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 (http://www.onlineallergycenter.com)
Also you can email me for his address if you need to. My email is: rgreenup@charter.net

[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

[rnewman]

Interesting thoughts.....

Im very interested Now.

Tammy G- I have never heard of "estrogen dominance." Could you explain a bit??

I was diagnosed with IC after going on birth control and it was also the last time I was very sexually active....(well, the last time I was sexually active at all, but we were a little nutty, it was new love <img src="graemlins/lmao.gif" border="0" alt="[lmao]" /> ) I have always wondered the effect the birth control had...Im convinced there was some. I thought more along the lines of a synthesized drug like any other....it has side effects, and if you read the small print in the PDR surrounding most birth control pills..they say "Chronic Cystitis" among a list of like 100 other possible side effects.

Progesterone is created from cholesterol during the second half of the menstrual cycle, after ovulation. The action of progesterone is to prepare the endometrium lining for implantation and pregnancy. It increases the amount of endometrial cells in the uterus, increases the mucosal lining of fallopian tubes, and mostly acts on the breasts causing them to become slightly larger, glands to proliferate and prepare for milk. If the egg is not fertilized, estrogen and progesterone suddenly rapidly decrease, and eventualy menstruation occurs. If not, progesterone maintains the yolk sac and is then secreted by the placenta itself, especially after the fourth month gestation.

I always get VERY sore breasts and thats becase of progesterone...and I wonder if I have lotsa progesterone because I have high cholesterol.....however I wonder about the allergy idea for many reasons. One being that progesterone itself is degredaded to other steriod hormones (in the liver) that have no progesteronic effect within minutes of it being secreted.

HOWEVER, 10% of progesterone secreted is excreted unused in URINE in the form of pregnanediol- not straight progesterone, but a form of it.

So, perhaps if there is an allergy to it, it bothers the bladder at that time when it is being secreted. But that doesnt explain other flares because there are no receptors on the bladder that would bind with progesterone.

AND, if it were an allergy, It would be autoimmune that we would create antigens to our own progesterone. However then I imagine that although my bladder gets slightly worse during PMS, that my uterus and fallopian tubes would have something to say....meaning that we would all have more fertility problems...I dont know, this is really intersting...but I always assumed my worse IC with PMS was my big filled uterus pushing on my bladder...being that my uterus and all that other stuff checked out fine and that my period still comes, like clockwork without the pill- every 30 days. And while men have some estrogens, they have no progesterone. And progesterone is not created in (normal)female children until puberty.

Hmm. I dont know what to say. SOOOO interesting, like anything, more research needs to be done. Id like to see the web page. I would be a little leary about taking progesterone though...its a steriod and a vile one at that mad.gif think the new morning after pill (PlanB) that makes you sick- YUCK!
Rachel

[JackiePecora]

I totally agree with Gabby. I went through the same thing with prgesterone shots during infertility treatments. My IC was in remission at the time and I went through my whole pregnancy without a hitch.
I did test postive recently for mycoplasma and chlamydia for which I'm on antibiotic treatment. So is my husband which may prove to be the reason I am infertile. I haven't used birth control for 8 years. Those infections cause urogenital problems as well as others.
Hopefully if I get well I will have some good news for everyone.
Well wishes and good luck to everyone with this progesterone discovery!!!
Jackie

[rnewman]

I spoke to my Physiology professor who works in a Pediatric Intensive Care unit at chop. Her thoughts on the progesterone was that it is possible because estrogen and progesterone play a part in autoimmunity that they arent aware of yet...She also mentioned that lots of research is being done- NOT specific to IC- but on autoimmunity. Suppressor T cells are supposed to supress immune function and prevent eratic immune responses to self tissue- aka autoimmunity. I think they should just synthetically make Supressor T cells and shoot me up with them. My professor said they are workng on it. As far as Jill's mast cell idea- the pain doesnt come from mast cells, but possibly the innflammation itself that they cause. Here are her thoughts::

