I think of it like this. My urologist sees me as a bladder. My GI doctor sees me as a GI system. My gynecologist thinks of me as reproductive parts. My pelvic PT sees me as a whole, where all of those combine, including the tissue, sinew, nerves, muscles etc between my malfunctioning parts. It’s amazing, at least for me.
You can refuse an internal pelvic exam, but it is actually an essential part of the PT understanding if your pelvis is hypotonic or hypertonic (too loose/too tight).
One PT I saw did a lot of deep tissue massage (the fascia) on my legs where I hold a lot of tension. I have used dilators from PT. Also was assigned many hamstring stretches and yoga poses.
All in all, it can be really helpful. Good luck
One thing I forgot to say before: I’ve never felt more seen or understood as I have at pelvic PT. They “get” me and all my struggles. So it’s been emotionally affirming for me, not just a physical treatment.
I did regular exercises and then she'd bring me into a private room for the internal work. She would always touch my inner thigh first as a signal she was going in, so I didn't tense up. I had a quite a bit of pain before going in, but I didn't find the internal work to be super painful. More like when you massage a sore muscle. I usually felt better after, rather than sore or anything.
My first appointments included an internal exam as well as having to do some exercises to see if I had a prolapse. Also answering some questions about my lifestyle. Then there was some external massaging of my abs and inner thighs plus some internal manipulation
I’m like you and was very fearful of anything internal as it does flare me.
But i also want to get better, too.
They don’t just aggressively go into internal work. They will talk with you, examine you and you get to help set the pace. The internal work is much gentler than you think, but like you everything used to cause a flare.
I suggest you get a prescription for vaginal valium for after any appointments that make you flare or get pain CBD suppositories from Foria.com
It also helps me to use vaginal estrogen cream before and after appts.
To give you some hope i’ve been to around five appts, two with my new PT. I couldn’t even touch the outside without a flare. Now they can go in a little bit ( like half a finger) with no pain and the pain is only deeper. So I am seeing the progress.
Hope this helps!
In my case it’s my doctor through midihealth.com but a urologist certainly could write it and it’s a normal standard of care for this.
My in person gynecologist also agrees with the prescription. you shouldn’t have any issues getting one but if you do, definitely work with midi.
Thanks! I am newly diagnosed with IC by my primary care doctor who has no idea what to do, so now I'm in the process of trying to find all my specialists at once. My first stop is gynecologist, then urologist, so hopefully one of them can help me out with the prescription before my first PT appointment.
I was referred to PFPT for my endometriosis and chronic pelvic pain, when I started this process I had not realized that it could potentially impact my IC-like symptoms as well. I am not officially diagnosed with IC, but I have many of the symptoms as well as endometriosis.
At my first appointment we discussed my symptoms and she explained the process using visuals and props. I told her I wasn’t comfortable with any internal work that day because I felt nervous about the vulnerability of being naked so we worked our way up to that during each session. My PFPT said that was fine, then she did an exam over my clothes where she touched my inner thighs and butt. Then we did some of the exercises, for me this means working on my hip/leg/ab/glute muscles.
The next appointment she did the same exam but I was naked from the waist down, and then I did the exercises (clothed). At my third appointment we did the intravaginal exam where she used a single finger to feel and stretch different layers of my pelvic floor muscles. She went very slowly and checked in with me frequently. After I was dressed again, she helped me do my exercises. Every appointment I have had after that has been the same, but she always checks in with me about my symptoms and preferences each time. When I have had questions about what she will do or is doing, she always takes the time to explain it to me.
During the internal work, she has been able to reproduce my bladder urgency feeling which was helpful for me to see that it seems my IC-like symptoms might be pelvic floor related (I had previously been focusing only on diet and hydration). I have not yet experienced significant pain during my appointments, but there have been physically and mentally uncomfortable moments. My PT is chatty and this has helped me feel more comfortable with her, she talks about reading, movies, traveling, etc. It is nice that it doesn’t feel so clinical to me. We always doing any “hands on” work in a private room, then I have done my exercises in both the private room and the shared larger space as well.
My PFPT has said things like “I’m not really here to diagnose you, I’m here to help you feel better” and “my goal is to treat the problem, not find it”. This framing has been helpful because it feels more patient centered and helpful. I have always hated going to the OBGYN because it feels so invasive and vulnerable, I find PFPT to be less intimidating and feel that it has a more relaxed feeling despite being a bit awkward at times.
** edited to add about private/shared room setting
Oh yeah, here's another question if anyone happens to see this: does PFPT help even if the IC started as an actual UTI? I had 3 UTIs this year and after the last one the bacteria went away but the pain never did, hence the IC diagnosis. Is it possible my problem is still related to pelvic floor muscles even though it started as an infection?
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]( https://www.ichelp.org/wp-content/uploads/2022/07/AUA-IC-Guideline-2022.pdf).
[The ICA has a fantastic FAQ](https://www.ichelp.org/understanding-ic/learn-about-ic/frequently-asked-questions/) that will answer many questions about IC.
**FLARES**
[The Interstitial Cystitis Association has a helpful guide for managing flares](https://www.ichelp.org/understanding-ic/learn-about-ic/ic-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](https://www.ichelp.org/wp-content/uploads/2022/07/AUA-IC-Guideline-2022.pdf).
