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

Feeling alone.

Mid June: Back in June I went to my PCP for my regular monthly follow up. My menstrual cycles have been out of control with extremely severe angioedema, severe pain unrelieved with medicine, nausea, unrelenting insomnia, and extreme mood swings where I just cry for no reason. So he ordered a blood test and found out that 2 of my estrogen levels are insanely high. Alarmingly high. So he referred me to my OB/GYN.

Mid June: I went in and found out that I had to see a Nurse Practitioner. She did a routine wellness check with pap smear. It was the most extremely painful pelvic exam and pap smear I have had in my life. I thought I wasn’t going to make it through it and I tell her this because it’s not normal to have that kind of pain down there. She tells me she does’t see anything abnormal and that everything looks fine from the pelvic exam. Then she tells me she is concerned about cancer, and that “we will just have to deal with it, whatever it is.” Of course this alarmed me a lot and it has caused me an incredible amount of anxiety because she didn’t just stop with that statement, she went on and on and on throughout my appointment about cancer. She scared me. BIG TIME. I have fibrocystic breast disease, and I have been having nipple discharge (sorry!) and some other weird things going on female wise that cannot be explained. I am having swelling in my female area (sorry!) sort of like angioedema and it is so bad at times I have to keep an ice pack between my legs. And I told her all about this too. To make a long story short she told me she was ordering multiple tests. A pelvic/vaginal ultrasound, abdominal ultrasound, breast ultrasound, and mammogram.

June 22nd: So I went for my tests all on the same day. I had my mammogram done and the radiologist wouldn’t do the breast ultrasound because the NP had not ordered it. When I went for my pelvic/vaginal ultrasound and abdominal ultrasound I found out she had not ordered the abdominal ultrasound. I went round and round with the radiology tech and she even tried calling my doctor’s office to get the order fixed, but they wouldn’t let her speak to the nurse claiming they were out to lunch. We even waited a while and she tried calling them back after she had done the other 2 ultrasounds and still could not get anyone to call her back. So I had to go home with two of my tests not done because the NP who told me she was ordering them didn’t. When I got home I picked up the phone and called my doctor’s office. Told them how I had went for my tests and that 2 of the ultrasounds she ordered could not be done because the NP didn’t order them or the order had been put in wrong. And she told me she was ordering them. I waited on a call back from them. Nothing.

June 26th: I called again, left another message on the nurses line again. They finally called back and told me what the order said that they sent and they stated “it was the correct order”. I explained, again, that she had stated she wanted an abdominal ultrasound to look at “all of my orgrans, kidneys, liver, spleen,” etc. Her exact words during my appointment. I also told them, again, that the breast ultrasound was not ordered, so the radiologist would not do it. In the past, they always do an ultrasound because of the fibrocystic breasts and dense breasts which mammograms I’ve been told can miss. They tell me that NP ordered what she wanted. I tell them she said she was ordering this for this reason and it wasn’t ordered. I then get told that I could leave another message for the NP and request she call me herself. I finally heard from the NP later that afternoon. And I told her all the issues I had and that they didn’t do some of the ultrasounds she told me she was ordering because it wasn’t on the order. NP says, “Yeah, I told you that. I can order it if you want.” She then goes on to tell me my results from the tests they did do. Mammogram normal. Pelvic/vaginal ultrasound showed my left ovary is slightly enlarged, I have a uterine fibroid, cysts on my ovary, and adenomyosis. She tells me this does not explain the symptoms that I am having or the high estrogen levels. The radiologist wrote on the report that the pelvic/vaginal ultrasound needed to be repeated in 6-8 weeks. So she tells me she will go ahead and order that, as well as the other ultrasounds she had told me she would order at my appointment. Because none of the findings on the tests explains the estrogen levels, she said she would talk to my doctor and see what he wanted to do. Keep in mind this was on Friday afternoon. She told me she would be seeing the doctor on Monday with surgeries. And she would call me back to let me know what he said. Monday, Tuesday, Wednesday came no word from the NP. Thursday I called and had to leave another message. No call back. Days go by and finally I call and request to speak to the practice manager and I expressed my grievances with her about the NP and requested an appointment with my doctor. I got told I couldn’t see him because he only does surgeries now. I told the practice manager I wanted a message sent to him directly that I needed to see him BECAUSE of how seriously high my estrogen levels are and the NP is saying when levels are that high you think cancer. The NP is not addressing the problem or doing what she told me she would do and I need answers. I cannot just sit on this. So the Practice Manager tells me she will relay the message to my doctor. Within a few hours they called back and told me I could see him for a surgery consult only. OK, really??? I think to myself. Whatever… I took the appointment thinking surely if I get in with my doctor he will straighten all this out and order whatever testing I need to figure out what the problem is and why my estrogen levels are this high. So by this time it is July and they tell me he can’t see me till August. So all this time goes by since my test that showed the insanely high estrogen levels. And I worry about it of course because of how the NP went on and on about cancer when you see estrogen levels that extreme. OK, so during this period of waiting for my appointment with the OB/GYN doctor I have another follow up with my PCP in July and I tell him how my appointment went and how the NP never followed through, etc. And about the NP saying that none of those things they saw explain the high estrogen levels. So he tells me he will order the abdominal ultrasound and breast ultrasound. So I go for those. Also at this appointment I tell him about new symptoms that have become much worse in the past month. I’m having tachycardia, heart pounding out of my chest, palpitations, flushing, anxiety for no reason at all, nausea, and feeling on edge like I could just crawl out of my skin. The symptoms come in waves and I have no control over it. So my PCP says you are describing carcinoid syndrome. Great, I think. That’s never something you want to hear. And I’ve heard it before. They’ve tested me for Carcinoid multiple times in the past. So he orders the 5 HIAA 24 hour urine. I haven’t heard back from the test results yet.

to be continued…

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