9.19.2013

Answers to IC questions


IC Symptoms & Treatments

September is IC month and I am so excited that you wanted me to answer some questions, in fact what im going to do is post my story that was shared on "New Beginnings" website, they approached me and asked to share my story about IC, so here it is below, if you still have questions leave them at the bottom and I will answer in another post. 

My interstitial cystitis symptoms. It was back in 2011 when I first got “sick”- I had no idea what was going on with me. I had many trips to the Emergency room, and every time they told me there was nothing wrong. I was having bladder infection problems, a lot of pressure and a burning sensation, nothing was helping at all They told me to go home and relax. I was so tired of them telling me it was all going on in my head. Finally I saw a gynaecologist who wanted to do a procedure with my bladder. I would be anesthetized during the procedure. The gynaecologist *tried* to stretch my bladder, he said it was full of tiny pin holes that bled when he stretched it. He then diagnosed me with interstitial cystitis.

What is Cystitis?

Here’s the medical definition: interstitial cystitis is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.
Interstitial cystitis (IC) symptoms include:
  • Pain in the pelvis, or between the vagina and anus in women. In men, an interstitial cystitis symptom is pain between the scrotum and anus
  • Chronic pelvic pain
  • A persistent, urgent need to urinate
  • Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis symptoms may urinate as often as 60 times a day
  • Pain during sexual intercourse- I have not yet experienced this one
There is no cure for interstitial cystitis, but it isn’t something that will kill you (such as a terminal disease like cancer). However, the pain is very hard to deal with.

What is Like to Live With Cystitis?

Being diagnosed with interstitial cystitis has changed my life.  I never know when my cystitis will flare up,  never know when it will be triggered by a certain food or drink.  IC symptoms are also triggered by stress. Everyone has stress, but my eating habits had to change. The list of foods I cannot eat is huge. I can’t have any tomato based products, spicy foods, anything acidic, nuts, or processed foods. A lot of fried foods also trigger symptoms of interstitial cystitis. It’s so hard when we go to friends house for dinner, or out to eat at a restaurant.
I get  treatments twice a week for chronic bladder pain. My interstitial cystitis treatments contain several medications that help repair the lining of the bladder. I also get medication through a catheter each Tuesday and Friday. I am hoping they help with the interstitial cystitis symptoms soon! I am on Elmiron for the pain – this is a very expensive medication. Without insurance it costs about $500 per month. I am so thankful for hubby’s great health insurance!
The treatments for interstitial cystitis really affect my mood and personality. I am usually a very happy person, but lately I’ve been having terrible mood swings, a lot of anxiety, and chills and night sweats. I usually sleep with a fan going at night to help me sleep.

Tips for Living With What Cystitis Brings

Never give up. The best advice I can give to anyone dealing with anything life throws at them (not just living with Interstitial Cystitis), is Never Give Up! Never ever give up, keep going, let the love from family and friends get you through each day
Write, write, write. Keep a journal and write in it when you feel like life is too much for you.  Every day I am so thankful for my husband, church and family and friends. They keep me moving forward through the treatments and symptoms of interstitial cystitis.
I am open to talking more about what cystitis is, how to cope with IC symptoms, and how to deal with a diagnosis of  interstitial cystitis.

I am also guest blogging over on my good friend Kera's blog today, check it out here

17 comments

  1. Terri, I'm so glad you decided to share your struggles with IC here today and also informed people what the disease entails. I myself new it was a bladder condition, but didn't know how much it can affect daily life. And of course, thanks again for guest posting on NOAB today :)

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  2. Its great to learn more about what this is. I admire your fight and your ability to talk about it and share this with others so people understand. I do hope you can find a permanent solution to these bladder problems so you don't have to deal with the pain all the time. That just can't be any fun at all. :(

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  3. Thank you for sharing this information on IC, I didn't know too much about it before this!

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  4. This must be so hard to deal with. I hope that your story brings more awareness.

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  5. I'm glad that you have the therapeutic outlet of writing.

    I'm sure it was soooo frustrating going to get checked out and being told nothing is wrong. I think that just adds to the 'scary' factor. It's good they do know now what it is, but I'm sorry it's so painful. :(

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  6. Thank for for sharing such a personal and informative post. I did not know what it was until reading this, hopefully it will help others. HUGS :)

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  7. My sister had this and has since healed. She had gone for many treatments that weren't working but finally, she got rid of it without help from her doctors.

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  8. Thanks for enlightening me on this, I had no idea of its existence! Finally understanding why you feel a certain way is really so helpful in moving forward. I had the same issue with another condition and ever since then, I feel more in control than ever.

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  9. Thanks for enlightening me on this, I had no idea of its existence! Finally understanding why you feel a certain way is really so helpful in moving forward. I had the same issue with another condition and ever since then, I feel more in control than ever.

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  10. OMG I didn't know this existed! Thanks for sharing! And I'm sorry you have it!

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  11. I hope things go well. Im sure it's not a pleasant feeling because before i used to have endometriosis and i can't handle the pain. You are not alone in that fight and you are brave to share it with us. It's education to learn though about this thing.

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  12. I never heard of this, but thanks for sharing it.

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  13. サイズすべての財布する必要があります滞在維持を選択あなたはでペルソナ心。また、ちょうど何かがある内で女性彼らブラックドレスのでドライブ、成人男性はさらに多くの野生理由パックをお気に入りブラックドレス。ショルダー バッグ

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  14. It's great how people think positively when it comes to situations like this. Facing life's struggles always need positivity so we won't break and give up. Keep it up!

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  15. So sorry to hear that you had to go through this but it seems like you have a good knowledge of your condition and what you need to do. And good medical care. Thanks for sharing this. Very interesting.

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  16. You need to site your sources...anyone who reads your blog will be able to tell you didn't write this (it doesn't match the style of your other posts). Anything that post that you do not write, you need to site your sources.

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