Doing Much Better After 1 Yr

[JL1961]

I thought I would share my adventure with IC. Yes males get it !! Started last year never forget 07/13/06 with urologist . Had hard time to find good one who believes males can get this disease. Had hydro with distentention . Found then IC. Wow relieved not Cancer or deadly disease!! But the nightmare of getting thru this disease on a daily basis. Had hernia surgery and gall bladder removal. (surgeries 06/06 o7/06) And that triggered full blown IC. Then the Hydro nightmare, then the Bladder instillations so called rescue treatments 9 didn't help at all for me!! but I was not giving up. I have A wonderful wife and daughter to continue my living, working, family, and social life . I couldn't work for 12 months the pain was so bad the going painful urination , and the frequency (57 times a day and nt), and the depression , and all the wonderful co pays and lost of income, I thought I was never going to get better and scared to death of IC DISEASE WITH NO CURE AND TRIAL AND MISS TRATMENTS! Well I'am getting better after 13 months of Elmiron 100mgs 3times a day determination diet restrictions no tomatoes,acid or no caff coffee or sodas that has helped much. Atarex 25mgs 3 times a day and Neurontin 100mgs 3 times a day , Xanax 1 mg as needed relieves IBS , take prelief bladder Q also. Wow good thing for insurance all these costs for meds. But co pays add up!! oh Cholestrum powder helps IBS much . And elmiron takes long long time it took 11 months for relief. but Those torture treatments instill in the male cather was horrified , I could never do them myself Nurses had trouble too so I wanted no more those for now , plus costs per each treatment from nurse and doctor, very expensive. Sorry to ramble on , but I when bad days depressed would read forums here and that lightened my spirits so much. Now after 13 months better I can sleep better , Sex better still little pain for males too. I can work again need more br breaks (only urinate about 12 times in 24 hrs thats much better) pain much better under control. But I can enjoy life again , I try a light jog 2 miles a day! for exercise. I no I still have a long way to go with this disease but . I wanted to write to see if I was going to get better, and I'm 70 percent better and thats at least better to function for life!! And i can go to restaurants now, airplanes, malls , work, I just watch fluid intakes and where are the br's are. I'am hoping in another Elmiron, Xanax, atarex, neurontin, cholestrum, ambien, urised, And the diet and supplements help me into a nice remission, but i'm so happy 70 percent is better then sitting in bed 24 7 with pain so bad taking tylenols 3 that didn't help for pain at all. Urologist said keep doing this for a year and we will see in 12 more months my Ic journey has gone hopefully better will advise! Thank you all here . It has given me so much hope I learened so much from IC from here from all the posts. And They kept saing I had bph , so glad I learned that I was not crazy and I studied IC , and diagnosed properly. But so far better, not perfect but better, So do not give up , I refused trial errors fine tuning And hopefully , someday they can diag better for males or females And give us better treatments. Again some days better and some bad but at least I can enjoy life again. Those just starting this IC journey don't give up with treatments , courage, therapy, And IC reading materials. Thank you all for letting me share my story here. I will as a male Ic patient keep reading and helping other IC people if ever needed to talk about IC. Thank you Again Joe , Henderson , Nv

[traceann]

Hi Joe and :welcome: to the ICN! Glad you found us and glad we could be of help back then for you as well!! Thank you so much for sharing your story - I know I love to see the good ones!!! I'm sure there are a few males (and females) out there who can benefit from reading your story!!!!! Thank you again and look forward to seeing you around the boards!

[ICNDonna]

Thank you so much for sharing your story.

Warm hugs,
Donna

[SharonA]

Thank you so much, Joe. :)

[glassd18]

Thanks for sharing your ongoing recovery Joe.

[muxerr012]

Good for you Joe!! Quite an improvement from going 57 times down to 12 times a day-WOW! Diet is the key for me for sure. I'm fairly new to IC and find it very disturbing how many of us have had some type of abdominal surgery which seems to have started the IC. I hope the medical community find the connection with that because there obviously IS something to it. Maybe they can stop it from happening. I can't quit wondering if it is bladder damage or trauma from the surgery or if the surgery triggers hormonal changes which bring on the IC. I hope the docs out there feel half as curious about this trend as I am!

Hope you continue to feel better! I stay on the strict IC Diet and that has helped me more than anything so far. Thanks for sharing your story and be well.

[jaime15]

I think it's awesome you are able to jog!!:)
Take care...

[Bea]

thank you so much for sharing your story.. I am so happy to hear you are doing much better

[sandramac]

:smile tee Good for you Joe!
Hugs Sandra :cat: :cat: :cat:

[TexasHoney]

:woohoo: Congatulations, Joe. It's good to hear you are doing better.

[Wolfe]

Gina, I've always wondered that too. I would believe it absolutely if it were not for the fact that so many IC people also have endo and IBS and Fibro.

