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    Vent: duplicitous gynecologist

    Didn't really know where to put this, but I have to get it off my chest - and I figured The Ladies' Room was a good place to vent about a gynecologist.

    I've been having heavy periods for about a year now, and had gone to a new gynecologist in April. My usual medical insurance pays for my PAP and annual to be done by a NP, who referred me to gyne at the associated hospital when we discussed what was going on.

    I knew I had uterine fibroids, and the gynecologist and I decided on the pill. In August, it had gotten slightly worse, and we discussed surgical options. The fibroids are too small for surgery, but I'm having to change overnight pads every 30-90 minutes for a couple days of my period. This month, I ran around the apartment with a folded-up bath towel to sit on for 3 days because I got tired of having to scrub my chairs if I sat for more than 30 minutes.

    So, I'd asked about a focused ultrasound treatment that basically burns the fibroids out of existence. It's an ablation procedure. For me, one of the big pluses is that recovery is 24 hours, rather than the 4-6 weeks that abdominal surgery requires. Both because I live alone, and because my last exacerbation was likely triggered by jaw surgery (I'd not been diagnosed). She said I'd be "an excellent candidate", and said I should let her know if I needed anything written for the insurance company, since it's not standard treatment yet. Neither is it experimental - it's been FDA-approved for a number of years.

    So two months ago, I sent in a letter requesting that she write a letter for pre-approval from the insurance company. I reminded her of all the points we'd discussed in the appointment. And I asked that the office inform me by phone or e-mail when they'd sent the letter to the insurance company (since I'd had trouble with insurance stalling in the past).

    After two weeks, I hadn't heard anything, so got in touch with the nurse. She couldn't track down the letter or any record of its existence, so I carried in another copy. This time, I also hand-wrote on it that they should confirm with me that they received it. Two more weeks. Nothing. So I called and they said they'd track it down. Eventually, I called and left a message that I'd have to file a complaint with the hospital if I didn't hear back.

    Well, that got the office manager's attention. She's been trying to track down the letter, and keeps saying she'll call back, but I keep having to call her 5 days later. Today, she finally called back on her own.

    Turns out the letter's been with the doctor this whole time. She told the office manager that she didn't know enough about the procedure to know if it was appropriate or effective, so she couldn't write a letter. And that it was experimental, so the insurance wouldn't cover it anyway.

    This is the exact opposite of what she said to my face in her office. AND she made me suffer through three more periods - one of which cause me to have to buy a new set of clothes while out shopping because I'd bled through an overnight pad, tights and a jeans skirt.

    I am so upset. Why didn't she get in touch with me immediately to tell me she'd changed her mind? Or at least to tell me she had new information that made her uncomfortable writing the letter?

    Yes, I'm terminating my professional relationship with this doctor. Tomorrow, I will also get my medical records - especially since I'm concerned that she either didn't write what she said to me, or that she might try to "amend" them to reflect what she said today to the office manager. And I will also stop by the complaints office of the hospital clinic where she works. This is a university medical center.

    On top of it, I called the center that does the procedure. I explained the problem to the doctor there briefly, and he said they would look at my ultrasound to see if I'm a candidate, and that they have a list of gynecologists with whom they've worked. Some are in my network. BUT for the procedure, they require $10,000 up front because they've had so much trouble with insurance companies not paying up - sometimes even when they've given written pre-approval with dollar amounts in the letter.

    I'm a full-time graduate student and don't earn much more than $10,000 from my teaching job. So I broke down on the phone. I'm embarrassed, but it was just the final straw.

    Going to see my GP first thing Friday to figure out what to do. Oddly, I'd discussed with my GP some of my concerns about previous treatment decisions with the gynecologist in our last appointment.

    Oh - and no, Medicaid won't cover any of this. Not that it matters, because they won't get back to me about the application I'm trying to do. I know I'll be declined, but I need proof of being declined in order to apply for charity aid for the transvaginal ultrasound from earlier this year. Even the 10% I pay is kind of pricey.

    I know: TL TR. But I had to get this out of my system. I'm not necessarily looking for solutions - just need some support. My mother's solutions was a transvaginal hysterectomy - but she was treated for fibroids when the treatment options were pretty crude. And she was 10 years older than I am. Ugh.

    Thanks for reading.
    Nabbosa

    #2
    Nabbosa-

    Sorry that you have had to go through this. How awful. What this doctor did is not right. You were more than patient. I wouldn't have waited that long and would have bugged them more often.

    I do want to mention that I had a friend with the same issue who had the ablation done. Less than a year later she still needed to have the hysterectomy. I just wanted to let you know that the ablation is not necessarily going to fix things or fix them for long, and you may still need a hysterectomy. I know it will be different for everyone, but it is something for you to consider through all of this.

    Good luck and I hope your GP can help you out. Be sure to make a complaint to the hospital against this doctor.

