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mbhbarb
10-04-2007, 07:18 AM
Hi. I'm new to all this. My question is about hormones and IC. I had a hysterectomy that included ovaries in April and was put on an estrogen patch for replacement therapy. I was told if I stayed on the estrogen I would also need progesterone because of the endometriosis. However, I elected to work my way down through the patch strengths and I am now not taking any hormones. Is this a mistake? I don't know if estrogen has a positive, negative, or negligible effect on IC symptoms. I can say that I have slowly felt better over time but I have made so many changes in my diet and life that there is no way for me to know if the hormones were influential.

Thanks

GriffsMommy
10-04-2007, 12:41 PM
I don't really understand the relation hormones play in IC but for most people they see a dramatic change in their symptoms in relation to hormones. For instance my bladder is soooo sore during the first few days of my period I am chemically stopping mine with continous birth control pills. I have read some other women say the time they have their period is the only relief they get from their IC.

Vicki
10-04-2007, 01:16 PM
I think if you can get along without hormones it is best for the endo. Progesterone tends to aggravate most ICer's bladders. If you have no uterus then you don't need progesterone according to most gynecologists. I have to take Estrogen as I am only thirty-nine. If I don't, then I get a major headache and bad memory issues. Also, we need some estrogen for our bones. However, many women over fifty seem to get along fine without estrogen from what I have noticed. I spend a lot of time on hyster sister.com THere are many women on there that had the hysterectomy late in life when they were menopausal or close to it and they do fine. However, the number of us under fifty that can get along without hormones seems to be few. I know that my bladder is better on a lower dose of hormones. I wish there was some tried and true rule for us to go by. However, it is very individual. Best of luck to you. -Vicki

Claredale
10-04-2007, 03:02 PM
I feel that I have proof that my IC is definitely related to my periods. I went many years knowing when I ovulated, I was going to flare. I kept a journal and definitely saw a pattern. Even my boys would know when to not cross mom! After many years of going through that, I finally asked my doctor if I could start getting the depo shot. I knew that I am a long way from menapause and I didn't want to go thru my 40s having periods and being in pain. I have been on it for 2 years or so, I missed my shot in August and I started into a flare in early Sept. I realized by a posting on here that I had missed my shot and I must be ovulating. My doctor gave me my shot the next day. It took about a week to get myself back to normal. I went to see him today and he was so pleased that I was back to my "maintenance" plan. I still have pain, but not the "off the chart" pain anymore.

laura dove
10-04-2007, 04:26 PM
Some Doc.s recommend avoiding synthetic hormones w/ IC>
All I know is that by the 2nd day of my period I end up in the
er unable to walk, though I also have endo lesions on the outside
of my bladder. Yet, this can not account for what feels like a razor
bush being pulled from my urethra. I feel for ya girl!!!!

OrlandoP
10-05-2007, 12:25 PM
I feel that I have proof that my IC is definitely related to my periods. I went many years knowing when I ovulated, I was going to flare. I kept a journal and definitely saw a pattern. Even my boys would know when to not cross mom! After many years of going through that, I finally asked my doctor if I could start getting the depo shot. I knew that I am a long way from menapause and I didn't want to go thru my 40s having periods and being in pain. I have been on it for 2 years or so, I missed my shot in August and I started into a flare in early Sept. I realized by a posting on here that I had missed my shot and I must be ovulating. My doctor gave me my shot the next day. It took about a week to get myself back to normal. I went to see him today and he was so pleased that I was back to my "maintenance" plan. I still have pain, but not the "off the chart" pain anymore.

Hi Tracey,

I have wanted to pursue the birth control route. Would you say then that it has made your flares subside when you are are the shots?

Charisse
10-05-2007, 12:38 PM
I have fibromyalgia and gastroparesis as well as IC. My fibro and gastro has always been better when on the pill and flares horrible when I'm off it. If you are considering trying hormones for the first time then you might want to try a pill versus the shot since once you get the shot you are stuck with any side effects for 3 mos until it wears off.

sandramac
10-06-2007, 02:36 AM
Im my own opinion , I belive it was the hormones treatments that I recived in fiterlity treatments that there is a link to my Ic. I know in my heart there is somehow a strong link, Every month my pain tell,s me too!
Hugs Sandra :cat: :cat: :cat:

glassd18
10-06-2007, 08:05 AM
My IC really appeared after I switched hormone replacement therapies, and I know somehow it had a lot to do with it. Since then I am having extreme difficulty trying to find another HRT therapy that doesn't hurt my bladder. I'm at the point where I may just have to go without, and let nature take it's course. I am only 42 and I had premature menopause at 36 so I'm pretty young, but I would rather not suffer with my bladder. Right now I'm on Enjuvia and Provera, but I think it is flaring me really badly.

