Last Tuesday I had an appointment with my gynecologist to go over my test results and determine next steps.
I was equally unimpressed with the receptionist (same one as the first appointment), but I had a new nurse who was much nicer. I wasn't as impressed with the doctor this time, but my opinion was probably colored by having to wait 90 minutes past my scheduled appointment to see the doctor. Though I will say that the 90 minute wait probably made me a little less willing to be nice/friendly/agreeable, which helped me to advocate for myself during the appointment.
As it turns out, all of my test results were indeed normal (as indicated on the form letter with checked boxes), including the "best" FSH I've ever had, though as a friend reminded me, your worst set of test results tend to be the most accurate predictor of fertility. I ended up getting the results in advance of my appointment (thanks for the tip to get them directly from the lab, Obie!), so it sort of helped me frame how to think about the appointment.
There was nothing to even remotely explain the hot flashes. She even threw out the idea that maybe they were psychosomatic and suggested that I take Prozac (an SSRI), which would also help with the wicked PMS/PMDD. I don't have any issues with psychiatric medications and I think they are a wonderful tool for people who need them, and I know that there have been studies done to show the effectiveness of SSRIs in treating hot flashes, I just felt like she was implying that they are all in my head. I swear to god that they aren't in my head.
There was no more conversation about my longer than average periods. Honestly this is my lowest level concern because I've had 8-10 day periods for most of my life, and now is no different. The part that is surprising to everybody but me is that I have 8-10 day periods in spite of the IUD. And the fact that they are so much lighter compared to pre-IUD periods, I can definitely live with them!
So next came the conversation about the pain. The pain is hard to describe. Sometimes it's like stabby pain right in the middle of my uterus. Sometimes it's more like period cramps (when not on my period). Sometimes it feels like my uterus is trying to expel itself from my body. Sometimes it's more like a million pin pricks all over my abdomen. Sometimes it's like a lightening bolt struck me in the cervix. These pains occur randomly throughout my cycle, but always during my period or in the days leading up to it. Those are the pain symptoms that come and go. The pain symptom that is constant is in the vicinity of my right ovary. It's not a cyst or anything else that can be seen on ultrasound or felt during an exam, but the pain is constant and has been for almost three years. The intensity of the pain varies, but it's always there. There is always some sort of pain somewhere. I have long suspected endometriosis is the culprit. No doctor has ever really listened when I described this pain. I don't know that this doctor believed me either, but at least she's willing to investigate.
I have a diagnostic laparoscopy scheduled for November. If any endometriosis is found, it will be removed to the greatest extent possible. I don't really have time to recover from something that is technically considered surgery, but my need for answers outweighs any inconvenience at this point. Once the blood tests and ultrasound came back normal, I think she was keen to let me walk away without further investigation just like so many doctors throughout the course of my life. I had to push harder for the laparoscopy then I should have needed to, but in the end I got what I wanted, and in November I will hopefully have answers. I've literally had it with the pain and I've had it with not being taken seriously. For the first time in my life I'm actually thankful that I had a long wait in the waiting room because I think this put me in a little bit of a bad mood and gave me the courage to stand up for myself.
Oddly enough, I stumbled across this article on doctors not taking women's pain seriously and shared it on my Facebook news feed. Of the people that commented on the article, three people experienced at least one ectopic pregnancy, one had a miscarriage, one had a large non-cancerous ovarian tumor, and one had a brain tumor removed after 18 months of having debilitating migraines and no one bothering to do a scan (and once they found the tumor, she was having brain surgery in less than 48 hours). So I guess whether it's acute pain or chronic pain, women's pain isn't taken seriously.
In my adult life I've been through 4 different insurance plans due to being on my moms plan, then switching jobs a few times etc. So over 10 years of trying to get a diagnosis for autoimmune condition, I can say that it does seem it is easier to get the tests you need if your insurance plan pays out to the doctors on time and without much discussion. The more explanations and paperwork insurance wants, the less likely the doctors office is going to recommend it.
ReplyDeleteI realize this because I currently have amazing insurance, the doctors get paid within 5 days of putting in the claim. I can get tests for pretty much anything I ask for. I go to a primary for cholesterol, and we throw in all the autoimmune stuff too. Ovary on fire? Lets scan the shit out of that, even though we do it once a year and nothing comes up! Still on fire? Lets go have an MRI even though we JUST HAD ONE for our gall bladder. Never too much radiation on the Empire Plan.
I joke, but when I had crappier insurance I could be covered in hives telling a doctor I had these hives every day for 5 years/7 years/9years and they would tell me I probably just used the wrong soap. It is really messed up.
