The Note #35

One to share!

A bit of a longer format today as I want to share something that I think could help so, so, so many women out there. It’s a story that truly needs to be told.

It’s a story about fibroids. I’ve wanted to write this for a while, just as a letter to all the other women suffering from it out there—70% of us, it seems. If you don’t have fibroids, you probably know someone who’s dealing with them and what I am about to tell you might very well change their life. I’ll try to make it short, I promise!

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I had been dealing with fibroids forever. I knew I had them in my thirties. It’s possible they caused some of my fertility problems, but we will never know. The many doctors that I saw when I was on my “fertility journey” overlooked them, saying “they weren’t in the way” as they were trying to push their specialty on me, whether it was a hormonal treatment, acupuncture, IVF, or other.

I’m not mad at anyone… Okay, I am a bit mad. And I am rarely mad.

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Those of you following the private part of this newsletter know everything about my long and winding fertility journey (sorry about the repeat!!!). You might also have read this back in the day. I won’t go over it again, but let’s just say that one day, I found myself, at 45, on the other side of the mountain.

It was very unlikely that I would have children, and I was—mostly—okay with it.

That was the moment when my fibroids really started becoming a subject in my life, and I started getting torrential, debilitating periods. I could also start feeling them as I was touching by belly. They were getting very hard and big, as it often happens during perimenopause. Last year, one of my biggest fears was to get my period on my wedding day.

Thankfully, I didn’t. But because of the loss of blood, I was getting anemic—to the point that I could barely dance at my own wedding. Barely walk up those high castle steps. Another story for another day, but it was time to do something.

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It’s not like I hadn’t done anything. I had seen numerous doctors over the years. So many, all very famous and highly recommended, across the US, France and the UK. And each time it was the same thing. Doctors pushing what they knew to do. The hormone doctor told me to take hormones, the holistic doctor told me to eat kale, and the surgeons…

Well. The surgeons told me I should get a hysterectomy.

“You’re not going to have kids, right? It’s too late anyway. So what do you need a uterus for? You have too many fibroids for a myomectomy it would be a butchery (yes, they said that) so, let’s go! I do them all the time, do not worry!”

I’m not going to go into the number of humiliating things I have heard from doctors in my life, this would be a book and—AGAIN!—I’m just trying to get to the point and to THE HAPPY ENDING.

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The problem I had is that for some weird and wild (literally wild) reason, anytime the idea of cutting out my uterus from my body was raised, it’s like a horde of wild wolves started howling inside of me. I would cry warm tears for hours. I was so attached to my uterus, even with our strange, unrealised story.

The doctors would never understand. They would condescend, infantilise or roll their eyes at me.

They told me that I totally SHOULD get the hysterectomy, that it would protect me from possible cancers in the future, and that it was ridiculous not to do it. But I followed my instinct.

Many women have had that procedure—we’ve talked about it a lot with the community over the years. Some have loved it, some have had complications. One day, I might regret not having chosen that option. But I didn’t. I couldn’t. And I kept suffering. And I kept searching.

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A few years ago, I did try a method that exists in the US (for a hefty sum, obviously). It’s called the Acessa method. It’s a surgery that uses radio frequency to “burn” the fibroids one by one. I went at it with hope, so much hope. The doctor (none other that the one who invented the method) was very kind and I loved him. He said he was very confident that this had worked.

But it didn’t, not really.

A year later, I had to admit to myself I was still miserable and that all I had gained from that surgery was a scar on my belly.

By this point you would have thought that I was ready for the hysterectomy. And I did have some moments where I was. I was trying to be brave “Get rid of it all! What do you care! You’ll never need it!”

But this person I was trying to be just wasn’t me.

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I visited yet another doctor. Maybe the 30th doctor? I can’t even count them anymore. Just to give you an idea of how lost we can be even when we have the best resources. In France, it’s called “l’errance médicale” (“medical wandering?”)—it describes being lost in the medical system and not finding the right treatment. Advocating for yourself and feeling completely alone.

But back to my last doctor.

He said, hysterectomy. I said, I can’t. I can’t explain to you but I can’t. He didn’t judge me. It turns out, he was a very spiritual man. I like to think he heard the wolves howling as I started sobbing in his office.

“Have you thought about embolization?”

“About what?”

“Uterine embolization. It’s a minimally-invasive alternative to hysterectomy or myomectomy. It’s performed by radiologists, not surgeons. They go through your blood vessels and shoot microspheres that block the blood supply to the fibroids. The fibroids shrink and die. You keep your uterus. It works! And I know a great guy who does it, let me call him right now! I only didn’t offer it to you because it’s very painful.”

It was the first time I had ever heard of it.

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A few weeks later, in June of last year, I had the intervention. It was quick and easy, and yes, be warned if you ever do it, TERRIBLY painful for the next few weeks. As the fibroids shrink and disappear, it’s almost as if they needed you to feel all the emotional pain going away—fibroids are a manifestation of our unexpressed emotions, some say.

But a month later, I saw my now-beloved radiologist again. He was holding the results of my MRI in his hands and told me, “They’re all gone.”

“Will they come back?” I said, with tears in my eyes.

“I think never.” He said with a bright smile. A few weeks later, as my belly was slowly deflating, I was starting to feel sensations in my womb I had not felt for years. My period came back to normal. It’s like, finally, there was a breath inside. Fibroids create a lot of tension and pressure as they grow. I was literally blocked.

And now, almost a year later, I can tell you this felt nothing short of a miracle.

And I am mad—yes, really mad—that it took more than ten years to get there. And I don’t want that for you or your loved ones. I am not saying this is the solution for everyone. I think there is a place for hysterectomies, myomectomies and even hormones, but we do need to empower ourselves with more information about our health so we can make the right choice for us, knowing all the options.

And this option could be a godsend for women who actually do need their uterus on their way to having babies. No scar tissue, very little risk, and very quick recovery. Had I known this, I’d have done it in my thirties.

And until we find a way through, and a place where we can find all the right information at the right moment, the best thing we can do is talk, talk, talk and share.

Even when the problems feel a bit shameful. Even if it’s painful.

And even if we’re a bit crazy with our howling wolves.

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If you have any questions, I’ll be in the comments as much as I can in the following days.

In the meantime, I am sending you a lot of sisterly love.

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In the last Letter, I wrote about taking risks and challenging ourselves as we get older, becoming a founder, and the act of balance between setting standards and not letting ourselves think we’re “too good” for anything.

In the last Note, I talked about hair thinning and asked if you had any recommendations—if you’d like to share or learn more from other members, meet us in the comments here—and thank you for all your advice!

In our last live, we talked about all of the changes in my life and how unsettled I feel. Sorry for letting it all out and thank you for always being here for me. 🤍

We’re meeting again tomorrow, on Thursday, April 25th, at the usual 6pm UK time!

If you don’t know how to join our lives, learn more here and let me know if you have any questions!

I started a new column for Doré! You can read the first edition here (it’s my beauty manifesto!) and let me know if you have any beauty questions and topics you want me to cover in the future!

If you have any questions or would like to suggest a subject for one of my future Notes, let me know here!

Big kiss!!!