Keeper.com’s Interview with Suzan Hutchinson, Director of Connectivity for you-are-loved.org, and a long-term survivor of Toxic Shock Syndrome.
Listen to the interview:
Suzan developed TSS in the 1980s, as a result of using Rely tampons. Many women died from using these very absorbent tampons. Suzan teamed up with you-are-loved.org, after learning about this non-profit organization, which was created by Lisa Elifritz, to raise awareness about Toxic Shock Syndrome, after her daughter Amy died from the disease from using tampons. This interview with Suzan was conducted by Julia Schopick, Marketing Director for The Keeper/Moon Cup Company. The first eight minutes (background material) will be told in narrative form, with some quotations; the rest will be told with direct quotes. This audio is best listened to with Firefox, Internet Explorer or Safari. SHOW NOTES: The numbers on the left refer to minutes. So “00:00 to 6:30” means that this segment occurs for 6-1/2 minutes, from the beginning of the audio.
00:00 to 06:30: Background
Suzan was 21 years old, working full-time. Procter and Gamble sent her some information—really “a solicitation to try their product”—along with some samples of Rely tampons. Rely promised that their tampons would last longer—which they did. Suzan eagerly tried them. In the beginning, she was pleased with these new, more absorbent tampons, because they lasted a lot longer than the ones she had been using. They also absorbed an amazing amount of menstrual blood. At first, she had less worry. But by the end of the second day of her period, she noticed that when she removed the tampon, as she puts it, “it hurt. My vagina felt sore. The inside of my vagina felt really, really raw.” When she inserted the next one, it was painful. It concerned her a bit, but she didn’t really worry about it. But on the third day, Suzan woke up vomiting, and with a fever, chills and a very sore, swollen throat. “I was so weak, I couldn’t even get out of bed without my husband’s assistance.” She also had diarrhea, her chest hurt, and she was dizzy. She thought she must have the flu. She called her doctor; he told her not to be concerned, that she just had a stomach virus or the flu. He prescribed a suppository to calm her stomach and stop the vomiting. But all it did was make her sleepier. She got sicker and sicker. Her fever climbed, and her back and muscles and joints hurt. She knew this was no stomach bug. And she really doubted that it was the flu. “I’d had the flu before and it was nothing like this.” By later that day, Suzan was in really bad shape. She had developed a rash and her skin was flushed. When her husband helped her into the bathroom, she almost fainted. “I knew I was in bad shape.” Then she remembered that she hadn’t changed her tampon since the night before. She removed it and placed a pad instead of another tampon. She called her doctor back and told his office how very, very sick she was. Again, they assured her that nothing was wrong; that it was probably a virus and to keep herself hydrated, go back to bed and let it run its course. But her fever continued to climb through the night, and she was feeling bad all over. “I just moaned.” She couldn’t keep anything down, she got dehydrated, and her kidneys stopped putting out urine. “To be honest, I don’t remember the next day at all. At some point in my sickness, the dry heaves stopped and my fever started to drop.” Suzan was out of work for over a week, and she suffered fatigue and joint pain for many weeks afterwards. It took a long, long time for her vagina to finally heal from the damage the Rely tampons caused. For her next period, she had to use pads. She couldn’t use tampons because her vagina was so sore and swollen. Then, she noticed something really, really odd. “My fingers and my toes peeled. I’d never had anything like that before after I’d had ‘the flu.’” When she went to her OB/GYN for her next scheduled appointment, she told him that she had tried a new tampon. He asked how she liked them. She told him they were okay; that they were Rely tampons; that they did what they said they were going to do, but that they also made her very sore and very sick, and she wasn’t able to finish her period with them because her vagina was just too sore to use them. He really got interested. “I wondered what the big deal was. He checked me well, and wrote down everything I’d told him.” He also did blood work. “He called me a few days later and told me I should never use tampons again; that what I had had was Toxic Shock Syndrome. He and that I could very well have died from it.” She says she was “just totally shocked.” It wasn’t long after that that she started hearing about Toxic Shock Syndrome on the news; there was no Internet back then—just TV and newspapers. It was all over the news about young women who had used Rely tampons and who had developed Toxic Shock Syndrome from them and had died. She says, “You can’t imagine the shock I felt, the horror, that I had developed Toxic Shock Syndrome using these tampons and could have died.” But she didn’t stop using tampons. “I just used them smarter. But there really is no way to use them smarter. Women just shouldn’t use tampons that are synthetic. It’s not a safe thing to do at all.”
