QLQ: Do you have endometriosis?


Note: This article is for informational purposes only and does not substitute professional medical advice or consultations with healthcare professionals. Please speak to your doctor if you are experiencing any of the symptoms described below or have other health concerns.


In June of last year I opened up about my period struggles. Specifically, how I can’t work during the first few days of, and what my pain looks like. For a long time (more than half of my life), I wondered if endometriosis was the culprit of these severe symptoms. Turns out, some of you have been wondering the same thing…

The Process

“We can create a raft of rights for women who suffer. [This will especially help] poorly-paid women, those in precarious conditions, and the poorest [for whom the illness] is even more difficult to live with.” – MP for Seine-Saint-Denis Clémentine Autain (connexionfrance.com)

As most of you know, I’ve been living in France. I’m fortunate enough to be in a country that recognizes endometriosis as a chronic condition, and therefore has measures in place so women can access proper care.

I want to reiterate the process I went through, and the diagnosis I received as a result of the French healthcare system. Here it is in steps:

  1. I found a local gynaecologist, called and made an appointment. The appointment was set approximately two weeks from the call date.
  2. At the beginning of my appointment, I explained how my pain shows up and for how long. Very quickly, the doctor said, “I think you may have endometriosis.

This moment was detrimental to me. I have discussed these issues with multiple doctors throughout my life (mostly in Canada), and have been told different versions of:

“You’re more sensitive than other women.”

“All women have this issue, it’s normal.”

“Take some Advil and you’ll be fine.”

“It doesn’t sound like endometriosis because you only feel pain during your period.”

When the gynaecologist in France looked at me and said, “I think you may have endometriosis,” I cannot emphasise how validated I felt in that moment. Women have been called dramatic, broken, even crazy, over their pain. Finally, someone was taking me seriously, and this cannot go undervalued!

  1. The gynaecologist  proceeded to do an internal and external ultrasound (same day). He couldn’t see anything specific during either ultrasound, so he wrote out an MRI order for me.

I am originally from Toronto, Ontario and MRIs are not used to determine whether someone has endometriosis; they use more invasive measures. 

My sister recently spoke to her doctor and he argued that my ultrasound should have shown whether or not I was dealing with a reproductive issue. 

As you’ll soon find out, his statement is inaccurate. In fact, the gynaecologist even had trouble finding my left ovary on the ultrasound (it’s quite small). This reinforces how important it is to advocate for your own health – as frustrating as it may be. 

My experience proves that not all medical systems are alike, and certain methods can (should!) be challenged.

  1. I left with an MRI order and a prescription for progesterone pills. My MRI was scheduled six-weeks from that date. This wait period is not typical. I chose a private clinic in Paris during the summer (tourist season/holiday), which caused delays.

This is the part of the story I never really followed up on. First off, the progesterone pills became dangerous for me. Within a week, I started responding to them negatively (emotionally/mentally). By the fourth week, I had fallen into a state of depression and decided to stop taking them altogether. 

Although birth control is a revolutionary drug, it is also a one-size-fits-all medication. What I mean by that is, they don’t prescribe birth control with hormonal levels specific to your body’s needs. Unfortunately, the women in my family have a history of negative side effects with birth control and I am not exempt from this. 

Secondly, the pill itself did not eliminate my pain. It slightly reduced it, but also spread it over more days, which wasn’t ideal. Personally, it wasn’t a successful method for me; however, I know that isn’t the case for all women, and I recommend you speak to your doctor about best paths forward and what to pay attention to.

  1. My MRI took about 20 minutes. Upon completion, the MRI tech asked me to wait in a private room. The doctor showed up about 8 minutes later with the results.

The Results

I do not have endometriosis. I have adenomyosis.

Adenomy-what?

Ya, it was the first time I’d heard of it, too.

In short, the difference between endometriosis and adenomyosis is the location of the issue.

Endometriosis occurs when the endometrial tissue (the tissue that sheds during menstruation) is found outside of the uterus (aka places it shouldn’t be), such as the ovaries, fallopian tubes, pelvic walls, and/or bowel. Adenomyosis is similar, but the endometrial tissue is found in the walls of the uterus (also a place it shouldn’t be). 

Both can be extremely painful and are progressive diseases which means they get worse over time (hence France recognizing it as a chronic condition). I can personally vouch for this, as my symptoms have changed and worsened over the years. If left untreated, these diseases can cause infertility and pelvic organ prolapse.

Next Steps

I will be seeing the gynaecologist tomorrow! 

It’s been a while since the MRI but I only followed up today. This is due to life circumstances (i.e., work and travel), and is not a reflection of the medical system.

My hope for tomorrow is to find a solution for the pain that isn’t just a bandaid. For example, I currently take Antadys on the days I can anticipate the pain. Antadys is a medication in France that is prescribed to people with chronic arthritis and women with painful periods. It is the only medication that has worked for me, even more so than the progesterone pills.

Cost of Process

In total, between step 1 and 5 (including all procedures and medication) I spent around 3oo Euros. It’s important to note that I have medical insurance in France. Someone who wants to come to France and go through this process could be looking at 500 – 1000 Eur for procedures and medication (step 1 through 5).*

I get a new prescription of Antadys every few months, and each pack costs 3 EUR (without medical insurance coverage). Birth control generally costs between 6-12 EUR per month.

This process has been so accessible and affordable that family members from the US and Canada have considered flying over specifically for this reason.

As I move through the process, I will continue to provide updates. Don’t hesitate to reach out if you have specific questions about my experience with adenomyosis or the French medical system.

Until then, thanks for your QLQ!

Q. 


P.S. Don’t forget to submit your own Quean Life Query, and have your question anonymously posted and answered by yours truly! Published every Wednesday (or at least until your queries run out)!

*This is an estimate based on my own experience at the time the procedures took place, and may vary depending on medical needs and clinic prices.

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