We Need To Talk About Female Healthcare: A Story of Advocating for Myself
Warning: This gets a bit gory.
Before April of 2018, I had never had anything big medically happen to me. I’d never had my blood drawn, I’d never broken a bone. Nothing. The worst things that affected me were anxiety kidney stones and migraines. I’d never had an abnormal pap. I felt pretty good in general.
Then I started bleeding.
I bled for 4 weeks at an alarming rate. I saw my regular doctor who took blood (which I passed out immediately from), did a hormone panel and a pap then sent me to a technician to get an ultrasound. The technician did the ultrasound and said everything looked fine and sent me home. On the way home I started feeling sick. Once home I started puking, horrible nausea overtaking me. I told my husband I was not okay regardless of what the doctors had said and he drove me to the ER.
At the ER they took my blood count, tried to get me to stop puking with pills that I would throw up immediately and asked me repeatedly what was going on. After 30 mins, they too were ready to send me home. One of them saw the listing look my face had taken on (I was barely conscious at this point) took my vitals one more time, then admitted me to the hospital because I needed blood transfusions. Multiple. And immediately.
It’s unfortunate that it had gotten where it did and it’s scarier to look back and think about it because by the time I had gotten to the hospital, I knew something was wrong but I didn’t care anymore. I was so far out of it that I couldn’t advocate for myself and if they would have sent me home I would have gone. I wasn’t able to physically keep asking for help. And that’s terrifying.
After the transfusions, being released and resting, I started looking for answers. What I found was disinterest and lack of urgency. Getting into a gynecologist who specialized in pain was weeks, if not months, away with the provider I used. I went outside of them and looked for others even though they wouldn’t have immediate access to my records. I met with whoever I could get an appointment with. Each gave me a pregnancy test, each gave me a pap and each told me nothing was wrong. My hormones were fine. My insides looked fine. The bleeding must have been a fluke. Just continue to use birth control and it shouldn’t be a problem.
Flash forward a year and a half later. I’ve been bleeding for 5 weeks straight. At 2 weeks I panicked. It couldn’t be happening again. I made an immediate appointment with my doctor. This time she sent in an emergency referral to a specialist and prescribed hormones to try and stop the bleeding. She said I would need to talk to a specialist but that I should be prepared for a hysterectomy. There wouldn’t be many other options regardless of the reason. So I made an appointment, which even with an emergency referral was 3 weeks out, and waited.
During my wait I changed prescriptions twice because the hormones were not working to stop the bleeding. Thankfully, it was slower and I started taking iron early. I didn’t feel the same loss of consciousness that I did the first time around that made me go to the ER. I’ve just been tired, in pain and feeling out of control with my emotions from the medications.
For the three weeks I waited to see someone I did a bit of research. Now I’d like to say that I’m typically not a fan of Googling medical symptoms. I’m not a doctor and so many things have so many symptoms in common that without understanding and education there’s no way to really know. You have to see a doctor. The reason why this time was different was because I had already done this and been told I was okay, when clearly I was and am not. Something is wrong. I wanted to arm myself with some knowledge of what I should be asking of my doctor. What should I know or want to know when I go in there and she gives me a pap and says everything looks fine? What do I need to suggest or demand depending on how the conversation goes to ensure I get treatment? I needed to arm myself with something to make sure this never happened again.
What I found shocked me.
If you type in “heavy” into Google almost every question that follows is about female bleeding. Heavy bleeding, which is called Menorrhagia, is one of the most common issues women have affecting 1 in 5 of us according to the CDC ( https://www.cdc.gov/ncbddd/blooddisorders/women/menorrhagia.html).
1 in 5.
That seems like a very large population of people. From that number I would assume there’s a vast knowledge and research done on this specific issue. Wouldn’t you?
Although I will openly admit that I do not have the scientific facts on this, meaning I do not know the numbers or the research that is being done, I do know the stories I’ve heard and read. Countless women have gone through exactly what I have. Some bleeding for months or years before being able to advocate for treatment. Often, from what I’ve been told, they’ve been dismissed like I was. Told that it was okay. That nothing was wrong. But they knew. Just like I did.
I’m a firm believer in knowing your body. You live with yourself day in and day out. You know what’s normal. You inherently know when something is wrong. If you listen to that you’ll usually find an answer. In this case though I think the answer comes at too high a cost in time.
