About the hormone theory

[karhopp]

Hi, everybody. I am really wondering about what role the hormones play in this. I'm 47. I was doing real good with this IC till last month. The month before that I started taking Prem Phase, hormone replacement, and then not long after that, I went into this flare. Now, 6 weeks later, I'm still in a flare, but am no longer taking horomone replacements. I wonder if that could have been the cause of this flare. Looking for answers. Thanks. Karla confused.gif

[Sherry from GA]

Hey Hon,

Absolutely, I am living proof that Premarin affects IC. If I'm not mistaken, PremPro is premarin and something else. I've tried Premarin at every dosing level and it flares me every time. I did ok with an estridiol patch or even Estratest but anything Premarin related is a no,no. The thing is though, NOTHING brings the sex drive back on line like the Premarin does. Clearly, soy based HRTs (Most are) don't do a thing for me. After my complete hysterectomy, I was put on Premarin and for 8 months I was in a daily flare. I wanted to die! Finally in desperation, I got off Premarin and let the stuff get out of my system and my flares ceased. For the last two years, the doctor has been trying to find something that will work for me. What most women do not know is that different types of hormones have different attachment strengths to the estridiol receptors of the vagina and bladder. Many women are allergic to premarin. I suggest you try a patch or another type of estrogen. Unfortunately, most IC doctors are only now beginning to realize that hormones and the type are playing a significant factor in IC symptoms. If you want my phone number to talk further about my experiences with HRT (I've tried them all), e-mail me at Sherry.Venable@adroit.wrga.com

Sherry

[ICNDonna]

This just proves how very different we all are. I have taken premarin for over twenty years with no problem. I do have occasional flares, but most of the time I feel pretty good.

Donna

[ldwall]

Due to the factors that led to my hysterectomy last year, I was "forced" to take a high dose of Premarin. I was taking a 1.25 + .3 every day. My body was making too much estrogen before the surgery, and was not liking the idea of loosing any of it. I did the Premarin for a year. I found it worked great, but I hated the high dose. I was recently switched to Estrace, and the sex drive is still great, and my bladder is a bit happier. I find that my IC does not severly react to anything..........but stays in a constant state of severe annoyance. But I have had IC for all of my life, I don't know anything different, heck, maybe what I live with everyday would drive someone else mad.

I did notice a higher level of annoyance on Premarin, only after I ran out and had to go without drugs for several months. My body is soooo happy to have had the hyst the only symptom I get when I don't have my HRT is daily migraines. I haven't had a hot flash since I was release from the hospital (I am only 30), but like I said, my body loves me for getting it done. I can handle the Estrace.......others can't. Don't stop the HRT so quickly, you may find a solution sooner than you think. Also, try going to one of the docs that does extensive blood tests to see what hormones you are lacking (same for others that cannot get their sex drive back) make sure you are getting the right combination for you. That might be the key to solving the problem. Good Luck. Lisa

[debdohairdo]

Hi There,
I too have had many experiences using most of the available hormone replacements. I have recently gone off of Premarin for a variety of reasons.First off,even with taking 1.25 dose my blood test revealed that I was basically hormoneless!!!! I also had a constant trobbing vaginal pain that we assumed had to be varicosities in the vaginal area. When I reduced my dose it was better,but I just got worse. I NEVER felt 'balanced" on premarin. Premarin is a poor substitute when we actually have 3 different types of estrogen in our bodies. As for me, I am young and have never had any sex drive on it. I thought that was just something you lose when you have a hysterectomny. NOT! I am finally feeling and knowing that I am getting hormonally well. After checking my estrogen,testosterone,progesterone, dhea...my Dr. prescribed a compounded dermal cream specifically made for MY needs...not just a pill that is poorly absorbed anyway. It is absolutely the best thing that I have done for myself...trying the cream. It has brought back all my sex drive, balanced my skin, balanced my thoughts etc....I just cant tell you ...I didnt feel bad on Premain...I just didnt feel great like now getting all of the hormones. My creme has ALL THREE of the estogens the body needs ,testosterone and progesterone to protect against estogen enduced cancers and give a feeling of well being. I was skeptical at first and didnt want to go outside 'my box" and try something new. It is the best!!!!! It is formulated by prescription by the womens international pharmacy in Arizona. They have a list of Drs in your area that prescribe it. I wil NEVERRRR go back to premarin..and feeling better helps be cope with IC much better. Feel free to contact me at debdohairdo@earthlink.net if you have any questions. Good luck!!! and take care all, Deb smile.gif

[baker16]

Mgyno just put me on premhart. Has anyone heard about this one. Makes me tired and grouchy. Will this get better on hormones as time goes on. Just started it a week ago and feel crappy. Bladder does not seem any worse?? Please let me know what experiences anyone else has had, or if they have heard aabout this med. Thanks

[karhopp]