Im sorry this diease makes you feel so awful.
It is however, very interesting.
I am not sure that there is a direct connection between mast cells / histamine
and pain... but pain, as well as the immune response, are such a complex issues
that there is always a possibility it's related... it's more likely that the
edema that is created by histamine release from mast cells results in pressure
on nerves which causes the pain etc. etc.... That's just a thought. Yes...
people are investigating suppresser T-cell function and autoimmune diseases...
it's a hot topic. Since cystitis is general inflammation, it makes sense that
what ever the process is causing the inflammation will also effect other organ
systems such as muscle, joints, the GI tract... i.e. causing IBD and
"fibromyalgia"... Fibromyalgia isn't well understood so it's sort of become the
diagnoses for anyone with chronic discomfort and fatigue. In general, any
immune related disease can flare due to stress... might have to do with cortisol
secretion / function as part of the sympathetic response... but it's not well
understood. In cases of fibromyalgia and other poorly understood pain and
fatigue syndromes, stress reduction, treatment for the depression people
experience when they are in pain all of the time and lots of physical therapy
has shown to relieve symptoms better than any medication... including
corticosteroids. Unfortunately I don't know much about IC !!! I have never
heard of the progesterone allergy theory, but there is definitely a link between
estrogen / progesterone and autoimmune diseases... that's why so many of these
problems start in women during puberty... Hope this info is helpful... and
hang in there!!!! Sometimes it takes years, but most folks can get a handle on
works to relieve their symptoms and to figure out what their trigger's are and
avoid them. If you ever need a good rheumatologist... there is an excellent
practice at HUP...
Tara

FYI..Cortisol is a hormone secreted from your adrenal glands which sit atop your kidneys that acts like a steriod....like prednisone if you've ever taken it.

Thought you all might like to hear her thoughts, I always do.
Rachel

[Tammy G]

Rachel,

From what I have been told, Estrogen dominence is having too much estrogen and not enough progesterone. This is supposedly caused by the environment: Synthetic estrogens that are fed to beef, chicken, etc...Synthetic estrogens in the pesticides, HRT, bcp, sythetic hormones in medications, etc... Some say that is why we have more females in the population. I think people do develop hormone allergies to both the synthetic hormones as well as their own natural hormones or natural hormones available such as natural progesterone cream. My IC symptoms began when I started taking birth control pills that contained both synthetic estrogen & progesterone. I definitely feel IC is hormone, autoimmune and allery related.

[rnewman]

Thanks Tammy G.

The first thing I did that helped my IC was make a switch to natural, and when I can organic foods(and I gave up meat because of hormones...which organic doesnt have). Aside from all the hormone issues...BIG difference!!! And there is documented evidence that this is why girls are hitting menarche earlier and earlier. Because of our innidation with hormones.

I am begining study on Botanical Medicine and Herbology and one of the things I focus on is integrative medicine, meaning: there is a time and place for western medicine- Pain control, a heart attack, a car accident- and a positive strep culture. But things such as sore throats that are usually viral can have other, natural treatments. I came across some startling information today in my studies. I know how hormones are metabolized and exreted; but i never stopped to think of where it goes. So in our pee we have 20% of at times estrogen, progesterone, etc. And that changes if you take hormones as well. So you pee, you flush, and you think the water gets clean? think again. Hormones have an affinity for water. They contaminate the soil that feeds our animals and our plants. All from our pee...imagine what other drug remnants in our urine do!!!

AN example:: In Great Britian, the number one prescribed medication is Premarin for HRT. Conjugated Equine (horse!!) estrogens. A few fish farms in Great Britian two years ago began to actually document MALE fish becoming FEMALE&gt;&gt;&gt;&gt;all traced back to the premarin metabolites in the water. SCARY?!?! redface.gif Scarier is the four legged frogs...wonder what drug that was?!?!

Just thought Id share my work, a point to ponder next time you take a pill and pee (which: I think to myself, for us, is MUCH more than average!! <img src="graemlins/lmao.gif" border="0" alt="[lmao]" /> )
Rachel

[Tammy G]

Rachel,

I agree with you about things. I use very small doses of subcutaneous heparin injections to control my IC. In 1994, I was put on [.5cc (of 10,000 units strength) every 12 hours] for one year. This healed and rebuilt my GAG layer. Since then I only need to use this dosage about every 3 months for just 2 weeks. I feel this is about the closest I can get to a homeopathic therapy since heparin is a natural substance. My doctor is currently consulting with Dr. Roby in Texas to see about testing me for antibodies for hormone allergies. I'll find out something in Jan. when I go in for my next appt.

Tammy

[Tammy G]

Rachel,

Feel free to email me directly for discussion if you like (rgreenup@charter.net). Sometimes I don't check the ICN site for awhile if I'm busy. Here are some interesting sites:

www.onlineallergycenter.com (http://www.onlineallergycenter.com)
www.johnleemd.com (http://www.johnleemd.com)
www.thyroid-info.com/ (http://www.thyroid-info.com/)
www.drsiegal.com/index2html (http://www.drsiegal.com/index2html)
www.thyroid.about.com (http://www.thyroid.about.com)

Dr.Roby says progesterone is bad for IC. Dr. John Lee says a lot of women are estrogen dominent. These 2 doctors might contradict each other. The last 3 are about thyroid issues and contain info. about natural thyroid VS synthetic. I'm currently on Armour.

Tammy