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  • Frustrated is an understatement

    Hey there!
    I am new to ICN, but I am excited to share my story and I am glad to find some support. My IC symptoms began when I was 13 or 14 and and I was diagnosed in December of my high school senior year. As all of you know, living with IC is difficult enough, but in the summer before my freshman year of college I was officially diagnosed with endometriosis as well. For those of you who may not know, endometriosis is also a chronic illness in which grouping of the lining of the uterus become attached in other places. These groupings (more commonly called implants) can create pretty bad scaring and adhesions. I was glad to find out my diagnosis, because I had been struggling with painful periods for a while. IC and endometriosis have some similarities and seem to work together to make life with both diseases a living hell. I do have implants located on my ureters, which could be contributing to more IC pain. The implants could spread to my bladder in time. BOTH IC and endometriosis contribute to painful sex. I would consider sex to be my least favorite activity. Yep, call me crazy, but I HATE IT. Every time my fiancee wants to, I literally want to run away and hide. Since IC seems to like to act up around that time of the month, my periods can be pretty debilitating. Both of the diseases are chronic, have unknown causes, are hard to talk about with peers, and are difficult to treat.

    I feel like I am in constant fear of pain. I just want to be like very other college student and go out and party without any worry. It's friday night, the football game is tomorrow and I am busy struggling with incontinence. I just want to be able to have painless sex. I would even take less painful sex at this point. I don't want to take more pills than my grandma. I am not happy with my life and it's just begun. I was always religious and now I find myself more angry at God than ever. I am always one step away from depression. Even though I have supportive friends and my fiancee, I feel like I can't reach out to them. I try to not think about the what ifs too, but they always come up. What if my endometriosis spreads? What if I can't have children because of my endometriosis? What if I can't find a bathroom in time? What if this starts inferring in my academics? What if my fiancee really is tired of dealing with the sexual frustration? Basically I feel like I'm missing out on the best time of my life, because of some really unfair luck of the draw. Does anyone have any advice for dealing with both diseases and still having a normal life?

  • #2
    My heart really goes out to you I feel like crying after reading your post! Im happy that you found all of us though, people on here honestly are angels.

    I know what its like to be in college or university and have IC. Mine started last November and I was just finishing the last semester of university. I felt like I was NEVER going to graduate with my class or get my degree, or have my old life back where I could even THINK about watching the football game or go shopping... or just hang out with friends half normal again...

    Im not sure how I did it but I DID manage to graduate with my class and I now have a degree in social work. I was in and out fo the hospital for months, and no one could tell me what was wrong... you know the drill. I do not have endo however.. and I wish you didnt have to deal with the pain of that Even though I do not suffer I can relate to the dread and unease you feel about everything ...

    The sex thing.. bah well let me tell you... THAT was a nightmare in the beginning. SERIOUSLY. lol. My boyfriend would look at me like "we should have sex" it was all I could do to look at him dumbfounded and ask "SERIOUSLY" you must be kidding right now. lol.... I can't complain though really he is the most supportive, understanding and respectful person I have the privilage of knowing, and he happends to be the man I am in love with... So even thought he IS A MAN... he was most helpful during times like those where I would run screaming and lock myself in the bathroom... because lets face it, I spent most of my time in there anyways.... hahaha.

    I was able though to continue to have sex a few months later when I started to pay attention to the diet and let my bladder calm down. Now I can have normal sex whenever that doesn't hurt-- I was determined to get that back... but it DID take awhile... months and months...and I was afraid too that he would get annoyed with the "always being to sick" to have sex thing. I was afraid about losing everything actually.

    The last 8 months of university was HELL When everyone else was drinking and celebrating thier degree, I was at home in my room sobbing or running to the toilet... It was the lowest I have ever been, and I wouldn't even wish that on my worst enemy.

    Anyways... now for the hope? I hope? lol.... After the HELL of being in and out of the hospital, taking more drugs that I can count, literally, and having every test under the SUN done with NOTHING showing up...I can say that I am finally doing well.

