Helping your partner understand

[oceandreamer]

I am in a relationship and of course my IC is an issue. In the past IC has caused several relationships to fail. In the past the men I was involved with decided my IC was not something they wanted to deal with. I know this means this was not the right person for me. I am in a relationship with a wonderful man who is very open and honest. He is in the process of a career change and will most likley need to move. We are discussing moving in together and me moving with him. My IC is of course an issue. I have a great Dr. and insurance plan here. My boyfriend has been honest and he has told me he does have concern how my condition will affect his life and goals and our life together. We have talked openly that is is hard situation and when he thinks of what he wants in a partner he never thought in the past he would have to think about making a lifetime commitment to somone with a condition such as IC. He has agreed he needs to take more time to learn more about IC. He knows what I do for treatment and understands the basics. Any men out there with advice to help him understand how my condition will affect him? What types of concerns might he have that I could help with?

[Sarojini]

Let's see. Probably the first thing is to print out some info from the Patient Handbook on this site (http://www.ic-network.com/handbook) -- there are sections on treatment, self-help, and even relating to spouses/partners. Also, the book The Interstitial Cystitis Survival Guide by Robert Moldwin, MD may be good to purchase and share with your boyfriend. There is also an excellent book called "Beyond Chaos --One Man's Journey with His Chronically Ill Wife" by Gregg Pilburn -- it's written from the husband's point of view and may be interesting reading for the two of you.

I hope you two can come to an understanding; I think that it's great you're both making such an effort to be open and honest with each other. That is the start of learning how to deal with a chronic illness :)

[Melanie]

My husband and I went to a couples therapist before we got engaged. The IC was a challenge for both of us (physical, emotional, sexual, financial, etc). But we worked through all the issues and we continue to work on it.

Honestly, in some ways I'm grateful that I have IC and the challenges it presents. My husband and I are closer and communicate better because of it. Last year we faced a tragedy and we dealt with it remarkably well because of the skills we gained from couples therapy.

If you experience painful sex, consider asking your doctor about physical therapy. It's helped our sex life tremendously!

Illness (chronic, acute, terminal, etc) often enters all of our lives and relationships eventually. I know you aren't talking marriage at this point, but there is a reason for the "in sickness and in health" vow.

[kjones1]

I have been in pain for almost three months and one of the things Im most scared about is never having sex again. I am getting married to my fiance in June. Someone please tell me that it is possible to have a happy and healthy sex life. I love my fiance so much and feel that the timing of this whole thing is so unfair (however I know having IC or any other chronic illness is unfair and unfortunatley we don't get to choose if and when we get it). Please give me hope or at least a good story :)

[Cheries]

Kjones. I so feel your pain. Have you been to a pain specialist? Perhaps there is something you can take before sex so it is more comfortable for you. Also I suggest physical therapy as this is what I am looking into. I have been married for 15 years, 10 of them with IC. It is definately hard, but my husband has never felt deprived or lacking sexually. I guess because we still try to be close even on those days I can't have sex. I also decided I wasn't going to let IC ruin my sexlife. And for the most part it hasn't. It is such a challenge to look ahead with this illness, but keep in mind that the way you feel today is not hte way you will feel necessarily next month or the year after that. Keep the faith that you will get effective treatment.

[ICNDonna]

With open communication and experimenting with various positions, it is very possible for most ICers to have a satisfying sex life. Just be sure to use plenty of lubrication. There will be times when the IC is flaring and sex is impossible, but there are also lots of other times.

Donna

[Melanie]

A story of hope:
My husband and I have a great marriage. We've had our share of challenges. My IC started shortly after we met. We've experienced time periods without intercourse, but we've always been close and managed to work through it.

Here is a list of things that have helped us:
Communication, making love doesn't always have to mean having intercourse, patience and foreplay, lubrication, experimenting with positions, toys, books...
Physical therapy, learning to do kegels properly (tense and relax), antibiotics after sex to prevent UTI, showering before and after to prevent UTI, a good couples therapist...
and my favorite product recommendation: Liberator pillows. They help so much! Check them out online.