Claredale
10-06-2007, 11:03 AM
Hi Tracey,

I have wanted to pursue the birth control route. Would you say then that it has made your flares subside when you are are the shots?

I have had 2 flares since I started on continuous bc. I had one last October when a doctor that I normally don't see tried to start me on rescue instills. I kept telling her that caths make me flare. I certainly should have just said no, but she told me with the lidocaine, etc.. she really thought it may help. Then she sent me home with no pain meds. That night and the next day, I was flaring so much that I could hardly talk. I left numerous (sobbing) messages for my new uro. I tried every flare remedy I could think of, but nothing gave me relief. All I had were muscle relaxers and they didn't even help me relax. I was like a caged animal that day. I have had flares that lasted days, that didn't have that much pain. My husband even went by there from work to talk to him in person, but he was already gone, but would be going through his messages. I didn't get a call until almost 7:00 pm, my husband was getting me dressed for the ER, which I knew I didn't want to do. My doctor had called in Lortab for me and I was fine within an hour. I went in to see my doctor that next week and he had my file from prior doctor that moved to another city, and saw that she noted that I don't need to be cathed unless absolutely necessary. The 2nd was last month, when I realized that I had misssed my quarterly shot that was due in August. So, I must have started ovulating which threw me into a flare. I had my shot on Friday after labor day and by early the next week, I was almost normal. By the end of the week, I was down to 2 pain pills a day again.

I have my quarterly appointments set to remind me when my shots are due, so I won't go through that again. I too will remain on cbc until I reach menapause.

I even sent my other doctor an email just to let her know that I was using cpc and was not having any more flares and she said that she would remember that in the future when her patients felt that there pain was increased during their ovulation time.

This might not work for everyone, as wel all know, our triggers are all different, but it helped me. I wasn't bad during my periods, just when I was ovulating.

Tracey

dhoffer
10-11-2007, 02:34 PM
I have been reading alot of posts on this and I wanted to see what everyone thought of this. Every month the week of my period is actually good. The week after is great. I have almost no symptoms. Then at about the 15th day of my cycle I will begin to bloat, cramp, have increasingly bad pain, and very heavy drainage. The drainage of urine will get so bad that I have to wear multiple thick pads and I am in the bathroom about every ten minutes to change drenched padding. This goes on until i start my period again and the cycle begins again. I have been thinking about birth control to stop my period to see if this would help anything so I thought I would get some opinions from all of you.
thanks
Dawn

sandramac
10-11-2007, 03:19 PM
Please again .I am not a doctor But in my personal case all hormone treatment have done nothing but caused me great pain!!!!!!!!!!!! I would take all your info into your Doc that you trust and talk to them long and hard before travelling down that road.
best of luck
Hugs Sandra:cat: :cat: :cat:

sandramac
10-11-2007, 03:23 PM
Tracey were your caths latex free? I have a latex allergy, This is how I found out .Had a install with a regular that caused great pain. Then got latex free size 12 ,have never had a problem since .Hope this helps.
Hugs Sandra:cat: :cat: :cat:

Claredale
10-11-2007, 07:06 PM
Sandra, no I don't have a allergy to latex, it just the act of putting in the cath. I worked a a daycare and in my church nursery and used latex gloves all of the time. It's just that my bladder gets so easily irritated. Good question though. My first uro that I went to made a comment about my ureatha being small and he couldn't believe that I haven't had problems before before now. But thinking back, I did have what my mom called a "shy bladder". I was so uncomfortable to pee in front or anyone or if someone could hear me.

Thanks for your suggestion, but it's just the procedure that irritates my bladder. The funny thing is that I can use the jet gels to insert lidocaine, and never had an issue with that. I guess since it doesn' actually go up in my bladder, it doesn't flare.

