Navigating Canadian Healthcare, Difficulty Level: Period Problems

April 29, 2022 9:51 PM

YANMD, but I’m looking for insights on how to actually get some concrete symptom management, and what to ask for from my doctor to help with my increasingly painful period problems. Tmi snowflakes below.

So, I need some help. Over the last 4 years I’ve had tons of issues with my period. They started when I originally lost my period due to a severe eating disorder ( it was gone for almost two years), and as I have gone through recovery/gotten to a higher weight, it simply never came back properly. Even on the pill, I will have 3 1/2 week long periods, then a week off, then more bleeding. It’s been this way 2 years. I often have severe cramping, abnormal blood/discharge, and I’ve passed several horrifying menstrual casts (only google this if you have a strong stomach, I genuinely thought my uterus had fallen out lol). The pill was the only option I was ever given for managing my periods, and even when I was lucky enough to see an endocrinologist, she literally dropped me after one visit and she told me “you’re not trying to conceive anyways, so I don’t know why you care about your periods so much”. I never told her anything to indicate I didn’t want kids or didn’t care about fertility (in fact I’d like to have kids via IVF/IUI in the future), but I had told the referring doctor that I was a lesbian who is partnered with another biosex/cis female… so I’m becoming fairly sure my homosexuality is marked on my chart and that’s why the endo had been so rude to me (she also had religious scriptures on her office walls, so it feels pretty clear).

So, I need to find a way to get help for my periods while facing the fact that some doctors are going to dismiss my needs, as they aren’t fertility centred. I live in a fairly diverse city, but even so, it leans religious/right wing, so outright homophobia is a real concern. I’m also an average sized 24 year old person who appears to be fine outwardly, which might have an effect on how I’m being perceived.

What info I do have regarding my problem is as follows:
- Elevated androgens, prolactin, and lipids/cholesterol
-Low estrogen, borderline low T4, and low-normal total blood count and iron (though I am supplementing iron)
- Family history of uterine cancer and PCOS
-Ultrasounds show no cysts on ovaries
-high fasting blood sugar
-No improvement of symptoms when testing out progesterone-only pills

I’ve never had a Pap smear (I’ve not had multiple partners, and I have a septate hymen, so it wasn’t deemed worth the invasiveness), but I’ve had ultrasounds.

With this in mind, what should I be asking for from my family doctor? He does seem to listen when I ask for specific things, so I’m looking for what readily available diagnostics might be prudent to ask for? What kind of dialogue would be most likely to get my issues heard (aside from not mentioning the gay thing, obviously)?

For those not in the North please keep in mind:
- I can’t get my full medical records given to me
-Things like CTs and MRIs almost never happen due to the sheer backlog of patients in my province
-I can’t shop around for doctors or specialists, so will need to make do with whomever I get

Additionally, if you’ve had similar symptoms to me and got them under control, what treatment worked for you? Did you feel you got a diagnosis that fit properly? YANMD, but I’d like the insight all the same?

posted by Pemberly to Health & Fitness (14 answers total)

I too have PCOS and many of the same metabolic markers. I bled for five months straight once in my early 20s, it was a terrible time and I'm sorry you know this pain too! Nobody took me seriously for ages. I tried birth control and progesterone to manage my long, heavy, erratic periods but the side effects were worse than the cure, and also there was no cure.

What eventually worked was a combination of supplements and lifestyle changes:
+ chasteberry (vitex agnus-castus)
+ seed cycling
+ iron infusions
+ better sleep and less stress (to aid immune system and reduce cortisol)
+ daily movement (to help blood sugar)
+ food choices (to help blood sugar and cholesterol— less carbs, more protein, more whole fresh foods)

I realize food and movement may bring up complicated feels, so if you decide to make shifts on those fronts I hope you have good support. They were key in stabilizing my cycles, however, so I thought I'd mention them. If you like you can DM me for the exact changes I made.

