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  1. #1
    ICN Founder icnmgrjill's Avatar
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    Hysterectomy and IC

    Could your pelvic pain be the result of interstitial cystitis?
    Before considering hysterectomy, it can be helpful to rule out the bladder as a source of your pain.

    Author: Jill Osborne, President & Founder - Interstitial Cystitis Network

    Has your doctor has suggested a hysterectomy to cure your pelvic pain and discomfort? Like millions of women around the country, you might be considering it. Who wouldn’t when faced with agonizing pain each month or day. But, there may be another source of pain that you haven’t considered, your bladder. It might be helpful to learn more about this other common and treatable source of pelvic pain, interstitial cystitis.

    Do you recognize any of these symptoms?
    Interstitial cystitis (IC) patients often experience pressure, tenderness, or pain in the bladder and pelvic area. Symptoms may also include urinary frequency (of up to 60 times a day), increase nighttime voiding (nocturia), sudden moments of urgency (the I’ve got to go NOW feeling) and discomfort associated with sexual relations. Many patients notice that their pain worsens as their bladder fills with urine that is relieved after voiding. However, some patients just feel pelvic pain that they are convinced is coming from their reproductive tract.

    Why does the bladder hurt?
    In IC/PBS, the bladder wall is usually very irritated, inflamed and/or injured. When doctors examine the bladder wall, may find glomerulations (pinpoint bleeding caused by recurrent irritation). Larger, more painful wounds (Hunner's ulcers) are present in 10 percent of patients with IC.

    The cause of IC remains a mystery. In a 2000-2001 ICN Research Survey, we asked patients how they believed their IC began. Some IC patients reported that their symptoms began after a traumatic event, such as a fall, car accident, pelvic surgery (i.e. hysterectomy or ovarian cyst removal), childbirth or chemical exposure in a swimming pool. Others believed that their IC began after a severe UTI or as a result of another medical condition, such as fibromyalgia. Some patients thought that their excessive drinking of sodas (diet & regular sodas), coffees and/or alcohol was the cause of their IC.

    The common factor in all of these events is their potential for irritating the bladder wall. Thus, our model for IC is that of an injured or irritated bladder.

    What can be done for IC?
    We’ve come a long way since IC was first discovered. Now that we understand that IC is like a wound struggling to heal, our therapies are focused on reducing inflammation and irritation using a multimodal approach. We want to reduce trauma and irritation to the bladder and give it some time to recover.

    To reduce inflammation, IC patients may use an antihistamine (such as hydroxzyine) to help reduce mast cell activity. They may use a protective coating (such as rescue instillations, elmiron or sodium hyaluronate) that can cover up the wounds in the bladder so that they are not irritated each day by urine. A low dose antidepressant can reduce neuroinflammation in the pelvis. If pelvic floor dysfunction (aka very tight painful muscles) and/or trigger points are present, then physical therapy is used. Several over the counter supplements have also gained in popularity, particularly products which use quercetin (such as Cystoprotek, Algonot, CystaQ or Bladder Q).

    You may be surprised to learn that many ‘at home’ self help strategies can be very helpful in reducing bladder symptoms. Diet modification is the foundation for success. If you poured on a wound every day, what would happen?? It would get worse. Most IC patients will gladly share with you the painful flares that they’ve experienced after eating or drinking certain foods. Some may experience pain within minutes, but most notice that their pelvic pain is much worse that night when sleep becomes nearly impossible for all the trips to the restroom and/or pain.

    Our goal is to make sure that you’re not accidentally irritating your bladder further. It’s very important to stop ALL coffees (even decaf), ALL teas (even green tea), ALL sodas, ALL products with artifical sugars, ALL chocolate (sigh!) & ALL concentrated fruit juices. Even one cup of decaf coffee a day can be a disaster for an IC patient’s irritated bladder. You can learn more about diet and IC risk vs. friendly foods at: http://www.ic-network.com/handbook/diet.html

    IC & Hysterectomy
    IC patients may struggle with other related disorders that can make diagnosis more difficult. Irritable bowel syndrome is a common complaint, as well as pelvic floor dysfunction, vulvodynia, chronic pelvic pain, allergies and anxiety disorder. Sadly, many patients have endured unnecessary surgeries, such as an unnecessary hysterectomy, before their interstitial cystitis was properly diagnosed.

    In early 2006, Angela Burch (Florida) was awarded $2 million by a federal judge resulting from medical malpractice case relating to her hysterectomy. Ms. Burch had struggled with pelvic pain and bladder difficulties for many years. In a situation that we believe is quite common, her physicians disagreed on the source of her pain. Her urologist believed that she had interstitial cystitis while her internist and OB-GYN suspected that she had endometriosis. Regrettably and inappropriately, a hysterectomy was performed despite the fact that her uterus was perfectly normal and no evidence of endometriosis was found.

    Dispelling The Myths
    You may be thinking that you couldn’t possibly have a bladder problem. After all, only old women struggle with problems. If that’s what you think, you’re wrong. Recent research now suggests that 12% of women in the United States have early signs of IC. The majority of women who visit the IC Network are between the ages of 18 and 40.