Tracey

Wolfe
10-12-2007, 05:43 AM
I'm pretty sure that hormones are related to both Fibro and IC. I can't relate to cycles and flares anymore because I had a hysterectomy when I was 23, but I've always felt that surgery, and maybe hormone replacement, had something to do with what I'm suffering now. The surgery was because of Endo that had started when I was 18.

I did pretty well with both the Fibro and the IC until I went off my hormones 3 years ago. (I'm now 51.) Then my Fibro started flaring, and now the IC flares all the time too. I'm sure the IC kicks up because my body is so stressed from the Fibro pain. At this age, I don't want to go back on hormones, but I seem to be in a downhill slide since I stopped them.

My personal theory is that for all of us, all 3 of these conditions are about an imbalance of hormones, and probably an imbalance of neurotransmitters, probably since we were children. Both of which can occur because of stress, by the way. Wouldn't it be great if we could pin down the pattern and figure out what to do about this? But it seems like everyone has a different pattern. Many of you have certainly figured out a lot of what helps each of you. You're all so smart!

karen10
10-22-2007, 03:22 PM
I agree! I definitely believe there is a connection between hormones, neurotransmitters and probably other systems as well! Keep posting here, maybe we'll figure it out before the medical community! :smile tee

sami4
10-22-2007, 07:58 PM
Hormones play a huge part in IC symptoms and in healing. Most women with IC find their IC is worse during the progesterone phase of their cycle and improves greatly with higher estrogen.
If you have had a hyster, I would strongly suggest taking some type of estrogen therapy vaginally, if you cannot or will not take both, one oral or transdermal and one vaginal. Vaginal estrogen use will keep your vagina healthy as well as your perineal area and urethra. The urethra has lots of estrogen receptors and can become inflammed if you starve it of estrogen.
There are huge differences in the type of estrogen taken, natural estradiol vs horse estrogen such as Premarin or a synthetic estrogen. Most synthetic estrogens are irritants to the IC problem, natural estrogens are usually not.
Sammi

magmouth
10-24-2007, 02:46 AM
HI all

I want to express my opinion here and it is just my opinion and my experience with what happened to me.

I had a hysto and removal of my ovaries in 1990 and have been on premarin 1.25 since then.

I was diagnosed with IC by my ob/gyn (he specializes in female bladder problems) in May of 2006, in Aug 2006 I had the hydrodistention (sorry about the spelling) by Oct he starting weaning me off of the hormones, by Nov, I was having major hot flashes 4 to 5 times an hour and this continued through out Dec. I was miserable, couldn't sleep, memory was shot, and don't even say sex to me, and extremely depressed. By late December I put myself back on premarin and my symptoms begin lifting, also I might add here that I was put on Elmiron in Aug of 2006 and had not experienced any symptom relief from IC problems. Early Jan about the time I had started taking premarin again almost overnight I stated feeling some relief from my IC issues, I began sleeping more at night and I went from getting up 20 to 25 times a night to 3 times a night and then within two days I was only getting up once.

about a week later, Iwent to the doctor and he pitched one big fit about the hormones,he is an OD and believe in complete natural organics.

He put me on an estergen cream, which helped some but I was still having at least one large hot flash an hour and not sleeping at night and back depressed. I lived this way for the next 9 months.

One day I said no more, I pulled out my premarin pills and started them back. I am doing good on .625 which is half of what I was taking. I canceled my next appointment with the doctor I was seeing and then made one with a Urologist.

At this appointment I confessed my history and he told me it was ok to take the hormones, and I'm going to happily stick with them.

Karen
FL

sami4
10-25-2007, 06:38 PM
Karen, you did the right thing by getting rid of your nut doctor. He had a belief system that he practiced medicine by, not by what was obviously severe symptoms of estrogen deprivation which would have been obvious to any second year medical student. He was more interested in touting his "belief" then listening or caring for his patients. He also apparently was out of touch with research on hormones and quit reading some time ago. Estradiol or birth control pills are not linked with breast cancer. Premarin alone is not linked, but Premarin combined with Provera or Prempo is. So dont take the combo. Duh!
Isnt it interesting how we women ignore what we know to be true and allow a authority figure to call the shots for us? Always, always listen to your own body, and have confidence that you live intimately with it and know it better than any stranger ever could.

karen10
10-25-2007, 06:43 PM
Well said!!! I have learned to listen to my body over my dr at times. I'm the authority on my body, and the dr is the authority in the medical field! :smile tee That means we have to form a partnership to get the job done right!