    Never thought I could say that either. SO my advice to you... would be what I did I guess.... and that is ... I left my body ALONE.... I stopped taking suppliments, or anything else I was putting in my body, including birthcontrol or antibiotics. I ate carrots, potatoes, chicken, rice, pears, oatmeal, and drank mint tea and water. THATS IT. I didnt eat dairy or sugar AT ALL. I did this for 4 months about, and then I started to add stuff back in. I KNOW that this is clearly not what you want to eat talk about bland. BUT It did help my body calm down, and that can take months.. Basecly I went on a detox for awhile. After I did this I decided that I had nothing to lose and started on elmiron. I got better and better from there on.

    So now I have been on elmiron for about 6 months. When I wake up in the morning, I dont' feel my bladder anymore... I work two jobs and I finally go out with friends and have normal sex agian. When I do have symptoms, usually one week out of every month ( like sometimes before my period) they are annoying, but nothing that I cannot handle...

    I know what it feels to be that frustrated Like life will never go on... but it does and it can once you find what works for you.

    : Also, I am not a doctor or anyone who should be teling someone else WHAT to do, I just talk from experience mostly- so its always good to let your Dr. know what is going on

    Hope you feel better soon!!!

    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

    Me in my graduation gown!


    • #3

      I also got my IC when I was 14 and went through high school running for water and the toilet, I was also then diagnosed just after I was 18 (Im 21 now) with Endometriosis, then later with depression and human seminal plasma hypersensitivity - so I know very much how your feeling about your life at the moment. I just graduated from university myself and lived all 3 years dealing with both my illnesses and trying to complete my work! Best advice I can offer is make sure you join your disability services at your college/uni as they were so helpful and offered me a voice recorder to record lectures/classes and my tutors were so helpful when it came to not turning up to class due to appointments or illness. Plus extensions were offered to me as well as special conditions for exams etc. Also due to the type of illness that we all suffer from you are able to apply for en suite accomodation for campus (well I did and they were very accomadating to me)! It is also very important to make good links with your doctor and pharmacist as this caused me no end of trouble when I first started!!!!

      Hope this all helps, and if you want anymore advice pleas feel free to contact me!

      Stephi xxxxxxxx


      • #4
        Hey there,
        I'm in a very similar situation to you. I started getting IC symptoms when I was about 15, I'm 23 now and just got diagnosed about six months ago. I've been a college student for the past 7 years because I have to work, so I can only go part time. I tried to do full time work and full time school, but the stress made my IC really bad.

        I've also got suspected endometriosis, my doctor won't officially diagnose without a laparoscopy (and right now I don't want MORE medical procedures done). It is decently controlled with the birth control pill now, but as soon as I stop taking it I'm literally a non-functional human for two weeks out of the month. I've tried to stop twice, but both times were completely horrible. So even though it's not actively bothering me so much anymore, I will probably not be able to have kids, and that really bothers me to think about.

        Sex is also a big problem for me, I'm able to have it sometimes but I always pay for it later even if I can get through the actual act without too much pain. Endometriosis makes it hurt inside and IC makes it hurt outside, so pretty much any position sucks. It is very, very frustrating, and you just have to do the best you can to work around it. There a few days a month that are better than others I guess due to hormones, so I pay attention to that carefully and try to do what I can on those days if I'm not in too much pain from IC.

        I feel like I have said this in a lot of posts, but antidepressants really saved my life. All of this was getting to be too much... the fact that it's taking me forever to finish school, how this effects my job so I get less hours, my huge medical bills, that I'm unable to have a normal sex life, that I will probably never have kids, that I have to take a pill so I don't wet my pants, that I can't wear jeans, that I can't drink or eat my favorite foods, that I can't be a vegan (which is important to me) and stay on the IC diet... believe me, I understand. Before I was on antidepressants I was so close to the edge and completely hopeless. Therapy didn't really work for me, and I had a random bias against antidepressants until my life got so tough that I HAD to do something. I went to my doctor, got on the lowest dose of Wellbutrin, and I am so glad I did.

