Possible cause of IC

[Tammy G]

I was diagnosed with hypothyroidism in May and began Armour thyroid med. Shortly before that I began using progesterone cream because I had the symptoms of estrogen dominance, which are the same as hypothyroidism. After a few months I had improvement with symptoms such as fatigue, etc...I thought the combo of the 2 were both beneficial to me, however the progesterone cream did irritate my bladder the longer I used it, so I recently stopped using it. I thought the pros of it outweighed the cons, since it made my period light, but now I feel I was wrong about it.

I ran across Dr. Russell Roby's (an allergist) website that has some interesting info. about IC. He treats a lot of IC patients and he believes IC is caused by hormone allergies, in particular, progesterone. He says you can be allergic to your own hormones as well as synthetic hormones. Most of his IC patients test positive for progesterone antibodies, which means they are allergic to progesterone. He developed progesterone drops to treat IC patients, which relieves their allergy symptoms to the progesterone, thus relieving their IC symptoms.

Anyway, I feel this is worth checking into further because it seemed to make a little sense. Maybe that is why IC ladies bladders feel worse the week before their period and while ovulating. I think your progesterone surges at those times. Also maybe you have more progesterone after a hysterectomy. Not quite sure.

I am going to ask my doctor about being tested for progesterone antibodies and progesterone drops. The doctor on the site gives info. about the labtest and info. to doctors to make the drops for their patients. Has anyone else heard of this doctor or about this?
-Tammy-

[Kathi]

Very interesting, since my IC came about as I started menopause. They had me on HRT for 9 months (I didn't want it, but the docs insisted) it made my IC come full blown & was then dx. I really think hormones play a part in ic. It's just like the chicken & the egg, which came first? Ic or hormone problems & I wonder what part hormones play in men with IC? HMMMMM
<img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> Kathi

[Oceana]

I talked to my Uro today & is not agreeable to test me for it.

Can we just contact the lab & do it ourselves if I have to pay for it ,I will pay for it.

Yes I do remember that my IC started right after I have a bouts of UTI.

Is it possible to know the name of that Doctor in Cleveland?

I am not expecting miracles but I like to try. We don't know unless we try it.........

[Tammy G]

Oceana,

I thought I had posted the website in my original posting, but anyway here it is:

He is Dr. Russell Roby out of Austin, Texas. He has a section for doctors to go into to get info. on the labtest and how they can make progesterone drops.

[Yvonne47]

Hello Tammy:

Thank you for the post, very interesting, i checked out the website.

Yvonne

[Melanie R]

Wow, I agree that this is very interesting and encouraging!!!! I am willing to get tested for all of the possible causes of IC if that would helpl to get to the root of the problem and get rid of a lot of my IC symptoms. I think that it is a smart idea to look into all of the potential causes even if you don't agree with them. Thanks so much for the information! thanks, Melanie R. <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[mayray518]

In my case I got IC at the age of 38, the so called perimenopausal years. My periods were definitely changing, thus meaning a change in hormones. I attribute this to weakening the bladder lining in, in my case, causing IC. I have no explanation of why young women or men get it. Would like to hear more.

[Oceana]

Tammy,

I checked out the site,hmmmm....it is worth a shot to try it before I decide to take out this damn thing in my body, I am extremely desperate to find a solution to have some normalcy in life. I did everything worthwhile out in the market. You named it, I tried it. I have to wait for my SSDI to come in, I got approved also recently but haven't started yet. For two yearss of unemployed ,I accumulated so much debt.I could have sold my soul if I have one & there is buyer but there isn't & I have no soul either,so there,my bills medically is enormous.But I am going to make a trip there see what can be done.
Please accept my gratitude for sharing that piece of information for the good of the IC community.
My father said when kindness is given it goes around & comes back to you ten fold.

