These responses are based on personal experiences of the speakers and should not be considered medical advice.

  1. Can you also include info on the O-shot treatment that was mentioned?

Here’s the link http://oshot.info/. It’s also listed in the references in the webinar (last page).

  1. What is the app that Tasha uses to track her pain and generate a report for the HCP?

My Pain Diary, but there are several others.

  1. I have been taking Elmiron for my IC for several years. The cost keeps rising. Is there another medication you would recommend for me to try? Elmiron does work for me. Sorry if this question is not relevant for this particular webinar! Another more relevant question is: Do you recommend any physical therapy other than Kegels? Thank you!

From my personal experience (not medical advice) – I get pelvic floor physical therapy every week and it’s what allows me to keep going. I also use Urelle (an alternative to Pyridium) but works much better.

  1. Is there any information on using CBD pill?

From personal experience (not medical advice), there is CBD, with low or no THC (so you don’t get high), but you test positive for marijuana, that can be helpful, they even have it in suppository form. It can be expensive at $7 per suppository. I prefer the compounded suppository from my uro-gyncologist (lidocaine, etc.) as I feel it’s more controlled and effective.

  1. How to control pain and fatigue?

Use some of the tips discussed in the webinar such as “paced activity,” and CBT therapy can help you with pain.

  1. How to stop the pain and what brings it on?

See above, but stress can bring on flares and make things worse. Managing stress, mindfulness, paced activity, and CBT therapy are all very helpful.

  1. How do you prevent infections during intimacy (i.e. sex as well as intimate touching)? Flares are unavoidable, I know…

From personal experience (not medical advice), make sure that you clean things really well before and after (including your hands), and urinate directly after intimacy. Try to be stress free and schedule time so it’s not rushed. Try to stay relaxed. You can use topical lidocaine before and after, and also compounded suppositories afterwards.

  1. What are other ways to be intimate, ways to communicate your pain to a partner?

Authentic 2-way communication is the key. Utilize active listening like Laura described on webinar. Schedule time for yourselves (even if there’s no sex) to be intimate. Find out what feels good for each other. For instance, I love to have my back or feet rubbed. Discuss with your partner “what makes them feel loved?” It may be a meal you cook, taking a walk together, or other intimate acts with or without sex.

  1. Any new treatments on the horizon? I have been told my next only option is to have my bladder removed.

Follow ALL of the AUA guidelines and keep trying them, including psychotherapy.

  1. Is there anything other than pain medication before that helps?

Yes, visualization, mindfulness, and psychotherapy (CBT, ACT, Etc.) have been proven to be just as effective as pain medication for chronic pain and illness. At minimum, you can use them in addition to your medication.

  1. Do you have any tips for socializing with others who do not have IC? They can’t involve being in a car or place without easy bathroom access.

Get the ICA restroom access card (https://www.ichelp.org/donorresources/ica-restroom-access-card/) and USE it! I take it with me everywhere and I don’t stand in lines. I go straight to the handicapped stall. If there are others, I just hold up the card and say I NEED to use it immediately. Most often people say nothing but there have been times someone ‘mouth’s off’ and I just say that I have a painful bladder disease and can’t hold it. This allows me to be more comfortable in going outside. Also, use social media and skype to talk to groups of your friends, or plan things at your house or a friend’s house.

  1. Are there new help options, managing pain, exercise options, help with explaining to significant other resources?

Most of this was covered in the webinar. Make sure you stay in touch with ICA and really go through their site to find all the resources that they have to help you. When exercising, start small and do paced/timed activities.

  1. What type of bed could help me be able to sleep next to my husband again?

Personal experience (not medical advice), try the temper-pedic newer version that doesn’t get too hot. And bolster pillows.

  1. How to enjoy sex and avoid pain?

Personal experience (not medical advice), listen to webinar for all that was discussed, as well as the comments above. Try the Mona Lisa or O Shot (or both) or pelvic floor physical therapy. Find a therapist near you that specializes in chronic pain and can help you along your journey.

  1. How can you sustain relationships with other women if you have to cancel dates due to pain that day? My pain gets in the way.

True friends will understand, and those who don’t, aren’t true friends. On the webinar, Laura discusses ‘quality over quantity.’ Also, try to plan things at your own home (stay in your pj’s, if necessary) or at a friend’s house.