06:30 to 08:00:
It’s been 30 years since Suzan had Toxic Shock Syndrome and, to this day, she has physical problems that she deals with. She wonders if there is a relationship between the Toxic Shock Syndrome and these symptoms. She has talked with other women who had Toxic Shock Syndrome and they, too, have some long-term effects that they suspect are related. Among the symptoms she has today that she thinks might well be a result of her Toxic Shock Syndrome are:
- Chronic Fatigue
- B-12 deficiency
- Arthritis – not osteoarthritis or rheumatoid arthritis. They don’t even give a name to it. “They just say it is some form of arthritis, and they don’t know what causes it.”
- Aches and pains that don’t seem to have a reason
- Lots of food allergies
- Chemical sensitivities
The older she gets, the more sensitive she becomes to chemicals, foods and additives. She is very limited as to what she can take into her body because her body can’t deal with any more. No one else in her family has these conditions, so she thinks they could be a result of the Toxic Shock Syndrome.
08:00 to 08:75
(From here on out, the interview is told using direct quotes.) Julia: Suzan, do you think that, if your doctor had not thought of toxic shock as a reason for your symptoms, and if you hadn’t made it a point to tell him about them, you might never have known that you’d had TSS? After all, you didn’t end up in the hospital with these symptoms, and somehow your symptoms went on for a long time before they resolved. Suzan: True. I had lingering infections and fevers for quite a while, and no one knew why.
08:75 to 09:25
Julia: I bring this up because so many women might have had Toxic Shock Syndrome and never known it, because they didn’t end up in the hospital, and they didn’t have total organ failure—all the classic symptoms of toxic shock. They didn’t have them. So there are probably many, many more women who have had TSS than the doctors and the CDC (Center for Disease Control) know about. Would you agree that it’s probably a larger problem? Suzan: Yes.
09:25 to 10:30
Julia: Rely tampons are no longer sold; they’ve been taken off the market. I know you’re active with an organization that is trying to make women and health professionals aware of toxic shock. Is this really necessary? Hasn’t toxic shock gone away? Suzan: No, toxic shock has NOT gone away. Women and girls and teens are getting toxic shock now. . . still. And the health professionals are not really up on it. They don’t always recognize it when they see it. The first thing health professionals should think is, “Is she on her period? And if she is, has she worn a tampon within the last month? Or is she wearing one now?” But they don’t think about that!
10:30 to 11:00
Julia: So girls can go into the emergency room with all the classic symptoms of TSS, and even have a tampon in and the doctors don’t even think of toxic shock? Suzan: Right, and neither do the nurses. I assume it’s a lack of training or awareness, and I don’t understand it, because they should be our first line of defense as far as recovery from toxic shock, or, if not recovery, then diagnosis of it.
11:00 to 12:00
Julia: Suzan, please tell us a little bit about you-are-loved.org and why you decided to join and get active. Suzan: I heard about you-are-loved.org several months ago and knew that they were looking for someone who could volunteer time, and I had a lot of time. And the fact that I had toxic shock in the past really brought this home to me because I was surprised to learn that toxic shock was still an issue. I knew that tampon companies were required to place a TSS warning on tampon boxes. I also knew that in the tampon box there was a little brochure that warned about toxic shock, and that the outside of the box contained a warning as well. But I did not know that women and girls were still dying from toxic shock. That was a total shock to me. And all these years, I have been advocating tampons. And I thought about all the teenagers, all the young women I had taught to use tampons. I wondered how many of them over the years had developed toxic shock.
12:00 to 12:30
Julia: Why were you advocating tampons? Suzan: Because I didn’t know anything else. You don’t find ads very often about menstrual cups. I know that we have disposable menstrual cups now, and you see ads sometimes about them. But women didn’t talk about menstruation, they didn’t talk about their periods, and they didn’t talk about tampons or pads—unless they were caught out someplace and needed one.
12:30 to 12:45
Julia: And then I guess you read about Lisa Elifritz’s story? Suzan: Yes, I heard her story, and I knew that I could not remain silent. I needed to speak out and raise awareness and do all I could to help out. When I read about Amy and her death, and about Lisa’s loss, it absolutely broke my heart because these young women are still dying.
