post-TSS cup use

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25 March 2013 @ 05:09 am

I am currently recovering from Toxic Shock Syndrome. (Yes, it really happens. Yes, it was caused by a tampon. Turns out you can get TSS from a brand new tampon, no need to wait 8 hours!) I need to get a menstrual cup within the next week or so, and the TSS means that I have more concerns than most people. I realize that I'm rushing into this all kind of short notice, apologies.

I have been meaning to switch to menstrual cups for years but never got around to it, which I now obviously deeply regret. It's now officially time to switch to cups, as tampons are now strictly forbidden and I abhor everything about pads. As such, I need to have the right cup before my next cycle, and won't have any other options should I have chosen the wrong one. After much research, I am currently leaning toward a small Lunette Selene, primarily because I believe I have a low cervix and I like pretty colors.

While I am worried about the fit, my main concern is my health. TSS has a very high rate of recurrence and I would like to avoid another trip to the ICU if at all possible. So what I'm looking for is:

any anecdotal evidence about Lunette/other brands & health (tendency toward infections, difficulty cleaning a particular style, a cup that chafed, et cetera) that might indicate that a certain kind of cup is less safe for a TSS survivor (for instance, I am extremely wary of hollow-stemmed cups)

advice for hyper-vigilant cleanliness when using cups (storage in particular--those bags are cute, but they don't seem safe for me) as what is clean enough for most people is probably not clean enough for my body

thoughts on wearing medical gloves while handling and using a cup (the skin on my hands is peeling severely as a result of the TSS) and whether that might make things more difficult

any other advice you think of that I haven't had the foresight to request

and finally, if anyone here also happens to be a TSS survivor (or has a compromised immune system that requires a similar level of paranoia) your input would be especially appreciated

I got the impression that none of my doctors had ever seen a TSS case before (though I do know they were consulting with the national expert on it) and they could give me very little advice beyond agreeing with me that menstrual cups were a good idea but that I should still be on a constant watch for recurrence symptoms, and be extremely careful with my cup. So this is me, being careful and crowdsourcing information to create a regimen for myself. I know there is inevitably some risk even with cup use, but hopefully with your help I can avoid becoming the first documented case of cup-related TSS. Nobody wants that.

Me: I'm 23, I'm not a virgin, I'm not currently sexually active because it's hard to feel sexy when your reproductive organs have just tried to kill you, I live in the US. I'm very tall and very slim, and prior to my TSS I usually got my exercise by walking a few miles a week and occasional yoga, which some cup manufacturers seem to care about? I can only afford one cup right now as I had to take a few weeks off work for my time in hospital and post-hospital recovery, otherwise I'd probably buy three and Goldielocks the situation.

Cervix: I believe my cervix is low because it's not too difficult to reach, and it seemed like sometimes my tampons were pushed in past my cervix so that a portion at the top didn't get bloody.

Flow, etc: I used to have extremely heavy periods, but a few years of HBC use rendered them manageably heavy, say one super plus in three hours at the peak followed by a super every four to six hours for a while and then tapering off very quickly, all told usually lasting just two to four days. (Despite my heavy flow I'm rather set on a small size cup because I'd rather make more frequent trips for a smaller volume cup for my health's sake--if I'm mistaken in my research and should be using a larger cup because of a heavy flow, please let me know.) I used to have inhumanly painful cramps, but after taking and then discontinuing use of HBC, my cramps are down to the level where I can at least still do my coursework while on prescription painkillers, which is a major improvement. Basically, all of my reproductive muscles are Beast Mode strong.

TSS: I'm open to answering any questions anyone may have about my experience with Toxic Shock Syndrome. Seems only fair. I'm kind of like a unicorn and there's a lot of misinformation out there that I'd love to shut down.

Tags: disabilities & health problems, health risks

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knittinggoddess on March 25th, 2013 01:19 pm (UTC)

I don't know anything about TSS, but I can speak to the cleanliness. Boil it. Store it however you want (though not in an airtight container unless you're 100% sure it's absolutey dry), then boil before use. Many cups have been lost by boiling in too-little water, so be sure to use a big enough pot with more than enough water, and watch over the whole thing. You can also just pour boiling water over it in another cup. Clean out the holes by squeezing water through them (someone else can explain). You can also use rubbing alcohol. Silicone cups are medical grade silicone, so you can sterilize them completely. Just don't flame them like a needle!

