More on the Hormone Theory...

[katzl]

While browsing over at the ICA's website <www.ic-help.org>, I came across the following Q&A with Dr. Kristene Whitmore, one the the top IC experts in the U.S.:

"Q. Do hormones have anything to do with IC? Is hormone replacement therapy (HRT) more likely to help or worsen IC symptoms?
A. Hormones do have an effect on IC symptoms. The exact roles of estrogen and progesterone are currently unknown. However, symptoms may be exacerbated by fluctuations in hormone levels. Continuous hormone replacement therapy or low dose oral contraceptive pills, which keep hormone concentrations of estrogen and progesterone constant, have been successful in treating endometriosis. Preliminary experience in our center indicates a >50% reduction in frequency, urgency, and pain in 9/10 IC patients that had a pre-menstrual flare in symptoms. A randomized controlled trial is pending. Post-menopausal IC patients tend to have a decrease in symptoms when given hormonal replacement therapy. Up to 80% of patients experience >50% decrease in IC symptoms during pregnancy that lasts up to 8 months following pregnancy."

Well, that's the first time I have heard an IC expert say that he or she definitely thinks that hormone therapy can help IC. I am going to try to contact Whitmore to find out what specific types of hormone therapy or low dose pills she recommends.

Any comments?

[rhonda]

I had a complete hysterectomy in July of 2000
While I did fine for about 6 to 7 weeks after my hysterectomy and hormones.
Well, that was just a dream. In late October I started my bout with this last flare. And cannot seem to get past it this time.
So, I am wondering am I on the wrong hormones or what is going on. My Dr. is pounding his head trying to figure out what happened.
I was doing so good and now it like I have been slapped with reality that this crap will never go away or at the least settle down.

I am going insane trying to figure out what happened.
I eat right, all I drink is water, I do everything by the book. What is wrong with me and why can't I be fixed or at least get some kind of relief ???

[Shelleynz]

Hi Rhonda

Personally, I feel that progesterone aggravates my symptoms and that is why I think I'm more likely to flare just before my period. I'm sorry to hear that you've been flaring for so long and wish you good luck with Dr. Whitmore. I hope she can help you.

Shelley

[justice4j]

Shelley,
I've been on BHRT for over 2 years. The only drawback is apply the damn stuff 2x a day. But, that is a small price to pay for balanced hormones. The difference in the quality of life is indescribeable. If anything, BHRT helps with IC, at least for me. Hope that helps. Jan

[sami4]

Dr. Elizabeth Vliett author of,"Screaming to be Heard," has written a whole book on the relationship of hormones to many different women's diseases from migraines to IC. The relationship between hormones and IC, I thought was pretty common knowledge?
In a nutshell, serum estrogen levels less than 100 aggravate all types of bladder and IC problems as they are too low for proper lubrication. The urinary tract is full of estrogen receptors and when deprived of adequate estrogen the nerve fibers become inflammed, sore and dry.
Postmenopausal women usually need local estrogen in the vagina as well as systemic estrogen.
Vulvadynia standard treatement is estrogen cream on vulva.
Steady hormones are best for IC as the progesterone phase of a womans cycle is usually the worst time for bladder symptoms or PMS.
It has been a long time since I was a nurse in a Gyno office that specialized in hormonal problems, but even back then we knew and observed the relationship between hormone levels and bladder problems.

[ICNDonna]

There are at least several people who post regularly who either are or have been on hormone therapy for IC.

Donna

[izazen]

I've been taking Estrace vaginal cream for a little over 2 months and have had wonderful success with it.

I'm 10 years out of menopause.

[sami4]

When my Uro diagnosed me with IC the first RX he gave me were for: Estrace vaginal cream, Elmiron and Atarax. My vulvar specialist also starts all her patients on vaginal and vulvar estradiol cream regardless of age.
As Donna mentioned a lot of women on this board use vaginal estrogen or find out some of their symptoms are due to lack of vaginal estrogen.
DonnaIC, I believe you mentioned you had a Hyster? Did your Doc put you on any hormones after it or not? I dont recall ever hearing you mention any type of hormone therapy?

[glassd18]

Hi Everyone,

Haven't been around much lately so I hope you are all doing well. About 4 months ago I finally found an HRT combination that is working for me and not affecting my IC at all. I wanted so badly to use bioidenticals, but unfortunately I couldn't tolerate the natural progesterone. Anyhow I am on Enjuvia .45mg (made from plant sources), and Provera (low dose) 2.5mg, and it actually has helped my IC a little. I no longer have the stabbing pain in my right pelvic area, and the urethral burning is almost none existant. I still have hot urine a little, and frequency is better, but I still flare when stressed or eat something off of the diet. It took me a while to figure out what I could take. I could not do norethidrone acetate at all!!! Every preparation I tried it in gave me such bad flares. Anyhow I missed everyone so it's good to be back!!!

[sami4]

So glad you are back and found something that works for you. What ever works! Enjuva is made up of 10 synthetic estrogens the two dominant components are sodium estrone, and equlin sulfate (horse estrogen derivitaves). Perhaps it also has some soy or something else in the mix, but essentially it is a synthetic as is the Provera. I hope you are aware of the research on Provera?
Glad you are doing well, and I couldnt stand the bio identical Prometrium either, it gave me terrible vulvar symptoms. I guess we all have to do what we have to do to get results.

[glassd18]

Thank you Sami!! I did not know that this was horse estrogens!!!!! I am an animal friendly person (member of the ASPCA), and would not take this drug if I knew this in advance. My endocrinologist told me this was from plant sources!!!! I will have to talk to him about this. I guess I will have to do Estrace, and Provera!!! Thank you for shedding some light!!!