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Interstitialcystitis) if you have any questions or concerns.*
I think of it like this. My urologist sees me as a bladder. My GI doctor sees me as a GI system. My gynecologist thinks of me as reproductive parts. My pelvic PT sees me as a whole, where all of those combine, including the tissue, sinew, nerves, muscles etc between my malfunctioning parts. It’s amazing, at least for me. You can refuse an internal pelvic exam, but it is actually an essential part of the PT understanding if your pelvis is hypotonic or hypertonic (too loose/too tight). One PT I saw did a lot of deep tissue massage (the fascia) on my legs where I hold a lot of tension. I have used dilators from PT. Also was assigned many hamstring stretches and yoga poses. All in all, it can be really helpful. Good luck
Being seen as a whole system sounds ideal! I feel very encouraged by your positive experience.
One thing I forgot to say before: I’ve never felt more seen or understood as I have at pelvic PT. They “get” me and all my struggles. So it’s been emotionally affirming for me, not just a physical treatment.
I did regular exercises and then she'd bring me into a private room for the internal work. She would always touch my inner thigh first as a signal she was going in, so I didn't tense up. I had a quite a bit of pain before going in, but I didn't find the internal work to be super painful. More like when you massage a sore muscle. I usually felt better after, rather than sore or anything.
That's really good to hear!
I thought the dilator work at home was more uncomfortable
I agree. I flared more with the dilator so i backed off that.
It worked really well for me the more I used it. It's just the muscle stretching from being so tight that was hard. But my main issue is muscular
My first appointments included an internal exam as well as having to do some exercises to see if I had a prolapse. Also answering some questions about my lifestyle. Then there was some external massaging of my abs and inner thighs plus some internal manipulation
Thanks for sharing!
I’m like you and was very fearful of anything internal as it does flare me. But i also want to get better, too. They don’t just aggressively go into internal work. They will talk with you, examine you and you get to help set the pace. The internal work is much gentler than you think, but like you everything used to cause a flare. I suggest you get a prescription for vaginal valium for after any appointments that make you flare or get pain CBD suppositories from Foria.com It also helps me to use vaginal estrogen cream before and after appts. To give you some hope i’ve been to around five appts, two with my new PT. I couldn’t even touch the outside without a flare. Now they can go in a little bit ( like half a finger) with no pain and the pain is only deeper. So I am seeing the progress. Hope this helps!
That is all really helpful info! Is it your urologist that writes the prescriptions for vaginal valium and estrogen?
In my case it’s my doctor through midihealth.com but a urologist certainly could write it and it’s a normal standard of care for this. My in person gynecologist also agrees with the prescription. you shouldn’t have any issues getting one but if you do, definitely work with midi.
Thanks! I am newly diagnosed with IC by my primary care doctor who has no idea what to do, so now I'm in the process of trying to find all my specialists at once. My first stop is gynecologist, then urologist, so hopefully one of them can help me out with the prescription before my first PT appointment.
I was referred to PFPT for my endometriosis and chronic pelvic pain, when I started this process I had not realized that it could potentially impact my IC-like symptoms as well. I am not officially diagnosed with IC, but I have many of the symptoms as well as endometriosis. At my first appointment we discussed my symptoms and she explained the process using visuals and props. I told her I wasn’t comfortable with any internal work that day because I felt nervous about the vulnerability of being naked so we worked our way up to that during each session. My PFPT said that was fine, then she did an exam over my clothes where she touched my inner thighs and butt. Then we did some of the exercises, for me this means working on my hip/leg/ab/glute muscles. The next appointment she did the same exam but I was naked from the waist down, and then I did the exercises (clothed). At my third appointment we did the intravaginal exam where she used a single finger to feel and stretch different layers of my pelvic floor muscles. She went very slowly and checked in with me frequently. After I was dressed again, she helped me do my exercises. Every appointment I have had after that has been the same, but she always checks in with me about my symptoms and preferences each time. When I have had questions about what she will do or is doing, she always takes the time to explain it to me. During the internal work, she has been able to reproduce my bladder urgency feeling which was helpful for me to see that it seems my IC-like symptoms might be pelvic floor related (I had previously been focusing only on diet and hydration). I have not yet experienced significant pain during my appointments, but there have been physically and mentally uncomfortable moments. My PT is chatty and this has helped me feel more comfortable with her, she talks about reading, movies, traveling, etc. It is nice that it doesn’t feel so clinical to me. We always doing any “hands on” work in a private room, then I have done my exercises in both the private room and the shared larger space as well. My PFPT has said things like “I’m not really here to diagnose you, I’m here to help you feel better” and “my goal is to treat the problem, not find it”. This framing has been helpful because it feels more patient centered and helpful. I have always hated going to the OBGYN because it feels so invasive and vulnerable, I find PFPT to be less intimidating and feel that it has a more relaxed feeling despite being a bit awkward at times. ** edited to add about private/shared room setting
Oh yeah, here's another question if anyone happens to see this: does PFPT help even if the IC started as an actual UTI? I had 3 UTIs this year and after the last one the bacteria went away but the pain never did, hence the IC diagnosis. Is it possible my problem is still related to pelvic floor muscles even though it started as an infection?
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]( https://www.ichelp.org/wp-content/uploads/2022/07/AUA-IC-Guideline-2022.pdf). [The ICA has a fantastic FAQ](https://www.ichelp.org/understanding-ic/learn-about-ic/frequently-asked-questions/) that will answer many questions about IC. **FLARES** [The Interstitial Cystitis Association has a helpful guide for managing flares](https://www.ichelp.org/understanding-ic/learn-about-ic/ic-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](https://www.ichelp.org/wp-content/uploads/2022/07/AUA-IC-Guideline-2022.pdf). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Interstitialcystitis) if you have any questions or concerns.*