  1. How can I help those around me understand the pain that I’m in?

Authentic 2-way communication is the answer – meaning share how you are feeling but also find out the concerns the other people have. We discuss some additional options in the webinar. You can use the ‘penny in the shoe’ analogy. If you use a pain diary, you can share that with them, but also share everything you are doing in order to help manage your symptoms.

  1. How do I get my partner to understand that my pain is constant and sometimes I am limited & I am afraid of losing him?

See some of the above responses. Go to couples therapy with a therapist that specializes in chronic illness. Be authentic about your fears and find out what makes your partner feel loved?

  1. How do you function with pain? Any new or different treatments?

Discuss with your doctor. Try new treatments and follow the AUA guidelines. Psychotherapy will help you function with pain but find someone who specializes in chronic pain/illness.

  1. How is the best way to tell others you have chronic pain so they can understand?

Describe the “rock/penny in your shoe” analogy and most will have a hard time understanding but you can discuss things that they can do to make you feel understood.

  1. When do you tell a potential partner you have IC and are unable to have intercourse?

I would first try new treatments and work with a pelvic floor physical therapist to make sure that you can NOT have intercourse. Things are constantly improving (i.e. the Mona Lisa) so I would caution you to never give up trying. Have authentic communication around the issue, see a therapist. Focus on building the connection, friendship and love prior to, and without intercourse, because most of a relationship is not intercourse. And figure out creative ways that you can be intimate without intercourse, but don’t give up.

  1. As this condition deteriorates, how do I keep working?

Get the ICA disability package and that can help you with understanding the process. Also, talk to your HR department and discuss accommodations that can be made to make you more comfortable at work.

  1. Do you have any potential treatments or clearer understanding of the diseases affecting the bladder and pelvic floor?

Follow ALL the AUA guidelines.

  1. I have 2 neurostimulars embedded. Why does it not help the pain?

Personal experience (not medical advice), I have 1 neurostimulator with leads to both sides of bladder. It helps mostly with frequency not as much with pain. However we have had to play with different settings and get them checked & adjusted every year. Your body and mind will get used to a specific setting, so you need to change it up. Work with a psychotherapist who specializes with chronic pain to work on pain management.

  1. I want to know what they think of cannabis for pain.

Personal experience (not medical advice), first educate yourself and get a referral from your medical doctor to a MJ doctor that your primary doctor trusts. If you’re in a place where it’s legal or medical marijuana is allowed, I would say to try it. There are versions that have low THC (so you don’t get high), but it can reduce the pain. Some vapor pens may be helpful when you get a flare, usually an ‘indica’ version will help with body/pain versus a ‘sativa,’ which is more of the head high. There are also topical creams that may help.

  1. I’m dealing with feeling uncertain and uncomfortable with sex.

This sounds more like what’s going on in your mind and self-esteem rather than physical, which is usually where the ‘block’ is. Work with a therapist who specializes in chronic pain/illness and can help you with the relationship with yourself, as discussed in webinar.

  1. How to get dietary support? How to manage symptoms when not at home?

Personally, I travel with medications and also do self instillations to manage symptoms when not at home. I will also bring any special food or drink with me. Try to find a nutritionist who understands IC, or read the IC books and resources listed in ICA website.

  1. Are there other options to treat, besides medicine?

Nutrition, physical activity, pelvic floor physical therapy, psychotherapy, mindfulness, etc. (https://www.ichelp.org/diagnosis-treatment/treatments/)

  1. How to talk about it, how to talk to doctor about unmanaged pain?

Use the pain diary and then be authentic and clear with your medical providers about what is working and what’s not working. Show them the logs of your pain diary.

  1. Oral sex?

It’s a great way to be intimate without penetration. Make sure that everything, including hands, has been washed before and after to help avoid infection. Go for it! And incorporate vibrators to help you achieve orgasm. Orgasm will bring blood flow to the area and helps reduce pain.

  1. Would psychotherapy or hypnotherapy help control my emotions when in pain and disappointed with newly restricted lifestyle?

ABSOLUTELY!! Specifically psychotherapy with someone who specializes in chronic pain/illness will be VERY helpful to control emotions, mindset, and adjusting to your new normal.

  1. How do I keep my head up?

I’m interpreting this as dealing with the emotional impact and not losing hope. The best is to work with a psychotherapist who specializes with chronic pain/therapy.

  1. How can I still have a full relationship when any penetration results in weeks of pain?

See responses above – and work on being intimate without penetration.

