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marym
08-27-2004, 06:28 AM
I am a post menopausal women with IC and Vulvodynia. I am supposed to apply estrogen cream to the urethra/vagina twice a week. It is irritating on the urethra, even when applied vaginally. I am having a lot of trouble getting a compounding pharmacy to make the neutral compound when they have to bill my insurance.

Any suggestions. I do live in CA, north bay. With UPS, I guess I could go to any pharmacy.

Thanks.

Mary

SharonA
08-27-2004, 06:38 AM
:hi: :welcome: Glad you are with us.

I am curious about something. Why are you using estrogen if you are post menopauseal? Does it have something to do with the Volvodynia? :hmm:

marym
08-27-2004, 07:10 AM
When you are post menopausal, you lack estrogen which causes the tissues, not only of the vagina to dry out, but the whole area including the urethra, where I have 98 per cent of my pain. Dryness causes irritation especially to already irritated urethra. Further, I had breast cancer so that I cannot take systemic estrogen (like a pill like premarin).

Mary

anglico2024
06-12-2007, 03:04 PM
My mothers really suffering

Thank you....

sami4
06-12-2007, 03:54 PM
Any vaginal estrogen will burn and sting when applied to estrogen starved and inflammed tissues. This will last about two weeks, but it takes 6 weeks to repair damaged tissues.
You can send a RX to Womens International Pharmacy which is a huge compounding pharmacy that mails right to your door. You can also call them and ask for names of doctors in your area that use them. They use an olive oil base to their estrogen creams. Google them for their 800 phone number.
You can usually find a vulvar specialist around a teaching hospital in the Gynecology Dept. or google vuvlar specialist, MD and see if you can find their website. There are probably a lot of them in and around your area.
Sammi

dminton
06-17-2007, 05:15 PM
Estriol in cocoa butter, compounded, works great. I love it! No irritation whatsoever from the base, and the tissues are feeling back to normal in less than two weeks.

Diana.

kstearns
07-07-2007, 09:50 AM
Dear wiser than I...

I too have just been prescribed a vaginal Premarin cream for a diagnosis of atrophyic urethritis/vagininitis, the symptoms of which have led me to believe I have IC..

I'm almost 62 and have had constant problems with urge/frequency--no pain and a clear (whatever that truly means in a quick look) cystoscopy last fall.

I have been convinced I have IC but now I'm wondering if two docs (one gyn, one NP for a general practitioner) aren't right and it's not IC but this vaginal thing.

I don't see the relationship b/w the bladder problems and the thinning of the vaginal lining--but I'm told (and seem to be reading here) that there is a relationship and that the symptoms of the vaginal thinning can seem like one is suffering from IC.

I haven't started using the Premarin yet and from what I'm reading here I think I want Estrace (?) or something other than Premarin...

What are the gold standard tests (if there are any?) to help me determine just WHAT I'm suffering from? Estradiol test???

I do not have the pain many IC sufferers describe.

The symptoms are confined to intense need to urinate and going many many times a day and during the night.

I have no idea if diet is affecting these symptoms.

It seems that if it's IC it would and if it's the vaginal problem diet wouldn't make that much diff.

Please tell me what you can. I really appreciate the support here.

Where would we be without it?

Karen

P.S. I think I should see a uro-gynecologist? What do you think?

sami4
07-08-2007, 06:03 PM
Kay, there are huge reasons why vaginal and urethral atrophy will, can and do cause terrible urinary and vulvar symptoms. The lining of the bladder and urethra have estrogen receptors. These lining cells are sensitive to the rise and fall of estrogen levels during cycling, and at menopause the drop in estrogen causes the cells to change in triggering the urge to pee, muscle tone, PH of vaginal canal, lubrication, measurable changes in the pressure of the bladder and urethra. As estrogen levels remain low the cells lining the bladder, urethra, and vagina become thin or atrophic and and the nerve endings become irritated, red, and painful from lack of estrogen. This triggers a urge to pee as the irritated nerves fire in a kind of loop. The smooth muscles of the bladder also loses its ability to close properly which makes for leakage.
Estrogen decline can cause vaginal and vulvar dryness, itching, burning, stinging pain, pain with intercourse, reoccurent bladder infections and inflammation, urethral infections, yeast infections, loss of urine, urinary frequency and urinary urgency. Lack of estrogen causes things to dry out and the protective linings of the urethra, eyes, bladder, mouth, and linings of the internal organs become dry and irritated. Estrogen is a lubricator, and without it your body becomes like the Sahara Desert.
It takes about two months to reverse atrophic vaginitis. Your doctor will probably tell you to use the cream every night for two weeks then every other night for a month then twice a week. When you first apply the cream to the red sore tissue you may feel a burning sensation. This will go away as the tissues become estrogenized in about a week or two. It is the irritated and dry nerve endings that are causing this. When using the cream rub after you put it inside, rub some around the vulva and urethra.
Just because you are taking oral estrogen does not mean you dont need vaginal as well. About 75% of women on oral estrogen replacement also need vaginal estrogen. You also need a serum level of estrogen that is at least 100 or you will have UT and vulvar symptoms.
One of the worst IC flares I ever had turned out to be atrophic vaginitis. I had so much frequency that I had to get off the examining table and pee twice. No infection, no yeast, but a very bad case of atrophic vaginitis.
Good luck, be patient, it will get better, but not over night.
Sammi

