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  • Interstitial Cystitis/ Endometriosis/Chronic Pelvic Pain

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    Old 01-30-2003, 01:19 PM   #1
    jackalack's Avatar
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    Question Interstitial Cystitis/ Endometriosis/Chronic Pelvic Pain

    I am 24yrs. old and have been officially diagnosed with interstitial cystitis. I never even knew what this condition was, util my mother-in-law introduced me to it via a book by Dr. Gilepsy. I have been dealing with this for quite a while now... I first started noticing probmlems in College. I had frequent urination, especially at night during my junior and senior years. It was so embarassing, I couldn't endure a trip ANYWHERE without having to stop and use the restroom at least two or three times. I even went without drinking anything, but that only make the spasms worse. The frequency isn't what really bothered me though. It was when I began experiece vaginal and bladder pain. I have been married less than two years, and my husband and I were both virgins... so when I started having pain during intercourse I just assumed it was natural... but the pain got worse and worse. I also kept having what I thought were yeast or bladder infections. But whenever I would go in for an analysis or culture, it would come back negative. I was soooo discouraged... finally I learned about interstitial cystitis, and I scheduled an appointment with a uriologist. After a surgical procecure called a cystoscopy, he confirmed that my bladder was definitely inflamed, that I have interstitial cystitis. This disease can be pretty dibilitating at times... but I am learning to live with it. The problem is that I have noticed that I now am experiencing new symptoms that don't match up with the profile for the condition. Whenever I urinate after lying down, my lower back and front abdomen will hurt. It can be compared to menstrual pain... and NOTHING helps take it away. If this happens at night, it normally lasts until I am able to fall asleep. I have asked me doctor about this, but he has no idea what could be causing this. I have also been diagnosed with endometriosis. I was wondering anyone has any info about this particular problem that I am having. It seems only to be getting worse. My left side has begun to hurt too, only this happens at any given moment all day long... Last week I had a very painful period and had to have an ultrasound done. The results showed two ovarian cysts. My gyn said that these are nothing, they are simply physiological that they are not responsible for causing my pain. As a last resort, he is sending me to a Chronic Pelvic pain clinic in Chapel Hill. I also had my uriologist do a blood test (ebs) which came back negative, but did show that I had had mono in the past. Can anyone help me out??
    I have been on anti-depressants, birth control pills, Depro Lupron, Elmiron, muscle relaxers; and have been to many many doctors and specialists -- who like to claim that this is all in my head!!!

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    Old 02-01-2003, 06:51 AM   #2
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    I experienced this in my first marriage. It was very confusing. I had many examinations and was sure I had some kind of infection, too. I was unable to have sex, and it cost me my marriage, since my husband was young and took it personally.

    Years later, I realized that I had some complex issues with intimacy and needed better coping skills, because I was internalizing my emotions. Personal and/or marital conflicts seriously affect how one functions sexually, and can and does cause physical pain. The symptoms often mimic other problems, but that does not mean you have a physical illness. Females have to be VERY relaxed and trusting to be able to have enjoyable sex. If your mate is in any way too fast, or too anything that bothers you, it easily affects sexual function. It is extremely common. It is just how the female is made!

    Since your doctors give you a clean bill of health, you may do well so seek some marital or personal counseling for yourself. That doesn't mean it is all in your head.
    It is still real physical pain.

    I know we don't like hearing that we may have an emotional problem, but it is better to hear it and deal with what bothers us than to assume it is physical, when nothing physically wrong shows up.

    [This message has been edited by friend (edited 02-01-2003).]

    Old 02-01-2003, 08:01 AM   #3
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    There are physiological causes for this as well, and it may take you and your doctor some time to determine the underlying problem[s].

    Suggest you do a search for this article as a starting point. [Enter - copy & paste - all of the information below when doing your search.]

    Intercourse, Pain During
    Author: John G McManus, Jr, MD, Research Director, Department of Emergency Medicine, Darnall Army Community Hospital; Assistant Professor, Department of Emergency Medicine, Scott and White Medical Center, Texas A&M University

    Old 02-03-2003, 08:16 AM   #4
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    First of all do not belive in anyone (including drs )who says that your pain is all in your head. I do have interstitial cystitis for over ten years and I personally know what kind of a horrible illness it is. It took me several urologists and gyns to get diagnosed. They kept telling me that it was all in my head but what I knew I was experiencing real pain so I kept looking for and finally found the right urologist. It is normal to experience pain and discomfort with intercourse if you have IC. I used to until I got treated. My IC is mild and DMSO cocktail treatments helped me tremendously. Have you tried DMSO for your IC? You probably know this but there is no cure for it but there are many treatments to decrease the pain and discomfort in the bladder and the pelvic region.

    Regarding the other pain and abnormally heavy periods you are getting lately, it could be your endometriosis causing it. What have you done for it? There are treatments for that too.

    BTW, I think in Dr. Gillepie's book there is a section on endometriosis and IC. I read her book too as well as I saw her in her LA practice in the 90s. She had to close down her practice. I heard that she got into trouble with the Board and I can see why. However, her book is pretty informative. Also, there are many many articles published in technical journals regarding IC.


    Old 02-06-2003, 07:44 AM   #5
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    ...For the endometriosis I have done just about all that a person can possibly do for it. I have had lapryscopy, hysteroscopy, and a D&C. I have also been on back-to-back Birth control pills (keeps you from having to mensturate for months at a time), and most recently Depro Lupron. The lupron was the worst thing I could have ever done! you want to talk about a living night mare. The monthly injections forced my body into a sudden temporary menopause. I had hot flashes constantly... not to mention severe migraines, extrememe mood swings, and major sex problems!! My poor husband. Whenever we would try and have sex, I would be in soooo much pain. I would try and hide it from him, but that only made it worse. I also suffered from frequent pelvic floor spasms! We thought we would never have a normal sex-life again! Thank goodness that is over!! That medicine just about did our marriage in... I can't believe he didn't just walk out and leave me-- I would have left me! I was a BEAR all the time... I was sooooo angry for no apparent reason. I couldn't stand to have him near... and my sex drive was at a bigg fat "0". The pain was so bad, that afterwards and the next day, I would be in tremendous vaginal pain!
    ANyway, nothing seems to have helped the endo. I also went a nutrition regimnet from an applied kinesiologist clinic in Colorado. NOTHING is helping. Nd what makes it even worse, is that even the pain medication helps... but it makes me even more sick! I am basically bed ridden for 3-5 days a month. That is exactly how I got to spend Christmas eve and Christmas this year! :0(


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