Chronic Illness and Mast Cells, Thoughts

I Want to Be Able to Help Other People, But I Can’t Even Figure Out How to Help Myself, Part 2

Still feeling alone.

First part of July: I went for my follow up with my PCP. Results were not back on the 5 HIAA for carcinoid syndrome. I gave my PCP an update on the total B.S. I had been getting from the NP at my OB/GYN office and what the NP told me about my test results (the ones that were actually ordered, but not the ones they didn’t order which they were supposed to order). So guess what?? My PCP orders the breast ultra sound and abdominal ultra sound. I go for those. Nothing concerning showed on the results (at least nothing that helps with figuring out what is causing my estrogen levels to be through the roof).

A total of 13 calls have now happened between me and my OB/GYN office. I have gotten no where with them. I keep getting told they will review my records and get back with me on what the doctor wants to do. And no, the NP never did call me back as she stated she would the last Friday of June. They called and left me a voicemail on July 21st, again stating they would review my records and get back with me.

First week of August: I went to my appointment with my OB/GYN (yes the actual doctor) the first part of August. I told him the problems I have had. What the NP had told me at my appointment, what the NP had told me over the phone, the problems with the tests not being ordered, etc. He just looked at me and smiled, his face turning a little red like he was embarassed. No apology. He told me they told him I wanted to have a hysterectomy and that was what I was there for at my appointment. To discuss surgery with him. I made it very clear that was not the case. I had to reiterate everything I had told the NP at my appointment in June. That my main concern and why I was there for an appointment was because my estrogen levels were extremely high and I was very concerned. I clearly stated to him, that what I wanted was for them to figure out why and what to do to alleviate the problem. He then told me he would need to review the records, but that my PCP just drew the labs at the wrong time. I told him, “Dr.(PCP) said he was ordering the labs at the correct time.” He then preceded to tell me I was wrong and that they were just ordered at the wrong time. After going over my cycle and dates multiple times, which proved that the labs were drawn at the correct time in my cycle, he still claimed it was just done at the wrong time and that “PCP always draw them at the wrong time.” By this time I was really getting upset during the appointment. He then sat, without looking at my chart (by his own admission) told me his opinion is I just need to have a hysterectomy. I pointed out the fact and asked that a hysterctomy would not alleviate my symptoms unless they did a total hysterectomy, correct? Because my ovaries would still be producing hormones unless removed. And if I could change just one thing about my body, it would be the swelling. And the swelling is ten times worse with my cycle during ovulation and my period. Quickly, without any consideration or even peaking at my chart he said, “I advise you to have a total hysterectomy and just take hormones.” I told him that I did not want surgery until I had answers about what was causing the high estrogen and asked would surgery alleviate the high estrogen levels. Again, I got told he had to review my records. He then asked who told me I had adenomyosis. I told him the NP told me that over the phone, and that she stated it was what he told her. According to him, much of the conversation the NP told me she had with him NEVER happened. And he didn’t seem to have a clue about anything. So then I specifically ask if I have adenomyosis or not and I get told he’ll review the records. REALLY??!! I said, you have the ultra sound report. NP said it showed on the ultrasound. More quetions ensued back and forth. He looking like a deer in head lights, and me I’m sure as red as a beet and blood pressure rising completely frustrated. At some point he tells me to give him a few minutes to read the ultra sound and he “read” the report. Verdict, “I need to look over more of your records.” But “surgery would fix the adenomyosis and endometriosis.” That’s my advice, he said. I, again, made it clear I did not want surgery until I knew what was causing the high estrogen levels. He continued to make his sales pitch. Then ordered more labs (which by the way I had not had a period in like 2 months, so how he was timing the lab right for my hormone levels is a complete and total mystery).

Aug. 20th: I didn’t hear from them on my labs until Aug. 20th, and this I am sure is because I called them and left a voicemail requesting my lab test results. On Aug. 21st, they called late in the afternoon to “let you know your results were abnormal and NP is reviewing your results with Dr. (OB/GYN) to let him know and see how he wants to proceed after reviewing your records.

It is now September 24th as I sit here writing this. And of course, they have not called me. I’ve heard nothing. The stress and constant back and forth trying to get help from my doctor has been utterly ridiculous. (I strongly advise if you are in a similar situation to not let it go on as long as I have. Why? What if I do have cancer?) I’ve quit calling because of the toll it was taking on my health from the immense stress from the absolute bull shit they have put me through. I am considering writing them a letter and sending it through the portal system. However, I have another OB/GYN appointment with a different doctor and office line up for next month. I’m not happy about it because I had liked (up until June of this year) the OB/GYN I’ve been seeing since 2016. He did my surgery for endometriosis in 2017. He is mast cell aware and he is the ONLY surgeon I have ever had which took my symptoms seriously and was willing to premedicate before surgery.

And now….I feel…. I find myself in the dark again.

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