    Comment


      #3
      I'm so sorry to hear your are having such a difficult time. I really hope everything works out for you. (((hugs)))

      Comment


        #4
        Nabbosa, what you've been going through with your cycles sounds just awful. On the ablation, is this the same as what they use for removing the endometrial lining for heavy periods?
        I do not have MS. I have Whatchamacallit; and all of the symptoms are mirages.

        Comment


          #5
          ablation

          Nabbosa,

          I had the ablation done February 14 (yeah, happy valentines day) lol. My Gyno said I was a good candidate for this. I had the Novasure and so far it has worked beautifully. No periods or heavy bleeding since then. I could not lift my head without bleeding let alone walk. I lost a lot of blood and i developed anemia because of the loss. Now I am facing ON with problems in my right eye. Dr. is going to test my iron to see if it is low still. I feel much better. I had a good dr Nab. If the iron level is good then Dr will perform other tests for MS. I have other issues that have crept up since and it points to a possible RRMS. Waiting to see. Hope you get better Nab. God Bless
          STR

          Comment


            #6
            First of all, (((hugs))). I think the ablation vs. hysterectomy is such a personal thing. I don't blame you for trying to find a different doctor after that whole thing. Hopefully whoever you find will be able to straighten the whole thing out and help you out.

            If you have not checked out the website hystersisters... then do. They talk all things from ablations, hysterectomies, everything to do with down there and all the pros and cons. I could not have done any of my surgeries without them.

            As far as the ablation goes- it is far less intrusive than a hysterectomy. But the younger you are, the less likely it is to work. For some, it is the best thing since baked bread. I had my ablation at age 26. Recovery was great!

            But it only gave me a couple months reprieve from my symptoms. So a year later I had my hysterectomy. Yup- recovery stunk. But it was sooooo worth it.

            Regardless of whatever you & your doctor end up deciding, I hope you get relief. It is so frustrating when the medical processes don't work the way they are supposed to (getting you the help you need).
            Erin

            doing the Limbo since 2005

            Comment


              #7
              Sorry you're getting the run around from your doctor.

              Just a thought...ifnyou do decide to go the hysterectomy route, and your fibroids are small you might look into a Davinci hysterectomy. They're minimally invasive. Even a hysterectomy done vaginally, would be an easier recovery than an open surgery.

              Hope you find a solution soon!

              Comment


                #8
                Ablation

                I had the ablation 2 years ago and I am happy with the results. I had fibroids and menorrhagia. I tried the pill first and it made everything worse. I also had to change doctors because my first doctor wanted to do the procedure in his office. The recovery time was 1-2 weeks and I did need pain pills after the procedure. Good luck.
                Katherine

                Comment


                  #9
                  Update!

                  Thanks for all your input - and especially the empathy.

                  I went to my GP, and she was FABULOUS. When she said, "Many of our patients have had good experiences at Other University Clinic," I realized that meant that OB/GYN at our university hospital has larger issues with patient relations. So I'm going to go to Other University Clinic.

                  And my GP took an hour to talk to me about different issues. It was great. And she did a couple of blood tests to see if I may have developed anemia - which might make the heavy bleeding worse in some cases (and can be caused by heavy bleeding, too!) Except then she told me it's her last week and she's taken a job in California! Anyone in LA looking for a GP, let me know. She's fabulous.

                  I'm not looking at an endometrial ablation - the "scraping out" procedure that I think a couple of you are talking about. I'm looking at a procedure that targets just the fibroids with ultrasound to "kill" them.

                  Luckily, nobody but my mother has said the word "hysterectomy", so I think I can avoid that for a while. I'm 42, but not 100% sure I don't want to try for kids. Though it seems a long shot at this point.

                  I recently saw something on the boards about Beta (and maybe other DMDs) affecting periods. Anybody have heavier flow due to Beta? Or has anyone read/heard about that being a possible side-effect?

                  Hope you all had a Merry Christmas!

                  Comment


                    #10
                    FWIW, I have a Mirena IUD and haven't had a period in years; many women find much lower bleeding when they have one in place. I never bled as much as you, but I went from medium/heavy to...nothing.

                    How that would/could work with fibroids, however, would be something only your new gyno would be able to tell you.

                    xoxo

                    Comment


                      #11
                      I too have a Mirena IUD which took about a year of still
                      irregular periods (but much lighter) to settle down. I now have not had any bleeding since last May-fabulous! Something to look into for sure. Don't suffer for years like i did. I ended up very anemic.

                      Comment


                        #12
                        Originally posted by Nabbosa View Post
                        I recently saw something on the boards about Beta (and maybe other DMDs) affecting periods. Anybody have heavier flow due to Beta? Or has anyone read/heard about that being a possible side-effect?
                        That I can tell Beta has made no changes to my periods. Don't recall reading about that as a possible side effect either.
                        DX 10/2008
                        Beta Babe 12/2008-07/2013
                        Tecfidera 07/2013-01/2018
                        Aubagio 01/18-09/20

                        Ocrevus 09/20-present

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