New Member with lots of questions and pain

[Kassy]

This is my first post...but I have been reading so many of your stories and am thankful that we have a place to come for support, compassion and real experience with this condition. I apologize for the lengthy story but am desperate for your opinions. About 4 months ago, (after sex), I had the sensation that I had a UTI...but it was coming and going. When I finally decided to get a culture, it was negative but the gyn put me on A/B anyway. That didn't help and my symptoms of urgency and pain were still there. I was sent to a Urologist who put me on another round of A/B just incase the bacteria was resistant to the first A/B. That didn't help either... so suspecting IC after a few months of waiting for me to improve, he did a cystoscopy with hydrodistension. I need to rewind here and also tell you that 12 years ago I had similar pain and urgency after taking fertility drugs and ended up having extensive surgery to remove stage 3/4 endometriosis which was all over the top of my bladder, ureters, ovaries, colon. The excision surgery was VERY successful ...I got pregnant on my own right after surgery and the pain disappeared for 12 years. Sooooo,back to present time, 6 weeks ago I had the cystoscopy w/ hydrodistension and the urologist said he thinks it could be IC.....but a mild case. He wanted me to take Elmiron and Antihistimine. Since the procedure, my pain has gotten worse. I can't tell if it's inside my bladder or outside my bladder and my pain with my periods is now thru the roof! I don't want to take the Elmiron yet and went to get another opinion from a urogyno who says based on the pictures of my bladder and the fact that I never have had frequency....it's not IC. She believes it could be adhesions, scar tissue, hormonal changes. After reading all of your stories....I am very confused and in a great deal of pain. I am thankful that I do not have frequency....but the burning/pinching pain is off the charts. I have tried the IC diet for a few weeks now with no change. I am thinking about trying Cystoprotek (rather than Elmiron) for a few months to see if that helps and if not....back to my surgeon to look for more endo/adhesions. I have tried Prelief a few times but it doesn't seem to make a differnce. Any suggestions or thoughts would be very helpful. Also, I am looking for an IC specialist in Maryland or Wash DC if anyone knows one. Many thanks for your support.....

[too_young]

You are definitely in the right place Feel free to ask as many questions as you want here. Also to find a doctor by state you can find it here and support groups by state-Go to professionals below where it says Interstitial Cystitis Network. I havent been diagnosed that long either and some people find the diet super helpful I didnt at first but now I really realize how diet effects me. Im still waiting on an okay to do the hydro/cysto some people find relief from it while others experience more pain/discomfort.

Also about the Elmiron I temporarily stopped taking it because of bruising but it can take a while for you to notice any changes from it. From what others have told me Elmiron is kind of like a band-aid for the bladder it coats it. Feel free to ask questions and to read about IC here some days can be horrible for me and I feel like no one really gets it-I have found answers,support,and comfort here and Im sure you will too.

[Kassy]

Thanks so much for getting back to me! I was afraid of Elmiron b/c of the reported hair loss....and I seem to get every side effect on the label! Did you have any hair loss yet? I see you've tried a few drugs...the doctor wants me to try effexor....what do you think of that drug? Thank you again for writing....it's so nice to have someone who understands to talk to.

[ICNDonna]

to the IC Network.

Only a tiny percentage of people taking elmiron experience hair loss.

At the time I was being diagnosed with interstitial cystitis, I also had a lot of adhesions --- after I had the surgery that got rid of those, my pain level dropped significantly. Hoever, the bladder pain remained and I was diagnosed by hydrodistention.

I do think it's a good idea to go for a second opinion. It was a gyn who did an exploratory and found the adhesions (leftovers from an abdominal hysterectomy) and a urologist who diagnosed the IC.

I hope you get some answers soon.

Sending healing thoughts,
Donna

[Kassy]

Thank you for writing me! Are you mostly pain free now and are you taking drugs to maintain this level? I am feeling a bit hopeless as the pain is getting worse and worse since the procedure (cystoscopy w/hd). Does it make sense to you that stretching the bladder where my scar tissue was from the surgery 12 years ago could have awakened the adhesions and that's what causing the pain? Or that the distension could worsen a mild case of IC? I know I should be asking doctors this but your experience with this is invaluable and I would love your opinion. I am afraid to have exploratory surgery b/c I think it may cause even more problems ...like this last procedure. Thank you for your support and for sharing your experience.