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lauralaitaine on March 25th, 2013 01:26 pm (UTC)

TSS sounds horrid - I'm so sorry you're going through that. I hope cups work out for you.

I can't really comment on any of your main questions (sorry) but I would have thought that getting a larger cup would be better if your flow is heavy. You can still check it just as frequently, but it will hold a little more - just in case.

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opal581 on March 25th, 2013 01:46 pm (UTC)

I have a light flow and low cervix, and love my large fleurcup. I got clear initially, but I want to get colors (I am currently pregnant, so I won't be buying more cups until my period comes back). I found the stem irritating, but was able to trim it easily and the grip rings don't bother me (though I read here that they can be filed off if they irritate you). I have no experience with the lunette, sorry.

To speak to your thoughts regarding glove use. My fleurcup is a matte texture that is usually dry on the outside when I remove it. I use gloves extensively at work and if you use them, I would suggest nitrile gloves as they have finger grip bumps and are not slippery like vinyl ones.

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kuradi8 on March 25th, 2013 01:57 pm (UTC)

A cup is as hygienic as the person using it.

If you're looking at the large Lunette, also consider the large Fleurcup. It has similar dimensions, a slightly different shape and is a squishier cup than the relatively stiff Lunette. Personally, I like the stiffness of the large Lunette because it's easy to pop open and seals securely but sometimes it can feel like a bowling ball especially on my extra-sensitive BLECH days. I wonder if the softer Fleurcup wouldn't be more comfortable on those.

If you're considering the small, then they are both pretty similar in squishy-ness.

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v_veronika on March 25th, 2013 02:35 pm (UTC)

I would not use a small cup for the flow you are describing. You can still empty the large cup just as often as you would a small, but removal will be easier and less messy if the cup is less full. A less full cup also means the chance of your body coming in contact with the blood collected in the cup again during removal is smaller, especially while you're still learning to use the cup.

I don't know how low my cervix is, but I had the same experience you describe with the tampon tip not getting bloody, and the large Lunette works well for me. I also tried the Fleurcup, which is softer, but I'm still learning how to get it to pop open. Since you won't have much time to practice, it might be a better idea to start with the Lunette.

As for storage, I think it's best to store it in the pouch and boil it before and after every period. Never store your cup in airtight containers. You can also disinfect the cup and your hands with disinfecting wipes (Lunette makes their own brand) or rubbing alcohol during your period.

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noteasy2begreen on March 25th, 2013 02:42 pm (UTC)

I'm so sorry you had to deal with TSS. I wonder if you've heard of the organization You Are Loved? The founder's daughter died of TSS, and she's made it her mission to educate people about TSS. They often feature personal accounts, and I'm sure they'd love for you to share your story.

I can't remember where I read this, but I know someone was saying that people who have had TSS should not use internal products. If your doctors think it would be fine, though, I'd take their word for it. Silicone is an inert substance that does not encourage bacterial growth and doesn't shed fibers, so there are lots of reasons why a cup would be safer than tampons. Still, I might wait a cycle or two before trying to use an internal product.

I have a Lunette, and Lunettes are one of the more established brands, so they might undergo more rigorous manufacturing standards than, say, some of the cups made in China. They are nice quality, medium firm, medium length cups. Holes are smallish, but not particularly hard to clean. I soak mine in dilute hydrogen peroxide between uses, sun to deter stains, and boil every couple of months. You would probably want to boil at the end of every cycle. Haven't heard of health issues associated with any particular cup. I don't know if gloves are necessary as long as you wash your hands; the grips on the Lunette are not extremely pronounced and might be harder to grab on to with gloves.

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lvetodaylez on March 25th, 2013 03:33 pm (UTC)

So sorry you had an experience with TSS.