laura dove
10-25-2007, 07:29 PM
I was hospitalized for a flare, when 10 weeks pregnant. I refused
to take elmiron orally,because it was not recommended by the
makers of the drug and had only been on the market for 10 yrs,
at that time. There had been little testing during pregnancy; though it
was considered a category B. My Ob. recommended that I might
think about terminating the pregnancy if I was not going to take
the drug. She asked me if she could have a shrink talk to me, because
she thought that I was in the hopital to get high off pain meds.
Luckily, the psychitatrist thought she was the one with problem and said that
it was clear that I was in a terrible flare.(the shrink actually said this
and chalked it up to a communication problem on the docs.end)I filed a complaint
and found a new doctor. I researched like hell and did behavior therapy
for pain and stress, pelvic PT, accupuncture, and elmiron instillations
(1 pill instilled per week vs. 3xdaily orally). I stopped the very small
amount of pain meds by the end of my 2nd trimester and birthed a beautiful,
HEALTHY,
and intelligent baby boy who was full term .This story taught me to ALWAYS follow your instincts and not what a doctor, or anyone else for
that matter, recommends or says.

magmouth
10-26-2007, 01:52 AM
What a horrible experience to go through while pregnant.

I had confidence in my nut at that time, he was the one that diagnosed my IC and he said Hormones were very bad for the bladder so I was willing to go along. But after all the other junk, hot flashes, memory loss, depression that was all to such a level I started thinking hey take my bladder out and give me the hormones.

It has taken me a bit to come around to listening to myself and now I'm more trusting of myself.

ICNDonna
10-26-2007, 02:22 AM
I'm a little late chiming in here, but from the number of people posting here about hormones related to IC symptoms, there definitely seems to be a connection --- many ICers report that their symptoms are much worse before and during their menstrual periods.

I had a hysterectomy before I developed IC so I can't speak for myself on this.

Donna

Claredale
10-26-2007, 03:57 AM
Hi Tracey,

I have wanted to pursue the birth control route. Would you say then that it has made your flares subside when you are are the shots?

I have been on them for a little more than 2 years. I have had 2 flares in that time. When I first started seeing my current doctor. He didn't have my records yet from my doctor that moved to the other side of my state. I didn't know what was going on because I had never had an "instill" except for DMSO and definitely should have asked, but he was a new doctor and I didn't want to seem like I wasn't willing to try his treatments. I went into an immediate flare. When he got my records, he realized that my previous wonderful Dr. Ragi had my file flagged that I was very sensitive to any type of caths. The 2nd flare was when I forgot to have my shot in August and I had a flare in September and I my pain meds weren't even lasting the 4 hours so I was in a panic since I couldn't figure out what was going on. I happen to read a posting about hormones, I counted back and realized that I was due for a shot the month before. Just a few days after my shot, I was back to normal.

I couldn't convince my uro/gyno at the time to put me on birth control pills because I was already on so many meds. I really wanted a hysterectomy but I didn't need one. I went to my regular gyno and met with a NP. She had someone in her family that had IC and didn't see any reason why I shouldn't try the depo shot.

I have never had any breakthrough bleeding and I don't have PMS at all. I kept a journal and I could tell right when I was ovulating, because my pain got much worse and I normally had flares that lasted several days. I still have daily pain, but no flares. I have my Outlook calendar at work to give me reminders of when my next shot is due!

I did alot of research on the shot before I requested it.

T83

Charisse
10-26-2007, 04:44 AM
My hormones started going south in my late 20s. I didn't think it was possible to be estrogen deficient at that age but when I'm not taking estrogen I have hot flashes and ache all over and feel awful. I have been told by my rheumatologist that estrogen even helps fibromyalgia pain and symptoms. It doesn't surprise me that hormones play a strong role in making individuals susceptible to IC.

magmouth
10-26-2007, 05:01 AM
I can't say as I've noticed less flaring while I"m on the hormones (had ovaries removed in 1990 ) but my overall better health is something I can say I noticed, I sleep better, I feel better.

But .... several articles I've read talked about getting women off of hormones replacement therphy because "they" claim they do harm to the bladder.

After my experience, they can have them when they pry them from my cold dead hands, LOL

After dealing with the nut, and his "bio-identical" hormones and him taking me off the HRT. NO way, no more playing with for me.

