Endometriosis is a gynecological disease that is still little known, yet it affects 6 to 10% of women. The word about this disease has recently begun to spread thanks to personalities who have used their fame to alert public opinion. Among them are Lena Dunham, the director of "Girls", but also Imany, singer and ambassador of the Endomind association, Susan Sarandon, Laëtitia Milot, and Enora Malagré, who made her mark with her poignant testimony in which she said she had her uterus removed: "I had up to three miscarriages a year: it ate up my life!
Despite these statements and increased communication about this disease affecting women of childbearing age, many feel left to their own devices, or even "not legitimate" to feel ill.
The Cortex team was keen to meet and hear from women suffering from endometriosis. They all have different feelings and experiences and few of them experience the disease in the same way or share all the symptoms. It is also these factors that make it difficult to understand and accept by both the medical profession and the general public.
We would like to share with you what women go through and the wandering they undergo due to endometriosis.
Could you explain in your own words what endometriosis is, and especially what it means to you? Because not all women experience this disease in the same way and do not have the same symptoms.
Endometriosis is a gynaecological disease that makes me feel very guilty and unworthy of suffering this pain because of the lack of consideration by the medical profession and society. I often tell myself that I am exaggerating. That I should keep quiet rather than say my pain.
How were you diagnosed and at what age?
I was incidentally diagnosed in June 2019, at age 26. The diagnosis was made on the operating table.
It was discovered when I was 24, after a year off the pill. The more time passed, the more pain I had, and I started to cry when I had a bowel movement.
At 27 years old. In four years, my simple menstrual contractions became horrible and disabling pains, but I also discovered pains in my flank and when I defecate.
I was diagnosed last year, in October 2020 at the age of 24, following a pelvic MRI. I had been suffering from this disease for 8 years and was trying to find the cause of my pain.
At 24 I wanted to become a mother, I had no problem getting pregnant but on the other hand my pregnancy was very complicated, I had several placental abruptions, I had to be bedridden quickly because of the contractions but I still didn't know that I was ill. My gynaecologist at the time told me "you have a hyper-reactive uterus, that's how it is. "Despite many "it's your first baby, you won't make it without an epidural, childbirth hurts! "I made up my mind I didn't want an epidural. So I gave birth to my daughter without an epidural by choice, I wasn't afraid of the pain, pain had been a big part of my life for years, and I knew it couldn't get any worse, and I was right this birth was the same pain.
At that precise moment, I said to myself that it's been years, I've seen many doctors, they ALWAYS told me that there was nothing wrong with me, that it was all in my head, I'm not ill, I can't be ill!
What are the symptoms of your disease?
I suffer from very intense menstrual pain as well as strong intermenstrual pain. I have very heavy periods, pain during urination and defecation. Chronic fatigue is also very, very disabling. And very occasionally, I suffer from dyspareunia (at the time of ovulation).
My symptoms were painful, bleeding periods with an anarchic cycle. I had rectal pain during defecation, sexual intercourse was complicated with penetration and deep dispareunia. Intense abdominal and lumbar pain and sensations of electricity and lacerations in the vagina. Right rib and right shoulder pain.
Intense pain during my period, both in my lower abdomen and in my flank. I can't move except to cry, and it can wake me up at night and paralyse me. During my period, defecating is an ordeal as it triggers the pain. Of course the constipation that follows doesn't help!
It started around the age of 11. I was in so much pain that without strong painkillers I couldn't sleep. I have pain in my legs, lower back. I also have intestinal symptoms: diarrhea, constipation, nausea. Gynaecological symptoms, including bleeding during sex
They vary from month to month and from crisis to crisis, but mainly extreme pain in the stomach, lower back and legs. I literally burn my stomach every month with a hot water bottle on my skin, the only thing that gives me any relief... I feel sick, I can't eat because of the pain, I have violent nausea, I have to stay in bed for 24 to 48 hours. I have often had to leave work or university in a hurry...
In your opinion, have you been properly informed by the medical profession about your illness?
At the time of diagnosis and post-op, not at all. I was sent home the night of the surgery after spending 1 hour in my hospital room. I was bedridden for 15 days. I received no information about the disease and its management.
At the beginning, it is difficult to get information: you are told everything and its opposite. Since I have been in hospital, I know everything about my disease.
My midwife was great in terms of explanations, I really can’t complain.
After 8 years of medical wandering, I learned the most about this disease by searching on my own. It was the suggestion of this disease to my GP that allowed me to get a pelvic MRI for his diagnosis.
No, I learned about it on my own, by doing research.
Do you feel that you have had or are having good medical care?
Now that I've found the right doctor, I feel well taken care of even though the treatment is complicated to implement.
Absolutely, but mainly because I have selected people who are open to the subject (like with Gyn&Co) or specialists (with EndoFrance).
