Hysterectomy – Vivre 100 Fibromes

Rosta, a long-awaited myomectomy

Posted on July 17, 2022May 18, 2025 by Rosta Gayino

I wake up in this hospital room. I don’t feel any pain. Is it the effects of the anesthesia or simply the joy of knowing that the uterine fibroids have finally been removed? I don’t know. My uterus has been slit. More than a dozen fibroids have been removed. More than three hours under general anesthesia. Now my recovery begins. I feel free.

Stage 1: It’s nothing, just benign, non-cancerous tumors. I have no pain and many black women do.

In 2014, during an ultrasound following pelvic pain, the doctor informed me that I had uterine fibroids.

Me: “What are they?”

Him: “These are benign tumors located in the uterus“.

Me: “Is it dangerous?”

Him: “No, many black women are carriers of fibroids”.

Benign tumors. Not cancerous. Many black women have them. I have no pain. OK, it’s nothing!

Having as precept “It is better to prevent than to cure”, every year, I take an ultrasound test. The 3 subserous fibroids increase. But I am assured that it is still nothing! I have no symptoms.

At the end of 2016, I meet Aïssatou, from Fibromelles (now the Vivre 100 fibromes association) who campaigns for knowledge of uterine fibroids. She tells me about her experience. We are several women there listening to her. Two or three say they have uterine fibroids.

Aïssatou’s sentence remains etched in my mind: “We are often asked to feel our breasts for control purposes. Why aren’t we asked to feel our belly to detect the presence or absence of an abnormal abdominal mass?”

Motivated by the fight of this woman who campaigns for women’s health, I decide to join the Vivre 100 Fibromes association. There, I discover more and more this disease. I have no idea that these muscle cells will lead me to undergo the first operation of my life. But they don’t seem so benign anymore. The numbers speak:

30% of uterine ablations in Canada are due to uterine fibroids.
30 to 50% of women are carriers of fibroids
Up to 80% of black women and 70% of white women

I feel lucky because unlike some women, I have none of the pain:

No painful and abundant periods
No pain during intercourse
No abdominal swelling.

I am what is known in medical jargon as “asymptomatic” (having no clinical symptoms). Nevertheless, some fibroids continue to grow and one of the fibroids is now almost 9 centimeters in diameter, about the size of a 14-week-old embryo. I’m still lucky not to have the belly of a 14-week pregnant woman.

Following my principle “It is better to prevent than to cure” and knowing that everything that is not expressed leaves its imprint, I seek to understand the cause of my illness.

My illness – Evil ness – is trying to tell me something. In Ayurveda and in many other medical precepts, the uterus is the symbol of femininity, creativity, fertility, a place of memory… It connects us to our feminine power. So, what has not been expressed?

Source: http://www.1001fecondites.com/2011/10/matrice-uterine-berceau-de-fecondite-et.html

In order to better understand my menstrual cycle, I download an application to list all the symptoms during my period; very useful when gynecologists ask me questions about my cycle. I also follow a training with Séréna Québec on the symptothermal method which allows you to identify the fertile and infertile periods of the cycle. Having a better knowledge of my body and becoming aware of all the little changes that occur during my cycle is very beneficial.

I consult a naturopath, an osteopath, and an acupuncturist. I modify my diet and favour organic foods as much as possible, consuming more raw vegetables, avoiding industrial milks and tea. Milk thistle, which helps support liver activity, becomes a friend of mine. Following the recommendations of my acupuncturist specialized in fertility (gynecologist in her country of origin), I start drinking warm or room temperature water. This helps stimulate natural digestive enzymes and improve digestion.

In addition to sports, which I do regularly, I add the practice of yoga.

I won’t say it has a direct effect on the bigger fibroids, but I’m sure it helps my well-being and that of my uterus and prevents some of the fibroids from growing.

Phase 2: Pain, Stress and Medical wandering.

During the summer of 2017, a friend asks me if I was pregnant. No! My belly has swelled. My bladder is under increasing pressure from the fibroids. My sleep is frequently interrupted by this discomfort. I go from asymptomatic to symptomatic.

From September to November 2017, I perform 2 ultrasounds. I make 2 medical visits to 2 different gynecologists. At each appointment, I bring all my ultrasounds (very important when you don’t have a family doctor). My goal: to find an understanding doctor who agrees to follow me and perform a myomectomy. This surgical procedure under general anesthesia consists of removing uterine fibroids. Unlike hysterectomy, the uterus is preserved.