Charisse
10-26-2007, 05:07 AM
Ha ha that's how I feel! Don't ever take my hormones from me!!! I take the pill because I'm 32 and I can't imagine not taking it for the rest of my life. I do think it also helps with sleep because I started having sleep problems when I stopped the pill last year. I will cry if they try and make me stop when I hit menopause.

magmouth
10-26-2007, 05:15 AM
LOL, I"m 51 and they are not going to get them from me.

There are just too many reasons to take them.

laura dove
10-26-2007, 10:48 AM
It is so interesting and frusterating at the same time, but
hormones seem to effect IC'ers differently. Some get better
while pregnant, some get worse. Some get better on synthetic
hormones, some get worse. Some find relief in menstration, some get
worse. I got worse with pregnancy,on the pill, on lupron (4 endo)and premerin(to combat lupron side effects) and I flare during ovulation and
menstration. I never knew that other women with ic benefited from synthetic
hormones until I read this thread. This is why it is IMPERATIVE that
we know our bodies , listen to our symptoms, listen to others,
educate ourselves, and find doctors that listen, care, and are proactive. No wonder
this disease is so hard to treat.I suppose this is why I hit such a brick
wall when I asked my uro questions and suggestions. He does research
for NIH and I put all my eggs in his basket. I am forever grateful for the knowledge and support from you ladies.

sickofmybladder
10-29-2007, 03:35 AM
I am in the midst of a horrible flare at the moment and I believe it is because I'm ovulating - so yes - I am definately hormone sensitive.

sami4
11-04-2007, 10:13 AM
During Pregnancy you have the highest Progesterone levels of your life, before your period your estrogen drops off and Progesterone takes over. Hence PMS symptoms or bladder flares.
The bladder is full of estrogen receptors, and by the way the brain is also. Out here at the Alzheimers Research Center they say that estrogen is very helpful for brain functioning and women who are on hormone therapy are less likely to get AZ as well as have less brain atrophy.
Yes, I said brain atrophy which unfortunately starts around age 45 and gets worse with age. This is considered normal brain ageing. I am not talking about Dementia or AZ, just normal brain ageing. Estrogen helps the brain and neurons of the brain to keep functioning. Your whole body needs estrogen, dont let any one (especially a male) tell you different.
Men as they age do better on testosterone replacement also. It cant be sky high replacemnt but adequate, just like HRT for women.
Sammi

Claredale
11-04-2007, 01:32 PM
Sammi, that is very interesting. Thanks for sharing.

Tracey

Vicki
11-04-2007, 02:28 PM
I peed incessantly while pregnant with my twins. i chalked it up to being pregnant with two babies. I got a raging bladder infection at about twenty-five weeks but did not know I had it until I saw blood on the toilet tissue and thought I was miscarrying. I am also one of those that flared before my period. I had a hysterectomy a year and a half ago so I am not on that monthy roller coaster any longer. -Vicki

sami4
11-05-2007, 01:01 PM
If you had a Hyster you are one of the lucky ICers because you can take Estrogen and not be bothered by the uterine buildup.
That is the main reason I had a Hyster last March, so I could get an adequate dose of estrogen and not take the bladder irritating progesterone.
Sammi

mbhbarb
11-05-2007, 01:37 PM
Sammi,

Tough choice for women with endometriosis. Brain atrophy or endo activity. Women with endometriosis and IC have the additional issue of whether to take estrogen/progesterone to add estrogen without inciting the endometriosis but then they risk bladder pain from the progesterone. No easy choices there. Am I missing important information or is that pretty much how it is?

barb

glassd18
11-05-2007, 03:41 PM
I am taking Climara Pro patch (17 estradiol, levorgestrel) right now, and I can honestly say that I'm sleeping much better even after 1 day. I was having terrible hot flashes, anxiety attacks, aches and pains etc... I've been on it since Saturday, and I'm hoping desperately that I can tolerate it because I don't know what else to do after this. I would have to have bioidenticals compounded, and I know that's not an exact science either. Hormones definitely play a part in IC. It was when I switched the HRT I was using to Estrace and Prometrium that my bladder freaked out, never to return to normal. My bladder was already sensitive, but that pushed it over the edge. Some of the HRT's, BCP I tried flared me, but this one is not so far.