sami4
07-08-2007, 06:11 PM
Forgot to answer your question as to why putting estrogen in the vagina helps the bladder? It is because the bladder sits on top of the upper vaginal wall and can directly absorb the estrogen placed in the vaginal area.
Premarin vs Estrace? Premarin is stronger, works faster, and for vaginal use probably does not make much difference if you tolerate it well. If you were going to take an oral, I would say Estrace. Premarin is not bio identical, Estrace is, but again for vaginal use the stronger potion may be better.
Do you have IC? At this point hard to say, get the estrogen thing straightened out, see how things go? You could just be estrogen deprived with an overactive bladder? Diet can make some difference if you are having frequency as some things do irritate it and act like a diuretic--caffein for instance.
Sorry to be so long, but your questions were not one liners.
Sammi

kstearns
07-09-2007, 01:54 AM
Dear Sami thank you so much for your replies. I can't tell you how helpful it is to have the benefit of your significant knowledge.

Clarification and more ?'s--

I'm not taking any oral estrogen and don't really want to.

The Nurse Prac. I saw recommended using the cream only three times a week or else she said I would need to have progesterone too.

I haven't been using the applicator--have trouble thinking about putting anything up and inside me.

I've just been rubbing it on the outside of the vagina which the nurse seemed to think was fine.

It sounds, though, that it won't be adequate to do just that and that I need to use the applicator plunger? What do you think?

I don't know if I have IC--how can one know if it's the atrophying or IC?

The uro I went to last fall never suggested it could be urethritis/vaginitis...but he also didn't make a finding for IC from a cysto.

Why would it "flare" if it were atrophyic urethritis? Why wouldn't it be a constant problem. I did have better months after the flare last fall.

I can't tell if diet affects it...I need to be scrupulous about cutting out certain things and see. I do know that I can't drink a glass of wine without paying for it for example. And I've cut out my beloved unsweetened iced tea and any kind of diet sod which I used to drink very occasionally.

Is there a good resource to read on this vaginitis business?

Is it a good idea to see a uro-gynecologist for my annual summer checkup?

Is it ok to increase the dose of the estrogen I'm using? More than 3x a week?

Thank you so very much for your advice.

Please do write again. Karen

sami4
07-09-2007, 09:16 AM
I would be really curious to know how your "nurse practitioner" diagnosed atrophic vaginitis? The way this is usually diagnosed is by a pelvic with a smear taken for hormone count and by the appearance of the vulvar and vaginal tissue which is no longer a healty pink, but either red and inflammed or very pale. If she diagnosed atrophic vaginitis then why would logic lead you to believe that putting Premarin cream on the vulva help the atrophic vaginits? Granted, using Premarin cream around the vulva is necessary and good, but the problem started in the vagina so how is that helping that?
Why you have a probem sticking the premarin tube up yourself is beyond me? If it hurts, it hurts because you have no estrogen or lubrication due to the AV.
Studies have not shown that a woman with a uterus who uses vaginal estrogen 3 times a week causes the endometrium lining to grow. In other words you dont need progesterone for that teeny bit of estrogen to cause a problem with your uterus. If after a year your practitioner is still not convinced have her do an ultrasound and see if your lining is thick or not. In your case with AV, your lining is probably under 2. Using vaginal estrogen for continous two weeks will not make any difference in your vaginal lining.
Giving you progesterone in state when your problem is caused by no estrogen will only make your problem worse. Progesterone blocks estrogen and you have very little. Ask for a serum blood test to see what your blood level is? It is probably under 40 and more like 20.
Dont worry now about IC or not IC, clear up your present symptoms, then see how things are going? I already explained to you how the bladder, urethra and so on are effected by loss of estrogen, naturally they are going to get inflammed and sore.
You "flare" or have times when things are better because if you have your ovaries you are still making a teeny bit of estrogen even after menopause, and it probably makes it in in a few tiny spurts which help. You are still making testosterone which may also help a little. Not enough to sneeze at but some.
Should you go to a Uro-Gynecologist for a check up? I would sure go to a Gyno or somebody other than a person who thinks using a little vaginal estrogen needed to be balanced with Progesterone, and who thinks smearing it around the outside will fix the atrophic vaginitis.
How you take and use your Premarin is your decision and your doctors, but there are no medicine police either.
Sammi

