Falling through the cracks

8675309mj
8675309mj Member Posts: 21 Member
edited February 2023 in Ovarian Cancer #1

Not sure what board to post this question… but I’m really worried I may have something serious- my periods have been very regular but in the last year they abruptly stop after 2 days- never any clots anymore and I feel super bloated- with nausea. I never finish meals anymore. We’ll it’s humiliating to explain this again and again and have doctors just say I’m getting older. No hot flashes and super regular menses. I’m dead serious- is there a network that can order scans without going to the ER? Or I need a doctor who will listen- is there a network of doctors who promise to listen? My vagina is swollen and so uncomfortable- no sex and the strangest mucous discharge. One month I bled clots for a whole month. Strange!! I can’t make this up. I’m so over explaining this to doctors- I think they are reading each others notes and saying I’m nuts?? 😂 😳 it’s my life and I want to know. I really want a scan and will pay any amount to do this. I’m extremely busy caretaker and am falling through the cracks and I think nobody cares.

Comments

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #2

    Hi, mj

    I’m a visitor from the Uterine Board. It is usually very quiet here, so I’ll try to help.

    I’m so sorry no one is paying attention to your complaints. You say doctors, but didn’t specifically mention a GYN. Obviously, you fear ovarian cancer or you wouldn’t have found this site. So, I’m sure you know that bloating and the inability to eat full meals/feeling full unusually too fast, are signs of ovarian cancer. The discharge, and bleeding issues…I think…are more indicators of uterine problems (and many times NOT cancer)! One of the reasons ovarian cancer has such dismal survival rates is because it isn’t diagnosed until patients are Stage IV…or at least III, because their symptoms are dismissed or ignored as being digestive problems.

    The first thing you need is a good GYN. You need a vaginal exam for sure! And a Pap smear! I hadn’t seen or needed one in years when I suspected a big problem, so when I called to make the appointment, I also requested a transvaginal ultrasound (The FIRST test you need!) I live in a big city, and he had that equipment in his office. I did NOT need anybody to order that for me. A simple blood test needs to be ordered for you: CA125. It is a cancer antigen test, used most often for ovarian cancer patients. It is NOT a good indicator for everyone (including me), so don’t freak out about the results!

    Please try these things first and come back to let me know your progress.

    No need to panic until you have some answers.

    😎, A

  • TBullwinkle
    TBullwinkle Member Posts: 7 Member
    #3

    Your first stop is at a gynecologist. Some of your symptoms sound like ovarian cancer and some sound uterine related. DON'T FREAK OUT! There are many things this could be. You need a full exam. Your gynecologist may require a Transvaginal ultrasound and a CA-125 blood test. My CA-125 showed I did not have cancer. I actually had Stage 1 ovarian cancer. One of my doctors was the one whose lab created the CA-125 test. He told me it is not reliable for everyone, so he was skeptical of the results given my ultrasound and CT scan.

    Regular doctors often miss the signs of ovarian cancer. If all you have is a regular doctor, a CT scan or MRI can be ordered. However, you really need to see a gynecologist. Don't let them ignore you! You are your own best advocate. Many women get "dissed" because the signs of ovarian cancer are so vague. BE PUSHY! If you are not getting the attention you need from your doctor, find a new one!

    Hang in there!

  • 8675309mj
    8675309mj Member Posts: 21 Member
    #4

    @TBullwinkle thanks for your reply. Well- it’s discouraging because I’ve seen 2 different gyn doctors. I keep thinking how do I get in that club to get a scan? I feel left out and ignored. My regular woman’s health doctor can get me in Mid September after I told all in an email. Doctors don’t care period. There is no way to get their attention.

    There's gotta be a network of doctors that listen. Please, if anyone knows of a gyn doctor that listens in SF Bay Area. I do not want to visit the ER or wait till mid September. If this turns out to be Cancer after being ignored I will report every doctor I saw to the medical board.

  • 8675309mj
    8675309mj Member Posts: 21 Member
    #5

    Btw- how do you convince a doctor to listen? The last gyn I saw was talking about his weekend in the hall as I walked out of the clinic- then he touted a fancy reconstructive surgery after I ran into him at work- I was so disgusted cause I really felt sick that day.

