Tweet
I'm so physically tired of dealing with this pain, I'm emotionally spent. I feel like no one understands. I just screamed at my husband who has had about 15 kidney stones and I said do you remember what those felt like? Well multiply that pain by 10 and take nothing but tyelnol 3. I've had only 2 or 3 days in the last month that I would say was pain free or at least pain that was almost non-existent. My appt. is Thursday but you all know how far Thursday is when you are screaming pain. I've not felt so depressed in a long time. I don't know what else to, I feel no one can fully understand this but you guys.
-
Last edited by ICNDonna; 09-05-2011, 11:13 AM. -
Wow... I'm so very sorry about your pain. I've had kidney stones and can't imagine your pain. Luckily my IC is not quite as bad on the pain scale, but I can understand you to some extent. It certainly doesn't help to have the person you love and depend on most, not understand. Sometimes I wonder if "some" men just never learned compassion, or perhaps they feel so bad for their loved ones, that they just shut down. I ponder this.
I'm glad to hear about your appointment on Thursday. I know it seems like forever. The only thing that makes me feel better is the fact that I've made the firm decision to do whatever it takes to get better. (seeing as many doctors I have to until I get the treatment I deserve) I can totally understand your feeling of wanting to die. Having this condition, plus other life stressors (unsupportive family and/or loneliness) makes life almost unbearable. I hear ya!
Have you considered counseling? I was hesitant but decided recently to see someone (also at the recommendation of my PT therapist who said stress very seriously aggravates IC) to vent my frustrations to. It might not be a bad idea if you have the time.
I'm sorry I don't have better words to comfort you. I will pray for you.
HUGS!Frances
Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.
Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)
Other conditions: Migraines, allergies, mild IBS.
"If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22) -
And sleep at some point especially u interuppted would be niceComment
-
I am so sorry that your IC has been so bad lately. I wish I could give you a hug! You are such a strong person to have made it thus far and while Thursday seems so far away hopefully your doctor will be able to help. From experience, I would just make sure the doctor understands how horrific you have been feeling lately and that he/she must take it seriously. In addition I found counseling extremely helpful when I felt emotionally and mentally unable to handle things anymore. In the least the therapist may be able to help you deal with your husband and be a place to vent your anger/frusteration even if they can't help with the main problem: pain. I will keep you in my thoughts and I hope you get some relief soon.Comment
-
You may need to make a trip to Emergency Room if you can't get some help from your primary care doc or urologist before Thursday. Please do get some help.
And I absolutely agree that a professional counselor can be a huge help.
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined foolComment
-
I am sorry this is so hard
It is probably a really good idea to find someone to talk to. I have been down the long road from depression and some of the best remedies was talking to someone. It seems so simple but yet so powerful. I would also consider finding a new uro that can possibly help you more. I decided long ago that I would not ever "settle" with a doctor. if you aren't getting any relief from your current regime then you will need to keep looking until you get some a good plan set for treatment. Hang in there! it wil get better!
-Pammylynn Rose
Wishing everyone a pain free bladder day!
Painful symptoms start in May 2011
Diagnosed with IC in Aug 2011
MEDICATIONS
Elmiron
Axert (only for rare migraines)
Strict IC diet
Gluten/dairy/egg free diet
Comment
-
Donna our ER sucks. Plus they would label me as a drug seeker. Our county is unfortunately over run with pill head so they wouldn't do anything for me. I'm in severe pain right now.Comment
-
i really hope u feel better soon !Edit Value
I'm Faith - pain started 6 wks after the birth of my daughter a lil over a year ago .my pain is very deep in pelvis and a few uros have suspected ic ,pain started as a uti and then the deeper pain came ,i was fed numerous antibiotics without an infection present an eventually the uti pain went away and a deeper pain replaced it i also have ,possible pudendal nerve pain or vulvadynia ,and pcos ,insulin resistanceComment
-
I know your post is a few days Old. How are you feeling now? Were the Drs able to help? I'm in the same boat... Depressed all the time. I do see a counselor and yes, it does help as far as getting your frustrations outNancy - newly remarried Sept 2011! Have 5 kids ages 7-22.
Had a UTI in Oct 2009
IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms
Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe
Diagnosed fibromyalgia/lyme disease in 1999
Acid reflux since 1998
Have tried the following therapies:
pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
Ativan-helps some
Vicodin-some relief.
ditropan-only caused fluid retention
toviaz-same as abovee
detrol-no relief
hydroxyzine-get some relief but not for urgency
valium-helps relax the muscles
flexeril-same as the valium
B&O suppositories-they help a little
started estrogen cream
starting effexor soon
Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.
current meds and treatment:
nexium
ativan
valium suppositories
hydroxyzine
IC diet
methenamine mandalate
estrogen cream
effexor
B&O suppositories
Had bladder instills but this made the urethra spasms much worse.
Had hernia repair with fundoplication dec, 2011
Will be trying the anti inflammatory diet. Hope it works.
I dont know where to start with this diet.
Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.
Husband is my biggest supporter. I need the urgency to go away. What helps??Comment
-
What are your worst symptoms. Yeah, I get some relief when I even just eat vanilla ice creamNancy - newly remarried Sept 2011! Have 5 kids ages 7-22.
Had a UTI in Oct 2009
IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms
Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe
Diagnosed fibromyalgia/lyme disease in 1999
Acid reflux since 1998
Have tried the following therapies:
pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
Ativan-helps some
Vicodin-some relief.
ditropan-only caused fluid retention
toviaz-same as abovee
detrol-no relief
hydroxyzine-get some relief but not for urgency
valium-helps relax the muscles
flexeril-same as the valium
B&O suppositories-they help a little
started estrogen cream
starting effexor soon
Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.
current meds and treatment:
nexium
ativan
valium suppositories
hydroxyzine
IC diet
methenamine mandalate
estrogen cream
effexor
B&O suppositories
Had bladder instills but this made the urethra spasms much worse.
Had hernia repair with fundoplication dec, 2011
Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.
Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.
Husband is my biggest supporter. I need the urgency to go away. What helps??Comment
Comment