kstearns
07-09-2007, 09:37 AM
Dear Sami, NP didn't "diagnose," but rather suggested that what she saw in the exam (she did swabs--no results yet) plus the symptoms plus what the gyno said a year ago (and her giving me vagifem then) added up to a possible problem with Atrophic urethritis/vaginitis.

I appreciate your telling me I have to put the premarin up into the vagina. I was afraid it would make the IC symptoms worse as some women here seem to report that it does.

So I was being cautious. Obviouslyi the NP expected me to use it as directed on the package. I am naive about this and thought that maybe it would be absorbed into the vagina somehow if put on the vulva. Guess not.

If you think I need to use the applicator I will try that. Is 3x a week sufficient to start?

I am not concerned about adding progesterone but I'm sure NP's are cautious about recommending too much estrogen without progesterone given the conflicting information that seems to be out there about effects of hormones on cancer production.

I definitely need to find a gyno I can trust (not my previous one) and pursue the testing that will tell me what the numbers are. I also need to find out what the swab results are.

And I need to use the premarin internally.

Any other suggestions?

I am grateful for your help.

Question? When I get your response in my email I can't respond to that email right? It comes from the IC Network not you I realize that.

I can only respond here?

Thanks so much again. Karen

kstearns
07-09-2007, 04:57 PM
The more I read these posts the more I learn. IS Estrace bioidentical?

If one has miserable bladder symptoms is it a good idea to start with vaginal cream premarin (how much in the applicator?) 3x a week?

OR would it be better to start w/a compounded estrogen--what does one ask for? And where? It seems that some of you send off to special compounding pharmacies?

I want to learn as much as I can as I now am feeling that the bladder urgency/frequency may be estrogen not IC related.

I've started w/the premarin--but don't want to use it if I can quickly determine what bioidentical compound would be preferable.

Thank you so much for your response.

Karen

sami4
07-09-2007, 07:21 PM
Karen:
Bio identical estrogen is called estradiol it comes in tablet, patch, cream, gel, troche, or liquid form. It is sold by RX and as Estrace oral or vaginal cream, Vivelle Patch, and other products that are not made at a compounding pharmacy. Compounding pharmacies also make most of these products or combos of products.
Premarin is not bio identical and has a horse urine hormonal base. Bio identicals dont just pop out of a yam or soy as a hormone but are taken into the lab and engineered to be identical to the hormones made by the body. Many women use Premarin and get along just fine on it, as it is the most RX hormone replacement product in the US. Other women dont do well on it and have either a reaction or feel it is too strong. How you will react is something you just have to try.
I would suggest if you want to learn about this to buy the book by Dr. Elizabeth Vliett called Screaming to be Heard. This will explain the basics of hormones and their relationship to many different problems such as IC, migraines, fibromyalgia and so on.
Hope you find a good Gyno to clear up your confusion and answer your questions. You might call your NP and ask her some of them?
Estrogen use does not cause cancer. Many, many studies have been done on this and the results are always the same, estrogen does not cause cancer.
If you have a cancer and take high dose estrogen it can cause a cancer to enlarge. However, even this is being revisited and many Oncologists are now RX low dose estrogen to former breast cancer patients. Horrible fact is that cancers of all kinds are more common as we age.
The scary studies were done with Premarin and Provera or Prempo which is a combo of the two. Even at that they concluded that the Premarin alone did not increase the risk of breast cancer.
As for menopause, women not on hormones will produce the most estrone which comes from the adrenal glands and even some from the ovaries. This is the time when BC takes quite a rise. Estrone is the metabolite that is correlated with BC. The post menopausal woman stops making the beneficial estradiol in sufficient amounts and the primary estrogen becomes estrone.
I suggest you find a few good books on the subject and read them, the popular press has really not reported the important details in these studies,meaning HRT is not bad, excessive dosing and certain types of delivery systems are more apt to cause problems than others.
Sammi

kstearns
07-10-2007, 02:17 AM
Dear Sammi, I read Vliet's book some years ago actually--need to look at it again.

