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Endometriosis upsets the lives of women who suffer from it in several ways. Sometimes one of the damage concerns fertility. Can you conceive with endometriosis? What resources does this unique journey require? Nantcy Leone, journalist and author of “Endometriosis, PMA, How to better live your journey?” gives us his testimony.
What does having endometriosis mean when you want to become a mother?
Nantcy Leone : “endometriosis, often diagnosed during a fertility check-up, is the leading cause of female infertility in France. This gynecological condition, which is defined according to Inserm “by a chronic inflammatory process due to the presence of tissue similar to the uterine mucosa outside the uterus”, therefore does not create a favorable environment for fertilization. However, if many doctors still advise their patients not to delay their first pregnancy too much, endometriosis is not necessarily synonymous with infertility. Difficulties in conceiving only concern 30 to 40% of “endogirls”. This means that the vast majority of them manage to become mothers naturally. For others, including myself, it’s more complex. Depending on the forms of endometriosis (superficial, ovarian or deep), the organs affected or the ovarian reserve, medical decisions (after examinations) are taken: operation (or not after evaluation of the benefit/risk) to attempt a natural pregnancy Or ART course. Only in-depth examinations (ultrasound, MRI, hysterography, serology, etc.) will identify the best options. The journey can be challenging, guilt-ridden and tedious.”
In what state of mind did you start your journey?
Nantcy Leone: “After twenty years of wandering and chronic pain, I learned that I had endometriosis during a fertility check-up. I had been trying for a baby for several years, in vain, it affected me a lot. Despite the examinations carried out, the medical profession saw no abnormality. So I tried everything to be able to perform an MRI (king examination to detect endometriosis) because I had many symptoms. I was right to listen to myself, it is thanks to this that I was finally able to be diagnosed. At first there was talk of an operation, but after reflection with the experts, the idea was abandoned. This might further affect my ovarian reserve, already low. I was quickly offered a course of PMA to increase my chances of conceiving. I knew it wasn’t going to be easy, but I was optimistic and ready for anything. However, I was not aware of all that this course engendered.
Is assisted reproduction different in a woman with endometriosis?
Nantcy Leone: “As indicated above, only the various medical examinations can allow health professionals to glimpse the best options. Since endometriosis is different for every woman, there is no common protocol. Treatments depend on individual needs. Obviously, during ultrasounds, gestures must be gentler and more careful to avoid unnecessary pain for patients. It is therefore important to remember this at each examination if you consult different experts during the ART (puncture, embryo transfer, etc.). Because sometimes they don’t have time to consult our file.”
Are we well supported? Do we find the necessary resources and professionals?
Nantcy Leone: “No, there is still a great lack of support and having an appointment with a specialist can take months. We also often feel like mere numbers. The testimonials that I receive from my readers on confirm. Some health professionals lack time, patience, listening and kindness. We sometimes do not have time to ask the questions we want, and the medical jargon is not always easy to understand Psychological follow-up, which is essential during a medically assisted reproduction course, is still only rarely offered. However, this should be systematic to help couples who wish it. Medically assisted reproduction can lead to misunderstandings, questions and guilt. , stress… We’re going through a real rollercoaster ride. So it’s important to have someone you can trust to talk to. I was sorely lacking in this lack of follow-up. I was in robot mode, and thought I could handle everything , but deep down, it affected me a lot .
It is for this reason that I wanted to write the interactive book “Endometriosis, PMA, How to better live your journey?”. Through various testimonials, including mine as a common thread, I provide expert answers and advice to help women and couples better live their medical journey and their path to parenthood. Videos, audios, podcasts, exercises… It’s a real health book that allows, between emotions and positivity, to better understand endometriosis and PMA and to reconcile with your body.”
What can help the person in assisted reproduction to continue their journey?
Nantcy Leone: “Alternative medicine can greatly help us. Psychology, sophrology, meditation, acupuncture, hypnosis, art therapy… allow us to regain self-confidence and reduce stress related to the course. Everyone can find the practice that suits them best. L Hypnosis, meditation and writing helped me a lot to get through this emotional tsunami, the bodily changes due to the treatment, and the hardships (lack of understanding in the couple or with the entourage, IVF failures, etc.). “
What do you remember from this journey and where are you today?
Nantcy Leone: “This journey upset me, and completely changed me. It is very absorbing, both physically and emotionally. I let myself be carried away, because my desire for a child was above all else, and I certainly forgot myself a little. So I took over the reins for my well-being. The most important thing is to feel confident with your doctor, to dare to ask him all the questions you want, even if they may seem silly. being well surrounded, taking time for yourself and your couple, giving yourself moments of break, knowing how to listen to your body in pain due to stimulation and other treatments. The lack of information and follow-up on this subject pushed me wanting to investigate and write this book, to give as many keys as possible to people on the same path. Having their feedback and knowing that my experience helps them, is my greatest reward. I continue to do prevention and to bring the book to life on social networks x with female readers. After 3 negative transfers and a separation, I stopped the course. My desire for motherhood is still present, I keep hope!”