“Pregnant, my endometriosis pain made me go through hell”: when the disease makes pregnancy terrible

From suspected Crohn’s disease to endometriosis

14 years ago, in 2010, Camille was referred by her GP to a gastroenterologist. Objective: to find the origin of his very severe digestive disorders, resulting in diarrhea, blood in the stools, fainting and vomiting. After a battery of tests, the verdict fell: it was Crohn’s disease. However, if the clinical symptoms are quite strong, the examinations only reveal a “small” Crohn’s, i.e. little inflammation. For several years, she took treatments for this pathology without seeing any improvement in her state of health. The crises continue, degrading his quality of life. She loses weight, has difficulty walking, has to be absent from work for long periods… During a consultation, the track of endometriosis is raised. Camille then performs an MRI and an ultrasound, which confirms it. However, no treatment is administered to him, the crises continue and his professional and social life is put on hold. At the same time, she learns that she might not be able to have children because of this illness. A hard blow to take.

Find a doctor specializing in endometriosis

After two years of research and around ten gynecologists consulted, Camille continues her quest. She has only one goal: to find a specialist who, even if he doesn’t know exactly how to help her, will do everything he can. In February 2017, his mother found the contact of a doctor specializing in endometriosis. Her practice is located in Normandy (now in Bordeaux), she lives in the Paris region. What does it matter! Appointment is made for the month of September. For the first time, a doctor listens to him. He tells her that she is not the first patient to experience this, that usually women are older than her. The doctor directs Camille to the RESENDO network from Saint-Joseph hospital, in Paris, and advised him to consult a pain doctor. Some endometriosis lesions have reached the pain nervous system, so she has a neurological problem in addition to endometriosis.

Finally, treatment for endometriosis

Camille goes to the medical establishment recommended by the doctor specializing in endometriosis. She then meets a radiologist, a gynecologist, a pain doctor, an osteopath, a micro nutritionist-dietitian… In addition to her continuous pill and neuropathic medications, she must receive supportive care: physiotherapy, acupuncture, yoga and micro-nutrition. She gets down to it and it’s a revelation. Little by little, his life changes. After two or three years, she leads a “normal” daily life. From then on, she co-founded Gyneika, a micro-nutrition brand dedicated to endometriosis. She, who had to painfully order each nutrient individually on the internet, wishes to offer global solutions to all women who, like them, suffer.

the pain returns, with a peak at the time of ovulation, making it difficult to try to conceive a child

Getting pregnant with endometriosis

In 2016 Camille met the man who would become the father of her children. It is not yet supported by the Resendo network, and is suffering a lot. He then becomes a caregiver, and pushes her not to give up, to seek a solution at all costs. When they start a baby trial, Camille knows that she must stop taking the pill continuously and that she can continue her pain medication, which will have to be stopped in the event of pregnancy. Pregnancy begins after a year of attempts. A year during which the pain returns, with a peak at the time of ovulation, it is therefore difficult to try to conceive a child at these times.

Camille was bedridden from the 7th month of pregnancy, due to the threat of premature birth because her uterus was contracting too much. Her pregnancy ends and she gives birth. An event presented to the young woman as being the biggest pain a woman can experience. But as she says “this person didn’t have endometriosis”. She, who had prepared herself for a terribly painful moment, saw it rather well, considering what she had endured up until then. She gives birth without an epidural.

Camille begins to wonder if she is not going crazy,

Pain from endometriosis during pregnancy

A year and a half after giving birth, the desire for a second child became apparent. Camille then did not resume her treatment for the neuropathic pain of endometriosis. A mistake that she quickly regrets, as her body is exhausted by the excruciating pain she experiences, particularly during ovulation and menstruation. After a year, she became pregnant. She is then exhausted, especially since she has just launched her business, Gyneika. So she can’t stop. At just 7 months pregnant, she has contractions every five minutes. At the hospital, she is told that her cervix has not moved but that she must take it easy. She is then bedridden and slowly regains her strength.

At 8 months of pregnancy, the neuropathic pain of endometriosis awakens. Every day is an ordeal, she comes to have suicidal thoughts. She is supported with psychological monitoring in the maternity ward. The medical profession suggests that she take her pain medication again, but Camille refuses, for fear of the potential consequences for her baby. However, it was decided that painkillers, although prohibited during pregnancy, would be administered to her every week in the maternity ward. The risk to the mother’s life is too high, she is so bad…

People around her tell her that this is not possible, that endometriosis goes dormant during pregnancy. Camille begins to wonder if she is not going crazy, on his own terms. She then relives what she experienced many years ago. She begins to doubt again, despite her DU as an expert patient. Her gynecologist confirms that endometriosis pain can occur in very rare cases during pregnancy. No solution is given to him. She hangs on.

Her labor is triggered. It’s deliverance, the pain stops. During her postpartum period, she resumed her epileptics, which aim to modulate the pain, which prevents her from breastfeeding. She must make a choice between herself and her baby. She knows that this choice saves her, but it is not easy to accept. Fortunately, the maternity team supports him well. At the same time, she follows a course of food supplements from her own brand, the reference Painful periodsbecause it also acts on emotional balance. Her postpartum is going well. She who suffered so much while pregnant, finally breathes. And these are, in fact, the first words she will say to her little boy at birth: “it’s over, it’s over, we won’t have any more pain”.