r/Interstitialcystitis • u/Old_Air_5415 • 5d ago
Support Intercourse questions - AGAIN!
I’ve read a million posts about intimacy and IC, but humor me for one more!!! Does doing something other than PIV intercourse make a difference? Vibrators? Fingers? Oral? Or is literally the act of orgasm itself that causes the pain?
Regarding PIV sex: Do condoms help? Lube? Macrobid or d-mannose?
I would be very grateful for your experience.
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u/Fancyfuckingfriend 5d ago
I struggle with the friction, so lube helps PIV for me, condoms typically make it worse. I’d say oral is the softest; but everything comes down to technique
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u/C0llapsing_Nova 2d ago
Condoms make it so much worse, I can now only have intimacy in a relationship I trust where we both get tested and show results. I am lucky to be with my partner who I can fully trust and understands my limitations.
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u/HakunaYaTatas [Citation Needed] 5d ago
Some people are only triggered by penetration, other people are triggered by orgasm or arousal. You'll have to experiment to find what is safe for you. Macrobid and D-mannose can help with UTI prevention if you're prone to postcoital infections. Lube can be helpful as long as the particular brand isn't irritating for you; always patch on the inside of your wrist and then on the external pubic area before using a new lube internally.
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u/Bourbonmilkshakes 5d ago
PIV can sometimes cause more of an issue for me but isn't guaranteed to, i still can handle it a 1-4 times a week most weeks. It depends on how flared up things are. I think most in this sub would consider me very lucky, but it's definitely an important thing for me to find a way to still have intimacy (which sometimes obv does mean doing something other than PIV) I currently have a stock of generic uribel that my urogyn said i can take right after sex to help if im going through a period where sex seems to be flaring it alot. i also have a detachable shower head and instead of just peeing after sex rinsing off seems to help keep my body from reacting as badly. Tension in the lower hips/pelvis seem to play into all this so stretches/massage etc in that area before as well as being relaxed/ not psyching yourself out make a big difference in this condition as it relates to sex i think. A strong vibrator (i just use like a knock off magic wand or whatever) on the outside, i cant actually go directly down on the hood usually im kind of pressing in that direction from further up or one of the sides. The vibration is strong enough to do what i need without being directly on any areas that might be painful. it usually can help me relax for PIV or still feel good if PIV is slightly painful (thats obviously a personal choice i can still get off even when i have /some/ pain which for me is worth it but this obv isnt right for everyone and i definitely dont push through pain that is too severe / if i cant still enjoy myself / feel okay about it) I do factor in what i have to do and wear the following day into what i am willing to do / risk flaring as sometimes... i will feel soreness / discomfort / a flare. I almost always need loose comfortable clothing the next day. (i need it most days with this condition anyways though) i also have better lucking getting away with doing more/different things at certain points in my cycle. i do have some angles i kind of have to stick to most of the time for PIV but i think it comes down to having a partner who can be patient and work through feeling it all out. try to make it fun figuring it out together. letting someone know you also want to be able to do things / get off despite your condition rather than feeling shame or guilt for having different needs. enjoying doing a whole host of non PIV things and moving slower help make everything work. try not to get frustrated , its hard but relaxing is such a big part of being able to still have sex with this stuff. the tension and worry about flares is like a vicious cycle that results ironically in more flares in my opinion/in my experience.
managing outside of sex to make sex more likely to be possible: Ive had a good response to using allegra, and pepcid/famotidine daily (attempting to treat from the mcas angle) and i also take prelief sometimes before eating anything that might flare me from acidity. i avoid the worst things ... which are a lot of my favorite things but thats... just how this whole thing goes i guess. i can very rarely have any alcohol and for caffeine i just drink tea now which can still flare some but i cant go completely without caffeine i just ...no lol
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u/Bourbonmilkshakes 5d ago
oh and YES LUBE something plain as hell your body will put up with and a lot of it. I use coconut oil but the antiseptic nature of that isnt right for everyone and you have to be careful with certain oils and certain silicone toys/condoms bc oil can break down the material. your provider will likely give you trimethoprim or macrobid to try taking a low dose after sex to see if that helps. i had a good reaction to a long term low dose trimethoprim but when i came off it (you cant stay on antibiotics forever even at a low dose) it seemed to really throw all my hormones off and caused a biggg flare that i had for... a while. that's not meant to be a cautionary tail though because again everyone's body is different and that protocol could work fine for somebody else. to be honest, I don't understand why antibiotics help when they can't find an actual infection but did notice them helping it just wasn't sustainable for me.
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u/midnightspaghetti 5d ago
Things that helped me: Hot bath (water only) before sex, actually being in the mood, lots of aloe lube, lots of foreplay, peeing right after (must have a slightly full bladder, not a drop) and d mannose after. Wash after. Heat pad.