sami4
11-06-2007, 03:51 AM
Climara is 17-beta estradiol just like Estrace is, you are just using a different delivery system. In other words its as much bio identical as anything else, it is just a patch not an oral. I think your problem was not with the Estrace but with the Prometrium. Prometrium sent me into a vulvar flare from hell, and I could not take it. I actually did better on a synthetic progestin, Levonorgestel (from the testosterone family of progestins) which I used in a medicated IUD called Mirena. It stopped my periods and uterine build up and did not go systemic, only directly into the uterus.
If I had an endo problem I would take my hormones vaginally. The place you need them the most for IC relief is in the vagina, anterior wall. So taking a estrogen cream there daily will be least likely to upset your endo. I would also take the progesterone vaginally as well. Be in mind that taking progesterone vaginally to just cause a bleed would be a lot less than an oral which is overkill. A progesterone vaginally can be about 50 mg as opposed to the 100-200 mg of Prometrium given orally. Then, if you are still having problems with low estrogen symptoms, your next safest step would be a low dose patch or transdermal; see how much you can tolerate and not aggravate symptoms.
Hugs,
Sammi

mich2604
11-06-2007, 04:37 PM
my symptoms improve the week before my period. what hormones are most dominant?

the first two days of my period are the worst

and ovulation discharge is so acidic it burns me and messes with my urethra and urine stream- what hormones are dominant?

sami4
11-08-2007, 06:30 AM
Just before your period your estrogen levels peak, as your period approaches estrogen levels fall sharply and progesterone levels rise. Progesterone levels peak, and begin to fall as you bleed. As you stop bleeding, estrogen levels begin to rise again.
Sammi

Claredale
11-08-2007, 08:55 AM
I don't have periods anymore, but when I did, it wasn't the periods that ever gave me problems. They were heavy because I was anemic, but that was it. I had the problems during my ovulation. Thank God for pbc for me. I was down and out for a week every month for too long.

Tracey

laura dove
11-08-2007, 10:21 AM
Sami,

Thank you for educating me on the rise and fall of hormones
during pregnancy and menstruation. Knowing the science behind
the illness is so important. There is a lot of comfort in knowledge.

laura dove
11-08-2007, 10:22 AM
Sami,

What exactly do you do for a living, if I may ask???

A.J.
11-08-2007, 07:52 PM
I thought I would chime in since this topic has been very relevant in my life! I've had extremely painful, dreadful, horrible etc etc periods since I was about 16 (started menstruating when I was 12) which just so happens to be around the same time that I first noticed my IC symptoms. Interestingly enough I've never done well with birth control even though I've wanted to so badly to help my periods. I've many forms of hormonal bc and it's just made my cramping and bleeding worse. My doc and I were talking in his office today and he decided that hormones just aren't gonna work for me. We're going to try an IUD even though I'm scared to death of it since I'm only 21 and haven't had kids.

He's convinced though that some women with IC just can't handle the hormones. Gosh darnit. What else can be wrong with me?! :bonk:

BBB
11-08-2007, 09:06 PM
I was the same exact way Tracey, down and out every cycle. The issue was I cycled every 21 days, so it didn't leave very many good days in between. My hyster two years ago was the best thing I ever did.

I am 41 now and I am having a hard time getting my estrogen right. I don't take any and if I do, my breast get swollen and my chin breaks out.

Does anyone know what that is about?

sami4
11-09-2007, 05:25 PM
Is you Doc talking about using the Levonorgestrel medicated IUD which will stop your periods and keep the progestin only in the uterine lining? I have used this and it was great. You will spot for a few months off and on, but it will stop your periods. I used in for post menopausal hormone replacement and fibroids. When its removed, things go back to normal for you.
Sammi

jen48446
11-12-2007, 01:19 AM
My personal experience, yes hormones are linked to IC! Pm me with your e-mail address & I'll send you my story:smile tee Keep in mind this is my opinion & do not have a doctor's diagnosis supporting this, just an FYI.:angel::smile tee:cat:

Shana1234
11-12-2007, 02:48 AM
I belive it might to some extent. I have very MILD symptoms, but while I was on Yasmin for birth control, I had horrible flares around my period and before it. Now that I'm off birth control I haven't had a flare. It's been about 6 months now. Maybe I was just sensitive to it, but birth control pills are obviously synthetic hormones that might mess with our system if we are sensitive to that kind of thing.