12:45 to 13:30
Julia: Why is it that younger women seem to get toxic shock more often than older women? Suzan: Older women have been around for a longer period of time, and have been exposed to things. We have already developed antibodies to various things. But younger women don’t have these antibodies and their bodies are fragile in this respect. So they develop this bacterial infection and it invades their body because there is no resistance.
13:30 to 14:30
Julia: Amy Elifritz was 20 years old when she died of Toxic Shock Syndrome. Please tell us a little bit about her. Suzan: Amy came down with what they thought was the flu. She had some fairly mild symptoms—nothing major, nothing that would really cause anybody any concern. She had an upset stomach, and just wasn’t feeling well. She did what you’re supposed to do when you have an upset stomach: She drank Sprite or Gatorade or something to try to settle her stomach. But she became much worse and within just a few days she was dead. Lisa took her to the doctor’s office and they knew that she was in bad shape—her system was shutting down—and they put her in the hospital (in the ICU), but they weren’t able to really do anything for her.
14:30 to 15:30
Julia: When I spoke with Lisa Elifritz, she made it very clear that her daughter knew how NOT to abuse tampons. She didn’t leave them in too long and she obeyed all the rules. This is the reason, I think, that you and Lisa and you-are-loved.org are so passionate about getting the word out that women should not be using tampons—and especially these synthetics. It’s rayon in the synthetics that is the problem, isn’t it?
15:30 to 15:45
Suzan: Yes, it is the rayon. Viscous rayon. Amy was using regular absorbency. She was changing them like the instructions in the box tell you to do. She was a “hygiene freak.” She was very careful, and yet she got toxic shock and she died.
15:45 to 16:30
Julia: I find it amazing that it is 30 years after you’ve had Toxic Shock Syndrome and you are on a mission with Lisa Elifritz, and it is very, very impressive that you care enough about other people. I find it very moving that you and Lisa together are working to get many, many, many changes made. Please tell about the changes you want to have made. I know that some of them involve speaking to school health classes. But please tell us more.
16:30 to 17:00
Suzan: Lisa goes to schools in her area, and speaks to the students about the risks of Toxic Shock Syndrome. She shares Amy’s story and tells them that there are other options available besides the traditional tampons with rayon in them. We also have Carolyn Maloney’s Tampon Safety Act that we would love to see passed in Congress.
17:00 to 17:50
Julia: You know, Carolyn Maloney has tried to get the Tampon Safety Act passed several times already. Suzan: Yes, it has been thrown out for the last thirteen years! Julia: It’s kind of pathetic, isn’t it? Suzan: Yes. Where are all the women who should be concerned about this? Julia: I think that Carolyn Maloney was once quoted as saying that, if this were a man’s issue, that bill would have been passed. But she keeps trying. I think that, with your help, and with Lisa’s help, she might actually get it passed. It’s called the Robin Danielson Act, but I hope that maybe they’ll change it to the Amy Elifritz Act. I’m not sure they can change the name, but it would be great if they could.
17:50 to 18:50
Julia: I know that you and Lisa want to get notices in EVERY Emergency Room that (Lisa says) would say, “If a girl comes in with flu symptoms, conscious or unconscious, check her for a tampon. If there is one in, take it out. It could be toxic shock.” I love that because the kind of symptoms that you have described, that Amy had—they could just be flu. And this is the bad thing. Emergency rooms are so busy, with people running around. So when someone comes in with the flu, they wouldn’t take it too seriously. But if it’s toxic shock, they’d better move fast. How do you think we can get notices in all emergency rooms?
18:50 to 19:20
Suzan: I don’t know. This is an area I lack wisdom and experience and knowledge in. I wish I knew how to go about raising awareness—talking to doctors and expressing to them the need for this. Telling Amy’s story, and making people aware. Do you have any suggestions yourself?
