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How I convinced my OBGYN that there was something wrong with meA thread for anyone who has gynecological issues and cannot seem to find a doctor willing to believe/listen to their patients.
CW: explicit talk about periods
Disclaimer: This is just what worked for ME. Unfortunately, I cannot guarantee that this will make any doctor listen to their patients, and if that is the case: I am so sorry. Please DM me for questions (might take a while to respond, but I'll do my best!)
What my issues were:
- Severe bleeding.
- Incapacitating cramps.
- Bad anemia.
Here's a thread with an overview https://twitter.com/Ishikawa_Sachi/status/1126834894787661825?s=20
- Severe bleeding.
- Incapacitating cramps.
- Bad anemia.
Here's a thread with an overview https://twitter.com/Ishikawa_Sachi/status/1126834894787661825?s=20
Something that I don't mention often is that I've always had anemia (even developed PICA as a child). I got first diagnosed in Japan, during a company health-check, and they first gave me iron supplements in pills which made me very sick to my stomach.
I got treatment for it years later (after private health insurances started rejecting my applications because I was "vulnerable"). I had weekly iron infusions for 6 months (twice a week in the last few). Then my iron levels went up and voila, I'm "cured." (Spoiler alert: I'm not)
So with these three "symptoms" and two decades of dismissals, I had pretty much resigned myself to whatever this was. I was convinced it was either endometriosis or adenomyosis, but doctors always said "nah, not possible." When I complained about bleeding, "it's normal."
The pivotal moment was when I started using the menstrual cup. I knew by then that "you don't bleed as much as you think you do," so I had fooled myself into thinking that perhaps everyone was right and I was just being "sensitive" or "dramatic."
I wasn't.
I wasn't.
A "normal" menstruating adult will bleed up to 80ml a cycle.
That's why "normal" adults should usually be able to use their menstrual cup for 12h at a time without needing to worry about spilling.
I fill a 40ml cup in TWO hours.
I cannot wait 12h, I change my cup every two.
That's why "normal" adults should usually be able to use their menstrual cup for 12h at a time without needing to worry about spilling.
I fill a 40ml cup in TWO hours.
I cannot wait 12h, I change my cup every two.
Disclaimer: It's this bad only on days 2-3, days 1 and 4 are "more normal" (as in, I can hold a cup for 6 hours), and days 5-6 I can hold it the 12.
So with this, I had factual proof about my bleeding. I could calculate an estimate of how much blood I lost every month (a LOT), and because it's an actual number, my doctor heard it clearly rather than a vague "a lot."
So POINT ONE: If you bleed a lot, give the menstrual cup a try. It's not for everyone and it has a steep learning curve, but it's worth it. And it's also great for the environment!
Yes, doctors should believe you on the "a lot" premise anyway, but sadly that's not my experience.
Yes, doctors should believe you on the "a lot" premise anyway, but sadly that's not my experience.
If you cannot manage to use the menstrual cup, I am sure that there are other ways to measure your period. It might be a bit more complicated, but it's worth it. Knowing how much I bleed monthly has been *key* to my diagnosis.
Once I got my doctor to pay attention, he immediately performed a blood test. Not shocking to anyone, my results show that I'm very anemic.
(My doctor, a very cheerful guy I honestly like a lot, even joked that the nurse freaked out when she saw my results, lol)
(My doctor, a very cheerful guy I honestly like a lot, even joked that the nurse freaked out when she saw my results, lol)
So POINT TWO: Get a blood test! Have them check your iron and ferritin levels to make sure you're not anemic. And ask them to check for your CA-125.
One of the numbers he checked was my CA-125.
"Plasma concentrations of CA125 are markedly elevated in women with cystic ovarian endometriosis and/or deeply infiltrating endometriosis." https://pubmed.ncbi.nlm.nih.gov/15726771/
"Plasma concentrations of CA125 are markedly elevated in women with cystic ovarian endometriosis and/or deeply infiltrating endometriosis." https://pubmed.ncbi.nlm.nih.gov/15726771/
And BAM! My elevated CA-125 and the ultrasound I got were enough to give me my diagnosis. Endometriosis it is.
My third diagnosis? Uterine polyps. Funny thing though is that I got diagnosed with these two years ago and my old doctor told me "it's nothing to worry about."
My third diagnosis? Uterine polyps. Funny thing though is that I got diagnosed with these two years ago and my old doctor told me "it's nothing to worry about."
So of course, I didn't worry. Silly me. Current doctor believes these polyps are causing the heavy bleeding and the anemia...
So POINT THREE: Get a hysteroscopy. And if your doctor finds polyps, address them even if they don't. And have them take a sample to biopsy for cancer.
So POINT THREE: Get a hysteroscopy. And if your doctor finds polyps, address them even if they don't. And have them take a sample to biopsy for cancer.
So these are the three keys that honestly helped me get diagnosed.
1) Knowing how much I bleed.
2) Getting the right blood test done.
3) Getting a hysteroscopy.
The anemia, the endometriosis, and the polyps - they're all linked. I even suspect I'm still missing something.
1) Knowing how much I bleed.
2) Getting the right blood test done.
3) Getting a hysteroscopy.
The anemia, the endometriosis, and the polyps - they're all linked. I even suspect I'm still missing something.
Disclaimer: I understand not everyone has access to medical care (wtf US) so these might not be viable options for all of you. In that case, I recommend starting with the measuring first, this you can do on your own with some research and patience.
And I know, I know how exhausting it is to chase after doctors who belittle you. I feel your pain. I sometimes took years in between fights because it's too much.
So take all the time you need. Others will tell you to "not give up" which is admittedly good advice, but only you know yourself and your limits, so be kind to yourself first and foremost.
If you need a break, take it. Don't apologize for it.
If you need a break, take it. Don't apologize for it.
I hope I can help someone with my own experiences. I wish someone had given me concrete advice. I hope someone who didn't know about CA-125 can ask their doctors now. That someone who didn't know what a hysteroscopy is can ask for one now.
I am happy to finally name my condition - but it came at a very steep price. I hope I can save someone the time if they know what to ask for.
Again, this is only what has worked for *me* and it might not help you... but a negative test is better than an unanswered question. /end
Again, this is only what has worked for *me* and it might not help you... but a negative test is better than an unanswered question. /end
PS. I am currently not comfortable enough to share my clinic's information... when I am sure that I have received the care I needed and the treatment I deserve, I will let you all know. For now, please don't ask yet. Thank you!