    Take the PUF!
    If any of the symptoms we’ve described above sound familiar, you can take a simple questionnaire that will, in just minutes, help you and your doctor determine if the bladder could be part of your problem. The Pelvic pain, Urgency Frequency (PUF) Questionnaire is the newest diagnostic tool available and, best of all, it doesn’t require a pelvic exam. It’s available on-line at: http://www.orthoelmiron.com/html/elm...prescreen.jspf

    If your results suggest that you could have IC, your doctor may ask to perform a simple Potassium (KCL) Sensitivity Test. This brief test involves placing water and then a potassium solution in your bladder via catheter. A healthy bladder will not react to either. A patient with IC will notice that the potassium salt solution can provoke symptoms. While the KCL is not conclusive for IC, it does determine if the bladder wall is intact. Using both the survey and KCL test is helpful in identifying IC patients of all ages.

    About the IC Network
    Like Hystersisters founder Kathy Kelley, the IC Network was started in 1995 by IC patient Jill Osborne. The ICN is the largest support community for urology patients on the web today, with more 300,000 patient visits a month in our support forums, weekly live chats, guest lectures, newsletters and much more! In addition to IC, we provide support for patients with overactive bladder, pelvic floor dysfunction, recurrent UTI’s, eosinophilic cystitis and others.

    Conclusion
    Bladder problems can be treated but it begins with self-awareness. If you are urinating more than 6 times a day, getting up at night more than once or experiencing pain and discomfort during or after sexual relations, you could have early signs of IC. The best part about early recognition is that early treatment, perhaps just diet modification, can nip this problem in the bud. But, if you let it develop over time and are too embarrassed to talk about this with your doctor, it may be much harder to treat! Act Now! Take the Quiz! You are not alone!


    Other Resources:
    Learn more about interstitial cystitis at:
    http://www.ic-network.com

    Treatments, Self Help & Diet
    http://www.ic-network.com/handbook/

    IC Books, Publications & Newsletters
    http://www.icnshop.com

    About Jill Osborne
    http://www.ic-network.com/patientstories/jill.html

    PUF Questionnaire
    http://www.orthoelmiron.com/html/elm...prescreen.jspf
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  2. #2
    Guest emilyrose197377's Avatar
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    Good post Jill. I found with my hysterectomy it took all the pressure off my bladder. I agree some pelvic pain in women are caused by IC. So it is best to rule out other things that is causing your pain.

  3. #3
    Registered User Baba Yaga's Avatar
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    Kim, that sounds wonderful! I hope your recovery continues to bring you good signs and good news!

  4. #4
    ICN Member charmedx3's Avatar
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    Jill, this is great! I wish I had seen this before my hysterectomy! I had my surgery in Nov 04. I found out about IC in about march 05. I have finally found a uro I am working with, here it is almost 4 yrs since my 1st symptoms showed up!
    mom to 3 wonderful kids


    IC symptoms 7/03,
    hysterectomy 11/04,
    prolapse cervix 7/07
    diagnosed: IC 2007
    IBS 2008

  5. #5
    Guest emilyrose197377's Avatar
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    Quote Originally Posted by Baba Yaga
    Kim, that sounds wonderful! I hope your recovery continues to bring you good signs and good news!
    Ty Wendy.

  6. #6
    ICN Member tigger_gal's Avatar
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    Thumbs up

    Jill,
    What an outstanding post... **stands up and applauds**
    I had my hysterectomy in November. It seemed to have taken off some pressure of my bladder, but, none the less my pain (bladder and pelvic) are still very much active on a daily basis. I also have pfd, fibro ect... I don't reccomend any IC patient to get a hysterectomy unless it is medically necessary.. Mine was done because I have a history of severe dysplasia, and excessive uterine bleeding. I have not, in any way, shape, or form got any relief from pain because I got a hysterectomy. What I have gained, is extended irritability, overly emotional all the time, massive hot flashes, and never ending headaches from my hair having to be pulled up off my neck because of sweating.. I went so far to have my hair, that was to my mid back, cut up above my shoulders, and I still have to get it up..
    will not take synthitic estorgen, because it sent my grandmother into early dementia.. I will surivie this, because if I can surive IC and all that goes with it, I can surive anything..
    'The will of God will never take you where the Grace of God will not protect you.'

  7. #7
    ICN Member glitteringglory's Avatar
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    Hi all. I have been diagnosed with IC-2 years ago but I have had it longer than just 2 years. Anyway, I have had constant pressure pain for years. I can control the burning of IC, by diet but nothing, I mean NOTHING helps the pressure pain I have. I have tried to even go without food, and still the pressure pain is there. I have been taking pain meds for over 2 years due to this pressure pain. My ideal situation is to be off of the pain meds. I so badly want to not have constant pain.
    I was told that my uterus is bigger than normal and on my bladder in a horseshoe shape. This could be the cause of my pressure pain and on an IC bladder none the less.
    I would not get my ovaries removed so hormones would not be an issue. I am considering getting my uterus removed but am trying to research it.
    It is so hard to know what to do. Worse case scenario would be to get a hysterectomy and the pressure pain to remain. That is what I am scared of. What do you girls think??

