You may not want to hear about the state of my uterus. Fair enough. Come back tomorrow and there will be nary a fallopian tube or cervix in discussion.

But today I’m going to share details about my uterus because, as long-time readers know, my uterus has not always been particularly kind to me. Menstrual and reproductive health can be a very isolating topic and it pervades so much of a woman’s existence.

By speaking publically about my experience I hope that someone – somewhere – won’t feel quite so alone in their related struggles.

I am almost exactly one year out from my endometrial ablation and I have zero regrets about the choice. Given my history, it’s not surprising that I still tend to bleed for the majority of my menses (5-7 days), but it is a fraction of the blood loss I experienced prior to my ablation. It’s anyone’s guess how long these interventions will help. The life cycle tends to be anywhere from 2-10 years. I know women who have had ablations and ended up needing hysterectomies within a few years.

My blood flow has lessened month over month and I am now, almost without exception, able to manage blood loss using only a Diva Cup. It’s unlikely this will continue through to menopause at which case I have a few options:

• Get a second ablation. Not ideal because of all the scar tissue from my C-sections but the form of ablation I had can be repeated.
• Get another IUD or go on contraceptive pills. Not ideal given my history and I doubt I would even consider it.
• Grin and bear the situation. This will depend on how heavy my flow may become and where I am in terms of progression into perimenopause/menopause.
• Get a hysterectomy. Still very much on the table but not now and that’s something to consider in the future.

I am not a healthcare professional and I am certainly not offering any specific advice, but I hope that anyone reading here today and struggling with menstrual health will feel a little less alone and will feel empowered to seek help.

I’m including my post-surgery summary of my ablation experience (posted last February on my old blog) and the road that led me to surgery. It’s long and I’m only including it here as a reference for those who might be facing similar circumstances.

Hugs to anyone struggling today – may you find relief and healing.

February 2023

I had an ablation last week and I’m here to talk about how I got to this point. I’m going to share quasi-graphic details regarding my menstrual history so if this is not your cup of tea (fair enough!), come back tomorrow for different fare.

I felt compelled to write this post because, for over 20 years, I’ve been struggling with an issue that impacts so many parts of my day-to-day life and I was always looking for – but rarely finding – real details from real people (not generalized statistics on the side of a tampon box or a case study profile from a doctor).

So, with the hope that this may be of some value to someone (someday), here is my story.

EARLY PERIODS

My periods were heavy from Day One. I wasn’t surprised or upset (I had older sisters and knew what to expect) but, looking back, I can’t believe I dealt with such difficult periods solo.

I had a lot of issues with “leaking” when I was a teenager. Despite using Super Plus/Ultra Flow tampons + overnight pads, I would still leak through almost every night of heavy flow. I eventually started cutting the bottoms out of black garbage bags and would sleep inside these makeshift plastic sacks. Current Me wants to go back and hug Teenager Me. I would wake up drenched in sweat and the whole experience was truly awful, but I hated the thought of leaking through onto my bed and it seemed like a necessary – and bearable – evil. I also always, always slept on top of a giant towel.

I eventually ditched the garbage bag habit (thank goodness), but continued sleeping on top of a thick towel well into my 20s. Eventually, my body learned to compensate. Without trying, I started to wake up before leaking; over time, my whole body would instinctively (subconsciously, in my sleep) go rigid, with my legs locked together. Miserable, but surprisingly effective.

PADS, TAMPONS, AND A DIVA CUP

For years I used a combination of tampons and a pad. Even with that combo, I still felt vulnerable to leaks.

During my final year of university, a friend told me about her Diva Cup and I ordered one that very night (I don’t think you could get them in local stores at the time). This product was life-changing and I’ve used it for over a decade (except when I had an IUD, more on that below). If you’re not familiar with menstrual cups, I would strongly recommend you read the instructions before using one, as I learned several “tricks” for easier insertion and removal that were not necessarily intuitive.

I know some people hate using a menstrual cup but they made a hugely positive impact on how I managed my periods.

For every day of heavy flow (4-6 depending on my period cycle), I still had to wear a pad (3-4 days this would be an overnight pad) along with the Diva Cup. Only for the last 1-2 days could I safely get away without a pad, and even then I still used a panty liner.

But the Diva Cup has a much better “capacity” for heavy flow versus a tampon and, equally critical for me, allowed me to track blood loss.

VOLUMES

And now I’ll cross the line into the she’s-holding-nothing-back level of sharing, but this is the type of information I could never find from “real” people.

The estimated average blood loss for women is 30-40 mL. Anything over 80 mL is considered menorrhagia, which is recognized as a bleeding disorder. At this point, doctors will label a period “heavy”.