When I finally got in to see the specialist we talked about my concerns. She ended up doing a biopsy and said if it wasn’t cancer, pre-cancer or infection it was probably PCOS.
I have a problem with that line of thinking. I don’t agree with exclusionary diagnosis — meaning the doctors have tested for other things, found nothing so they’ve created another category. If it isn’t one of the things they can find you’re diagnosed by exclusion. That is what PCOS is.
DISCLAIMER: This isn’t to say that I don’t think people who are diagnosed with PCOS are not struggling and are not sick. There’s absolutely something wrong. I also do not argue that some who get diagnosed receive treatment they otherwise wouldn’t have. I, personally, just have an issue with doctors not knowing an issue and using an “easy” exclusionary diagnosis instead of searching for answers.
This is what I feel has happened. That my case is too difficult and the people I’ve seen don’t understand it. She wrote down my concerns about not believing in the diagnosis in my notes. She wanted to mark that she had tried to give an answer that I didn’t accept. And I still don’t. I have no other symptoms of PCOS. No acne (have never had it), no hair loss (I have TONS of hair), no issue with progesterone, no polyps, fibroids, and as far as I know no endometriosis.
We got the biopsy back.
No cancer. No pre-cancer. No infection. Just lots and lots and lots of bleeding. So I asked my doctor what was next. She said basically that they’ve done all they can and that it’s probably just because I’ve been on birth control too long. Then she recommended a partial hysterectomy. I asked about other parts of my body, my liver & kidney (which I was told could be a reason for bleeding), anything outside the uterus, and what about trying an MRI. She said she wasn’t worried about any of it. I’ve asked again what her recommendation is for next steps then so I can talk them through with a second opinion. She hasn’t responded back in days.
As of today, 8 weeks later, I’m still bleeding — although to be fair not at alarming rates. I’ve been worrying myself trying to figure out what to do, who to talk to, who to see. My husband and I have had many conversations about next steps and he said something that I think is hard, but important to hear. He told me not to chase ghosts. Make a plan, follow through, and once I’ve done it and if there are still not answers don’t live in the constant search to find something wrong. When I thought about it, my biggest issue is if it’s cancer in a different area of my body and it goes untreated because I didn’t heed the signs early enough.
I believe the body tells us when something is wrong. That’s why I don’t want to treat a symptom, I want to fix the cause. So, my plan moving forward is to schedule a partial hysterectomy. This will stop the bleeding, which for both my health and quality of life I desperately need. I cannot continue to take hormones and be inactive, tired, stressed and anemic for much longer. So I’ll treat the symptom. This decision is easier for me than other women my age because I do not and have never wanted children. My husband and I have been together 10 years and have never wavered or disagreed on this. So while it is a major surgery it will have less long term impact on me than continuing to bleed will.
Once my surgery and rest is scheduled I will seek out another opinion and get an MRI to ensure other parts of my body are not suffering and that was what was causing the bleeding. If all goes well and nothing is found, I will chalk it up to an experience, record what’s happened and move on with my life in the healthiest, happiest way I can.
I wanted to write this article to let others who may be experiencing this that they are not alone. While I don’t have all the answers, I have my experience and my belief to share of what’s happening. And regardless of if you go through this, or some other medical issue, I want to tell you that it’s OKAY to advocate for yourself. It’s okay to ask questions. You should be getting second, third, fourth opinions.
We should be pushing for more answers, especially when it comes to feminine healthcare which is so far behind the times given the stigma it has held for so long. There should be more research, treatment options and conversations when massive bleeding occurs. I was absolutely shocked when I put out a post on a forum I’m apart of by how many women have gone through something similar and still have not received help or answers.
It’s your body and if something is wrong you are going to know. You’re not a hypochondriac for seeking help when you need it. You are not crazy. Don’t suffer in silence because someone told you that you’re wrong about your body. Make a plan, follow it, try to find answers and solutions that make sense for you and then live your life as well as you possibly can.
Here’s a few resources, stories and references I’ve found:
https://www.hystersisters.com/ — This is a great website for women who are talking about hysterectomies. It gives a lot of support and advice to anyone in need.
https://amzn.to/2PYeznV — Link to “Brain on Fire” by Susannah Cahalan. She talks about a medical issue she had where doctors wanted to write it off as something else because they couldn’t explain it and her family and friends fought for answers.
https://www.cdc.gov/ncbddd/blooddisorders/women/menorrhagia.html — Here’s the CDC link to information about menorrhagia.