  • PepeOrlando
    PepeOrlando Member Posts: 4 Member
    #6

    Hi,

    • This is my 5th year dealing with ovarian cancer. I do research daily on this topic trying to save my life. I've been through a lot. I live in the Bay Area. What places are you going to? I don't know what your financial situation is or what type of insurance you have, but call UCSF and get in there and see an OBGYN.....ASAP. Try to get a female doctor. It could be fibroids and it might be something else, but the sooner you know the better it is. Gynecologic appointments: (415) 885-7788
    • Ask for an ultrasound pelvic exam and a CA-125 blood test.....just like other people have said on this thread.

    Take care and don't panic.

  • 8675309mj
    8675309mj Member Posts: 21 Member
    #7

    Thanks for your reply @PepeOrlando I was at UCSF gyn and woman’s health. I can’t seem to explain things the right way- of all things I’m a nurse for 30 years as well. What do I say? My husband is getting ready to drive over there and let ‘‘em have it. I was very out off after my appointment- the doctor promised to call me but he didn’t. After he walked out of the room he was talking about his weekend plans. It still haunts me because after my MyChart messages after my last ultrasound not going well- long story I had more info- and he dismissed me in his next message. How do I explain this AGAIN. Every time I explain my symptoms I discredit my self by being unheard by yet another doctor. I tried to call into see another doctor and they placed me on hold- then came back and said she was booked for the next 6 mos. A friend of mine got an appt with this same doctor right away. I actually work at UCSF too- can’t seem to get into that club. What do I say to get someone to listen? Which doctor should I ask to see? I’m getting ready to ask a general surgeon at work to get a CT scan- I simply won’t tolerate another ultrasound after what happened last time.

  • PepeOrlando
    PepeOrlando Member Posts: 4 Member
    #8

    I'm mystified. Why are they not listening to a you? Can you go to another facility? I'm with Kaiser and I feel like I'm in good hands. There are bad doctors everywhere. I think that a female OBGYN is the way to go. They listen and are more empathic. I'm sure they exist at UCSF. Do not wait. As you know the sooner the better for this kind of issue.

  • 8675309mj
    8675309mj Member Posts: 21 Member
    #9

    Yes I don’t understand either. I’ve seen a female fixture in woman’s health at least twice and the male doctor all at UCSF. A male gyne doctor in Marin County. I guess you believe what you want to but face a scary reality when you realize 3 separate doctors ignored signs. I want to believe them that nothing is wrong- but what do the in their right mind would ignore patient report of symptoms. How do you even see the next doctur without saying you had 3 doctors ignore my reports of symptoms? Doctors read the EMR and ignore the patient today- I just want to know what exactly to say? Do I say no it’s is listening to me?

    When people ignore me I run for the hills- hopefully there will be no consequences to this.

  • 8675309mj
    8675309mj Member Posts: 21 Member
    #10

    UPDATE: I finally got someone to listen. I’m getting an MRI very soon- I’ll call tomorrow. If the MRI is negative I’ll get a uterine biopsy. Full set of labs except cancer marker. They wouldn’t do anything different because sometimes this is high anyways. I’m a little concerned but at least I have sunshine to problem solve with. What a relief!! I’ll update again in hopes this thread helps someone else.

  • larcon3922
    larcon3922 Member Posts: 29 Member
    #11
    https://csn.cancer.org/discussion/325543/falling-through-the-cracks

    Hi mj, the symptoms you mentioned were the symptoms I experienced and end up with ovarian cancer IIA. Most prominent was the bloating for months, turbid urine with some blood for years and no doctor ordered a CT scan or CA125 until I started constant diarrhea, unintentional weight loss and a cough for 2-3 months that was chucked for allergies. The final symptom was lower abdominal pain and pressure and pain when I urinate that progressively became less and less. I was in a car wreck in 2015 and had to have CT scan of the entire body, they found uterine fibroids which my gyn doctor said, nothing to worry about. Because of the abdominal pain, weight loss, and cough, they did an urgent CT scan. Go to a public health that has a gyn clinic and request for a CT scan of the abdomen and pelvis and blood work CA 125 for starters. I pray that God will lead you to the path of a compassionate and knowledgeable Ob/gyn doctor and if need be an oncologist. Don’t let fear of the unknown get you down, you’re courageous and highly favored💕

  • 8675309mj
    8675309mj Member Posts: 21 Member
    #12

    Thanks @larcon3922 for sharing. I have to wait for my MRI till end of Oct. did you have the “blocked periods”? It’s strange that I’m getting more and more swollen. I dont understand where to get an intermediate urgent scan- it would seem odd if I’m competing with people getting an MRI for a sports injury that would never be life threatening. Is there a special place to get if cancer was suspected?