I've read that boiling can reduce the life of your cup.
I think soaking it in vinegar and water would be just fine to disinfect it without compromising the integrity of the cup.

I think the chances of you being the first cup-related TSS case are very low. I would suggest common-sense things: washing your hands before inserting your cup, cleaning your cup with a solution (maybe vinegar and water) before reinserting, and emptying your cup regularly. Of course, I realize cleaning your cup with a solution would probably be best handled at home but maybe as an extra precaution you can take the solution with you. If you have a medium or large purse, it shouldn't be a big deal.

Best of luck!

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knittinggoddess on March 26th, 2013 12:55 am (UTC)

Vinegar and water is great for de-stinkifying, but it's not terribly fantastic at sterilizing. The op might prefer rubbing alcohol with a good rinse or even hydrogen peroxide, though I read on menstrual_cups that a materials scientist advised against hooh and silicone.

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knittinggoddess on March 26th, 2013 01:03 am (UTC)

I partially retract that based on this: http://www.merckmanuals.com/vet/pharmacology/antiseptics_and_disinfectants/acids_and_alkalies.html
Though keep in mind that white vinegar is already only 4% solution. Most of what I'm finding concerns paracetic acid, which is what acetic acid and hooh make, so not just straight regular vinegar.

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pascallewest on March 25th, 2013 04:00 pm (UTC)

I'm sorry about your TSS... My mom got TSS from a tampon before I was born. She got very very sick and had to go to the hospital, etc. She had no recurrences of it, even though I think she did use tampons again eventually.
Some cup companies only make clear cups because they aren't sure what kind of effects the color particles will have on our bodies. Many people think is has no effect at all. If it were me, I would probably play it safe and choose a clear cup.
I agree with one of the other commenters that regular storage pouches would be totally fine as long as you make sure to boil it before your period, and wash the pouches periodically using a detergent that is free of all harsh substances. I would consider washing your undies with the same detergent too, just to be safe. I use Country Save but there are others out there. Here is a link from a cloth diaper website about which detergents have what: http://www.diaperjungle.com/detergent-chart.html. you might also consider cloth pantyliners as cup backup.
Gloves.. I am probably one of the few people who use them to insert/remove my cup. I have the tiniest bump on my finger that I am paranoid may be a wart, so I use gloves. I am sad about the waste it produces, but I feel I have to do it. I don't have any problems as long as the gloves fit me and the cup has ADEQUATE GRIP RINGS. The US Moon cup was extremely slippery with the gloves, but my Fleurcup is awesome and no probs there. Be aware that gloves are another thing that you are going to have to keep super clean and sterile since they will be going inside your body.

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skysos on March 29th, 2013 12:28 am (UTC)

Just curious - have you tried inserting/removing with your other hand? I had to do that when I had a bandaid on my index finger of my dominant hand for a day or two. No way was I sticking a finger with a bandaid on it in my vagina...so opposite hand was the only choice. It was actually not that hard to remove the cup with the opposite hand. Inserting was trickier, but I did manage to do it. I'm sure it would have gotten easier with more practice.

Edited at 2013-03-29 12:29 am (UTC)

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kathlyne on March 25th, 2013 04:35 pm (UTC)

I'm going to agree with v_veronica and suggest a large cup for the flow you describe. I can't think of any reason a smaller cup would be safer than a larger cup. You can empty the cup as often as you like with less risk of leakage or overflow. I also could soak a super plus or ultra tampon in 3-4 hours and I empty my large cups about every 3 to 4 hours on my heavy days. If you had a smaller cup you might be in the restroom every 2 hours.

I love my large Lunette. The holes are so much easier to clean and less likely to clog compared to my large Diva and large Yuuki.

I understand why you want to wear gloves right now. Just understand that gloves out of a box are not sterile. Getting everything completely sterile is impossible. And your vagina isn't sterile to begin with. Aim for clean. Go for the nitrile--they have that extra texture.

Best of luck. Let us know how it goes.