asilva
07-10-2008, 04:08 PM
In my case, hormones were definitely the cause of my IC. I began experiencing IC symptoms in my early 40's during perimenopause, and they continued through menopause and got considerably worse in post menopause. I began to make the connection, read Dr. Vliet's book Screaming to Be Heard and decided I wanted to see her because of all the doctors I saw during this horrible time, she made the most sense. (I actually got her name from this website under the doctor list-she had also done an interview with Jill several years ago.) Two years later I am still her patient and rarely ever have any bladder symtoms at all. My overall health has improved immensely. She has me on: Estrace Vaginal Cream, 3x a week, Estrogel twice daily, Divigel, once daily and Prochieve to have a period (I still have a uterus). She keeps a very close eye on me, runs frequent serum levels of everything you can think of, orders vaginal sonograms frequently, and if she thinks something isn't working, she changes it up. She works closely with my Internist regarding my other meds and makes suggestions to him when she thinks I need a change. Even though they have never met, he has a great deal of respect for her and credits her with the improvement in my health.

glassd18
07-12-2008, 06:05 AM
Asliva,

I so think this is what happened to me too. I haven't been the same since I because premature menopausal at 35. It was when I switched hormone replacement therapies that my IC took off. I've been playing around with my hormones again, and what a mistake that has been. I thought it was what was contributing to my aches and pains, but when I stopped HRT my pains were still there, and my IC symptoms mounted quickly and I'm not sleeping again. Arrrgh is all I have to say. Thank you for the post.

glassd18
07-12-2008, 06:12 AM
Asilva, Why do you take Divigel, and Estrogel? How often do you use prochieve?

Flowerchild
07-15-2008, 12:41 PM
I have been oin Estradiol for several years. (blue pill) I also used Estrace Cream as needed. I have been flaring off and on since last Oct. and currently in a 2 month flare. I have discovered that since my removal of ovaries , my bladder is super sevsiive to certain medicines. Tylenol for instance is one I have taken for years but can only take if really needed now. I can't take Miralax which is pure propelyn glycol (sp?) and Tylenol has it too.

I'm suspecting that my Estridiol could be the culprit at this time. I am going to stop the pill for 10 days and see what happens. My URO said to continue the Estrace cream by using a good dollop externally every night and not to do internal. I'm going to try that.
I have been on oral /patch estrogen for 5 years and I will be 48 soon. I hope this will make a difference and I won't have to many issues if I quit taking it. There are so many inactive ingredients like propelyn glycol (sp?) and binders that are in medications it's hard to tell what is causing my bladder flares.

Flowerchild

snowgirl
07-15-2008, 12:47 PM
I have been on continous bcp for 17 years. I can't come off of them as the pelvic pain before periods is so bad. Taking the pill everyday also kept me working full time. I have been on Lo-esterin for years. Sometimes I flare at the same spot in the pack everymonth. I am going to ask about a different pill. The other question is how will we know if I am peri menopausal unless I come off the pill? We won't. VIcky

justice4j
07-15-2008, 08:16 PM
Vicky,

I would say get your hormone levels checked NOW and don't be stupid like I was. I took BCPs until I was 53. My Layla had 10 puppies and they had to stay under a warming light for the first 2-3 weeks of their life b/c their neural pathways for thermal control don't mature until then.


Well, I was having hot flashes and didn't realize it until the puppies had no more need for the light and I still got really hot. Had my hormone levels done and I was in the throes of MENOPAUSE WHILE ON THE PILL!

They CAN test you even if you are on the pill. Talk with your doc, but what works best for me is BioIdentical Hormone Replacement Therapy. I do Estrogen Cream - less of a load on the liver- and Progesterone orally. Oral Progesterone also helps me sleep. Some people react to it, but you only need it if you still have your uterus. I do not react badly to P. Helps me sleep. Directions on the label are "Take 1 250 mg. capsule at bedtime."