I will call the NP today and ask for a pres. for a natural estrogen.

And I am following up on getting a new gyn.

Patience will be a virtue as I wait to see if the estrogen is going to help the bladder condition.

What I find amazing is that a young recommended uro last fall -- who examined me -- and with whom I had several appts. including a cysto -- did not say "wait a minute here. Maybe the issue is something altogether different.

NP just called. Swabs were all negative for any infections.

She confirmed what she had said last week about the visual appearance of the vagina.

What are the hormone tests I should ask for when I see a gyno?

Specifically? Can you tell me?

Sammi and all of you--thank you! I am optimistic in ways I have not been since the problem began to intensify in the fall of '06.

Karen

P.S. NP didn't know about the bioidentical estrogens. I need to get that prescription from a gyno right?

sami4
07-10-2007, 05:03 PM
As I stated in the previous post; bio identical estrogens do not have to be compounded, then can be, but there are many on the market in various forms such as Vivelle dot patch, Estrace oral pill or Estrace vaginal cream, there are others, any pharmacist or drug book will list many. Generic Estradiol is bio identical. Anyone who can write a RX can RX one form of them for you, and you can get the RX at your local drug store. You do not need a compounded bio identical product to get a bio identical estradiol.
Not all doctors are sharp on all subjects. If you are a Uro, then you see complaints in the context of urology. Most Uro's treat a lot of male UT problems, and see females for mostly Cystitis. Not all Gyno's are sharp on hormones or pelvic floor and vulvadynia. Remember, if you have been taught how to make things better with a hammer, then everything you see looks like a nail. You just have to shop until you find a good one? I went through 5 Gyno's and three Uro's. I found the best doc for IC was actually the Gyno's office who is set up to screen for IC. They do instills and a very good job of RX pain pills and getting anyone with UT symptoms in immediately.
I finally did find a good Uro, and the first thing he did was a pelvic to determine just what was going on up there that might effect my symptoms? I also have a terrific Vulvar specialist who really put me on the right track when I was having chronic yeast infections and what I thought was pain in the urethra and bladder. Turned out I had a pelvic floor disfunction and physical therapy cleared it all up.
After my Hyster in March I developed atrophic vaginitis thanks to the stupid Doc who did the surgery. At least she didnt leave her watch in my incision, but she was really hormone dumb. A good surgeon, but not a good gynecologist. My VV specialist gave me the vaginal Estrace RX and today I saw her and the AV is reversed and the cells are looking good, PH is correct, and everthing looking healthy. She also RX me my old favorite RX for Estradiol gel that is higher in dose than what is usual. It works for me.
Keep trying, you will be amazed at what a little vaginal estrogen can do, dont expect it to work yesterday, it takes a month or more. When you see your Doc again you might ask for a serum estradiol test, get the number and write it down some place so you can compare over time with various symptoms.
I can tell my serum estradiol number by vulvar symptoms, really I can!
Since you dont take any systemic estrogen your level will be very low, but if you can live with that, people do what works for them.
If you dont understand the numbers, send me a private message and I will interpret it for you.

anglico2024
12-15-2007, 01:33 PM
:help: Greetings ladies.....My mothers usning Premarin Cream right now and I've never seen her so bad off. What can I do. I have the names of doctors in California and God I'm trying to help her out. Thank you I got rid of my medical problems. Now it's all about my mom.

wolfaleena
01-02-2008, 12:27 AM
my IC symptoms have defientley worsened since menopause. I use estrace cream for dryness.. I don't have menopause symptoms, but my IC is very severe.. Wondering if i should be on some type of patch form hormone replacement to see if ic symptoms lessen. i wake up constantly to pee and terrible pain. bladder does not empty all the way. constant pressure subrapubic and also urethral. wondering if some hormone therapy would help>
anyone have any words of wisdom or simialr experiences.
(I will be discussing this with my doctor, but just wondering if others have had similar thanks:toilet:

anglico2024
01-15-2008, 04:39 PM
Well, finally after over four years my mother got a break after paying over $5,000.00 dollars total from her Vulvodynia. The medications called Lidocaine HCI 30mgs. I can only pray my HELLS almost over. because NOBODY cared in my family about my mothers pain except me. And I have enough pain of my own with my failed disk implants in my lower back at my L4, L5. I've had enough. I'll be posting in the chatroom all the meds my mother taking and how it's helping her? If any. Is anybody else using a cream that works? Please let me know by posting it in here. Thank you very much.