But when I was in my early 20s, they did an exploratory for my endo and scraped all of it they found out of my abdomen -- including spots they found on the outside of the bladder. Between that and having my urethrea stretched because I was newly married and intercourse hurt, I've long wondered if that was the birth of the IC that knocked me flat 15 years later.

[muxerr012]

Judy I believe more now that IC is triggered by hormone level changes which are going to happen as a result of many surgeries and procedures that we may go thru. In fact I read a very interesting interview between Jill and Dr Eliabeth Vliet on this website. I have copied a few quotes from the transcript where this doctor talks about how often she see a correlation in women with IC who have also had endo, fibroids, hysterectomies....

<icnmgrjill> SOMETIMES WE ALSO SEE OVARIAN CYSTS AS A RELATED CONDITION?? I MYSELF HAVE HAD SEVEN.

<DrVliet> I think there is a connection between the autoimmune ovarian disorders and ovarian cysts, endometriosis, and IC. We also see a strong correlation with patients in our practice who have an autoimmune thyroiditis and earlier than normal loss of their estrogen, who also have ovarian cysts over and over. I think we physicians HAVE to look at these things with a more integrated approach than has been commonly the case...

<icnmgrjill> ONE OF THE ANECDOTAL TRENDS THAT WE HAVE NOTICED IN THE IC COMMUNITY IS THAT MANY PATIENTS APEAR TO DEVELOP SYMPTOMS DIRECTLY AFTER SURGERY.. PARTICULARLY HYSTERECTOMY OR CHILD BIRTH...

<DrVliet> Yes, this fits with my point that I think the hormone levels should be checked. It has not been routine for OB-Gyns to check estradiol levels but recent studies have shown that as many as 60% of women who have a hysterectomy (even leaving the ovaries in place) will have menopausal levels of estradiol within three years of surgery. That means many younger women are at risk and don't know it unless someone is checking their hormone levels. It is truly staggering what we see in our practice!


icnmgrjill> A QUESTION FROM THE FLOOR DO YOU HAVE ANY SUGGESTIONS ON HOW TO CONVINCE AN HMO TO ORDER THE ESTRADIOL BLOOD TESTS.. WHEN THEY MIGHT BE RELUCTANT TO DO EXTRA TESTS? ?

<DrVliet> Tell them they are paying a fortune for your care if they DON'T check these hormone levels!! I have patients who are routinely on 8-12 medications instead of addressing the underlying cause and once we get the hormone issues addressed and proper therapy started, I find we get people off of a lot of other medications (like Prozac) they really didn't need!. And that saves the HMO a lot of money, not to mention the benefits to patients who are taking less medication, having fewer side effects from meds, less out of pocket costs, etc.

I am going to bring this topic up next month when I see my UROGYN for the first time and see what he thinks about this. In fact I printed the interview transcript with Dr Vliet to take with me. Let me know if you have any luck or decide to proceed with hormone level testing ok?

[glassd18]

Wow. Great post. Thank you. I fit that mold 100% with premature ovarian failure starting at around 33 and being menopausal by 36. I have had my levels checked, and have been given HRT but my bladder flares from a lot of these therapies. Also I had symptoms in my late teens. So how would that explain a young person with normal hormone levels having IC? I'm a little confused to say the least.

[muxerr012]

Thanks, I find the interview between Jill and Dr Vliet to be very informative. It seems to explain 100% of my disorders over the years too! I copied few more lines below from this same interview which talks about why younger women not menopausal have problems with estrogen decline. FOR YOU it also mentions why certain types of estrogen forms may actually cause your flares. It's not the estrogen itself but the type being used for you. Premarin is a problem in Dr Vliet's opinion. I use the Vivelle Dot patch versus estrogen pills and I also use the Estrace estradiol cream . I do fine on both and they help me tremendously! She also talks about viral onset of IC in younger patients like one lady who had a poisonous spider bite trigger her IC. Check it out...

<icnmgrjill> YOUR BOOK MENTIONS THAT SOME PATIENTS CAN DEVELOP SYMPTOMS WHICH APPEAR TO BE BLADDER INFLAMMATION EVEN THOUGH THEY ARE OF A YOUNGER AGE AND PERHAPS NOT FACING MENOPAUSE JUST YET. CAN YOUNGER PATIENTS HAVE A DROP IN ESTRADIOL WHICH COULD CAUSE IC LIKE SYMPTOMS??

<DrVliet> Yes, I have evaluated hundreds of younger women who turn out to have very low estradiol levels and many of the same symptoms we commonly think are just related to menopause. The important point is not the AGE of the person, but what is her (or his) endocrine status - and how low are the hormone levels.
<icnmgrjill> AND HOW DO WE HAVE THAT TESTED??

