Last June, Sandrine Graneau (37), mother of three children and nurse in Loire-Atlantique, was amputated of her two feet and 18 knuckles following a toxic menstrual shock. Angry at manufacturers of hygienic protections, she wants to speak to prevent. To keep other women from going through the same ordeals.
Toxic shock syndrome (TSS) is associated with the use of intrauterine devices, mainly tampons. It is a rare but serious condition caused by certain strains of the Staphylococcus aureus bacteria. Its symptoms are very similar to those of the flu.
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When did you first hear about toxic menstrual shock?
I was a kid. I read the instructions for my mother’s stamp boxes. We didn’t have the phones in the toilets, so we read the instructions and the packaging (laughs). This is where I saw the term without paying more attention to it.
I did not specifically know the specific symptoms because on the packaging you are just told that, in very rare cases, there may be a risk of toxic shock. But it stops there. I did not have that much information and I admit that I did not ask myself the question either because when you read “anyway do not worry it’s super rare”, you are not looking further.
And yet it was something that scared me. In 2015, there was the case of the American model *, it made a lot of noise behind. But at the same time, we’re afraid of having a whole bunch of illnesses, but that’s not why they fall on us. Myself, when I had my toxic shock, I raised the subject with my husband, my doctor, and at the same time I did not believe it.
It is therefore a bacterium which is at the origin of toxic shock …
Yes and it is quite difficult to quantify because the staph is there, then it is no longer there. These are things present on the skin, on the mucous membranes, but which can start again. Today I don’t have staph, tomorrow I may have another one again. It’s something pretty arbitrary.
Tell us about the night of your toxic shock…
At first, a member of SOS doctors came and we talked about renal colic because I just had abdominal pain and no other symptoms beside it. Everything was fine except that I had a very bad stomach ache. My husband reminded me that I had discussed with him the possibility of a toxic shock, but we deduced that it was not that. It was even eliminated from the list of possible pathologies because I did not have a fever, I had good blood pressure, I was not vomiting, I just had a stomach ache and a family history of renal colic. So, in agreement with the doctor, we put that aside.
It lasted an entire night and I was hospitalized in the early hours of the morning. I saw a second doctor around 5 a.m. There, I had a fever, I was in low blood pressure because he could not even take my blood pressure. I was not transportable. When they put me on the operating table, I had a huge skin reaction, I was scarlet red and that’s a huge sign of toxic shock. Immediately, the doctor who was present said that it was one. Finally in my case, as soon as there were the symptoms, they knew right away that it was that.
“Above all, there is very bad information”
Are the efforts made to speak about this disease sufficient?
The problem is that women are often told: “if you have a toxic shock it is because you are using the products incorrectly”. Already, it’s super violent to take it in your teeth. Basically, you are told that you have no hygiene, that you are dirty, that you keep the protections for too long … I saw stuff passing on me (on social networks) where we say “at the same time if you keep your cup for 24 hours you should not be surprised to be amputated behind ”. People are not necessarily aware, but the subject passes very quickly on the issue of hygiene or misuse, when there is especially very bad information.
Do we have more information on the duration of protection wear?
On the menstrual cup it’s nonsense. From one manufacturer to another, one will tell you 4, 6 or 12 hours of wear … Some will advise not to wear it at night, others will say that it is ok. Some say to sterilize only at the start and end of the cycle, others say to sterilize each time you empty your cup. Everyone does their own thing, there is everything.
Can we doubt certain information which has mainly mercantile ends?
But completely! This is what is serious. I tell myself that today, we are putting the health of women at risk by making them believe that using the cup is revolutionary. That it will give you full freedom, allow you not to run after the toilet, manage all the flow of rules from the lightest to the most abundant. As a woman, it’s great when you are told stuff like that. Except that behind, ANSES had already carried out studies in 2016 and, in four years, many manufacturers have not questioned their advice on using products and continue to tell you: “you can keep it 12 hours “.
While the recommendation is 4 hours, 6 hours maximum. Some sites play the game well by comparing the different menstrual cups. They mark black on white that the time limit is 6 hours. I didn’t ask myself the question, I told myself that we are in France, that if we put such products on sale they must pass batteries of tests, that everything is checked. And in fact we learn one day that brands do what they want …
“I trusted like millions of women …”
Why did you go from tampon to cup?
The pads weren’t enough, it was leaking all the time. In addition, my professional activity prevented me from going to the toilet when I wanted and I needed a solution with a better capacity. I also had periods that lasted 10 to 14 days … I think it was a factor in the development of the infection because I was wearing my cup a lot. Even if you take it off, rinse it off, soap it up, it’s still worn for days and days inside you. I trusted like millions of women …
We always have the notion that the tampon is really associated with the risk of toxic shock. And there is also an amalgam with the fact that it contains chemicals. There have been studies that have been done, the famous report on France 5 (“Tampon, notre enemy intime”).
We will have to change the ideas that women have in mind. There is no compulsory census, doctors are not obliged to report if it is pathological. In 2017, there were 24 cases in France. In fact these are the ones identified and we do not know the number of women who suffer a toxic shock.
What advice would you give your daughters?
To my two daughters, when the period comes, I will tell them to use the protections when they really need them. Punctually. Behind, you put something else, there are disposable, washable sanitary napkins, menstrual pants.
What is your state of mind today?
Lots of things are jostling. I want to make an appointment with the animators who took care of me so that they re-explain to me all the stages of my illness, what happened, all my care, because I do not understand everything , I was unconscious.
After that, I’m very much in resilience, that’s how it is, so I’m moving on now. My priority is my rehabilitation, my reconstruction. And I find it easy to accept major changes in my life. I only got angry recently. By starting to reread, to search the Internet for advice on wearing the cup, when the ANSES report was released.
Since I became ill, I have been asked why I am not complaining. For me, that was part of the risks, it fell on me, it’s like that. Now that I know it’s been four years since it’s been 4 hours and not 12, I’m really mad at the manufacturers and the resellers. Among these, some manage to put you wearing advice different from that of the manufacturer. The cup I was wearing, the manufacturer had marked 8 hours and a French dealer had marked 12 hours. That puts me in a rage that you can’t even imagine. We laugh at ourselves and put our health at risk. This is what I see! There will be more and more if we do nothing and it is not taken seriously. If we do not put a legal framework, do not impose clear and precise notices, do not do prevention, it will turn into a disaster. My rehabilitative doctor said it to me: “Women like you, disabled, we will have more and more. Because before you die. Now we save you, but in what condition ”. If no one in the upper echelons decides that there are specific rules, there will be more and more dead, disabled women. We play with our health to make money. There are no other words. Because it remains a business.
Isn’t it possible to get together to start legal proceedings?
I quite agree with the principle, but then you have to start it up and there it is complicated. Several women ask me to do this or that … I, today, am the mother of three children. It has not been a year since I was amputated, I am just starting to leave my house to walk, I do not have the shoulders broad enough to carry that. I have neither physical nor mental strength because I am also recovering. It’s a real reconstruction.
Yes, something has to be done, but I can’t be the leader there right now. I would also like us not to rely on one person. Let everyone try to find leads. I want to make history evolve. And I want to participate in it concretely, but how?
*In 2012, the American model Lauren Wasser suffered a toxic shock. At the time, this story had brought to light this syndrome.
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