As for being queer in medical contexts, ugh! That sucks, I've been there. I suggest lying furiously to get what you need. (Ahem, are you thinking about getting pregnant in the next few years and are just soooo worried about your heterosexual fertility? Perhaps!) But also: keep a symptom tracker with clear dates and graphics, so you can do things like point to a calendar and say "See all these red squares? I've bled 138 of the last 180 days. I lost 200 ml of blood during my last period and I've missed nine days of work so far because I was bleeding too much to leave the house." Word the impact on your life STRONGLY, make them empathize with you.

Try this tip if a doctor won't run a test or send you to a specialist you need.
posted by lloquat at 10:48 PM on April 29, 2022

Best answer: You can have PCOS without actually having ovarian cysts. It could also be due to the low T4. (Is your TSH high or borderline high?) Would your GP try you on metformin and/or screen you again for thyroid issues?
posted by Violet Hour at 10:54 PM on April 29, 2022

Best answer: Ask for TSH and don't look at the norms, they're for men. You should be under 2.

It took me more than a decade to have similar symptoms firmly seen to - PCOS and adenomyosis, it turns out - but combo of metformin, synthroid and Qlaira has them under control. A few years back, Qlaira was the only birth control registered for heavy periods, there might be more now, but it's worth trying - it's fairly complex (5 kinds of pills mimicking a natural cycle) and I've had no side effects other than the ones that came from lowering my testosterone.
posted by I claim sanctuary at 11:29 PM on April 29, 2022 [2 favorites]

Best answer: I would suggest doing some research on PCOS - it is a disease that impacts so many parts of your body, not just the reproductive system. Johns Hopkins Medicine says "Women with PCOS are more likely to develop certain serious health problems. These include type 2 diabetes, high blood pressure, problems with the heart and blood vessels, and uterine cancer. " and this article suggest that all women with PCOS should be treated for insulin resistance to avoid the complications associated with diabetes.

You have many of the symptoms in addition to your horrible menstrual cycles - I can't advise on how to get a proper diagnosis and treatment but it worth pushing to find it if in fact this is causing your problem.
posted by metahawk at 11:35 PM on April 29, 2022 [2 favorites]

Best answer: How high is your prolactin? It needs a repeat test. Multiple repeat tests, even if prolactin is only slightly high, can indicate that you have a prolactinoma, that is a BENIGN cyst on the pituitary (which is extremely treatable with medication). A prolactinoma can affect estrogen and other hormones and mess with your period. After 2-3 tests showing high prolactin, it’s important to do an MRI to see if there’s a prolactinoma. Alternative causes of high prolactin include Cushing’s syndrome (which would need cortisol tests), certain psychiatric medications, and even nipple or chest stimulation (by eg a bra or chest infection). So I would ask for another prolactin test.

After that I’d ask for a referral to another endocrinologist in another city (eg Toronto). You wouldn’t even need to travel (all my endo appointments happen over the phone) except for an MRI, if needed.

>I can’t get my full medical records given to me

Have you already made a written request for your files from the health records department at the hospital?
posted by cotton dress sock at 2:14 AM on April 30, 2022 [1 favorite]

-I can’t shop around for doctors or specialists, so will need to make do with whomever I get

I can't speak to the rest but you can ask your doctor for a referral to a different specialist than you had before. They don't have to send you to anyone specific but usually just send everyone to the same specialist in each category because it's easier for them. You can even come with a suggestion of who you would like to be referred to, if you do some research on where is good with what you are suffering from. Once you get some ideas from here, I would do some research on other people in your area suffering from that or else check in with local or provincial LGBTQ+ health organizations for suggestions of queer-friendly specialists.
posted by urbanlenny at 3:14 AM on April 30, 2022 [2 favorites]

PCOS is also associated with elevated prolactin. PCOS is very common and a prolactinoma is very rare, so please keep that in mind when assessing these responses.

