans or offered another CT scan.

Have you ever had the CA-125 test?

That is a blood test that calculates the Ovarian cancer antigen in your blood and can be very useful.

All I can add is, don’t give up. Stay calm and keep trying to get answers.

Best wishes,

Laura

[Aleksa1121]

Thank you Suzuki and Laura. I had ca 125 test and Roma Index. Both are ok, but Prof himself said that with clear cell its often in normal limits. Last year when I had this 8 cm cyst ca 125 was even lower.

I actually didn’t want a second ct scan, because I came to them with „fresh“ results from my first stay at the hospital. The point is I have no tumors, and nothing except the changes on my liver were seen. But they are to small to biopsy I assume.