        So on a positive note, I now wake up ready to face the day. I have more good days than bad, even though I do not have many pain-free days. It does get better, and you find ways to cope. I'm actually happier now than I have been in years, probably happier than before I had IC. Having a strong positive mental attitude really, truly makes it easier to cope with pain. Yeah, it hurts, but I now have the motivation to work through it. You'll get to this point as well, I know it. But it does take a while for some people like us.

        Wishing you the best.
        Medications and Supplements:
        D-Mannose powder

        Lacto-ovo-vegetarian and IC diet
        Positive mental attitude!


        • #5
          Thanks to each of you!

          A huge thank you to all three of you for your support! I was really interested to learn what has helped you relieve your symptoms too and even though some of the methods seem pretty tough(like the detox diet Jinny jean suggested), I may be willing to try it out. To soymilk, I hope you can also find peace with dealing with both of diseases. I would also love to stay in touch with all three of you! I am so glad i felt like I was finally able to reach out to SOMEONE, but it makes it even better that those someones know and understand exactly what I'm going through. I feel like I can manage the emotional strain as long as I use the resources. Thanks again and I wish you all the best as well!


          • #6

            I'm in my second year of college and I too have I.C. and endometriosis (and a mess of other diseases, yuk!) so I can totally understand everything you're feeling. It is a hard life to live at times, but it can still be worth living.

            First and foremost, it's important to find a treatment that will work for you and help your life have the best possible quality level. This might mean lifelong medication like Elmiron or low-dose antidepressants (for nerve pains), birth control to manage the endometriosis, pain medication when you need it and other, natural therapies if need be. My endo was terrible until I started Seasonique two years ago. At first there's alot of breakthrough bleeding but after about 6 months it really helps "slow the flow". I went from bleeding 15 days a month to having a 6 or 7 day, light period every 3 months. If you're feeling overwhelmed, go to your doctor and let him know about your symptoms. Let him know that you want information on all of your options and discuss what's going to help you live a better life.

            Painful sex is one of the worst aspects of I.C. and is usually caused by vulvodynia (or, "vulvar pain") Basically, the nerves at the entrance of the vagina are inflamed and irritated (just like our bladders) so any touching or tampon use or sex or sometimes even urination can be excruciatingly painful I hope that your fiance is understanding and if he is worth marrying, he will love you for who you are - "in sickness and in health". I have very low self confidence and am often very sad when I can't have sex with my fiance for weeks on end because of the pain. It helps to remind yourself that a relationship is so much more than sex, and that while it is an important part of a relationship, it isn't a defining factor.

            Some things that have helped us when we try to have sex are doing something really relaxing beforehand (massage, shower, etc), going super, super slowly at first (because with vulvodynia, that first inch or two of the vagina is the most sensitive) and trying different positions until we find a comfortable one. It isn't always easy and many times we just have to stop, which makes me feel bad. What I suggest you do is have a serious talk with your fiance (if you haven't already) about how you're feeling about sex. I did the same, and it made me feel alot better. It is true that bottling up our feelings is quite destructive.

            Struggling with feeling alone and depressed and confused is very hard and a very real part of having this disease. I encourage you to reach out to people on these message boards as we all have been there and felt that.

            I was very religious until I was diagnosed. From then on, my faith just went downhill until now I am completely irreligious. I think the combination of the pain from all my diseases and learning about so many religions in college (that's my major) were the straws that broke the camel's back. Hopefully, if you want to, you can hold onto your faith and perhaps see a Christian counselor if one's available?

            The bottom line is, we I.C. people have been given very tough lives - but it makes us stronger and better once we do overcome it. Stay positive but know it's okay to break down and cry. Try to live your life to the fullest but know it's okay to stay home and watch movies for a week under a warm blanket. We have special circumstances and the people around us respect and know that.

            You'll be in my thoughts, hope you feel better soon!

            Diagnosed with IC in 2005, since then have been diagnosed with an unspecified autoimmune disease, with inflammation in my bladder, colon, left knee, left ear, left eye, lungs and pericardium. Argh!

            Medical research addict.