Tuckersmom
07-16-2008, 03:07 AM
Estrogen plays a large role in maintaining bladder health, which is why the majority of menopausal women experience an increase in bladder infections. I've had IC since I was 34. I am now 52 and post menopausal. I take a low dose soy derivative HRT pill each day, and also use Estrace cream 3 nights per week.

glassd18
07-16-2008, 07:50 AM
Flowerchild,

I take Estrace, and I take the pill form vaginally at bedtime!!!! I have a friend who does this also. You do not have to stop taking it which may make your bladder worse. I stopped my hormones because I thought they were creating havoc with joint pain, but I stopped, and found out the joint pain was still there: possibly Fibromyaligia, but could be still related to hormones. It made my bladder worse too.

Anyway I have been taking Estrace (the bluish purple kind) vaginally now for a few days, and I'm doing much better!!!! I too can not take them orally as the dyes irritate my bladder. This method bypasses the gut. Another thing you might consider is trying the lower dose Estrace twice a day orally that has no dye. It is white Ask your pharmacist. It has to be taken twice instead of once or two at a time I guess. I don't even bother with it anymore. I just use them vaginally. I am feeling sooooo much better now. I use Provera 2.5mg 1 x day because I have my uterus still. All the other progesterones bothers my bladder.

Claredale
07-16-2008, 08:07 AM
Good point Janet.

I had my hormones tested because like Vicky not having a period, I just wanted to make sure it was still okay to get the depo shot. Still no signs of menapause starting. I definitely don't have hot flashes yet. I am sitting here at my desk with a sweater on and my heating pad on just so I won't be cold. I can't figure out why they keep our offices so cold. I know they say it's good for the servors, but I am not even close to the servors. All the women in my family were all past 45 before they had any symptoms. My aunt just turned 50 and she is just starting.

glassd18
07-16-2008, 08:36 AM
When they test for menopause they are looking at the FSH levels as well as Estrogen. My FSH levels were post menopausal at age 35 which was an indication of Premature Ovarian Failure. I'm now 43 and can be considered in the age range for regular menopause although it is still young in my opinion. My Mom had menopause in her early 40ies. She had 4 children though. I unfortunately did not have any children so this diagnosis was a terrible loss for me. Here is an article about FSH:

http://en.wikipedia.org/wiki/Follicle-stimulating_hormone

Flowerchild
07-22-2008, 06:20 AM
Well, it's been almost 10 days since I went off my Estradiol pills and just using Estrace Cream. My IC has backed off a bit & urethra pain is better. I have had an increase in hot flashes but not to bad. My emotions have been fine but I have had a wee bit of trouble sleeping.
Glassd18..I did try the pill vaginally. It seemed to irritate and keep the flare going?????? Even the Estrace cream irritates me sometimes. I need to check into having it made thru a compound pharmacy where they may can leave out some o the dyes, fillers ect... that I seemingly have problems with.

Honestly, I'll take the other symptoms if it means my flares are gone! I just can't deal with it and am miserable when my bladder has gone on the blink. It consumes me, I can't get away from it, nothing seems to help. I don't know, with no estrogen, it may return in time as well as worsening menopause symptoms. But for now I have had a moderate lifting of pain.

Flowerchild

asilva
07-22-2008, 06:25 AM
I take Estrogel and Divigel because my doctor felt like my estrodial number wasn't high enough. I take the estrogel first thing in the am and then again before bed and the Divigel I am supposed to do at noon, but quite frankly I usually forget because I am out and about or working. Flowerchild, I know what you mean. When I am off the estrace cream, my flares start back up again. I'd do anything to keep them at bay.

jen48446
07-23-2008, 12:28 AM
In my personal experience, yes with out a doubt my hormone imbalance aggravated the IC & other conditions I have!

The more stress I have to deal with the more my bowel & IC acts up too.:angel::smile tee:cat:

glassd18
07-25-2008, 05:26 AM
Flowerchild I hear you loud and clear!!! I tried going off of HRT quite a few times, but always go back as I just can't sleep well, and don't feel as well, but then the IC symptoms are a bear to get around!!! GRRRRR. I think I was getting irritated from the pills vaginally too, but I'm using the Estradiol from Barr Labs which is the same manufacturer as the purple/blue pill, but it's the lower dose one that doesn't have any dyes in it. I have to take two a day instead of one though. I'm taking them orally, but I'm not sure how I'm doing truly at this point. I think I was better on the Climara Pro patch with an extra .75mg Vivelle dot patch together. The Climara Pro patch didn't have enough Estrogen so I was bleeding all the time. I'm seeing my endocrinologist/gyno on Tuesday. What a nightmare!!!