The first gynecologist gives me a prescription for an MRI (Magnetic Resonance Imaging), but in the meantime recommends that I take Fibristal, then do the MRI afterwards. This medication may cause fibroids to shrink by blocking the effects of progesterone on the endometrium. You should know that progesterone is a hormone that stimulates the formation and growth of fibroids. Given the listed side effects and the minimal likelihood of it having an effect on my large fibroids, I decide not to take this medication. Eager to have a second opinion, I consult a gynecologist. She does not consider my case alarming because my symptoms are not significant. Nevertheless, she prescribes me a pelvic ultrasound.

At the beginning of December, I am back with this 2nd gynecologist. After hearing my argument, she finally agrees to put me on the hospital’s waiting list for a myomectomy which will probably take place in the next 6 months.

On January 11, 2018, I feel intense pain in my lower abdomen. I have a constant urge to urinate, but no burning when urinating. I wake up 6 times during the night. I think I’m dealing with a urinary tract infection. The next day, I rush to the doctor. A urine test is performed. Antibiotics and sick leave are prescribed.

From Friday to Sunday, the pain is more and more intense. Antibiotics and cranberry juice have no effect. I feel an intense pinching sensation at the level of the fibroid and twinges. All the hypotheses run through my brain. Aïssatou tells me about necrosis of the fibroid (the withering away of a fibroid caused by a drop in the blood supply) or the torsion of a pedunculated subserous fibroid.

On Monday, I am back at the medical clinic. Another doctor consults me. The results of the urine tests are negative. I inform him of the hypothesis of necrosis of one of the fibroids. Confronted, he asks me if I am in the medical field. Not at all! I’m just trying to figure out what’s going on in my body. After an abdominal palpation which provokes a high-pitched scream, the doctor assumes that it is an inflammation of the peritoneum or indeed necrosis. An X-ray or MRI is needed to make a diagnosis. He sends me to the emergency room of the hospital where I am on the waiting list for the operation.

Approached by a student doctor, I again explain my pain, the history of fibroids, the waiting list… I tell him that I am under the care of a gynecologist at this same hospital.

She tries to palpate the cervix, without success. Another student doctor joins her. I tell him the same story again. He wants to examine the cervix again. “Your colleague just did it. She wasn’t able to do it.” I tell him with exasperation. He insists. He does it. Identical result.

I ask them to contact the gynecologist who follows me in this hospital. Surprisingly, I never see him.

I ask that he check that it is not an inflammation of the peritoneum. Impossible according to them; I have no fever or vomiting. I demand an ultrasound. After 30 minutes of waiting, the 2 student doctors, accompanied by the head gynecologist and a machine to perform an X-ray, join me. After 5 minutes, the head doctor says to me: “You have large fibroids! The results of the urine test and the blood test are normal except for a slight anemia. You can go home. There seems to be nothing abnormal “.

For those who know Nicky Larson, my desire at that time is perfectly illustrated by this image. It’s a good thing I didn’t have a sledgehammer…

I insist on another ultrasound. It is out of the question that I go home without knowing the cause of my suffering. I get an appointment for the next day at the radiology department. He gives me a prescription for analgesics and anti-inflammatories to take depending on the intensity of the pain, for an indefinite period.

Before leaving, the doctor warns me: “It’s not sure whether we will see something with an ultrasound”. I reply: “Okay! In that case, what do we do?” I have no answers. I am beside myself.

By insisting for answers, I sometimes feel that my case annoys the doctors in front of me. I’m sure they’re not denying my pain, but in some way, I’m underlining their failure. They offer me no solutions, no answers.

Dozens of questions race through my brain. Will these anti-inflammatories affect my intestinal flora? What can I take to protect it? How long should I take them? How do I justify my repeated absences to my employer? Will I ever find a doctor who will listen to me and agree to operate on me? How long will it take?

To my great despair, in order to alleviate my suffering, I decide to take Fibristal for a month.

Phase 3: the week of miracles called compassion, empathy, and liberation.

I go to a private radiology clinic to perform the MRI that was prescribed to me a few months earlier. The attention and sympathy of the medical assistant touch me deeply. Even though I am surrounded by wonderful family and friends, I finally have the feeling of being helped by someone close to the medical profession. The MRI completed, I leave with the CD. I have to wait 10 days for the doctor to receive the results.

Ten days later, still on anti-inflammatories, I’m back in the gynecologist’s office. The long-awaited and well-known result falls: the largest fibroid is necrotic. At first glance, this is good news since it means that the fibroid is dying. But how long will the pain last? What can I do to reduce the intensity?

“What do we do?” I ask the doctor. I receive the answer like a stab to the body: “There is nothing we can do except take the anti-inflammatories.” he says.