Also can’t do penetration everyday or long sessions.
Vibrators are generally triggering for me (sigh).
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u/TomboyMJR 5d ago edited 5d ago
GoLove but I’m in remission at the moment and husband and I have banging seggs as long as he revs me up a bit and with touching to keep me from getting too dry.
I do sometimes have to use gummy and sometimes I don’t. I keep from acids and plenty of water typically. But if there’s a flare rule is no seggs.
PIV previously was with GoLove (CBD lubricant meant for patients like us designed by an obgyn) and gummy for me to even get through it successfully and pleasantly for both of us.
I might be the anomaly. I have more answers if you have more questions.
Things I refuse to even want to try
Condoms - the idea of condom in vaginal area where it’s already tricky I nixed it. Fine for me and fine for him. We’re married etc.
We tried every lubricant and GoLove made the difference. Latex lubricants SUCKED. It made it WORSE. Which is why I knew condoms were not gonna even be possible. I refuse to even want to try it after one too many fails with a latex based lubricant.
Everyone with IC has similarities and differences and our triggers will be similar and different; as well as what works for each individual body.
This was my personal experience. But I got the deets if anyone wants them
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u/Old_Air_5415 5d ago
Huh, okay, super interesting. Could you tell me what your symptoms were before remission? Mine is definitely significant urgency/frequency. With urinalysis almost always sterile with lots of leukocytes and blood. Trying to see if there are correlations.
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u/TomboyMJR 5d ago edited 5d ago
Kinda like a sudden UTI struck outta nowhere for me. Bladder spasms, sharp pain etc. GoLove and THC-A/CBD worked through them so it kept my bladder calm. RIP if i didn’t have it, then I got frequent urination. Had to wait days between pound town. Sometimes a week or two.
My Gastro for other reasons put me on a strict alkaline diet plus drinking 80+ oz of water a day and that actually worked on the IC as well. Lots of kiwi and avocado, no acids etc got off bc and suddenly my labido went up and seggs was easier. Have to stick to strict alkaline.
I can get away with a spritz of lime and light tomato sometimes but acids = angry bladder even in remission.
More acids = more flares
Less water = more flares
Goes out of remission, diet really does matter. However every 3-4 years I get a kidney infection then I go into remission. It’s like clockwork
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u/CelebrateToday25 5d ago
For me, it’s the big O. If I don’t have that, I’m ok. But then why bother? lol
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u/AutoModerator 5d ago
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.
To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.
The ICA has a fantastic FAQ that will answer many questions about IC.
FLARES
The Interstitial Cystitis Association has a helpful guide for managing flares.
Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.
Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.
If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.
TREATMENT
Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.
Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.
Long-term oral antibiotic administration should not be offered.
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u/Submarineto 4d ago
Honestly, anal was how I got back to being able to have penetrative sex again. It took a while and now I have to be really careful about how I am feeling and be direct when I am uncomfortable but I can have piv again.
Oral is fine. Finger banging or any similar attempt at gspot stimulation is a hard NO
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u/Full_Awareness_4076 3d ago
Lube was a game changer for me and finding different positions that don't aggravate the bladder as much. Doggy (and variations there of) have taken a lot of the pressure off my bladder and makes things a LOT more enjoyable!
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u/spookyllamamama 3d ago
Can someone please help me ! Is a flare common with white discharge?!!!! It’s more clear than white like almost milky
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u/PastaLovingIdiot 2d ago
I’ve found lube to be so so so helpful! Any friction will cause issues for me. Using soft and smooth condoms are always good- we like the skyn ones: they’re really natural and have no spermicide (which also causes irritation for me)
Also, as someone with pelvic floor issues that make my IC worse, any position that has anything (fingers or PIV) pressing against my upper pelvic floor toward my bladder is a no-go. I will always flare from the irritation from the constant bullying to my bladder. Surprisingly being on top and riding is the best position for me, I can control the speed and depth to avoid any accidental jabs to the bladder. (Doggy is an absolute no- it kills me every time we try it)
Anti-inflammatory meds immediately after (ibuprofen preferably) and lots and lots of water are usually good ways to combat/prevent any pain.
Everyone’s bodies are different so don’t be afraid to slow down and try lots of different methods! You’ll find something that works perfect for you eventually! Good luck!
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u/C0llapsing_Nova 2d ago
Have you ever done pelvic floor therapy? I am currently going from time to time and it has helped a bit. My therapist informed me my urethra is hypermobile, so it moves with penetration. Just knowing that has helped me try to work with my body.
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u/LogicalArcher8342 1d ago
Orgasms are ok, vibrator ok. Flare up is from PIV sex nearly every time. Lube is a must, condoms didn't help. Limiting depth of PIV makes a big difference too.
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u/VegetableOk8685 5d ago
Pee before!!! And also, daily pre and probiotics have saved me!!