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mood_swinger23 on March 25th, 2013 04:42 pm (UTC)

In case you haven't already seen this:
http://www.lunette.com/index.php?id=12
There have been no reported cases of TSS from the use of menstrual cups reported since cups were invented in the 1930's. I would assume that goes for survivors as well.

The Lunette has a tab style stem, meaning it is NOT hollow. The Fleurcup also has a tab stem, as do some others. Note also that with any cup, you can cut a stem completely off. There is some imprinting on the Lunette that could be of concern (versus a cup that maybe has nothing imprinted on it whatsoever), but I've never had a problem with it.

I have a small Lunette, and the thing that I don't like about it most is the holes seem to get clogged easily.

Cleanliness: Linen is supposed to be a special fabric where bacteria is VERY hard to grow within. So linen bags are often recommended for storage. Otherwise, you can boil your cup, but as someone said it could decrease the lifespan of it somewhat, so you could use vinegar instead, OR, some people use and recommend Milton disinfecting tablets.

I'm not sure about the gloves. Are you hands supposed to heal eventually? I don't think gloves are needed to prevent the spread of bacteria, if you wash them before you put your cup in, but if you're worried of your hands peeling on the cup then you may want to to be on the safe side.

For comparison photos of various cups (to see stem style and such), you can go here:
http://menstrualcups.friendhood.net/f52-moderator-s-photo-library

And in case you don't already know of, there is sizecharts.livejournal.com for comparing sizes.

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bad_pixie_000 on March 25th, 2013 05:55 pm (UTC)

I read a blog post 7 or 8 years ago from someone who got TSS while using a cup. I think it was a Mooncup but I don't know if it was the UK or US brand or if design/material even matters. Due to the recurrence rate you mention she was advised not to use a cup or tampons again. That's the only case I've heard of, and of course I can't remember the URL.

I love my cup (Lunette and previously a UK Mooncup), and in any other circumstances I'd recommend them wholeheartedly, but I thought I really should mention having read this experience!

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juliiie87 on March 25th, 2013 09:54 pm (UTC)

I second You are loved.org, and I think that's where I read TSS survivors shouldn't use internal products ? Anyway, I agree with the docs that cups are nothing like tampons, which are basically scratchy, fibery nests for bacteria. Health benefits have been a huge factor in my switch to reusable menstrual products. If you've ever concerned about internal products altogether, you might want to give cloth pads a shot, just like cups & tampons they are very different from disposable ones, in fact I think they are quite nice, cute and luxurious feeling, if you can get over seing blood when you wipe (yeah, that's happened to me recently while wearing them...weird I know).

Onto cups... I'm with the people who sugested a large size. Sounds like you have a heavy flow, even more so if you happen to go off hbc in the future for some reason, so a large cup will definitely buy you more time. That doesn't prevent you from emptying and rinsing your up every hour if you want to. In fact it might be a good idea to empty more often than the maximum recommended time (12 hours), and it sounds like you might need to anyway.

Tampons used to go past my cervix too back when I used applicator tampons, but I'd say I'm medium length rather than really low (about 2 inches). The usual recommendation is to get a feel for your cervix while on your period and use your finger as a ruler to determine what would fit you best. In any case, if you think your cervix is low, and given you have a heavy flow, the classic recommendation would be a large Fleurcup OR Si-bell. I'd like to put a vote for the latest, because it very similar, but somewhat softer than the Fleurcup. I believe softness helps most make a cup comfortable, regardless of its size, because that means it'll put less pressure against your nether regions. I'd hate for a cup to somehow worsen your already bad cramps. But that's just my rec. Use the charts (go by actual dimensions, capacity & stiffness) to make your decision : http://sizecharts.livejournal.com/
http://menstrualcupinfo.wordpress.com/cup-stiffness-comparison-chart/

Edited to add : Harsh cleaning methods are more likely to cause an inbalance of your flora and trigger a vaginal infection, but vinegar, diluted peroxide and boiling should be safe enough for both you & the cup. Most soaps are ok, the more natural the better, you don't really need those perfumes and additives in your most sensitive parts, but as long as you rinse it off well you should be ok.

Edited at 2013-03-25 10:10 pm (UTC)

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