            Likes: hot baths and naps with cats


            • #7
              *hug of support*

              I have an idea of how you feel! I too was diagnosed with IC and endometriosis. I also struggle with severe GERD, chronic fatigue and Grave's disease. Lately I have also been dealing with depression, based on a number of things that have been going on. I am a University student, who is doing an internship placement right now that requires 40-60 hours of work/week. So I have really been struggling with keeping everything going.

              As for advice....when it comes to relationships and sex, what I've learned is to be open and honest with my husband. If I'm in too much pain, I have to tell him so! I used to try to just suck it up and make it through...until I realized that he didn't enjoy it at all when I wasn't into it, and he felt even worse when he found out that I was in pain! So, I figured out I wasn't being very fair keeping it all to myself, as it is something that we both have to deal with. Not sure if that's helpful or not, but I've found that working on communication was the best thing that ever happened to our sex life!


              • #8
                You will get through it I promise I was almost the same situation I thought this will never end and there is hope so keep on smiling and lift your head up high and forge on .


                • #9
                  I know EXACTLY how you feel. I literally cried reading your post because I related to it so much. Having IC is a really hard thing to accept and sometimes I just thought about quitting, like whats the point if I can't do anything in life, I can't be normal. What keeps me sane is realizing I am LUCKY compared to some people. My cousin had brain cancer when he was 6 and although he is my age now (19) he isnt who he used to be. You can physically tell he was sick, although he understands you it is just different. He will never be able to work. So I look at myself and realize, although I am BAD I could always have ended up worse.

                  The sex thing is what really gets to me. That's the part that breaks me down the most. I have been with my boyfriend for 6 years and I KNOW that sex isn't the main part of the relationship, but it is important. On top of having IC I also have Vulvar Vestibulitous which as someone previously mentioned makes the first few inches really painful. There are some days that we will try and it just can't happen because I am in so much pain. Sometimes even being slow doesnt help. On top of that, all the medicines I am on (including my BC) makes me have a low sex drive. He knows that this isn't my fault but in the back of my head I can't help myself but blame me. I often feel as if I am holding him back from things that a normal guy should be having. Almost as if IC wasn't just ruining my life but also his. I am always so scared that he is going to leave because i'm not "functional" and I am so scared to lose him, but in a sense maybe if I did it would be better for him. We have openly talked about it and he knows what I have and supports me 100% and always tells me that he would never leave me. I think that I will always have doubt in my mind. Especially when it gets as bad as maybe only being intimate once a month. I am going to another specialist for my Vulvar Vestibulitous but I dont know. I think this is something I will always beat myself up for. I am even writing this as I am crying because I feel like such a failure and that he deserves better.

                  School wise I have been lucky. I always miss parts of my classes due to IC but I manage to catch up some how or learn it on my own.

                  I really am praying for you because I know how this feels, especially the sex part and knowing how much that hurts I wouldn't wish that on my worst enemy. I fear that he will compare himself to other guys his age and realizes that he has been "burdened" with me. I know he says no but I think I will always feel like that.

                  Thanks for whoever actually read all of this. It means a lot. I never talk about the sex situation because I always cry when I bring it up. Almost as if I ignore it and it will go away, but it will always be there. Thank you
                  Medicines Taking
                  • Elmiron 3x a day
                  • Amitriptyline 1x a day
                  • Pyridium as needed

                  “I've always made a total effort, even when the odds seemed entirely against me. I never quit trying; I never felt that I didn't have a chance to win.” -Arnold Palmer


                  • #10
                    I just read your post and I wanted you to know that even though I am much older I can relate to you. Your post makes me feel that our lives with this horrid disease (I have IC and Endo other crazy stuff) are so unfair. You deserve to know you are not a failure, you are an amazing young woman that is facing each day and moving forward with your life. I am so in awe of what you are able to do and your determination that comes across in your words. Just know that today, as I sat at home resting (had a head cold and took a medicine that made my bladder flare) and feeling guilty for not going to work (I teach high school Chemistry so subs usually suck) that your post gives me strength and encouragement.
                    take care,