That all being said, if you have any history of autoimmune conditions in your family, check up on it, Hot flashes can be a sign of quite a few things, in fact if I wake up late or forget my pills, the hot flash is my reminder.
My coworker just had diagnostic Laparoscopy in the beginning of September. She only planned a few days off but ended up taking a few extra, not because of the pain or anything like that, but because she wasn't supposed to take a shower and realized she didn't want to come to work dirty. Hopefully you get some answers there.
Sorry for my little insurance rant there. Reading about people not being taken seriously and having to spend so much time and energy feeling shitty makes me so mad and takes me back. I know it's also sometimes just that the doctors want the softball patients, and that is a different problem all together. I know alot of people have such a hard time getting Endometriosis treatment, but it is so common when you talk to people, and yet, doctors don't even like saying the word.
Rant away, sista! I completely agree with you that the quality of care you receive is often determined by the quality of your health insurance. I'm quite fortunate to have pretty good insurance, but finding a doctor who is willing to take a few minutes and listen, is the issue. Like I said to a friend on the phone last night, "I'm asking for a procedure to potentially diagnose a condition that I've had symptoms of for 20+ years, not an open ended prescription for pain pills."
DeleteFor the lap, I'm having it done on Monday (time TBD) and I'm off for the rest of the week. Hopefully that will be enough time...I have a high tolerance for pain and I tend to recover pretty quickly.
Do you mind if I ask what autoimmune condition you have that causes hot flashes? I have a loooooooong and well established family history of autoimmunes but I've never been diagnosed with any (yet). My thyroid has always tested normal and my SED rate and Rheumatoid factor were both normal as well.
The hot flashes come with the hives, but because of my medication the hives don't always form. It's pretty intense. I have Mast Cell Disorder, which is a really broad term but it's a good thing because having a more specific diagnosis would most likely mean having more serious symptoms. My family history is Lupus and Sjogrens, but one of my sisters has what I have. Of all my family members with these diseases, none of our labs really match up. Everything you mention, I always had normal results, plus at least a dozen other things. I only know what i have because I googled the antihistamine cocktail I was taking, found a doctor who had done research at a university near my job on them, and made an appointment.
DeleteTalking to the doctor who was really invested in my case was great after years of feeling like I had to sell doctors on the fact that I was sick, but after confirmation that I was sick, I did start to feel a little like a lab rat. I suspect this is why fertility treatments turned me off right away.
Glad you're getting the investigation you need and want, and I'm proud of you for advocating for yourself, though sorry you had to fight for it. That article is outrageous but sadly not surprising. Sigh.
ReplyDeleteThanks, Mali! It's so unfortunate that we are often placed in a position where we have to advocate for ourselves.
DeleteI agree that the article was outrageous, and I think that the experience the author wrote about is far from uncommon. Even when comparing mine and hubs' experiences, his are so much different than mine. He went to the ER with kidney stones and had an IV drip of pain medication within 20 minutes of walking through the door, within 90 minutes he had a scan to confirm the size and location of the stones, and within three hours we were walking out the door with instructions for passing the stones and a bunch of pain medication. Whereas I went to the urgent care with bronchitis and had to beg for a simple breathing treatment.
Why is it so hard for endometriosis to be taken seriously? Especially on a preventative care level. Argh. Could go on, but already lost one comment.
ReplyDeleteEchoing Mali about being glad you pushed for this. Though I do hope that it means a fast recovery all around.
I really don't know. Maybe because it's a women's disease? Maybe because the symptoms are so non-specific, vary widely, and don't necessarily correlate to the severity of the disease? Maybe it's because women don't speak up? Maybe it's because doctors won't listen when they do? Maybe it's because it can't be diagnosed in any other way but a procedure that's technically considered surgery? Maybe it's because insurers are hesitant to pay for an expensive diagnostic procedure? Maybe it's some combination of the above?
DeleteAt this point I just want answers. I hope I get some.
I'm so sorry you had to push in order to get the investigation that only seems appropriate, given your symptoms.
ReplyDeleteA lot of times I have been thinking that there would be so much more research and understanding around endometriosis if it happened to men instead of women. Why should it be okay and "normal" for a woman to suffer every month?
Like Cristy, I hope it will all go well and that you will recover quickly.
I guarantee that there would be research, understanding, and treatment if this were a men's condition. Just look at how many prescription medications (covered by insurance) there are on the market to treat male sexual dysfunction compared to how many there are for women (one, I believe, and it just hit the market this year).
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