:woohoo:

yarnia
01-20-2008, 07:39 AM
so it's normal to have some flare symptoms at the start of estrogen therapy?
I just started vagifem about 6 days ago - and can tell my bladder symptoms are a little worse. But, I can also say that the first time I inserted a tablet the (very slim) applicator was painful, now it's not.

I don't really think I have IC. I suspect that my hormones have just caused all of these symptoms.

My nurse practitioner suspect this as well, but insisted on blood tests before she would even consider hormome therapy, and was pretty insistent that it be local, not systemic therapy.
I'm also on testosterone made at a local compounding pharmacy. My adrenals were very low. Any idea if that would cause any of these symptoms? (bladder pain, vestibulitis, tired old lady lol)

thanks!

sami4
01-22-2008, 05:23 PM
Yes, if your vagina is very low in estrogen it can cause some stinging and burning when first used as the nerves become estrogenized. If it continues you may need to switch from Vagifem (I found this slightly irritating) to a cream such as Estrace. If the cream still bothers you after two or three weeks then you may be sensitive to the propylene glycol in the cream base. If thats the case you need a compounded estrogen in a neutral base like olive oil.
If you have not had breast cancer I would wonder if you are menopausal why any health person would only give you vaginal estrogen? Most menopausal women need both vaginal and oral estrogen to maintain well being. I am not talking about Premarin/Provera combinations but natural estradiol which has not been shown in any study to cause cancer. If your health practitioner thinks it does, tell them to read the current studies.
Sammi

yarnia
01-23-2008, 02:00 AM
Thanks Sammi, I was hoping you'd reply.

I am in perimenopause - still have both ovaries firing most of the time. I don't have many hot flashes, or other menopausal discomforts. But, I have had bladder discomfort, vestibulitis, and obvious dryness of the vaginal tissue. It's my doc's hope that applying estrogen topically will help with those problems, without having to do oral estrogen.

I'm kind of a less is more person - so I'm good with that for now, and I can def tell a difference in the tissue after a week of therapy. It's too soon to tell if it's helping my bladder as my cystitis comes and goes.

How long does it take to get an effect on my androgen levels when using topically applied testosterone? Any idea?

sami4
01-23-2008, 01:17 PM
If you are taking testosterone as a cream; it will raise blood levels in about a week and depending on the testo strength you may feel the application almost right away. For testosterone to be effective and not cause problems in the body it is critical to have a good estrogen level. I define a good estrogen level as a minimum of 100 for a woman who is menopausal, and optimal as somewhere around 150-200. For a woman still having periods it depends on the stage of her cycle, but anything much below the 150 level will cause bladder problems, hair thinning, and depression in most women.
If you are tall and thin, you probably can get along and feel well with less estrogen, but if you are voluptuous then you probably are used to a higher estrogen level. If you are stocky with little waist you probably are more of a testosterone dominant body type. How your body shape develops is dependent on which systemic hormones are dominant in your body--this is governed by genetics.
Pubic hair loss is a sure sign of androgen deficiency, loss of hair on head is usually related to estrogen loss.
Sammi

yarnia
01-23-2008, 03:08 PM
hm...I'm a bit of an anomaly I think.

estradiol 3rd day of period - 48

dhea - 75

testosterone - 31

I already have hair loss on my head - all over but particularly top of my head and front hairline - it began some years ago and worsened quite a bit after having a baby 6 years ago. Turns out my iron stores are very low - my ferritin is 22, it was only 11 - 8 months ago and had been that low for who knows how long. So, it's pretty likely that's a big factor in my hair loss. I just started taking an iron supplement tho I find the "empty stomach" twice a day thing hard to comply with.

I am shortish, a voluptuous apple, have always struggled with acne and excess hair where I don't want it lol Actually, the acne miraculously disappeared within the last 8 months for the first time in my life, other than pregnancy. I assume now it's the super low testosterone to blame for that. dangit. I have a little excess facial hair but nothing new really, and not super hard to control.