[maria1968]

new to this site

Hi I am new to this site as well, and am overwhelmed lately with how to handle this terrible disease. I read about what foods to eat and what not to eat but at this point it is hard for me to pinpoint what irritates me and what doesnt because sometimes I eat certain foods and they bother me and sometimes they don't! I am a big breakfast eater, salad lover, but it is no fun to eat a salad with no dressing on it...any suggestions? also I am a huge chocolate fan, but now it looks like that may be an issue as well! The worst part is I'm Italian and a lover of pasta with red sauce..whats a girl to do? Also, does anyone ever take Miralax or does it cause flare ups? With the meds/suppliments I am on it is effecting my stomach..Lyrica, for fibro, topomax, zomig, hydroxine,calcium citrate, probiotics. The Dr is also wanting to start me on Elmiron but I do not want to add another drug to my regimen because of the side effects and because I have side effects from what I already take! Can anyone out there please help me? I would be so greatful. Maria

[Kassy]

Hi Maria,
I so know what you mean about the foods....I am a foodie and love lots of flavors, red sauce, big red wine drinker and chocolate lover! It's been so depressing giving up all of the above. On my salad...I just put olive oil and salt and pepper but I just read a IC recipe where you can make a dressing with roasted garlic and olive oil. I think the wine and red sauce has been the hardest to give up. I also can't seem to find a correlation b/w the foods and my pain which changes ALL day long.....so hard to pin point. Have you heard of Cystoprotek? I am going to try it b/c the side effects I heard are more gentle than with the Elmiron and may help just as well.....altho I see some are on both.

[maria1968]

new to this site

Hi Kassie! Thank you for the salad suggestion! I love garlic too, so I will give that one a try! I did read one yesterday where you can mix pear juice, canola oil and a little fresh basil and put it on salad greens along with feta cheese and walnuts. That one sounded intriguing! I'm sure if we put our minds to it it we can find some good recipes. I'm just used to using Balsamic Vinagarettes or Ranch dressing so that is been a challenge for me! As far as the red sauce, I really don't know know how I will handle that! I have been trying to get in the habit of taking Prelief before meals. Have you been taking that? That is ironic you asked me about the Cystoprotek because I have been considering that as an option for myself as well. I don't know that much about it as of yet. I have an appt Thur. with a Dr. for my second opinion now and I was going to ask her about it and get her thoughts on it. I can let you know what she says if you like? What do you know about it? Also I have been taking the Calcium Citrate for about 2 weeks now and I think it may be helping a little or I hope it is! I'm like you though..My pain varies form day to day and hour to hour. I seem to get worse later in the day and with this latest flareup, the frequency is outrageous! Anyway..I understand what you are going through..am here if you need to vent. Maria

[ICNDonna]

Getting rid of my adhesions made me feel much better --- I had the pain created by the adhesions in addition to the pain from the IC. After I got rid of the adhesion pain, I could stand up straight. The surgery didn't do anything for the IC, but I am one who is helped by hydrodistention. How long ago did you have your hydro?

Warm hugs,
Donna

[Kassy]

The hydro was 6 weeks ago....and I'm progressively getting worse. The uro also stretched my urethra b/c it was narrowed. Luckily....that feels fine.
I had a 2 good days after my last period, but now am back in agony. No urgency or frequency....(never had frequency ...just on and off urgency) just pain and burning in my pelvic area....more on the left.

[Kassy]

Hi Maria,
I ordered the cystoprotek last week and am waiting for it to arrive. I will give it a try. Both of my doctors read the ingredients and say it's worth a try and can't hurt. I'd love to hear what your doc says as well. I think I'll give it 3 months and if it's not any better, I'll proceed with the laporoscopy to see if adhesions/endo is the problem again. Let's try the cystoprotek together....that is if your doc approves it!