While my levels varied from month to month (quite typical), I usually lost between 140 – 160 mL (so, double the volume needed to fall into the “bleeding disorder” category). In addition to the quantity being measured with a Diva Cup, I was also leaking into pads so, conceivably, there could have been months where I lost close to 200 mL.

ANEMIA + OTHER IMPACTS

One of the most common issues associated with heavy periods is anemia and I was on my first iron supplement by the age of 14.

Heavy periods have also impacted my quality of life. For over two decades, I have had to plan around my period, prioritizing being close to home. We planned our wedding and almost every family vacation since around my cycle. It’s not just an annoyance, it’s disruptive.

I also struggle with PMS – usually for at least a week before my period. Then my actual period is exhausting because of constant vigilance and hands-on responsibilities. Then the week after my period I’m exhausted from the blood loss and all the physical, emotional, and psychological impacts of the situation.

Over the years I have tried various iron supplements (a range of pills; Floradix liquid) but the only supplement that has worked for me – sufficiently raising my levels without causing major stomach issues – was Feramax. It is kept behind the counter at pharmacies (all iron is; it’s toxic in high doses), but does not require a prescription. Compared to other forms of iron it is expensive (~ $1/pill vs the cheaper iron salts formulations like ferrous sulfate). There are cheaper generic forms but I strongly prefer the Feramax brand; my best trick is to ask the pharmacist for coupons, which they almost always have on hand. Family doctors and OB/GYNs also often have full-sized sample boxes of Feramax.

My hemoglobin numbers were always okay, but if we drilled deeper, my ferritin levels were well below normal. Several times I got my ferritin back up to reasonable levels with Feramax, but in the summer of 2021 I ended up having a series of iron infusions. These were ordered by my doctor and are covered by Medicare in Canada, but infusions are very expensive if paid out of pocket (I was told ~$2,000-4,000/infusion). While these did help my iron/ferritin levels, they didn’t end up boosting my energy levels and, over time, my heavy periods were slowly going to counteract the positive impacts of any infusions.

HORMONAL BIRTH CONTROL

This is the most frustrating part of my story. So many women respond successfully to hormonal birth control as a management tool for heavy periods.

I am not one of them.

In my first or second year of university, I started passing enormous blood clots. I was worried about the extreme blood loss and a campus nurse encouraged me to seek medical help immediately. I was put on a birth control pill (Alesse) and proceeded to bleed non-stop for 28 days. At the time, I had no desire to wait it out (I didn’t realize breakthrough bleeding was very common) and went off the pill.

Before getting married I went back on the pill for birth control. Within 6 months, I was a wreck. My mood plummeted, I was exhausted all the time, I started getting migraines, my lower back was killing me (I started sleeping with a giant book under my lower back for lumbar support). I was in and out of doctors’ offices constantly. One day, almost in tears, I happened to be reading a magazine in the waiting room and saw an ad for a birth control pill. When I got to the fine print with side effects, my jaw nearly hit the floor – every single one of my symptoms, including lower back pain, was listed. Could it be the birth control pills making me feel so lousy? It had never crossed my mind.

The doctor I spoke with suggested I try a different type of birth control (this would have been my third or fourth brand of birth control, each one with a unique combination of hormones). I remember going home and sobbing to John: I just can’t do it. I cannot try another pill.

Somehow or other, I ended up on the NuvaRing. This was the birth control that worked best for me. My moods weren’t impacted dramatically and it helped lessen blood loss. Still, I didn’t like how I felt, went off it and 9 months later our first child was born!

When I had my 6-week checkup after delivery, the attending OB/GYN recommended an IUD. I knew we wanted to have another baby at some point, so opting for a quasi-permanent 5-year birth control method didn’t seem wise. I went back on the Nuva Ring and things leveled out.

My periods between kids were the best of my life. Still heavy, but completely manageable and so much lighter and shorter than at any other point. Eventually, I went off the NuvaRing to try for another baby, L came along…and then things nosedived.

My periods post-Baby #2 were even worse.

I decided to try an IUD. I was told it wouldn’t hurt. It was excruciating. I was told to wait it out for at least 6 months and the breakthrough bleeding would stop. It didn’t. I waited for 1.5 years and almost every day was horrible.

By the end, I was bleeding non-stop for at least 3 out of every 4 weeks. I felt horrible physically and mentally. While my blood loss was light (heavy spotting), now I was bleeding almost constantly and had to wear a pantyliner every single day. It was hellish. I had an ultrasound to make sure the IUD was still placed correctly – IUDs can migrate, requiring surgery – but everything looked perfect.