[sami4]

It is a blend of 10 synthetic estrogenic components, several different types of equinine estrogens (horse), estrone which is the strongest metabolite of estrogen, and several others. Soy may also be part of the mix, I dont know?
The majority of synthetics are of the Premarin or equine variety. Put Enjuvia into a search engine and read the chemical components for yourself.
However, if you have been having a problem with other products, maybe you should consider what does seem to work for you? Why it does, I dont know either, but if it does is what counts?

[glassd18]

Thanks Sammi. I did research it, and sure enough... Anyhow I'm still taking it right now because I can't come off of it suddenly, and I just bought a months worth at $ 30.00 so I will take it until the end. I don't think the estrace was too, but it has cholesterol raising properties, and I worry about that.

[sami4]

Estradiol or Estrace increases your HDL or good cholosterol if taken orally but Not so much transdermal. The idea it raises general cholestrol is news to me?
Estrone and synthetic estrogens are more apt to raise your cholesterol, or even blood pressure in some people.

[glassd18]

I googled Estrace, and saw that people with cholesterol problems are ones that need to be careful. I wonder if this was one of those general comments on HRT or specific to this drug imparticular. I will need to talk to my doc about this one. Thanks again.

Di

[sami4]

I think probably that is some type of legal disclaimer like a lot of the other symptoms they mention could, maybe, possibley, might happen.
Just what that it means is unclear? Do what to cholesterol? I have natually a cholesterol level of 240 and when on estrogen my HDL goes up to 80 and gives me a ratio of 3. So it sure helps my ratio. All hormones are made from cholesterol, all of them. My cholesterol level may fluctuate 5 points but what is that due to? Diet, body chemistry, who knows? Since an awful lot of people have high cholesterol according to Docs (levels over 200) that would mean a lot of people are being convered by that disclaimer. I wonder do they count all the Statin users as having high cholesterol?
What would be really interesting is to see how Statin use effects hormone levels? I now take 10 mg Lipitor, and I think, like Elmiron it tends to make me want more of a estrogen dose to do the job. Just my observation, no scientific basis, purely subjective.

[elvee]

Hello Everyone,
I feel that hormones have a lot to do with IC. I had no problems what so ever, when my Dr got spooked a few years back about HRT. He wanted me to stop my Estraderm patch and go onto a synthetic drug. A few months after starting it I began with bladder problems. I saw a Gyno and had little relief, quite a few other tests with no results until my Dr sent me to a Urologist. I was diagnosed with IC. I am back on my Estraderm Patch and also use Vagifem vaginal tablets. I am quite certain that the break in Hormone Therapy was the cause of the IC I have now. The waxing and waning of a womans hormones seems so obvious. (to me anyway) I now take a tricyclic antidepressant (tofranil) try to watch my diet, use prelief and have added some supplements that I hope will help. I like everyone want to find the "cure" or close to it. At the moment I'm feeing pretty good. (touch wood)
I wonder if there will ever be an answer?
Regards
elvee

[glassd18]

I agree with you Elvee. My extreme bladder problems started when I switched HRT's. There is definitely a link!!!

[Annie2]

I'm with you on this one. Definitely think there is a link. I doubt if it is the whole picture, but I'm sure, for me anyway, a sudden drop in estrogen played a huge role in my developing IC. I went through a very premature menopause (started at 35---not perimenopause---the full deal). I was on hormone replacement therapy for well over a decade and a half and did just fine on it. Then, at age 55, the scary reports on HRT came out and I stopped it. Within just a few months of stopping....BAM!!! IC began suddenly and without warning. I can tell you the exact date and even the time of day it began. I never had previous bladder problems (always had tremendous capacity and frequency was NEVER an issue). I have no doubt that, at least for some of us, there is a big hormone link. I did try and go back on HRT a few months after IC began, but it did not help at all. The horse was out of the barn and I couldn't put it back in.

[elvee]

Hello Annie,
I am really interested in what you experienced, it is exactly what happened to me. Even the early menopause. I too had no problems until the "scare". I know there are lots of theories, but for me and I'm sure many others like me, the connection to a hormone imbalance feels obvious. As with you, I'm back on my original hormone medications but it's too late now. All this stuff makes me so angry. I wish I had an answer. (like everyone else I know)
Regards
elvee

[glassd18]

I too had menopause (premature ovarian failure) at 35 yrs of age. It was done and over, and I didn't have children so it was a double whammy!!! I started bioidentical hormones right away, but then came off of them for a while, but my doctor here in the US (I'm originally from Canada) said I should go back on them so I started Prempro Low Dose, but then decided I wanted to go back to the bioidenticals again and that was when my IC hit so I stopped them and was IC free for three days, but then it came back, and I haven't been the same since. I'm better than I was with diet, new HRT regime and supplements, but boy what I wouldn't give to go back in time.

[elvee]

I wish I could put the Genie back in the bottle too (so to speak). It is one year this month since I was diagnosed with I.C. I will always remember how breathtakingly ignorant I was. When my Urologist came to see me after the Cystoscopy and told me that I had Interstitial Cystitis I said "Oh thats good, at least its not an infection" The shock of being told that there was no cure! I certainly had a lot of researching to do. I am managing OK at the moment, I take a tricyclic antidepressant, watch what I eat, use Prelief and some supplements that I hope will help. I really believe the diet is all important. I have times though when for no reason that I can work out I will have the low stomach pain and frequency again, it's only in the evening and when I sit down to watch TV. Is it the way I sit? If I stand up it doesn't feel as bad. I think I'm going crazy.

[mich2604]

My estradol was a 58 last month when the endocrinologist finally ordered it.

is this still low, he said all tests were ok.


its a lot better then the 18 it was in 2006.