I have learned that anything with premarin in it can make your bladder flare. Let me know if it does affect you that way. And scroll up and read Sherry from GA, what she has to say. In most IC cases, premarin is a no no. But everybody is different. Good luck, hope it don't affect you that way. I think it sure did me. I'm in a horrendous flare now. Karla mad.gif mad.gif mad.gif

[Sherry from GA]

Everyone,

Let me make myself perfectly clear so as some do not misunderstand:

Here is my point: If you are an ICer that has recently been prescribed HRT with ANY type of Premarin and you experience an increase in bladder symptoms -- PLEASE CHECK IMMEDIATELY WITH YOUR DOCTOR AND EXPLAIN THAT SOME IC PATIENTS GET WORSE ON PREMARIN. Again, every IC patient is different so Premarin may or may not be your problem. I only want people to be aware that Premarin might be aggravating your symptoms. But please be advised, other ICers have suffered similar problems with Estrace and other types of HRT. Just be aware that hormone replacement can and does affect IC. With this illness we must all pay particular attention to our HRT regiment. It is my experience that ICers trying to find an HRT that works keep track of the types and dosages they have tried and annotate an increase or decrease to IC symptoms. Soon a clinical study will be performed to study the effects of hormones upon the estridiol receptors of the bladder and vagina.

Sherry

Sherry

[louise]

Hi,

I just wanted to refer anyone who is looking for more medical info relating to hormones and bladder/IC issues to a terrific book entitled "Screaming to be Heard" by Dr. Elizabeth Van Vliet. She discusses in detail a lot of what has been written about here. I would highly recommend it.

Louise

[louise]

Correction:

I had the name of the doctor of the book "Screaming to be Heard" wrong - her correct name is Dr. Elizabeth Lee Vliet.

Sorry for the error.

Louise

[SueP1]

Yes, I'd advise anyone with IC, Fibromyalgia, or migraines,etc. to read "Screaming to be Heard". It really clarified my decision to do the bio-identical equivalent to the human form of estrogen, rather than Premarin or Prempro, which is made from horse's urine. I'll be adding the Prometrium in a week or so. If you have a uterus you need to add the progesterone, which scares me about the IC flares.

[Gabi]

FYI:

I don't know much about HRT, however, I went to an infertility clinic for four years. During those years, at certain times each month, I had to give myself progesterone injections. For me, they had no effect, good or bad, on ic conditions.

Gabi

[SueP1]

Now I see what people talk about with the progesterone flares. I've been off my cycle of Prometrium for 10 days, and it didn't cause a period, but I feel like the old PMS- like I'm going to get one, and the burning has started up,as though before a period. I'm hoping since I'm only a week away from another progesterone round of 12 day cycling that this is not going to become a problem. I felt SO good on just the Estrace. Why is everything so complicated? I'd love to hear from anyone who has cycled Prometrium, just to share experiences.

[Pentimento]

Hi friends, When I have some free time I explore more of ICN by using the Browse Our Site menu above. I am awed by all the resources available here for every kind of pertinent information. Donna, Kim, Jack , Jill and Diane deserve all our thanks and appreciation for their work and contributions. This morning I read and printed the transcript of a Chat Log featuring Dr. Elizabeth Lee Vliet, author of "Screaming to be Heard: Hormonal Connections Women Suspect...and Doctors Ignore. The topic was hormones and IC and is very informative and makes interesting reading. Her replies to questions from ICN staff answers a lot of questions about the hormone connection. I noticed she has a web site of information but didn't have time this AM to check and see if it is still functioning and what it consists of. Here is the address given then: www.herplace.com (http://www.herplace.com) She does answer some male IC questions in the transcript. Hope this is helpful to someone. smile.gif Pentimento

[Judy22]

Another view--I have been on Activella HRT for five months. I was almost positive that I couldn't find a perfect fit for me, but this particular product has been a Godsend. I am also taking Fosomax 70mg--both of these medications help my preosteoporosis condition.

[louise]

Hi,

I am wondering how you access the Chat Log that refers to Dr. Vliet. I would love to read the transcript. Please help. Thanks.

Louise

[DebbieB]

Just go to http://www.icnetwork.com/guestlectures/ and down to the 1998 Lecture Transcripts and you will see the transcript there ok..

I hope this has help you!!


Debbie

[louise]

Debbie,

Thanks so much for your help. I had checked into the guest lectures but didn't go as far back as 1998. I have just printed it and look forward to reading it. I find Dr. Vliet's book "Screaming to be Heard" a valuable resource. Thanks again for taking the time to post - much appreciated!!
I see you are in Ontario. I live in Edmonton.

Louise

[DebbieB]

You are very welcome Louise!!!
Yes I am just about a hour away from Toronto..
I have a cousin in Edmonton, he is well known in the Edmonton ballet Company...

I am glad that I was able to help you find her transcript...

~~~~Debbie~~~~