<DrVliet> People will hear a lot of controversy on this point. I have been doing blood (serum) tests of hormone levels for more than a decade and I find there is excellent correlation between low estradiol, low testosterone, thyroid dysfunction and the symptoms of IC, PMS, new onset or worsening migraines, fatigue, and SO ON.

<icnmgrjill> AS A THOUGHT, THEN FOR IC PATIENTS WHO ARE YOUNGER, SAY IN THEIR THIRTIES, WHAT WOULD CAUSE ESTRADIOL LEVELS TO DECREASE? WHAT IN THEIR LIFE COULD CONTRIBUTE TO THAT?? WE SEE SO MANY UNNNECESSARY HYSTERECTOMIES FROM PATIENTS WHO HAVE DEVELOPED A WIDE VARIETY PELVIC PAIN ISSUES... COULD IT BE, INSTEAD, THAT AN OUTSIDE FACTOR HAS CAUSED A CHANGE IN ESTRADIOL??

<DrVliet> Point 1: I think it is crucial for IC patients to have these hormone levels checked. It is such significant factor and so easy to address with good therapeutic options. Point 2: what outside factors can cause estradiol decline? There are many things which can cause this. I have patients who have severe viral syndromes that caused sudden onset premature ovarian failure. Have one lady who had a black widow spider bite that caused early menopause acutely and also IC. These are just some examples of the wide range of things. Then there is the issue of environmental chemical exposure, dyes in foods and beverages. Other illnesses can cause ovarian decline sometimes we see this after tubal ligations and the list goes on and on...

<icnmgrjill> JOY WANTS TO KNOW IF THERE ARE ANY PROS AND CONS OF CREAMS VERSUS PILLS FOR ESTROGEN??

<DrVliet> There actually are lots of reasons to use either a cream or patch form of all these hormones, always using a prescription with known amount. I don't recommend the OTC ones because the amounts of active hormones are usually put on the label and it can cause problems. In my book, I have a whole chapter outlining the reasons why it may be wise to use a patch form of hormone delivery. See chapter 15... It may be the type of estrogen causing the flares not the estrogen per se.

<DrVliet> Premarin is a problem in my opinion, especially for IC patients, for several reasons. (1) It contains about 63 different dyes and coatings on the tablet, which are using chemicals that can be quite irritating to the bladder lining and the urethra. (2) It gives high derived estrogens than again can be irritating to the bladder lining as they are metabolized. (3) It does not tend to produce adequate levels of the 17-beta estradiol native to human females and the biologically active form of estrogen for women before menopause. And there is another concern. Since the estrogen amount is high with Premarin, I think that's a concern long term with the breast cancer issue. I know this is the most commonly prescribed estrogen in the US, but in 1998, we now have many better, more natural and more physiologic estrogen options for women. IC patients in particular who want to consider estrogen should be aware of these issues...

[glassd18]

Wow again!!! Does she talk about progesterones as well because I've had trouble with the bioidentical and synthetic progesterones, and I have to take a progesterone because I still have my uterus. Thanks a bunch for all of this info. It certainly seems like my story to a tee!!! Freaks me out kind of. My doctor (endocrinologist/fertility expert) should have known this you would think. He put me on Enjuvia which is sort of like Premarin, but it has dyes and coatings as well. I tried the Climara Pro patch, and the Combipatch, and had some troubles with the the Climara Pro patch sticking to the skin. I think the combipatch flared me. This is so confusing. Right now I stopped all hormones, and my bladder seems happier.

[ejovan]

i hope they find a cure for this terrible affliction. you are very brave.

[muxerr012]

No I didn't find any info in the interview re: progesterone but this doctor would be the one to know. She has written the book I copied below and she practices out of Arizona and Texas. She's a Director on so many boards for women's health issues and she may even have a website somewhere. She would be the one to know believe me! I hope you find the right kind of HRT and I'll keep checking the boards and will letyou know if I find any more info out there for you. Take care and stay well!!

Contact Dr. Vliet: HER Place P.O. Box 64507 Tucson AZ 85728 520.577.7709 FAX 520.577.6395

Featuring: Dr. Elizabeth Lee Vliet, author "Screaming to be Heard: Hormonal Connections Women Suspect.. and Doctors and Ignore"

[laura dove]

i needed to here a positive story; thank you so much.

[muxerr012]

Thanks LauraDove! I'm so happy that you found some positive info on this board. I will NOT give up! There IS help out there and there IS a way to live with IC and still feel well, I just know it! I read alot and I will continue to pursue this issue until I find some peace of mind and body. I will always share my findings any any relief that I get from using meds that I believe are safe and healthy for the bladder.

I have an appt with a specialist at the end of November. I plan to take all the good info I've learned from these boards and the interviews with other doctors with me. I hope to find the right mix of meds and will share my news with all of you, just as others have shared theirs with me.

I'm 45 years old and certainly not ready to stop living because of IC! Stay strong and be well. Take care,