Talk me off the ledge, weird spotting edition

September 26, 2017 6:40 AM

I've been spotting in the middle of my cycle and it's freaking me out. I have an appointment with a new gynecologist on Thursday, help me help myself so I can ask the right questions.

I'm 32, two children (the youngest is 18 months old), no chance I could be pregnant, no hormonal birth control. I saw my old OB in June, had a negative pap test, was told to "keep an eye on it". Well, I've kept an eye on it and I've had pelvic pain on and off (more on than off), shorter cycles (25-26 days rather than my usual 28-30), spotting around ovulation, spotting two days before my period starts, heavier periods. When I called back to inform them that the spotting keeps happening, the nurse asked me if I was having trouble conceiving and, when I answered that I had no intention of trying to conceive, essentially told me "periods get weird in your 30s" and the OB never even called me back.

I do not know half my medical history, I have zero information about the woman who gave birth to me. I am under a reasonable amount of stress (mostly from my my period being strange, honestly) and I have been having trouble sleeping well since I had kids (not the kids' fault, they sleep great, it's been a physiological problem since I got pregnant the first time). My hormone levels are fine, allegedly, but I never got a copy of the results. My thyroid is fine, also allegedly. All the women on my father's side of the family have thyroid issues and various autoimmune conditions, including rheumatoid arthritis.

So, given that everything I read on the internet tells me that it could be normal or it could be a symptom of many scary things, I made an appointment with a new gynecologist to try to get some answers. I will accept "we don't know why your period is getting weird but I have ruled out gynecological cancers" as an answer. How do I ask for that without seeming paranoid? (I am a little paranoid).

I know from previous experience that the moment I mention anxiety and stress is the moment doctors stop listening to me. Help me advocate for myself so I can get some peace of mind, please.

posted by lydhre to Health & Fitness (8 answers total)

"I'd like to rule out the possibility that this is cancer. I have an unknown family history and thus don't know whether I'm at high risk."

And try to be a little bit willing to believe what you're told. There's"advocating for yourself," and then there's "suspecting that medical staff are lying to you about your blood test results. " Why would they do that?
posted by Perodicticus potto at 6:56 AM on September 26, 2017 [12 favorites]

Routine tests that are done for abnormal uterine bleeding include endometrial biopsy and pelvic ultrasound. If your new gyn doesn't suggest these, I would ask about them.
posted by i_am_a_fiesta at 7:03 AM on September 26, 2017 [3 favorites]

You've had a pap smear? I kind of hate to say this, but periods *do* get weird in your thirties. I had spotting at all the points you mention starting around age 32. At least as you describe it, it doesn't sound unusual, though I understand wanting more peace of mind.

I think Perodicticus potto has a good suggestion for the script. However, I would also define for yourself what you consider "good enough" as a test. You can't really rule out anything in the way you describe, and I'm not sure that they won't just do another pap smear. What would you think is an acceptable response?
posted by frumiousb at 7:07 AM on September 26, 2017 [3 favorites]

Best answer: Hi there. I've had the same symptoms as you in different combinations over time, and I'm a similar age. During several "flaring" incidents, I've had the following tests:
Pap
Ultrasound
Pelvic ultrasound
CT scan
Battery of blood tests with a blood specialist
Consultation with a gastroenterologist

My keywords to use with the doctors were "unusual for me," "upsetting," "concerning,"
"painful (with a pain scale number)," and "disruptive to my daily life and work."

I was initially ignored when I described my symptoms but said I wasn't trying to conceive. That's when I busted out the keywords.

I didn't have cancer, btw, but a blob of cysts on an ovary and at one point some cervical polyp thing. I also suspect maybe some endometriosis. You might have all of the above or none of the above. But I'd start with those key words and see how far that gets you.

Best of luck and keep us updated.
posted by Temeraria at 7:10 AM on September 26, 2017 [7 favorites]

Response by poster: To head it off at the pass: I don't suspect that medical staff is lying to me, obviously, but I have concerns about borderline results. My cousins were symptomatic in the "normal" range for years before finally getting hyperthyroid diagnoses.

If I still lived in Italy one of the standard tests for abnormal bleeding would be a hysteroscopy but my OB seemed to think it was unnecessary pending the "let's keep an eye on it". Two of my husband's aunts have been diagnosed with endometrial cancer in the last six months after abnormal bleeding, which obviously has no incidence on whether I have anything of the sort but it does sit in the back of my mind.
posted by lydhre at 7:25 AM on September 26, 2017 [2 favorites]

Before your appointment date, go into the new office and sign the records release paperwork. That way the new doc gets the test results prior to your appointment. Alternately, you can go into the old doc and request your medical record (be prepared to pay a 'reasonable and customary' fee, usually somewhere around $1 /page for the first X pages and .10¢ a page thereafter). Personally, I would get the records myself so as to have a copy AND so I could deliver JUST the results and NOT the previous doctor's commentary. Best of luck.
posted by PorcineWithMe at 7:27 AM on September 26, 2017

Best answer: All good answers above.

My hormone levels are fine, allegedly, but I never got a copy of the results. My thyroid is fine, also allegedly

The first thing I would do is call all of your doctors and get copies of your full chart. Get copies from the hospital too. Nothing wrong with having copies of your own medical records on hand. Have a read through them and familiarize yourself with your test results. Likely you will find that your test results were indeed in the normal range.

Now, having been an IVF patient my default position is that just because my levels are in the normal statistical range that doesn't mean that they are normal for me. I was TTC at the time obviously so I followed up with a doctor in that specialty but you could follow up with an endocrinologist if you decide you want a second opinion.

First though, take a hard look at what you are eating and what you are taking. I started to take a medication about a year ago (coincidentally my 2nd baby was also about 18mos at the time) that was causing me to spot. I talked to my doctor about it and we switched to something else, and no more spotting. Point being, you never know exactly how some substance or even food is going to affect your endocrine system, even if the data suggests that it shouldn't affect you adversely.

In my years of experience with TTC I have figured out that most doctors really are generalists, even in their specialty. I was shocked for instance by how little my OB knew about TTC as compared to my Reproductive Endocrinologist. I've had a similar situation with my GP vs the awesome ENT that I finally got a referral to, after months of GP not being able to solve my issue. Based on those experiences, now I always recommend people to cut out the middle man and go straight to the specialist. Again, ime, it just saves time.
posted by vignettist at 7:48 AM on September 26, 2017 [3 favorites]

I began spotting between my periods before I basically began bleeding nonstop. My lab results were fine, but a pelvic ultrasound revealed some pretty serious cysts on both ovaries and uterine fibroids. I was diagnosed with PCOS, and I've been treating it ever since. So yeah, get that ultrasound.
posted by Young Kullervo at 9:47 AM on September 26, 2017