Really, I would probably seem to have PCOS but I have always had VERY regular periods, not a lot of ovary trouble, and got pregnant on the first try at 39 which is def not typ for someone with PCOS.

I nursed my dd for over 4 years, which my doc thinks may have helped along my estrogen deficiency when combined with perimenopause. I did not menstruate for oh...almost 3 years after my dd was born.

Will the vagifems raise levels of estrogen in my blood at all?

I struggle with upper back problems and overall aches and pains - like I've been working out, but I haven't. Some days going up stairs is a real struggle. I guess it's what they call fatigue. I could lose 20 lbs. or maybe 25 if I were to be honest and optimistic.

I am only taking the testosterone in hopes of feeling better in terms of energy and possibly aches and pains. That's what I'm hoping at least.

Think I'll go to bed tonight instead up staying up late and wondering tomorrow why I feel so bad...:rolleyes:

mayray
01-23-2008, 07:53 PM
sammi, you seem to know quite a bit about hormone levels. I am going thru menopause now and have not noticed hot flashes, just depression and energy level is down. I have not had IC symptoms in 8 years and am in excellent physical shape, 5 2 105 lbs. have been thinking of trying the natural hormones. do you know anything about the vivelle dot?

mayray
01-23-2008, 08:02 PM
I did read the book about hormones that you are talking about. Oddly enough, when I got IC in 1992 it was right about the time I got diagnosed with vaginitis. I was only 36 years old and not even in peri menopause. My IC was horrendous and I was nearly bedridden for years until I discovered a combination of lifestyle changes and elavil. My IC has now been in remission for 8 years. I am also going thru menopause down to .5 mg of elavil and have no IC symptoms at all. very weird situation. seems that being in peri menopause and menopause helped my IC instead of the other way around.

sami4
01-24-2008, 05:58 PM
A testosterone range considered to be optimal is between 40-60, DHEA level under 40 is low, optimal for a female is considered 100-200. Your estrogen level is very low and should be at least 90-100. By raising only your testosterone levels you are causing a imbalance of the estrogen, androgen ratio. Vaginal estrogen only may raise blood levels if taken daily by about 1 or 2 points, insignificant.
I have used Vivelle 1 mg dot patch. I liked it, it raised my level to around 60-70 which was not enough for me to prevent vulvar, and bladder irritation. I carry a higher estrogen level that what most women would probably be comfortable with. I like my estrogen level to be 150-200 after 6-8 hours with a much higher peak. I use estrogen gel twice a day. I will have immediate vulvar irritation and bladder frequency if my levels drop under 100.
The patch has worked for some of my friends, I would have liked to wear two, but my insurance wouldnt pay for two. I also found out for me that by the last day, my levels dropped down to about 50.
Sammi

glassd18
01-25-2008, 05:15 AM
Just thought I'd chime in here. I recently was on climara Pro patch (estrogen and progesterone), but because of the issues with the progesterone irritating my IC, and the patch falling off all the time. I am now only on vivelle dot 1mg and do progesterone for 10days every three months to have a bleed. This seems to be the only way I am able to tolerate HRT. I am 42, and was prematurely menopausal at 35 so I had to take HRT, but has been difficult to find the right mix since IC. Problems all started when I switched from Prempro low dose to estrace and prometrium.

sami4
01-25-2008, 11:13 AM
Glassed:
I had the same awful reaction to natural progesterone (prometrium). For one thing I think the standard Prometrium dose is shooting a fly with a cannon, and is way too high for anyone with estrogen or bladder problems to tolerate without a lot of estrogen on board.
I had horrible vuvlar inflammations, pain, yeast--just miserable on progesterone. I finally got a Mirena IUD which is medicated with a synthetic progestin, Levonorgestel and that worked as it only put progesterone in the uterus (which was full of fibroids). The Mirena finally stopped my periods all together and shrunk the fibroids. I just took estrogen then.
Last March, I opted for a hysterectomy because I didnt want to need any progesterone, and wanted to take a higher estrogen dose than was prudent with fibroids. Fibroids love to drip, any excess estrogen will set them off.
I actually did better on progesterones that were synthetic from the testosterone family. Provera should not be taken by anyone.
Hugs,
Sammi

anglico2024
02-15-2008, 04:44 PM
Hello. I'm sorry your still suffering, but I need to know when Oprah's doing her Vulvo show? Thank you. Irene Moreno. I've spent another $1,000.00 for a cream that was expired from Dr Berman's office. Are there any honest doctors out there who might care about the suffering? Please let me know