In gratis,
Li

[lyse3]

Tammy G,

I was very interested in your posting about allergy to progesterone in i.c. patients. I was in remission from my first bout of i.c., and the remission had lasted about 3-1/2 years, when my husband and I were both trying to rejuventat our sex drives (We were 61 and 59 yrs old). I asked my gynecologist for something like testosterone or whatever might boost desire, and she gave me progestin tablets. I had no idea they could aggravate i.c. Anyway about two weeks after staring the progestin tablets my i.c. came back worse than it was the first time I had had it almost four years before. I believe the progestin had a lot to do with it. I stopped them at about two and a half weeks, but the damage was done, apparently. I just was wondering if the allergy drops would help me now since I no longer have any progesterone or progestins coming into my body (I use Estrogen patch only now). I assume that I don't have any progesterone coming from anwhere, even though I do have my ovaries still. I assume I stopped ovulating almost l0 years ago. I appreciate the information and guess I should address those questions to the doctor you mentioned. Thanks and good luck,
lyse

[JOJO]

Tammy
Can you give me the name of the website. I typed in his name under keyword sites show up but nothing about IC. Thanks-JOJO

[Alleycat]

Thank you for the information. Im not too sure how that all would tie to me..Im only 19 yrs old so Im not sure if that would cause my IC. The only thing that I can think of that happened right before I got dx was I was put on birth control. I will bring this up to my URO and see what he has to say. Thanks for posting the helpful info. Take care ((HUGS)) <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

~Alison~

[Tammy G]

Hi All,
Thanks for your comments. This allergist doctor in Austin, Texas sounds fairly credible to me in his knowledge on hormone allergies and their connection to IC. I began having IC symptoms as a teenager shortly after starting birth control pills that contained progesterone, which I took for 13 years. Also, I used natural progesterone cream for several months this year and I had to discontinue it because it really irritated my bladder and it gave me an itchy rash when I first used it. I have posted his website address in my postings twice, but it looks like it has been removed from them. I'll post again, but if we are not allowed to post website addresses on here, someone please let me know.
Dr. Russell Roby, Austin, Texas. His site address is: www.onlineallergycenter.com
Also you can email me for his address if you need to. My email is: [email protected]

[leesaw]

To All,

This is an amazing string of comments. I always attributed my IC to becoming sexually active again. However, I was going through menopause this year and was bleeding very heavily. To stop the bleeding, in July my OB-GYN gave me an injection of synthetic progesterone (Depo Provera). That didn't stop it completely, so she gave me another one in September (about a week later my IC symptoms started), and another one in October. I declined the shot in November since I thought it could only make my situation worse! It would be AMAZING if my IC is due to an allergy to progesterone (vs. sex). I have had symptoms since September 9, 2002 ... and they have grown worse and worse, particularly after the cysto with hydrodistention. But you would think that the progesterone would be out of my body by now and that I should be getting better. I will definitely check into Dr. Roby's site. I live in Houston, and Austin is only about 3 hours away by car (a miserable 3 hours with IC ... but perhaps well worth the trip). Thanks for the lead.

Leesa

[leesaw]

I e-mailed Dr. Roby, and he responded that progesterone is one of the worst hormones you can take. He recommends treating with Progesterone drops. I have re-emailed him to check a few other things, but since I am in Houston I just might drive on up to Austin and check this out. That would be too good to be true, that a treatment could be that simple???!!!??? I will let y'all know if I go as to what I find out.

Leesa

[Gaby7]

Hi all,

I'm not too sure about the progesterone connection, at least in my case. I was unable to get pregnant on my own so went to fertility clinics for four years. At the time, I was into my 5th year with very problematic IC.

Anyway, long story short, my body produced little to no progesterone which was part of the problem with maintaining a pregnancy. I was given progesterone injections during one part of my cycle each month for most of the four years of infertility treatments. My symptoms of IC did not change at all during this time. They did not get better, or worse, they remained unaffected by the injections.

It seems that if progesterone played a significant role in IC symptoms, I'd never have gotten it in the first place.

I still believe that IC comes as the result of an initial infection, either bacterial or viral, that goes out of control for a period of time.

Who knows? We're all (including the Drs.) just guessing, however, it seems that most people started becoming symptomatic in this way.

Gaby