[maria1968]

new to the site

Hi Kassie,
Did you order the Cystoprotek from this website? I'm all for it if the doctor thinks it is ok for me to try. The uro I have been going to has really been encouraging me to try the Elmiron and a hydro but as I told you before I don't think highly of trying the Elmiron right now and am uncertain about the hydro. I had a hydro back in 2002 when I was having frequent UTIs and it seemed to help back then. My problems are much worse now and I am really up in the air about what to do. I realize it varies from person to person though. I am truly sorry you are going through so much pain. Are you able to sleep at all? They have me on on hydroxine which I take at night which is supposed to help with pain and inflammation and causes me to be drowsy. It helps some I think, because I like you have the pelvic burning pain. What wakes me up more than anything is the urgency. What a nightmare this condition is huh?! It's important to try to stay positive though if we can

[Thingone]

Hi Kassy

Welcome to this wonderful forum. I had stage IV edometriosis, and I have IC and PFD. I am one of the unlucky ones that had endo come back after total Hysto. Simply put, I understand. We have a lot of the same issues. I also had a period of time when I was pain free, then one day I was in deep pain. My main problem was that none of my doctors knew about IC. I suffered for years after my hysto (26 yrs old). When I had my hysto my bladder was stuck to my cervix. All my organs were bound. I have had 10 surgeries because of endo. It's been just a little of a year since I had adhesions removed and IC was diagnosed. Dried up endo was removed. It seems for me every time I try HRT it comes back. I'm playing roulette now, because of vaginal dryness.

I had awful pain after my hydrodistension. Some people find relief, not me. I also can't handle instills or Elmiron. Elmiron actually caused me to flare and I also had the side efffect of a sore throat and problems with swallowing. I would give it a try. It works wonders for some people.

I am also on the IC diet and I can't to tell any difference, except for when I have orange juice or acidic water. My symptoms get worse when I drink my well water because it's very acidic. I carry a ph test kit to test any water that I intake.

I was overwhelmed when I first found out about IC. In fact this forum scared me to death because of all the medications that were listed, but I found comfort in knowing what I'm up against, and I wasn't alone. It's not in my head.

I hope you find relief soon. Be diligent about researching for a doctor. I found an article online that stated "80-90% of women with endometriosis have been identified with IC." Wow! I also have a book that list Endometriosis Urinary Tract symptoms. The symptoms indicative of urinary tract involvement vary and may result when endometrial implants are located directly on these area or when adhesions pull on the bladder. It's strange, but I can check almost all of them know.

• Abdominal pain that is constant or is present during the menstrual cycle.
• Blood in the urine
• Difficult or painful urination
• Fever
• Flank (fleshy part of side of torso between the ribs and hips) pain radiating toward the groin
• Frequent urination
• High blood pressure
• Incontinence: Stress and Urge
• Lower back pain
• Low blood pressure
• Pain above the pelvic bone
• Painful or burning urination
• Rectal pain and pressure
• Retention of urine
• Tenderness around the the kidneys
• Urinary urgency

[too_young]

Ive been taking Effexor for a long time but ive tried a lot of different anti-depressants over the past 6 years. It works well for me but it really all depends on you I have a hard time taking it because I cant sleep at night so I tend to over sleep and missing a dose can really make you feel horrible. I see the psychiatrist who gave me the Effexor once a month.

The Elmiron I am temporarily stopping because I was bruising . I noticed very little hair loss but my hair is very very long or else I dont think I would have noticed. I tend to also get every side effect on medications but the only thing really with the Elmiron I noticed was bruising but it wasnt severe and the occasional upset stomach but Elmiron can take I think 6 months?? to see a difference. I definitely noticed that my stomach didnt feel so bruised and so painful all the time and that was great Im hoping to start again after my hydro/cysto.

[Kassy]

Wow....so many of us have had so much suffering...I think we all (1 million of us) need to march on washington together and demand some more research $$ for these horrible conditions! I am sorry that you all have had to deal with this at such an early age.

I ordered the Cystoprotek from the Cystoprotek website ....where I was sent to Amazon. So....it's coming from Amazon. I was told by my surgeon that endo and Ic are known "bed fellows" and are often together. I suspect I have a bit of both.

Love to hear when you all feel better....it's great news and gives hope to the rest of us!

Maria...I'll keep you posted about when i start the Cystoprotek and let me know what your doctor says.

Anyone ever go to the Johns Hopkins Women's Center? I'm thinking about calling for another opinion since it's in my backyard?? Or how about NIH.....that's up the street from me. Anyone contacted them about studies or different protocals?