Olivia* is 30 and lives near Brest. She used to work as a psychologist in a nursing home, but is now unemployed because of her endometriosis. She contacted me to offer her testimony on her endometriosis treatment. "My journey has been painful, but it's time to bear witness to the impact of the disease on all aspects of our lives, whether on a personal level, as a couple, in relation to infertility or our profession. Endometriosis has a huge number of repercussions that are underestimated. I didn't choose to be ill, but society is holding me back."
What was the diagnosis of endometriosis like for you?
I was diagnosed in 2018. Before that, a lot of gynecologists had assured me that there was nothing wrong with me. My husband and I wanted to have children and I had stopped taking the pill. The pains returned with my first cycle. I had very light periods, but with pain in my lower abdomen and lower back, as well as vomiting, shortness of breath and even fainting.
Because of this, I consulted with my gynecologist, who sent me for tests, and the MRI revealed stage 4 endometriosis, involving both ovaries, one tube, the diaphragm, the ligaments, the colon, the appendix and a nodule the size of an orange in the rectum.
The consequences of endometriosis include digestive problems.
Three years later, I learned that I also had a liver lesion, with a nodule that complicated my digestion. Transit is very slow. And when I eat too much fat, I vomit or feel sick until the digestion is complete.
Endometriosis treatment
I was on the pill continuously for years before I was diagnosed. I was fine, even if I had a few symptoms. But I didn't think it was endometriosis. After that, we jumped straight into MAP and I started with hormone injections. And between each IVF, I was again put on pill to try and calm down the inflammation a little.
Endometriosis treatment: surgical procedures
I've had two. First, in 2020, following a miscarriage that went terribly wrong. I suffered a major episode and had to undergo emergency surgery to remove all the gynaecological lesions. I had a hydrosalpinx. And then I also had an infection due to treatment for the miscarriage.
In September 2022, I was operated on again for a complete treatment. My gynecologist referred me to the Nantes center, which has a special endometriosis platform. The operation lasted eight hours, instead of the five originally planned. Between the examinations I had undergone and the day of the operation, new lesions had appeared. I was operated on jointly by a gynecologist, a urologist and a gastroenterologist, who only perform surgery on women with endometriosis. The gastro part took a long time, as I wanted to avoid having a stoma.
I lost a tube. They removed half my rectum, 50 cm of my colon, lesions in my liver and diaphragm, with very intense shoulder pain. My case is very extensive. Despite everything, I was happy to avoid the stoma and they did a great job.
Convalescence was so hard. I was fitted with an internal urinary catheter for two months. I didn't need a nurse to help me change it. This allowed me to go to the bathroom on my own, but only once an hour, which was restrictive. Having only half a rectum also means I have to go to the toilet more often, and I have to take medication for that.
The consequences on work
I had found a job in a nursing home. I had informed them of my situation, also because I had to take time off for my PMA course, which meant I had to adjust my working hours. But I didn't take any sick leave and worked normally. In 2020, after my miscarriage and while I was hospitalized, I received a call from my employer informing me that I didn't need to come back, as they weren't renewing my fixed-term employment contract. They made it clear that this non-renewal was linked to my illness, which was too pronounced, and that this one and only sick leave was one too many.
Dealing with endometriosis: the psychological consequences
The situation was very hard for me, because when you put your heart and soul into your work, and I continued to work even though I was in a terrible shape, giving it everything I had, only to be dismissed, it hurts. Especially since I liked my job and it was important to me. It was a bit of an escape from the MAP and the illness. It felt like it was being taken away from me. For the past two years, I've preferred not to look for a new job. Between the surgery, the convalescence and the MAP process, the doctors made me understand that I had to rest and devote myself to this baby project, so that it would go ahead a little faster.
Dealing with the financial consequences of endometriosis
I'm now at the end of my unemployment benefit period and no longer receive any allowance. Fortunately, my partner earns enough to support us. Some medical appointments are not reimbursed at all, and if I didn't have the financial capacity, I wouldn't be able to do anything. I applied for AAH from the MDPH, which awarded me RQTH, but that didn't stop me from being made redundant. I'm going to reapply for ALD. My state of health could deteriorate at any moment, as I underwent surgery at the end of September 2022 and since March 2023 I've been experiencing pain and transit problems again. The illness is returning.