    Check me out on facebook: http://www.facebook.com/glory.ic
    Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
    Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
    Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
    Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
    The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
    IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

  8. #8
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    Pain after Hysterectomy

    Greetings,

    18 years ago I made the decision to have a total hysterectomy. It wasn't an easy decision to make and sometimes I wonder if I made the correct one. I was 27 and had one child. My doctors thought it was the best decision for me to make. I was in constant severe pain 24/7. I couldn't function. I had ten surgeries prior for endometriosis including an oophorectomy. I had so many large ovarian cysts, that I was scared of getting ovarian cancer. I wanted the pain to end. I had been in pain ever since puberty began. I wanted a pain free life. My pain free life never came. In fact I couldn't even find a doctor that could help me. Each GYN I consulted with basically said, "you don't have any organs, I can't help you." I finally found a doctor about two years ago that said, I know what is wrong with you. It's been a long road to this point, and the pain and pressure is still here, but at least I know what I am dealing with. I now have a fighting chance, and I am fighting.

    I now deal with life without hormones which is difficult. I am one of those unlucky individuals that had endometriosis after hysterectomy. I think my IC would be easier to control if I could take hormones. Please think long and hard about removing an organ.

  9. #9
    ICN Member Snowden1's Avatar
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    Your story is similiar to mine. I had severe endometriosis and wanted to get rid of the pain. Finally, I decided on a total hysterectomy. When inside they found endometriosis on my appendix too and removed that. I then got two MAJOR infections that took months to get rid of. Then IC started. If I could take back the hysterectomy I would in a second. But, we each need to decide what is best for ourselves.
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

  10. #10
    ICN Member glitteringglory's Avatar
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    Thanks for sharing your experiences, ladies!
    I would have to say if my ovaries were removed and that sent me into pre menopause or if I got an infection that took 2 months to get rid of, I would also be upset and would not be happy I had such a surgery!
    I do have to look at all experiences though. I did talk to my grandmother who had both a hip surgery and a hysterectomy. I asked her which was easier and she said the hysterectomy. So, it would be a lesser surgery than what I just went though in April. Still, I would not want it done if there were no help in pressure pain but I had a few women (at church and my grandmother who had uterine problems, too-seems it runs in the family) say they are happy they got the hysterectomy. I am hearing both sides of the stories, those happy with it and those not happy with it. It seems things can go wrong and what is worse is that sometimes doctors will remove things without asking-grr.
    I am taking an online class this autumn and will be very busy so I will not consider this surgery until December at the earliest. So, I have some time to think on it, research it, ask others' experiences, and pray for guidance until the time I make the decision. I have not decided yet. I do appreciate hearing all views and to know the risks involved. So thank you for your time to those who responded!

    Check me out on facebook: http://www.facebook.com/glory.ic
    Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
    Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
    Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
    Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
    The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
    IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

  11. #11
    ICN Member Snowden1's Avatar
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    You are very welcome. I think that you can still homeschool is wonderful. I homeschooled until this year. I can't do it consistantly through the pain, so my daughter will be going to school (Christian - 4th grade) this year. It is going to be a shock for her. I hope someday I can get a handle on this so that I am not miserable all the time. Take Care, and good luck with your decision.
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

  12. #12
    ICN Member glitteringglory's Avatar
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    My daughters are technically in public school but everything is done at home, so I sometimes call it homeschooling. Also, we are involved with the local homeschool community in our town. My kids are in this virtual school called Connections Academy (www.connectionsacademy.com). My daughters have live lessons with teachers and students, a full curriculum that is sent to our home, grades from teachers, etc. So, I simply oversee it!
    I love virtual school! It's the best thing since sliced bread!
    My girls will start 4th and 5th grade in September. They even take subjects I know nothing about like Spanish and French. I took German in school/college but my daughters did not want to take German. Still, my girls learned on their own with the computer and both obtained "A"s in those foreign languages! It's amazing what kids can learn on their own! My kids have to be somewhat independent because of my health. I've taught them how to research and work hard. It's paying off now.

    Check me out on facebook: http://www.facebook.com/glory.ic
    Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
    Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
    Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
    Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
    The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
    IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

  13. #13
    ICN Member mvazquez's Avatar
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    This is an interesting post Jill. I have a very large fibroid on my uterus and my doctor and I just discussed removing just my uterus. I have decided to wait because I don't want another surgery (I have had many though not related to my IC) and I don't need any added pain!
    We also discussed the fact that my flares may ease up since they tend to come 1 1/2 - 2 weeks prior to the start of menstruation, but there is no guarantee. It is a major surgery and shouldn't be taken lightly for sure.
    Marcie

  14. #14
    ICN Member Eastshield's Avatar
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    Hysterectomy and IC

    I had a partial hysterectomy back in the mid-90's due to endometriosis. Not long after I had the pressure pain and severely distended belly, which were similar to the symptoms present with the endometriosis. At first I thought the endometriosis was growing back, which apparently it can do if there are microscopic pieces left. After at least 2 years of symptoms, which were NOT a recurrence of the endometriosis, my GYN sent me to a urogolist who was able to diagnose me right away.

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