New to IC

[Malaya]

Hi all,
I have been recently diagnosed with IC after having a laparscopic surgery to remove severe endometriosis on my bladder, ovaries, fallopian tubes and behind my uterus, they did a cystoscopy with hydrodistention the same day and diagnosed me with not only category 4 severe endometrisosis but also with IC. I was diagnosed with endometriosis 2 years ago after my first laparscopy however been dealing with the harsh symptoms for years.

I usually have a high tolerance to pain however these past two years have really been miserable. Since I was 14, I am 31 I have always been working and going to school I have B.S. M.A. and J.D. during all my schooling I have always worked and gone to school. I even worked full-time while going to school full-time the last 4 years of school. However, the endo and IC have really impacted my daily life, my work and my personal life. I usually am on top of things and now my work performance has gone down hill due to all the pain and discomfort. It has been so hard trying to get the adequate medical support, I have had to be a strong advocate for myself since as you all know these conditions are not only hard to treat but the pain is sometimes dismissed by doctors.

I have used up all my sick time at work and have no short term disability. All this has also made me very depressed. IC and endo have taken over my life! The doc put in a Mirena to help stunt any endometriosis growth from returning but it is highly likely that it wont do much. I just begun taking Elmiron but after reading through some of the forum I feel discouraged that it won't help me either. Neither my gyno or my urologist wants to administer pain meds so I am still dealing with much bladder pressure and pain. I am doing gentle yoga, trying to retrain my bladder, doing keigal exercises and have an appt to see a pain specialist.

I am happy to see their are others getting through this complicated condition and am hopeful I will too but feel like I have a lot more work to do until I can adjust and manage all this. Any advice on how to receive resources, support, appropriate medical attention and treatment?

My Treatment plan so far:
Ambien 10 mg for sleep before it I couldn't sleep more than an hour or two without bladder pain and urgency.
Sipping water 6oz every hour and then voiding
Keigal exercises
Paxil 40 mg once a day for depression (from all this)
Elmiron 100mg three times a day

[needsrelief]

Hello, I was reading that endo and IC occur together 70% of the time. You said that they removed some endo from your bladder area? has it helped any with your IC? If you havent already you may want to get examined for pelvic floor dysfunction. This occurs with most IC patients also. I have possible endo and Im starting zovia 1/50 birth control this week to see if it helps with the pain. Birth control is pretty good a supressing endo. I dont know too much about Lupron. But I believe that zovia 1/50 is prescribed alot for endo. Do you have glomerations or hunners ulcers on your bladder? Elmiron works for about 48% of patients and seems to be more effective for people with milder IC. You can try cystoprotek,cysta q, and desert harvest aloe. It seems like these have higher sucess rates amongst IC patients and they can be purchased off this site. Also you can try the IC diet. I hope that you find a suitable treatment and feel better soon. (BTW I see that you are doing kegels. that might make things worse if you have PFD and IC. Kegels are more suited for people with urinary incontinence. get a pelvic floor evaluation first there is a link on the site to find doctors in your area who specialize in IC and some PFD)

[Malaya]

Hi
Thank you for responding. I will definitely try to focus on an IC diet, I can say its been a hard thing to do but will stick to it. Its interesting the urologist who did the cystoscopy was vere vague as too what he found, I felt like I knew more about IC from my research then he did. When I asked him about whether there was hunner's ulcers or glomerations he said he didn't look into it that far but was able to see how my bladder was completely stiff and could barely hold fuids and that thre was inflammation. I am actually not confrotable with this doctor, who I waited months for before I got an apointment and who then kept me waiting for an hour and a half before he saw me. I confronted him explaining how time is of an essence when you are in pain and on your lunch break. He then conducted the most uncomfortable pelvic/anal exam I have ever had. Most doctors explain what they are going to do before they do it, but no this doctor just slipped his finger in with no forewarning. He then scheduled the cystscopy with hydro distention and gave me the elmiron during the post opp appt.

I will look into your other suggestions as well.

Thank you for your support and your information.

[Linda May]

I would find a new uro that has a good rating status and is very familar with ic.
Then you need to find out what is the best treatment plan for you.

I have DMSO treatments that have helped me so far.

However all icers are different and it might be a trial and error for you.

I wish you the best of luck and pray they find a cure soon.