  1. How can you have a sexual relationship without pain and getting symptoms later on?

See responses above – and work on being intimate without penetration.

  1. What have u seen really successful long term couples?

Active listening, authentic 2-way communication, figuring out what makes you feel loved, keeping intimacy (even without sex), keep trying new things, and be curious together.

  1. How to learn to live with IC?

There are great books and resources on ICA. Check out Dr. Nicole Cozean’s book, The Interstitial Cystitis Solution. Also, work with a psychotherapist who specializes in chronic pain/illness.

  1. How to overcome this obstacle and help with anxiety

Check out the ICA website and social media pages. Also, find a psychotherapist who specializes in chronic pain/illness.

  1. What is the best treatment for IC flares as of now?

Follow the AUA guidelines.

  1. I want to know or get some more ideas to keep the pain down.

Follow the AUA guidelines and find a psychotherapist who specializes in chronic pain/illness.

  1. What are some strategies to help IC?

Follow the AUA guidelines and find a psychotherapist who specializes in chronic pain/illness.

  1. What is the recommend antidepressant?

You would want to see a psychiatrist who will assess you specifically and make appropriate recommendations.

  1. What sexual pleasures can we provide our partner that will not bring IC pain on

Focus on intimacy and discuss what feels good with your partner, what works and what doesn’t. Try new treatments and keep exploring.

  1. Are there books you recommend on other couples living with IC?

Start with Dr. Nicole Cozean’s book, The Interstitial Cystitis Solution.

  1. How can I have my partner help? How can it not fall all on me (diet, meds, etc.)?

Communicate and discuss with your partner. Ask for help as to what they can or are willing to do to help you.

  1. Explain the difference between vaginal atrophy and IC.

Discuss with your doctor, but these are two totally different things.

  1. I have attempted to apply for disability as I’m not able to keep a job. I’m unemployed what can I use to relieve my pain?

Two responses; 1) get the ICA disability package, and 2) work with your doctors and a psychotherapist to create a healing team to help you manage your pain and symptoms.

Additional notes from Dr. Santurri:

Be willing to be open and honest with others. In addition, don’t feel like you need to apologize for your truth. For example, with friends, you might say something like, “I really value our friendship and the time that we get to spend with one another. Because I value it so much, I wanted to let you know that I have a chronic condition called interstitial cystitis (IC) that sometimes makes it harder for me to go out. If I do go out, I generally need (name some factors that would influence whether or not you would go out, e.g., easy access to a restroom). I know that this may be the first time that you’ve heard of IC, so I’m really happy to talk about it with you or send you some information about it.”

Another example was something that I heard a good friend and colleague say while we were scheduling something at work with a group of people. When we were talking about scheduling the meeting, and the potential for an early morning meeting came up, she said, “I have a condition called fibromyalgia that makes it challenging for me to get going in the morning. Given that, I would prefer that we schedule the meeting after 9am.” She was straightforward, honest, and unapologetic, and I thought that was great.

I think the same point goes for navigating sex and intimacy. When my husband and I first met, right around the time that I realized we were getting serious, I actually sent him an e-mail about my IC. I felt like I could express myself more thoroughly in writing, and it would give him some time to absorb what I was telling him (without me in front of him). In my e-mail, I was clear about what IC is (and what it is not—e.g., a sexually transmitted infection), the impact that it has had and continues to have on my life (both the negative, and yes, some positive), and given all of that, how it might impact our relationship. I was also clear about what I was willing to accept (and not willing to accept) in a relationship. The e-mail led to a really great conversation in-person, and we’ve continued that conversation throughout the relationship. Each person is different, so what one individual can do without (or with minimal) pain during sexual activity may be very different for someone else. I think it requires a willingness to try different things and to talk openly about the experience (before, during, and after) with your partner.

This is all sometimes easier said than done. As I said in the webinar, my first marriage ended due to infidelity on his part, and I think that infidelity was a result, at least in part, of our limitations with sexual intimacy. I spent a long time feeling like I was damaged or less of a woman because of this. It’s honestly only now that I’ve really started to feel like a whole person. I refuse to apologize for something that is out of my control (i.e., having IC), but I also refuse to be passive about what I can control (i.e., communicating in a healthy way with someone who loves me, reframing what it means for me to have a healthy sex life, etc.).

Revised Wednesday, February 7th, 2018