19:20 to 21:00
Julia: I’ve been thinking about this and I love what you said about nurses because there are associations of holistic nurses and holistic doctors. I may be able to connect you with one of the holistic nurses’ associations. Maybe we should approach them and ask their opinion about how to spread the word about this. I know that you and Lisa both feel that you don’t have years and years to go through bureaucratic hoops. For all of you out there, who want to visit the You-Are-Loved website, it’s you-are-loved.org. On Keeper.com’s website, I’ll have show notes with this interview and I will have a link to it there, as well. Also, on the you-are-loved.org website, there is a story by a mother who talks about losing her daughter, like Lisa did. But there are also stories by survivors. I urge people to look at these true stories. You said that you used to recommend tampons and now you don’t. What do you recommend that women use for menstrual protection?
21:00 to 21:30
Suzan: There are several things. They can use 100% organic tampons—no rayon. Menstrual cups—there are reusables and disposables. There are pads out there that are very absorbent, and there are even cloth pads. Tampons are NOT the only thing that’s out there.
21:30 to 22:20
Julia: A lot of the people out there who are interested in health, like you are, and like Lisa is, are also interested in environmental topics. We always tell people that the cotton tampons are much less likely to absorb, but it’s better for the environment not to use any disposables. Keeper.com and MoonCup.com are on a mission to get women to use reusables. And by the way, companies like GladRags make very nice reusable pads, as well. So we’re not saying that only one thing is the answer. But it seems like it’s time that we did something like the Stop Smoking campaign. That worked.
22:20 to 22:30
Suzan: We’ve got to stop listening to the tampon companies when they do their ads. They make it sound like a tampon is a woman’s only option. It’s not their only option. There are better options out there, as far as I’m concerned.
22:30 to 23:15
Julia: The companies that make the tampons are rich. They have tons of money. You can’t go for an hour on television without seeing an ad. But online promotion is wonderful because there you don’t have to pay big bucks. We have a Keeper Fan page on Facebook. We invite people who are listening to this interview (or reading this transcript) to become FANS of our page.
23:15 to 23:20
Suzan: We have a Facebook fan page, too. It’s called “In Loving Memory of Amy Elifritz”. We’d really like people to join our group, too.
23:20 to 23:45
Julia: We’re working on getting the word out online. But we certainly don’t have the money that Procter and Gamble has. The menstrual cups are made by women for women. And reusables save on the pocketbook, too. But it is harder to get the word out there. I’m hoping that you will want to go on lots of radio shows, because you’re really good.
23:45 to 24:30
Suzan: Let me share something with you that happened today. While volunteering at a local primary school, a teacher and I were talking and the topic of menstruation came up. She said her period often starts when she least expects it. Immediately red flags went up. I said, “You know not to use a tampon before your period starts, just in case. That’s not a good thing to do.” And she said, “Well, what can I do?” And I said, “There are menstrual cups out there. Would you like me to get you some information?” And she said, “Sure.” I got so excited, because I thought about you.
24:30 to 25:20
Julia: It’s great how you’re finding new opportunities to get the word out there. I know that Lisa goes into the schools, and I know that you are hoping to go into schools, too. You’d be wonderful in schools; you have a personal story to tell. We’d love to have fliers for you and sample chains to show. Once women learn how to use a tampon, using a cup is not that different. With both, you are putting something inside. Suzan, is there anything else you’d like to add? You’ve been so informative.
25:20 to 25:30
Suzan: I’d just like to tell women and girls, “Don’t put yourself at risk. Don’t buy into what most tampon companies are selling. Take care of your body, and invest some time and explore safer options than traditional tampons.” Also, if you’ve ever had toxic shock, please, never ever use a tampon again.
25:30 to 25:40
Julia: Do the tampon companies say that? Or no? Suzan: You know, they used to. I can’t speak for current pamphlets right now. I don’t know.
25:40 to 26:00
Julia: Was it you or Lisa who said that, with drug ads on TV they always give the side effects? Not with tampon ads, though. Doesn’t it have to do with its classification—i.e., that tampons are a medical product and not a drug?
26:00 to the end
Suzan: Right Julia: Suzan, you have been so, so informative. We’ll put your interview on Keeper.com, both as an audio and as a transcript. I think that hearing your voice and hearing your story is so much more effective than reading about it, though. That’s why I’m hoping that you’ll go on radio shows. I will share names of shows with you and with Greg Smith, who works with Lisa to get promotion, to get the message out there—and to talk about “don’t EVER use these things!” and to tell women what the side effects are and what to look for. You’ve been very, very informative, Suzan, and you were a pleasure to have on. Suzan: Thank you, Julia. It’s been fun.