PCOS is the worst named syndrome on the planet because the cysts have very little to do with the nature of the disorder and its effects. From what you have described, you appear to meet diagnostic criteria for PCOS without any further tests being indicated. Management of PCOS can be conceptualised as looking after the metabolic issues (ie blood sugars and cholesterol) as well as the cycle irregularity issues (can use hormones in varying regimes for this). Some metabolic management strategies will help regulate cycles - metformin often does the trick if you don’t want to try progestins again for now. While I’m a filthy doctor and prescribing is what I do, the old “diet and exercise” may benefit.

I would go back to your doctor and ask
“don’t I have PCOS?”
and
“how can I manage PCOS?”

Australian site, but my favourite recommended patient resource
posted by chiquitita at 3:19 AM on April 30, 2022 [1 favorite]

Best answer: I would strongly recommend you ask to be referred or checked for endometriosis, as there have been studies suggesting people with PCOS are more likely to have endometriosis as well, which may require slightly different management or may (hopefully) increase the seriousness with which people take your symptoms. It might also explain why the pill didn't help much.
posted by fight or flight at 6:16 AM on April 30, 2022 [2 favorites]

I had pretty good luck controlling with a mirena IUD. The steady hormones were perfect. I also had a number of casts and it is seriously horrifying and painful and you deserve help.
posted by Bottlecap at 7:01 AM on April 30, 2022

I am so, so sorry you’ve been going through all this. I am furious on your behalf. My mother had murder periods through high school - she had an ovarian cyst, but her doctor never thought to investigate her heavy flows and pain, just prescribed iron for her anemia and ibuprofen for cramps. One of my dear friends went through ten years of awful periods, and only finally got diagnosed with endometriosis three years ago - another also had cysts removed only after years of suffering and no concern from her doctors. I hope your doctor listens and supports you to get the care you need.
posted by rrrrrrrrrt at 8:28 AM on April 30, 2022 [1 favorite]

I’m furious for you. Here are some steps I would see if you can take.

1. Get in touch with any local queer-focused health organization or any clinic geared towards marginalized communities (in Ontario there’s a rainbow health lookup.) get a referral from them for a queer-friendly clinic (or PCP if you can score one)

2. At that clinic the magic words are “this is causing me really serious quality of life issues.”

3. Then follow the great advice above!
posted by warriorqueen at 10:31 AM on April 30, 2022 [1 favorite]

Best answer: I am also sad and furious on your behalf. I was also misdiagnosed with many things (including PCOS) before finally discovering I had endometriosis.

I don’t know much about the Canadian healthcare system but I do know a lot about doctors and queerphobia, so my advice to you is this. Whether it is true or not, with any specialist you see I would lead with, “I want to try for a baby in a few years but my period is a massive problem, and I need to get it under control. What can we do?” Unfortunately, as a rule doctors care much, much more about our fertility than they do about our quality of life—often, focusing them on a child that doesn’t even exist yet will get you better care than asking them to care about you, a full human being who is currently alive and in their office.

I’m sorry to even say this, because it’s misogynist in the extreme and I hate having to lie about myself to get basic fucking medical care, but this was literally the only strategy for accessing care that has ever worked for me. I couldn’t get anyone to take my pain seriously for a decade, but as soon as I saw a surgeon at a fertility center I got competent care and treatment in a matter of weeks.
posted by CtrlAltDelete at 2:53 PM on April 30, 2022 [4 favorites]

PCOS is more likely, so’s endometriosis, but prolactinomas aren’t that rare. It’s nothing for them to tick the box that tests it, anyway.

I wanted to share a question I asked that may help. Best of luck!

https://ask.metafilter.com/356332/Talking-to-doctors
posted by cotton dress sock at 8:06 PM on April 30, 2022 [1 favorite]

I’m furious for you too, this is unacceptable. But, given the givens, I would try to “game” the system.

Would you be willing to tell the doctors that you want to become pregnant in the near future? It even happens to be true, you would like to eventually carry children, and implying that ideally you’d want it to happen sooner rather than later might work to your advantage.

It’s insulting and appalling that you’d even have to play this game but it might get you results if you can’t shop around for a good doctor.
posted by lydhre at 9:51 AM on May 1, 2022 [1 favorite]