The excess of tears held back for days now flow down my face. I look at the doctor and say to him: “I am not talking to the doctor, but to another human being. In front of you, you have a human being who has been suffering for 3 weeks now, who is on anti-inflammatories for an indefinite period. You are in the medical field. You know doctors who can operate on me. I can wait until April if necessary, but help me find a doctor who will operate on me. “

Three hours later, I am in front of the doctor who will operate on me in the following days. My pain has finally been heard.

On February 7 at 6:30 am, I am in the hospital to undergo the long-awaited myomectomy.

At 6:45 a.m., I’m in the taxi on my way home. The nurse informed me 5 minutes after my arrival that the obstetrician-gynecologist canceled all her interventions.

I go from relief to despair. I can’t think anymore, I’m so tired. I don’t want to fight anymore. At that time, my friend Fauve who accompanies me shows me an email she received that morning. A real balm to the heart! At 8 a.m., I call the doctor’s office to ask for another date for the operation. I learn that the doctor is waiting for his patients in the operating room. He hadn’t canceled his operations. Big administrative error! Impossible to operate on me since I had just had my breakfast. The Quebec health system is suffering, my dear friends! My suffering will have an end. But when will our health system be cured? In short, that’s a whole different story!

The myomectomy by laparotomy under general anesthesia took place on February 21. More than 3 hours in the operating room. A superb medical team took care of me. More than ten subserous fibroids removed. Four nights in the hospital. A beautiful scar described as a work of art by the nurses. I assure you; my scar no longer looks like that!

During my two months of convalescence I concentrated on rest, yoga, massage of the scar with essential oils, vegetable soups and aloe Vera juice.

I know fibroids can come back. But today, I am up and fighting. I would like to thank all the people who surrounded me with their love as well as the Vivre 100 Fibromes association.

Source: my niece

Make this phrase a rule of life: “If you are in severe pain or discomfort, don’t let the medical staff force you to be quiet. Stay firm because you might just save your own life.“

Never give up when it comes to your health. Listen to your body. Seek to know, to understand your illness. Inform yourself. Assemble your medical file. Knock on multiple doors. Ask for different opinions. Surround yourself with people who support you. And above all, keep hoping that a door will open.

Cathia, I am a survivor who chose hysterectomy

Posted on July 17, 2022May 18, 2025 by Rosta Gayino

Hello, my name is Cathia and I am a survivor.

I’d had very abundant menstruations for a week. I knew it was due to the fibroids I had had for years. At dawn on June 14, 2017, during my week’s vacation, I was losing a lot – far too much – blood (large clots). My instinct told me that was not normal. I had also become very pale, I had a lot of stretch marks on my legs, I was losing a lot of hair every time I combed my hair. My vision was very blurred, and I felt more tired than usual.

On June 14, 2017, in the middle of the night, I sat on the edge of my bed. I didn’t know for what reason. I simply felt a force pushing me to stand up suddenly. That’s when I got dressed and drove to St. Mary’s Hospital.

I had a friend who worked nights at this hospital, so I contacted her to let her know about my situation. As soon as I arrived at the emergency room, the nurse on duty took my blood pressure. While I was lying in one of the consultation rooms, seven different doctors came to see me to ask me about my state of health. I began to imagine all the bad news that these doctors were going to tell me.

My friend went to see the nurse to find out more about my condition. Instead of answering, she started asking her questions about me, asking if I got up every morning, went to work, and led a normal life like everyone else. My friend said yes, so the nurse explained to her that my hemoglobin level was extremely low and added that if I had waited even one more day, I might have died.

After their diagnosis, the doctors decided that it was urgent that I undergo an operation to remove the fibroids, but given the significant drop in my blood cells, they concluded that it would be too risky to operate on me in my current state. They decided to give me a blood transfusion and put me under observation to regulate my blood cell count.

After spending the night and the next day in the emergency room, I was discharged from the hospital and given about twenty types of medication to take a day to stabilize my blood loss while waiting for surgery. Despite the urgency of my condition, I was put on a waiting list for surgery.

During this time, the ultrasounds that had been carried out detected 6 fibroids measuring 10 cm each as well as a cyst on my left side, at the bottom of my belly.

After a few weeks of waiting, the hospital contacted me to inform me that the surgery would take place on July 25 at 12:30 p.m. I decided to have a hysterectomy (the removal of the uterus) despite the advice of my gynecologist who insisted that I was still young and could have children. I think that at the time I let fear take over and refused to hear anything anyone had to say. I said no and demanded that he remove the uterus. My doctor explained to me that the operation would last a maximum of two hours and that the next day I would be discharged from the hospital followed by a period of convalescence. On the day of my operation, I greeted my loved ones and added: “See you in two hours!”

