Malvina B.

How to further advocate for myself

Hello everyone,

I (27f) wanted to know how everyone went about getting diagnosed or getting answers for whatever symptoms you all were experiencing.  Because I feel like I’m talking to a wall, and my providers are just not listening. I understand I am young, and the probability of ovarian cancer might be low. But I am someone who is very in tune with my body and healthy for the most part. There’s something extremely wrong, and I cannot get an answer. And everyone else is telling me that it’s not a big deal.

For the last year to six months, I’ve experienced unexplained increased heartburn, nausea, and dizziness. Also, I have frequent urination, left-sided lower back pain, and extreme fatigue. I feel discomfort in my left pelvic region, and all these symptoms worsened exponentially this month. I also want to add that I lost almost 20 pounds in a year without trying. This weight loss happened due to nausea and feeling full very easily.

At first, I thought I was pregnant, as my husband and I have been trying for kids. But after many negative pregnancy tests and a course of antibiotics, I was then prescribed treatment for a possible UTI.

After a negative UTI result in ms …, my symptoms were not improving, and in fact, getting worse.

Ultrasound and Confusing Results

I recently had a transvaginal ultrasound, which showed some free fluid in my pelvic region and a cyst on my RIGHT ovary. The ultrasound was originally ordered over the last month. This pain in my LEFT pelvic region has been getting increasingly worse. Also, this bloating that I had in my abdomen was causing pain because of the pressure against my organs. My OB ordered the ultrasound after feeling a large mass on my LEFT ovary while she couldn’t even feel my right side in comparison.

A few days later, before the ultrasound results were out, the pain was getting really bad. My husband begged me to go to the ER. For whatever reason, they ordered an abdominal CT instead of a pelvic CT (even though my pain was in my left pelvic region..). Which showed free fluid as well. They kept saying that the pain was from “heavy stool burden”. When I tried telling the doctor that the pain was not in my abdomen but in my pelvic region. I also asked him why there was free fluid, to which he looked confused and said that he had to look at the results again- he didn’t even go through the whole thing and was like,” Oh” when he scrolled down more and just said it was probably from the ruptured cyst and that I should follow up with my OB.

Further Miscommunication and Lack of Support

My OB told me that if the pain got worse, I should go to the ER. I followed her advice and went, but they told me the pain was from “poop.” They didn’t even touch or palpate the area I was complaining about. I tried to get more answers, but the doctor kicked me out, saying he’d tell the nurse to print my discharge papers. Then he said I was free to go.

My husband and I were incredibly frustrated at this point. I messaged my OB, explaining that I had gone to the ER and described what happened. My ultrasound results had come back, and after reviewing them, she said, “Looks like they just found the small cyst on your right side.” She suggested this might not be an OB-related issue. She told me I should talk to my primary about it and cancel my follow-up appointment with her.

I was astonished by her response. She was the one who was concerned after feeling the mass on my left side, which was still where all my pain was. But after seeing the ultrasound, she said it was more accurate and I needed to follow up with my primary for this issue.

My husband told me he had a hard time keeping it together. Watching the mess and the awful process just to get answers had been incredibly frustrating.

Current Plan and Next Steps

I’m just going to keep my appointment, and if my primary and OB don’t want to see me for this issue, I’m going to ask them for a referral to gyn oncology. I don’t know any of my family’s health histories, both on my mom’s and dad’s sides.

I’m just frustrated at the lack of answers regarding this fatigue, urination frequency, and free fluid in my pelvic region if this was all from a ruptured cyst… especially if it was going on for this long…

I want someone to listen to what’s going on at this point. Also, I hope some of you can give me hope and offer suggestions for getting this diagnosed since my doctors don’t want to listen.I appreciate any help you can provide.❤️

Answer 1

Tania

Hello, I am (51f), diagnosed with stage 3C low-grade ovarian cancer 3 1/2 years ago. I had many of your symptoms. And I am incredibly frustrated for you, and I would like to offer to help in any way I can. I could go to my FB group page and ask a fellow patient to share a Gynecologist doctor they love referring you to. I would need you to share with me where you are located. In the interim, I would request all of your medical records, including scans, to be mailed. Picking them up would probably be the fastest way to get them. Often, hospitals work off of a shared system called Epic, but it would most likely help you to have a copy.

Considering Another Emergency Room Visit

Have you considered going to a different ER? Is there any chance that the hospital you went to is on the smaller side and that going to a bigger hospital is necessary at this point? I agree with your husband about the frustration of lack of care, neglect, or laziness.

I have one more suggestion: to make a post on your personal FB page and on your local FB group pages to ask if there is a Gynecologist who would be willing to message you. The fact that you have what I consider to be classic symptoms of ovarian cancer is very alarming to me. Feeling full, bloating, pelvic pain, the feeling of a mass that they think is a cyst, but don’t know for sure. Their refusal to do a pelvic CT is alarming.

Do you know if they did a CA-125 blood test? This is a cancer antigen test. The normal range is 0-35. Mine was 251 at the time of diagnosis.

Answer 2

Lauren

I am so sorry you’re going through all this! I have a lot of the same symptoms as you (plus many others). Also, I felt like my doctor and my gyn were dismissive. I ended up being referred to a pelvic pain specialist/surgeon who thinks I have endometriosis. I’m having surgery for that. In preparation for surgery, they did an MRI, which showed the mass doubled in size in just a month. All my doctors blew that off. But with how horrible I’ve been feeling, I would not accept their dismissals and demanded a referral to an onc gyn.

She told me she didn’t suspect cancer based on the MRI. However, the only way to know for sure was to remove the mass and biopsy it (which my surgeon will already be doing). Don’t accept no for an answer. Ask for referrals. See a different doctor for second and third opinions. It’s insulting how much money we pay for health insurance and take time out of our days to see these doctors, and they completely dismiss us, minimise our pain, and take very little care for our wellbeing. I truly hope you get the care you deserve and some answers! Best of luck to you.