At present, thanks to personal research, I have been able to surround myself with specialists who know this disease, understand its implications and are able to offer me adequate follow-up and solutions to my problems. It took 8 years of medical wandering, as many doctors and different diagnoses, to find the cause of my problems.
No, after my diagnosis, I saw a doctor specialized in endometriosis who imposed yet another pill that I didn't tolerate any better than the previous ones. I saw him again after I stopped the pill and he told me that if I stopped the treatment I must not be in that much pain, and that in any case I had too few lesions for the pain I described. So I stopped seeing doctors because I'm tired of people not believing me.
Did you have a good psychological follow-up, or at least a good listening, or did you feel "abandoned" and isolated?
I did not have any psychological follow-up... But my fiancé is my biggest support.
On the psychological side, I was lucky enough to be well looked after, but the care in the hospital/medical environment was not very good. There are long periods of loneliness.
My midwife is very attentive to my anxieties and so is my partner.
The impact of this disease on my psychological state has been immense. Since October 2020, I have really started to live again. During these eight years, my distress was immense. I got up every day wondering if I would be able to walk all day. It is a state that is all the more difficult to manage when you are a teenager, trying to build your professional future.
No, no psychological follow-up, and a very long fight to make my entourage understand that if I am not always present at events it is not because I don't want to be there, it is because I am sick and bedridden... Fortunately I have an understanding husband and some members of my family who can help me if necessary.
What difficulties have you encountered or are you still encountering?
I find it difficult to feel legitimately ill. I don't really accept this status. I feel like I'm not strong enough. I have had difficulty in the last few weeks accepting the results of the MRI which show that the disease has progressed again, and quite rapidly.
For me, the major difficulty today is misinformation. All women with endometriosis have been told at some point (especially in the beginning) that it would be difficult to have a child if you could ever have one. It’s not true, it’s so not true...
Although I didn't want to go back to hormones because of my history with them, I had to have a hormonal IUD inserted. First of all, it doesn't reduce the pain as much as I had hoped, but it also affects my libido and my mood.
Medical difficulties due to pain and the lack of care. But also psychological difficulties in getting family and friends to accept this invisible disease. I still have problems getting people to understand that just because you look fine doesn't mean you're not ill, and this doesn't just apply to endometriosis.
Mainly the repeated absences since college, but especially during my year of M2 as a work-study student. It was difficult to be absent or to have to leave during the day. Also not being able to look after my children as usual on days when I am sick.
Is this disease a handicap in your daily life?
Yes, the pain and chronic exhaustion are very disabling.
Endometriosis can sometimes be disabling when the pain is unexpected.
When the pain is there, absolutely. Telecommuting helps a lot. I don't have to pretend I'm fine when I feel like I'm being chopped up!
This disease is disabling for me. When I have an attack, I can't walk for hours, I can't even think because of the pain. The endometriosis surgeon who diagnosed me assured me that this disease is not disabling according to him.
Not every day, but often yes, unfortunately. The pain is often there, it's not just one week a month... I frequently have to give up going out, traveling, I can't plan ahead.
Do you feel that this disease is taboo in our society?
Yes, hence my feeling of illegitimacy in feeling ill. I have the impression that society takes endometriosis as a rich girl's disease.
Endometriosis is not a taboo subject, or less and less so.
Everything related to menstruation and the female reproductive system in general is taboo.
I don't think it's taboo. I think some women are afraid to talk about these issues that are related to sex, femininity and fertility.
Yes, to some extent, but I also have the impression that the word has been getting out in recent years.
Do you ever talk about it freely in your circle of friends?
Yes, I am lucky to have people around me who are attentive to this.
I talk about it around me, because of my work with patients, and everyone around me is aware of it and supports me when I am not well.
To my family, yes, especially since I am not the first to suffer from it. My grandmother went through an ordeal, my family knows about it. My partner listens to me and is always willing to help.
I am very open about this disease with those around me for several reasons. When I am in pain, I want the people who are with me to be able to help me and understand what is happening to me.
Yes, I talk about it quite freely around me, especially now that I know it's not in my head!
Has it had or is it having an impact on your desire to have children?
At the moment we want children but are waiting to be married at the end of the year. However, the idea of having difficulties in having children scares me.
There is no doubt in my mind that I will have children, NATURALLY, I am so sure of it! It will take as long as it takes 1 month 6 months 5 years who knows? But it will come.
Not really, I know I don't want them right away. I am aware that I may have problems, but I also know from my midwife that she can help me access MAP if needed. And I am very pro adoption.
I resumed my search for a diagnosis at the beginning of 2020 following a desire for a child with my partner. Being well aware that the pill was helping me tremendously with the pain, I didn't want to stop it and be in distress without knowing what disease I was suffering from.