The impact of endometriosis on my relationship
Before my operation, I was in a lot of pain, which inevitably affected my intimate life. What's more, with the MAP protocols, intimacy wasn't the same either. On the other hand, the illness and the MAP brought us closer together rather than pulling us apart. It was our great asset to discover that we were strong as a couple. And as my partner is very understanding when it comes to my illness, I didn't feel uncomfortable about my sexuality. There wasn't really any negative impact. Of course, we weren't like other couples, because we had to adapt to the cycle and the pain I was suffering from. That's where communication comes in. I'm lucky to have him, because MAP can either strengthen or break a couple. It's a real ordeal that you have to be able to endure.
Since I had the surgery, things have gone much better and we've rediscovered each other sexually. It's also important for things to get better.
Endometriosis treatment : fertility
I underwent IVF for the first time, but after the puncture I was hospitalized for an infection.
I did a second IVF but after the puncture, I was hospitalized again for a week due to a serious infection (ovaries, tubes, kidneys, bladder and hyperstimulation). If I hadn't been hospitalized, my life would have been in danger. Then we decided to stop IVF, because I was fed up. I insisted on stopping and the gynecologist realized it was too hard. We switched to inseminations.
At the time, I still had both tubes. After the first insemination, the test was positive, but after eight weeks, when we went for a follow-up ultrasound, we learned that the heart had stopped. The embryo had to be evacuated, but the treatment led me to hospital and an intervention because my nodules were infected.
I underwent three more artificial inseminations, all to no avail. My uterus is healthy and I don't have adenomyosis. The doctors don't know why I miscarried. The embryos seem to be of good quality. Maybe they won't implant because of my inflammatory condition or a genetic disease.
We resumed the MAP process in March 2023. We are currently in the process for a third IVF.
Dealing with emotions
I've been on a rollercoaster ride, with lots of bad news and negative things happening. Before the surgery, I didn't do any housework or outdoor activities. I was on morphine all the time, which inevitably limited my life, and it hurts to think that I have to live like this for years to come. Being a psychologist doesn't really help, because I don't think I can be neutral towards myself. My capacity to analyze and the tools I have at my disposal to help me maintain a certain serenity don't allow me to self-analyze. I'm just like everyone else with my problems, which I sometimes can't manage. Perhaps my training just helps me to step back.
The causes of my endometriosis
Nobody in my family suffers from endometriosis and I don't know exactly why I am affected. However, there may be genes in the family, even if the disease hadn't been revealed. In the past, women kept quiet and didn't complain about their period pains.
Endometriosis treatment through alternative medicine
I started acupuncture at the beginning of my MAP program, also to manage the pain. My midwife used to treat me with acupuncture and relaxation, which felt really good. I also often went to see an osteopath, to work on my intestines, diaphragm and lower back.
The manipulations he performed on me unblocked me, and that felt really good. Acupuncture, combined with osteopathy and the medication I was taking, helped me a lot. I had another osteopathy session two months ago and I couldn't live without it. My gynecologist, who is very supportive of alternative medicine, has started talking to me about sophrology, but I haven't looked into it yet, because I thought my last surgery would be the miracle cure.
On a daily basis, I use hot water bottles a lot. I take baths, which make me feel better. And I've learned to let go and rest when I need to. Some nights, I don't sleep and I try to listen to my body as much as possible. I've changed my diet dramatically, switching to an anti-inflammatory diet. I also walk half an hour a day, which relieves my abdominal and lower back pain.
My advice to readers
I advise you to talk to someone, whether your partner or your family, so that you can be supported. Without that, I wouldn't have been able to accept and deal with the illness. You also need to listen to your doctors. When my gynecologist told me I had to stop all MAP protocols in order to undergo surgery, I think I should have listened to him. Doctors know best.
Why do you want to remain anonymous?
I don't want to inform people I know who are unaware of my illness. I don't want them to find out about my life, my difficulties and my worries, because they might criticize. I already have to deal with so many difficulties in my daily life that I don't want to add the stares of people who could be nasty, which would mean an extra mental burden for me. I don't want to worry about what they'll think of me and us. There are people who also rejoice in the misfortune of others. These are complications I don't want to add to my life today. Some people are easy to talk to, but they don't know what we're going through. Others know but don't want to understand.