My name is Christelle, I am 38 years old, married for 15 years and I have suffered from endometriosis for 5 years now.
Like almost all girls / women, I have always suffered from cramps and pain during my period with the endless pithy response: “It’s normal that you are in pain, you are having your period! “
Alright then. Yes, it is normal to feel more or less discomfort when you find yourself in this cycle where all the hormones are boiling and the body is shuffling … This is not trivial.
But no, it’s not normal for a teenage girl to be bedridden with a hot water bottle and painkillers every menstrual cycle, not normal to lose gallons of blood and end up in anemia. But there you have it, it’s the only answer I’ve had all my life as a woman.
However, I was extremely lucky, as I got pregnant very easily and very quickly. I had a problem-free pregnancy and an amazing childbirth, but unrelated to what makes me suffer almost daily now.
Like many people still (unfortunately), I felt, after the birth of my daughter, that I did not need to continue to see a gynecologist so diligently since I no longer wanted a child. And one thing leading to another, taken in the busy days, and the lack of motivation, I found myself not having seen a gynecologist for 9 years! Until one day, literally doubled over in my workplace (I work in the hospital), I have no choice but to go to the gynecological emergency room.
Then begins a long waltz of examinations and consultations before having a name for my excruciating pain.
In the emergency room, they tell me about ovarian cysts that have burst. They give me painkillers and the instruction to see a gynecologist to do an ultrasound.
The following week, the gynecologist consulted confirmed the presence of two cysts, intact, with a diameter of 4 cm each, on each of my ovaries. Imagine a tea light candle on each ovary. According to the doctor, that would explain my pain… NO without laughing ?!
Over time, for almost 6 months, the pain persists and is now accompanied by frequent and profuse bloody discharge. We perform a first abdominal MRI to determine if there are no other attacks that would explain the fact that nothing quite succeeds in removing the excruciating sensation that my ovaries are trying to tear away from them- same and run away.
The MRI then reveals what I’m suffering from: ENDOMETRIOSIS. The name is out.
To all my questions, my doctor’s answers do not suit me.
” – What is that ?
– An endometrial condition that proliferates erratically and creates masses. Little is known about the disease.
– How do you treat him?
– We don’t treat it, we control it with pill-type hormones.
– Can we operate?
– Yes, but it is useless, because you will suffer all your life, because the body keeps the memory of pain … “
I am flabbergasted by these answers and deeply desperate, because endometriosis not only rots my body with suffering, sleepless nights crying, praying for a moment of relief; but also my active and social life, since in struggling daily to keep an attractive front face, without showing any of my torments, I no longer have any energy to see friends, go out with a partner or play with my daughter.
Little by little, I am ailing.
So one day, I take my courage in both hands and learn about everything I can find about this disease, alternative remedies to improve its comfort.
I find the name of a specialist in this condition from Lyon and make an appointment with him.
The light at the end of the tunnel seems to finally dawn. However, sometimes the health system is a little biased, the specialist doctor works in a private gynecological center and in this kind of place you are encouraged to pay more and more expensive. So, after telling me that they could operate on me and thus free me from suffering (and no it would not stay for life), but that before that, since I am obese, I should have practice a sleeve (a surgical procedure to remove two thirds of the stomach so that I lose 30 kg) without it the operation for endometriosis would be too risky and I could end up with an artificial anus.
At that moment, I admit that very dark thoughts run through me fueled by the very strong painkillers (morphine, opioids, etc.) that I consume on a daily basis.
After a good month of utter discouragement, I put my foot back in the stirrup, and started a drastic diet (because I refused to have my stomach butchered for nothing) and lost almost 13 kg.
Only, we are not at the 30 kg requested by the specialist and unfortunately, no analgesic works. I can’t sleep anymore, can’t find relatively comfortable positions to hold myself … Hell!
In my misfortune, I still found a few tips and parallel treatments that momentarily relieved me:
• Yarrow infusions
• Osteopathic massages from a faciotherapist
• Mindfulness meditation
• A hot water bottle that became my best friend
In desperation, I decide to consult a third gynecologist. The latter receives me, listens to me, reassures me and tries to change my pill in order to curb the development of the masses. For 5 months it’s yours, year after year, then everything accelerates: my blood loss becomes hemorrhagic and daily to the point that it is necessary to set up a treatment for the anemia, and above all, the pain has become such that I only want to die… ..
My new gynecologist hears my suffering and agrees to operate to remove the masses which have become gigantic (8 cm each, the equivalent of tennis balls) and which have developed adhesions with all the neighboring organs: uterus, ovaries , rectum, intestine, forming a huge knot.
Upon returning from the operating room, it was a resurrection: no more pain, this background noise for 2 years, has finally disappeared. You can’t imagine (or maybe you do) what this disappearance represents.
As of this writing, it has been 3 years since this bilateral ovarian cystectomy, yet although more comfortable, I am not cured. I’m on my 4th birth control pill because my body gets used to and bypass hormones. The pains slowly, sneakily begin to return, the blood loss too … and unfortunately the law does not allow me to have my uterus (source of endometrium) removed before my 40th birthday and if the medical profession sees fit to do so. My opinion alone does not count. My wishes (or rather my non-wishes) for other maternity hospitals do not matter, because I “could change my mind and want more children …”
This has to change, but it’s another fight …