Of course, yes, I always wanted to have children quite young! 24 years old for my eldest seemed late to me, and I think that having my child young enough allowed me to have them relatively "easily". At 29 I had my second daughter, and my pregnancy was even more complicated. My husband and I had planned to have three children, but in the end we had to give up reluctantly because pregnancies are really too complicated.
If so, have you started to take steps to have children?
Since the diagnosis, our financial and professional situations have changed, so we decided to postpone the plan to have a child. I can say that the diagnosis also played a role, as the doctor who diagnosed me indicated that although there was a small chance that my fertility would be affected by the form of endometriosis I was suffering from, an operation would certainly be necessary before I could consider having a child.
No I was lucky enough to have two naturally, I would have liked to have a third but that is no longer possible.
Do you think you are under pressure from society?
The pressure from society comes from the fact that if a woman has a gynecological disorder that can affect her fertility, she is no longer a woman.
To have children? Yes, clearly! From my family, from nappy and pregnancy test adverts, from estate agents' remarks...
I don't think I'm under any pressure from society, although I don't deny that it can exist. However, I do get remarks like "when are you going to have a baby?" or "the next pregnant woman will be you" without even being asked if I want one.
Yes, for a lot of reasons. The absences I mentioned earlier, the "tired" look when I'm sick and don't make the effort to put on makeup, the refusal to take a pill to "relieve" myself, the fact that I don't always perform 100%.
Do you experience a lack of understanding from those around you?
Not at all.
Most people don't understand that this kind of diagnosis puts into perspective what is important in life, in this case having a child.
Yes, it depends on the people and the times. I often have the impression that I am imposing something on them or depriving them of something. It can be through remarks, through attitudes when I'm tired, and then even with a lot of good will they can't imagine what we go through. You can't understand a pain that you don't experience. I have also often heard "when you are young, you are not sick! »
Does endometriosis affect your love life?
My libido is affected, but it is also affected, heavily, by my stress; but my love life, no. I'm in a great relationship that doesn't let it impact me.
My partner and I have been together for almost six years, so he's been through most of the diagnoses. The disease has kind of brought us together. Going through hours of suffering with your partner holding your hand and not being able to do anything but be there, in our case, has strengthened our relationship.
Yes, already we can't plan anything, no trips, no weekends planned in advance, no surprises, we didn't even go on a honeymoon because of this, it was already a chance to be able to plan a wedding a year in advance without being sick on the D-day... And then, as it is often the case with this disease, intercourse is painful or can trigger pain, so it's often quite complicated...
If yes, what would you like to share on this subject thanks to your testimony to inform and make men understand this disease better?
Listen to your female companions for God's sake. If they say they are in pain, they are in pain, it is not necessarily normal. Find out how their bodies work, what it is like to be in pain. Find out how their bodies work, what it means for their sex life, their relationships, their work, in short, their lives. Don't make the discussion about menstruation taboo.
As in any illness or situation, the people around the patient and the partner are very quick to say "I understand what you are going through", "I know what you are going through", "tomorrow it will be better, you must not let yourself go". I'd like to make the non-patients understand that no, they don't understand. These pains are immense, the psychological weight of waiting for a diagnosis, and of the diagnosis itself, is immense. Not understanding is not a bad thing.
I don't really know, that we have to be understanding because we really suffer, that it takes a lot of patience and love to get through it but that we can still get through it, my husband has been supporting me for 14 years and we are happy despite the disease!
What arguments would you use to help and inform women who need support?
Above all, don't take into account what you hear in the world. Never forget that it is an illness and that we will never reproach a cancer patient for suffering too much, so why should we have the right to reproach ourselves?
Today, if I had to help, I would tell patients that whatever happens, they are beautiful and strong women. Endometriosis can be hard physically with the pain and psychologically for everything else (pain, invisible disease, incomprehension...), but nothing is fixed. Sometimes after having a baby, there is no longer any endometriosis, and certain pills and medications can stop the periods and relieve them for a long period. They need support: sophrology, hypnosis, osteopathy, massage, reflexology, psychology, nutrition, support groups. They are not alone.
Go to EndoFrance, look for associations, talk to midwives; they are not doctors and sometimes it's much better! Above all, if they don't believe you, go the other way: I promise you there are good practitioners.
When it is difficult to find support from those around you, it is sometimes useful to be able to talk to people suffering from the same disease. In my case, apart from my partner, it was contact with the EndoFrance association that made me realise that I was not alone in this ordeal.
We must not remain alone, we must be able to talk about it to people with the disease, to friends, to family or to a professional, it doesn't matter, but we must not remain locked up alone with our suffering.
These women testify that they wandered around before the diagnosis of the disease and that they often felt misunderstood and not taken seriously. On the other hand, it is striking to see to what extent they feel isolated and suffer from a medical follow-up that shows little empathy. The importance of associations is significant in the exchange and support. It is to be hoped that research will make great strides in this area from now on, as it is clear that the treatments proposed have changed very little in decades.
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