About a month after that ultrasound, I woke up one day with excruciating abdominal pain and proceeded to lose 100 mL of blood in about an hour. I was, as one might imagine, quite worried. I got in for an emergency appointment with a doctor who checked for my IUD strings. I wanted it OUT. They couldn’t find it. I got sent in for an emergency consult with an OB/GYN. She spent 20 minutes desperately poking at my cervix trying to find those strings only to conclude they weren’t there. (In addition to the stress of the situation, it was one of the most painful experiences of my life!) I ended up having an X-ray which revealed that my IUD was missing; eventually, it was determined my body must have expelled the wretched thing. Both my family doctor and my OB/GYN said I was the first patient they knew of that had spontaneously expelled an IUD.

Since that experience, every single doctor I’ve talked with has tried to convince me to try another IUD.

NO THANK YOU!

I have tried several other forms of hormonal birth control (Lolo and…something else) in the last two years – both were a disaster, with mood changes and regular breakthrough bleeding. Finally, I wound up back on the NuvaRing, this time encouraged to leave it in for consecutive months to try to stop my periods completely to allow my body a chance to recuperate. After 2 months on the NuvaRing I started having major spotting. I kept on with it for another 4 months but eventually decided I was done. In January 2022 I wrote in my One Line A Day Journal: Going to call Dr. X about hysterectomy. It’s time.

SURGERY

Over the years, doctors have been relatively hesitant to talk about surgery because:

• I’m young.
• I might still want to have more children (though once you have at least 2 and are over 35, they don’t fixate on this as much).

Then they were hesitant because I had 2 C-sections, a thin uterine lining, and a lot of scar tissue, including significant bladder adhesion (making it more complicated for a laparoscopic hysterectomy).

After years – literally years – of debating pros and cons and everyone trying to get some form of hormonal birth control to regulate things properly, I decided surgery was the only option. I was originally scheduled for a hysterectomy in October 2022 but tested positive for COVID while I was gowned and waiting to get into the operating room. Over the last few months, and in consultation with another OB/GYN, I opted to go ahead with an ablation. I had that last Wednesday [Feb 2023] at a local hospital. I am so thankful I made this decision and feel at peace with having tried this much less invasive procedure first. Time will tell; I have a family member who had an ablation and then two years later ended up with a hysterectomy. But the risks – especially given my scar tissue – were significantly lower and the recovery time is much, much faster with an ablation.

TAKEAWAYS IF YOU’RE STRUGGLING

If you’re reading this today and have a similar gynecological history, I’m sorry. It is a huge burden that you are bearing. It is isolating and exhausting and messy – emotionally, physically, and practically. I have been there and I wish I could wave a magic wand and take it all away.

Every situation is unique and I am not a doctor and am not trying to make any direct suggestions about how to manage your symptoms. That said, if you think you would benefit from some form of intervention, I encourage you to seek out a caring, informed medical team!

I also recommend:

• Measuring your flow. If you’re comfortable using tampons, a DivaCup isn’t dramatically different and allows for concrete measurements of blood loss. This is so helpful when discussing treatment plans with any medical professional.
• Recording relevant dates. Keep track of period start and end dates. Doctors care about the duration of cycles. Also, practically speaking, it’s much easier to plan fun life events if you know when your period is going to strike.
• Advocate based on your experience. I have spent dozens of hours talking about menstruation and birth control with doctors. And every single time I’d hear statistics about how well IUDs work or how most women don’t have any problem with X, Y, or Z. If it works for someone else, this is great. But if it doesn’t work for you, it’s okay to throw in the towel. It took me a long time to reach the point of saying: Enough! I couldn’t listen to what worked for other people, I had to listen to what my body was telling me. In my case it was saying: We hate hormonal birth control.
• Ask to have your FERRITIN levels checked. Ferritin is not always included in routine blood screening. My hemoglobin levels were fine when my ferritin levels were well below normal. Ferritin is far more sensitive and indicative of anemia. If you are anemic, I’d encourage you to speak with your doctor about Feramax or some other highly tolerable form of iron.
• Acknowledge that it sucks. Heavy periods suck. Clenching your legs together so you don’t leak all over your sheets sucks. Changing a Diva Cup in a public bathroom while vacationing sucks. Regulating things with hormone replacement can really suck. Enduring the status quo sucks. It’s okay to name your hard.

Maybe (hopefully) no one reading here today can relate to this health complication. But if you can, I sincerely hope you find relief and I hope this makes you feel a little less alone in your suffering. I also realize that many readers have struggled – or continue to struggle – with very complicated chronic conditions. I’m sorry, friends. It’s hard and yet you show up to work and life and fun, often bearing invisible burdens. I hope whatever physical or emotional challenges you’re facing today, you find some relief.

<3

Header photo by Matthew Jungling on Unsplash