When I opened my eyes in the recovery room, I looked at the clock in astonishment. It was 8 p.m.! The nurse said hello and I was shown to my room. Seeing me, my relatives shared an expression of relief after hours of worry without news.

Once installed in my room, I had urinary discharges. The stitches in my bladder were torn because they weren’t tight enough. Instead of urinating into the catheter, I had urine leaking out of the seam. A doctor on duty came to sew me up like a seamstress coming to do alterations on a suit. Phew!

Following my operation, three days go by without any news from my gynecologist for my follow-up. Finally, after a week to the day, my surgeon showed up to explain to me how my operation had gone. He began by saying to me: “Madam, I have never had to undergo an operation as complicated as yours!” He pursued. “During the operation, there were so many fibroids in your belly that they had made a hole in your bladder,” he says. Also, he couldn’t find my uterus. I never knew a uterus could move. I always thought it was all connected. The surgeon told me that he had finally been able to locate my uterus under my right breast and that after the operation, I could not wake up. OMG! I did not understand what this doctor was telling me. For me, it seemed like he was explaining the script for a horror movie released at the cinema. I couldn’t find any logic in his words. To conclude, the surgeon told me that everything was back to normal, that everything would be better for me and that I was like new. I thanked him. He wished me a speedy recovery and informed me of my release from the hospital.

This is my experience with fibroids! I consider myself a survivor. Now, by the grace of God, I’m fine

I hope my testimony can inform women of the importance of listening to their body, of paying attention to any unusual changes that appear suddenly or gradually in their body. If in doubt, ladies, go see a doctor, because it’s always better to be safe than sorry.

I want to thank the organization Vivre 100 fibromes, which informs, raises awareness, and gives resources to women who live with this scourge that affects so many women in the world. Good continuity !

Cathia, the survivor

Sandrine, 38 years old; I have a fibroid uterus and I had a child through in vitro fertilization

Posted on July 17, 2022May 18, 2025 by Rosta Gayino

Hello, my name is Sandrine, I am African, I am 38 years old, and I have a fibroid uterus.

It all started 8 years ago when I discovered that I had a small more or less rounded lump in my lower abdomen which, although painless, worried me a lot. Yes, feeling that you have a mass in your abdomen can be very worrisome. Being a thin person, this mass was more accentuated when lying down than standing up. I actually felt it for the first time in a lying position. Before that I had noticed that I had menorrhagia during my periods; my periods had become abnormally abundant and long. Regarding dysmenorrhea, unlike my sisters, I had had it since puberty. I thus consulted a gynecologist, and the diagnosis of uterine fibroid was made. The gynecologist put me on progestin combined with iron because I had anemia. I was taking my anti-inflammatories as usual during my periods.

Over the months and years, the fibroids grew bigger. They became very bothersome, and in addition to the frequent bleeding I began to have excruciating pain which led me to the emergency room each time because I needed upper-level and intravenous analgesics to calm me down. I still remember my screams and my tears at that time: it was excruciating. In addition to living this every month, I was also very fragile mentally and psychically.

I underwent a laparotomy myomectomy in 2012, two years after the diagnosis.

This was made necessary because of the debilitating pain, the heavy bleeding, the severe anemia I had (the doctors had even considered a blood transfusion during the operation), and to facilitate a subsequent pregnancy. Three months after I recovered from the intervention, my doctor advised me to conceive a child as soon as possible because nature abhors a vacuum. It is important to know that depending on the location of the fibroid, the symptoms, its size, it is sometimes difficult to escape surgery. Hysterectomy is possible, but the uterus is kept if a pregnancy is desired, especially when you are still of childbearing age. A few months after my operation, my cycle became regular. I still had fibroids, but they were asymptomatic. During the operation, we only removed the largest, which measured about 16 centimeters.

I finally met the man of my life several years later, in 2014. We decided to form a couple in 2015. Both of us wanted children. I made it clear to my partner that I had undergone a myomectomy.

In 2016, as I was unable to conceive, we went to the procrea clinic (clinic for assisted procreation) to consult and discuss other alternatives.

