Latest Blog Article: Interstitial cystitis is more of an injury to the bladder
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  1. #1
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    Does hysterectomy help relieve IC pain?

    I've had pelvic issues: endometriosis, fibroids, poly cystic ovaries for years. My gyn thinks a hysterectomy (only uterus removed) would offer me some relief of this pain. She also thinks that I have Adenomosis, which an MRI report stated I likely have...GYN's opinion based on my symptoms and her examination of me.

    I'm wondering if anyone out there with an IC diagnosis had a hysterectomy and if they are feeling less pain.

    Thanks!

  2. #2
    Forum Manager ICNDonna's Avatar
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    If part of your pain is from the endo, fibroids, etc., you should feel better after the surgery.

    Donna
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  3. #3
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    Thanks, Donna.

    I simply can not tell which is causing me more discomfort the IC or my uterus. I would have to have major surgery and then not have any relief.

  4. #4
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    Also wondering if the Santevia water filter is a good idea. Supposedly an alkaline diet is helpful for reducing inflammation. Any experience with this?

  5. #5
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    I think some of the pain can be from the pelvic swelling of all you're going through. I am scheduled for a hyster on March 13, and my husband swears my IC flare (1st in 10+ years) is due to the issues I'm having gynecologically. Issues started November 2012, flare came January 2013. Coincidence, maybe. After hyster talk to your doctor about hormone replacement (Estrace). It's supposed to build up the walls of the urethra and bladder wall.

  6. #6
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    Thank you

    Thanks for the response. I appreciate that people are willing to share.

  7. #7
    Support Volunteer carole's Avatar
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    sarich99 I have fibroids and Adenomyosis and not sure if I will need a hysterectomy. Can you tell me did you get your hysterectomy and did it affect your IC
    Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

    Tried:
    Detrol:only took one pill and it made me sick
    Elmiron:caused horrible pain(took 1 week)
    CystaQ:caused alot of burning and pain(only took one pill)
    Wellbutrin:only on it for three days as it caused alot of bladder pain
    Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
    Prelief:made my bladder burn and feel tingly.

    Take:
    Uracyst:Started May 19 2011
    Enablex:take one pill daily with no issues
    Naproxen:for pain as needed
    Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
    Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
    Supplements:Whey Protein powder daily

  8. #8
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    Quote Originally Posted by carole View Post
    sarich99 I have fibroids and Adenomyosis and not sure if I will need a hysterectomy. Can you tell me did you get your hysterectomy and did it affect your IC
    I did have my hysterectomy on March 13. Total removal of ovaries, uterus and cervix. I have found that my bladder is better, and my Urologist also contributed my symptoms pre-surgery to be affiliated with my endometriosis, etc. I also had Adenomyosis (endo of the uterus). I do have to say that with the lack of hormones my bladder does get sensitive, but I'm on my third type of estrogen replacement and that is also a factor. Balance out the hormones.

    I no longer have to worry about flare ups before my period, and my life doesn't revolve around getting my period!

  9. #9
    ICN Member vicpic's Avatar
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    I was diagnosed with adenomyosis today and feel that it is playing a big part in my pelvic pain. Diagnosed by ultrasound. Satich99, why did you need to swich estrogens and which one now works for you? i'm considering having a hysterectomy. I also have endometriosis and pelvic congestion.
    Thanks!
    Current diseases: IC, sjogren's syndrome, RA, hashimoto's thyroiditis, autoimmune diabetes, peripheral neuropathy (PN), TMJ, sciatica, sinusitis, endometriosis, adenomyosis, PFD, fibromyalgia

    Current medications/supplements/treatments for IC: Marshmallow root, Prelief, probiotics, Ativan, Vicodin, rest, ice, heating pad, IC diet, high dose vitamin D, alkaline water.

    Meds/supplements I tried and failed: Elmiron (caused immediate bladder pain), Cystoprotek (aslo caused bladder pain), Desert Harvest aloe vera capsule (aggravated another medical condition), Elavil (caused palpitations/dry mouth), alkaline mineral powder (caused bladder pain). Considered Interstim neurostimulation, but it only helps frequency/urgency.

    Try to stay positive and find joy in every day!

  10. #10
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    The doctor switched me from patch to spray to see how the spray would work after the patch dosage wasn't enough anymore. Not sure why. I liked the patch. If spray increase doesn't work, I'm going to ask to go back to patch.

    I know a few people who had to play around with estrogen until they found a dose and kind that worked.

  11. #11
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    i had a hysterectomy last fall and definitely found overall my bladder is better. Likely because i had a very enlarged uterus and fibroids pushing against my bladder. I still do flare; however, and have had a flare that was worse than ever. my flares are usually my own fault and related to diet deviation. i don't know your age but if you aren't menopausal age i would consider other options first.