[rachelm]

My now husband and I went through some difficulties as we adjusted to my progressing IC symptoms. I know he had to question his commitment and wondered if I would be completely unable to care for myself. He decided that even if that were to be the case that he loved me and wanted to marry me so he propossed 8 months after my diagnosis. Luckily I have some periods of symptom relief in which I am almost completely normal with no pain. He knows that when I flare eventually I will get better again. We have been through the diagnosis, countless treatments, and the interstim process and through it we have grown more in love with each day. He does physical therapy with me and knows how to help relieve the tension so we use this as a time of closeness when we can't have intercourse.

One thing that I realized was very important for our relationship in the beginning of treatment was not focusing on IC alone. I found myself talking about this treatment or that article constantly and he really needed to have a break from the "talk of IC." I know now that it is healthier for me individually to occupy my mind with other topics in order to get away from the constancy of IC. I still read the boards and articles but I have filled my life with many other areas of focus as well.

Rachel

[kjones1]

Thank you all for the good advice. Im going to look into the Liberator pillows. Let you know how it works out but it could be awhile. Thanks for the hope--Kelly

[oceandreamer]

I went for several years without sex. I had broken up with a long term boyfriend after my IC was diagnoised and for the first few years had a hard time just learning to get through day to day and treatments and did not have any serious boyfriends. I was so scared sex would hurt. I finally met someone who I felt safe trying agian with. Once I realized it was OK. I worked on having a relationsip again. I went through a few relationships and found a great guy. I have some days when sex is out of the question. However, I have learned some "tricks" to hlep. First, I you have to be relaxed. For me, I may take a hot shower and use a lavendar oil that I put on in the shower and then "blott off". While i"m in the shower I also take a lipton tea bag and get the bag warm and "seeping". I put in between the vaginal lips for the time i"m in the shower. I usually bring a cup in with me and "re-wet" it a few time. I make sure I shave my legs and put something sexy on. I do this because it makes me feel better about myself and feel relaxed. I often light some candels too. We use the lubricant that sells on the sight. I like the little "travel ones". We bought a book of different positions and have found some that work well for both of us. Also I have learned to be very blunt and verbal which tells him what feel good and what hurts. Often to relax if I'm in a bit of pain. he does not penetrate fast. I "direct". My doctor showed me a muscle that he can put light pressure on while barely inside me. He and I cen feel the differrence when the muscle relaxes. Also, my Dr. told me to be on top if you are nervous about the pain. He expalined this I know what the next "move"will be and if in more control you can relax better. One thing we are very open to telling each other what feels good. I do have a problem with dryness from my meds. I make sure I tell him everytime I am turned on and it my med that makes me dry. I reassure him that even though some positions hurt and that my med prevents me from having an orgasim (antispasms really affect sexual function) I enjoy being with him. After If I am in a little pain he brings me a cool wash cloth. If I'm in a lot of pain I make bowl of tea and dip a sanitary napkin in and hold on my vulva. He usually gets us something to drink and makes the bed all nice and neat. By this time the extra ativan I took before my shower has kicked in and I'm reasy to sleep. He knows that in the morning I may hurt and lets me sleep and often brings me warm milk and what I want to eat and then sleep as much as I need to get pain under control. I'm not saying sex does not cause pain the next day or after on occassion. But not every time and for me I have pain anyway. I personally need the connection of making love on a regular basis. Also, I feel being so open with our body and needs it makes it easier to talk about any issue that comes up. It really brings us closer.

[Dianne]

I have a really bad case of IC but for whatever reason though, sex is not painful for me. I have a hard time engorging due to neurontin and lack of estrogen and I can't O anymore without a vibrator, but it's not painful. I use the vibrator first on the outside only before insertion usually during foreplay. Hitachi Magic Wand is the best. It's a plug in type. The battery ones aren't enough stimulation to do anything for me. Not the right vibe or something. Then able to do entry ok. So hope, yes, definitely. I'd rather be able to have low tech sex as opposed to high tech sex but I'm just glad I can still have it at all.

[Cricketmk3]

When I read about the extremes we go to to have a sexual relationship with our husband or boyfriend, I wonder how our partner can feel good about having sex with us when they know it causes us pain. Please tell me I'm not the only one who feels a bit of anger when I read about what we go through to satisfy our partner so that they don't feel as if they are getting a bad deal with us. (I do it too!) I know we love them and like to be close but as I've read many times on this site, there are other ways to do it besides intercourse. I just don't see how they can be happy with themselves afterwards when we are "recovering". Does anyone else feel this way?