  • larcon3922
    larcon3922 Member Posts: 29 Member
    #13

    Why don’t you try appealing to your primary doctor. If he or she does not want to do and urgent Ct, at least order a CA 125, and if that shows abnormality , that should get their attention.

    praying—

  • 8675309mj
    8675309mj Member Posts: 21 Member
    #14

    UPDATE on my progress. First of all it seems strange I’m posting to a cancer website without a diagnose- so please excuse me. I appreciate the responses here to help figure this out.

    i have an order for an MRI with snd without contrast but it’s not till 10/28. My biggest question is this- does it make a difference where the MRI is done? Are there quality issues? Is it hard to transfer results between healthcare systems? I understand an MRI isn’t easily repeated due to cost- so how do patients get an MRI today in a timely manner without going to the ER? I can’t believe a person would have to goto the ER to get into the MRI in a timely manner.

  • FourBee
    FourBee Member Posts: 52 Member
    #15

    Have you gotten your MRI? What was the dx?

    I am so sorry that you have had all of these problems. The lack of coordinated care is frightening.

    Four Bee

  • 8675309mj
    8675309mj Member Posts: 21 Member
    edited November 2022 #16

    I got the MRI and the radiologist said it was “fine” but also said there were no other scans to compare to- which isn’t correct. I had a CT scan 4 years ago and a pelvic Ultrasound 1 year ago. I have “swelling” in one of my Fallopian tubes that also said this was “fine”. So good news nothing huge- but I’m still very uncomfortable and I know being a nurse, vague ongoing illness can get really bad too.

    I saw a Gyne NP who sent the MRI back to radiology for another review- but I’m wondering why she didn’t ask someone in her own office? When you see a specialty practice the first thing they do is review scans… but she said she isn’t qualified. I have a uterine biopsy scheduled in late December. I mean really?? Do they really delay things so much? Im literally 😵‍💫 and thinking 7 week delay with MRI scheduling, 1- 2 weeks finding a person to follow up with- now another 4+ weeks to get a biopsy. It’s been an 18 month ordeal. I couldn’t imagine fighting if the biopsy was positive. I’m feeling worse and worse. I cannot GET ONE PERSON to look at the big picture with me- in context- of what is happening and respond in real time- there is always a delay and asking for next steps. Getting access to care is something I’ve failed at and seriously the mental health aspect is the hardest part now. I know I’m not making this up. This is real. I had a life before this.

  • islandhome
    islandhome Member Posts: 1 Member
    #17

    I believe UCSF has a cancer center. Please try to get an appt with an gyn oncologist there if your issue has not been resolved yet.

  • FionaHasLeftMyBody
    FionaHasLeftMyBody Member Posts: 1 *
    #18

    Hi MJ,

    I am new to this forum and came across your post and I feel I need to reach out and encourage you to advocate for yourself until you figure this out. Do you have a primary care doctor that can help? How did the biopsy go and have you gotten the results? I know you stated you are a nurse and you work for UCSF, do you have any coworkers/friends who work in the gynecologic oncology department? Maybe they can help with recommendations on which doctor would listen to you the best. I am praying for you and hope you get answers soon!

    Also, I was diagnosed with ovarian cancer via a CT Scan done in the ER (w9ith & without contrast) and then had a biopsy two weeks later to confirm. If you are in pain, please go to the ER and if they send you home and say come back if it gets worse (or in my case, not better in 24 hours) go back! I know it's easy to say advocate for yourself and don't take no for an answer but hard to actually do that...unfortunately you may need to act like a *itch to get the answers.

    Good Luck!

    K.

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