  12. #12
    ICN Member Kirs10's Avatar
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    I had a hysterectomy in 2003 and it definitely made things much worse for me. But it was not just a hysterectomy is was also supposed to be a bladder suspension too. I began to bleed during the bladder suspension and almost bled out on the table so they couldn't continue the proceed. And after that experience my IC was extremely painful.
    Started Vaginal Valium Suppositories April 2014
    Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
    Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
    Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
    Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
    Interstim repair December 2008,Removal of the Interstim August 2011,
    6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
    Diagnosed with Raynaud's Syndrome November 2013
    Ambien 5mg for sleep.
    Elivil 50 mg at bed
    Lisinopril 20mg in AM
    Effexor 225 mg
    Oxycodone 5mg if REALLY needed for pain
    Baclofen 20mg 3x a day
    Phenazopyridine 200 mg as needed
    Omeprazole 20 mg at night
    Lyrica 450 mg daily
    Requip .50 mg at night
    Ketorolac 10 mg as needed for migraines

  13. #13
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    hysterectomy not improving my IC symptoms

    Quote Originally Posted by Jenny333 View Post
    I've had pelvic issues: endometriosis, fibroids, poly cystic ovaries for years. My gyn thinks a hysterectomy (only uterus removed) would offer me some relief of this pain. She also thinks that I have Adenomosis, which an MRI report stated I likely have...GYN's opinion based on my symptoms and her examination of me.

    I'm wondering if anyone out there with an IC diagnosis had a hysterectomy and if they are feeling less pain.

    Thanks!
    I was very disappointed...had a complete hysterectomy March 25 because doctors were sure this would "fix" my problems ...saw no improvement and actually made urination much harder from the day of the surgery...tried to explain this to the doctors at the hospital and they blew me off telling me it just takes time...well, 6 months later, the problem is worse...and no one seems to understand the problem...constipation, incredible gas, feeling like I have a UTI, lots of swelling, etc...just ruining my life quality...I am extremely careful with diet, do all the right exercises...but every day something is wrong...and always worsens as the day progresses...I was totally healthy until 3 years ago...retired, had a great part time job/hobby...no real stress...have been to 6 different doctors with no real relief...it ruins any long range travel plans and makes me not fun to be around...I would welcome any suggestions/feedback.

  14. #14
    Support Volunteer carole's Avatar
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    Quote Originally Posted by Kirs10 View Post
    I had a hysterectomy in 2003 and it definitely made things much worse for me. But it was not just a hysterectomy is was also supposed to be a bladder suspension too. I began to bleed during the bladder suspension and almost bled out on the table so they couldn't continue the proceed. And after that experience my IC was extremely painful.
    Did it make your IC worse permanently or temporarily?
    Daughter your faith has made you well,go in peace, and be healed of your disease.(Mark 5:34)

    Tried:
    Detrol:only took one pill and it made me sick
    Elmiron:caused horrible pain(took 1 week)
    CystaQ:caused alot of burning and pain(only took one pill)
    Wellbutrin:only on it for three days as it caused alot of bladder pain
    Elavil:Took one pill and it caused a flare that lasted almost two weeks. It was the longest flare I've ever had. Never again..ouch
    Prelief:made my bladder burn and feel tingly.

    Take:
    Uracyst:Started May 19 2011
    Enablex:take one pill daily with no issues
    Naproxen:for pain as needed
    Baking Soda with water:as needed and it's a God send. It brings down my pain within 20 mins.
    Venofer: Started April 2012 by IV for low Iron. I do not tolerate oral Iron so this is the route I had to take.Does not bother my bladder but did have other side effects. I take Benedryl with each treatment to avoid side effects.
    Supplements:Whey Protein powder daily

  15. #15
    ICN Member 76sunflowers's Avatar
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    Wilmington, NC
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    I had a complete abdominal hysterectomy (everything removed) and often regret it. I knew I would need one soon but had not yet had children and felt very pressured by family that the hysterectomy would fix everything. My mother in law told me that if I love my husband that I would not wait to have the surgery and cause him any suffering from dealing with my illness. I found out shortly before my surgery that I also had IC. As I was being rolled out for surgery I said I didn't want to do it yet...I pleaded and cried but my family insisted and I was hooked up to IVs and unable to "escape". The hysterectomy made things incredibly worse for me. I can't begin to explain the escalation of pain and the permanent impact on my life. Yes, I needed the surgery but it could have waited a couple years or so and given me a little more time of less of what I'm going through now and possibly a child. But that is all in the past and everyone's experience is different. Some people do experience improvement post hysterectomy, I'm just not one of them. It's impossible to predict how one's body and life might be affected. I pray for everyone in this situation to have a better quality of life post surgery.

    Hugs, prayers, and best wishes...
    Tried Elmiron, Elavil, Atarax, Botox...with no success and/or adverse reactions.

    Current: self administered bladder installations (down to 2x a day per dr advice), Lamictal, Lexapro, Lorazepam, Zyrtec occasionally, Prelief, Tramadol, Oxycodone, Trimethoprim at bedtime, Gabapentin, Omeprazole, Flector patch, Tens Unit, warm baths, other forms of heat therapy, IC diet, Gluten/Wheat free diet, vitamins and Premarin because of hysterectomy and osteoporosis.

    Have difficulty getting pain under control from IC and other health issues. I've pretty much accepted it as part of my life.

    I am thankful for supportive family and friends. Not everyone is supportive all of the time, but I am so thankful for the support I do receive.

    I pray for healing for all and for a cure.

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