We carried out several tests within this clinic to find out what was the origin of the problem. The tests, of course, showed that it came from me. The fertility check-up found several fibroids (I had 15 now and they had increased in size), a low ovarian reserve and the hysterosalpingogram showed that I had both tubes blocked. My gynecologist explained to me that given my “advanced” age, it was better for us to go directly for IVF (In Vitro Fertilization). But to guarantee its success, it was necessary to reduce the size of the fibroid. She also advised me to freeze my eggs. I was therefore put on Fibristal for 3 months to reduce the size of the fibroids. Artificial insemination had not been considered, because for that it was necessary to have permeable tubes, which was not my case.

However, I did not like the clinic, and we decided to transfer our file to the McGill reproduction center. I had in my entourage 2 friends who had been cared for there. For my part it was very important that I connect with the doctor who would follow us, to feel understood, supported and to receive answers to my questions. In terms of the cost of IVF, it was also relatively less expensive at the McGill reproduction center. I therefore went there with my partner where we redid the tests. I had been taking fibristal for 3 months already and, good news, the ultrasound showed the consequent reduction of my fibroids. It was agreed that I would take fibristal for another 3 months. After that, the hysterosalpingogram showed that I had permeable tubes. It was actually fibroids blocking my tubes.

As my fallopian tubes were permeable, I resorted to artificial insemination (AI).

We thus started the AI process, which is covered by the government for 9 trials. On the first day of my period, we meet a nurse who explains everything to us. We obtain the proper medicines which are available in specific pharmacies. We come back to see the nurse with the drugs; she explains how to administer the injections and for how long. An appointment is then made for blood tests and the follow-up ultrasound. The day finally comes when the treatment is modified and you are asked to inject yourself with the molecule that will trigger ovulation and to come the next day to do the insemination with your partner’s sperm.

I was very positive during this process because for me there was no reason for it not to work because neither I nor my spouse had other problems. I was always thinking about my treatment and doing my best to never be late for my injections. But we tried twice and failed both times, which affected me a lot psychologically. On the second attempt I cried a lot when I had my period. But luckily, I was not alone; my husband was fully by my side during these trials and he supported me a lot.

After these two attempts I needed to take a 2-month break.

After this period, we went back to see the gynecologist with the decision to do IVF.

The IVF hormone treatment was more laborious. Some AI molecules were renewed but there were several others and I had to prepare myself psychologically to resume these injections. On the first day of your period, we must call a number given in advance to make an appointment for an “IVF” ultrasound for day 2 or day 3 of your cycle. On Day 2, after the ultrasound, we are advised by a nurse to start our hormone injections (Puregon + Repronex). On the 6th day of injection, we start a new injection (cetrotide) which must be taken in the morning, while continuing with the other injections. The next ultrasound is done on the 8th day of the injections and a blood test is taken on the same day. Further ultrasounds are planned depending on how our body responds to the treatment. The idea being to maximize follicular stimulation.

My egg retrieval took place about 2 weeks into the process. I had been able to produce 5 follicles. My husband was also present to donate his sperm for IVF. A day before, on the recommendation of the nurse, I had injected the hormone HCG. After the egg retrieval, I received 3 more prescriptions to prepare for the embryo transfer. This took place 3 days after the egg retrieval. The culture only gave 2 embryos which were all transferred to my uterus.

After the transfer we made an appointment for the pregnancy test. The medical team at the Reproduction Center gave us recommendations concerning the lifestyle to adopt (diet, vitamins, exercise, hygiene, sexual relations, stress, etc.). In the meantime, I had to continue with the intravaginal endometrin. I did my best not to be stressed during this waiting period. It was hard. On the day of the appointment for the pregnancy test, about ten days later, I went to the reproduction center and they took a blood sample. The nurse reassured me that I would receive a call that same day to tell me if I was pregnant or not. On the way home I bought a rapid pregnancy test; I was so impatient; I didn’t want to wait. But I was unable to perform the test and waited. In the afternoon the center called me with positive news. My IVF worked on our first try. It was total bliss. The miracle had happened. I was going to have twins. I don’t remember exactly when, but 1 to 2 months later I had my first pregnancy ultrasound and the gynecologist told me at that time that only one embryo had survived. This news saddened me a lot because I wanted a twin pregnancy, “to have two babies for the price of one”.

My first and second trimester were pretty tough. The fibroids grew with the pregnancy and were sometimes so painful that I had to be hospitalized several times. I was always afraid of losing my baby. My third trimester was the easiest. IVF can be hard to bear both morally and financially, but it’s worth the cost! I was ready to make any sacrifice to be a mother. I think that at a certain age you shouldn’t wait too long and think about it but go for it with the possibilities of assisted medical procreation that are available to us. It is also important to believe that it can work and to persevere despite some negative results.

Sandrine