310-215-1694

Call me collect.......Please help me

glassd18
02-16-2008, 05:39 AM
I'm back at square one. I've quit everything. I can't figure it out.

snowgirl
02-16-2008, 01:29 PM
If I remember right you were from Noblesville. Did you see the post today on Jill';s list of uros. An ICN member posted the name of her female urologys who she feels is great . She is in a big group of urologists in Noblesville. Do youwant her name and number? Vicky

glassd18
02-17-2008, 03:46 AM
Hi Vicky, Thanks for the tip. Dr. Beam is my urologist!!!! I was talking more about hormones here than my bladder although I do have a very stubborn case of IC because I do not tolerate many alternatives or chemicals so it's hard to prescribe for me. I'm seeing her on Feb 25th to go over things again. I also recommended her through the form that the ICN provided.

enip41
03-01-2008, 02:20 PM
I am trying bioidentical hormones in olive oil taken transdermally. The estrogen gets rubbed in over a vein and progesterone gets rubbed in on the inside of my upper arm. Starting with small doses. Eventually I think they add testosterone too.

yarnia
08-03-2008, 01:48 PM
reviving this old thread. In Jan I started Vagifem tablets which after a couple of months appear to have cured my bladder/pelvic pain problems. I have had no pain - just some slight frequency when I overdo the caffeine/sugar. So I'm good with the bladder issues. I still have some vestibulitis - esp lately with my recent hormone shift.

My gyno prescribed compounded testosterone at the same time in jan - and I do feel better, or did for a while.

I went to my reg doc (not gyno) to complain about chronic back pain, fuzzy thinking, memory loss and trouble sleeping.

We agreed that I needed to go back on clonazapam to help with my restless legs. - that's working great.

He checked my FSH and tho I don't have the numbers he said it was consistent with menopause.
I am having some hot flashes - nothing I can't stand but the fuzzy thinking/stiffness/and overall depression is hard to deal with so I want to have hormone therapy.

He prescribed prempro 0.3mg/1.5mg
I hesitate to take it as I am not sure he gets the whole bladder problem, didn't even consider any sort of adrenal support, and made no mention of factoring in my testosterone supplement. Also, I have adenomyosis tho mine is largely without symptoms, unless I'm having some pretty vigorous sex lol
I've read that neurotransmitter problems can cause all this as well -so what to think??

I would like to hear opinions if bioidentical hormones are a better choice than the prempro. Should I insist on something from a compounding pharmacy?

My mother and my grandmother did not use HRT. They did not age well at all. My aunt had a hysterectomy in her 40s and just weaned off the hormones in her late 60s. She is in great shape. Well, she's fat but she feels good. so I figure if it's a crapshoot I'd just as soon go the way of my aunt and try the hormones.

There is no history of breast cancer in my family. Yet.

I have a history of high prolactin if that matters. A history of acne my entire adult life until the last year or so.

Flowerchild
08-08-2008, 04:39 AM
Sammi,

You are the first on the forum that I have found who mentioned being sensitive to propylene glycol. I'm very sensitive to it and cannot take many medications externally or internally because of this. It seriously flares my bladder and burns and causes itching externally. I am seeing a new gyn nxt week to see about a compounding oral & external estrogen.

sami4
08-16-2008, 04:49 AM
Glad you are shopping for a Gyn that will listen to you. I had to go through about 5 of them when I first moved to Phoenix. Its pretty easy to see where a Gyn is coming from; it seems to be either the teeny tiny school of estrogen replacement or the "if it feels good do it" bunch. Truth is what works for your bladder, vulva, and health. I usually opt for the feels good crowd and then just titrate my own based on serum tests and how I feel. One thing I think is crucial for bladder and vaginal health is vaginal and topical estrogen applied at least twice a week around vulva and inside vagina. I have read many studies that have stated that many women even with a good serum level dont get enough estrogen inside their body to promote bladder and vaginal health--you need both.
Sammi

Angeles
08-17-2008, 07:10 AM
Per my doctor compounded estrogen cream may not deliver the same amouns...(?!) so better to go with a relaible rx brand ...off course, if you don't have a reaction to the inactive ingredients!
....if you are going to have it compounded please do it at a very reliable compounding pharmacy that has done it several times, etc.

I always wanted to know : what BASE do the compounding pharmacy use to compound estrogen?

Vicki
08-17-2008, 02:50 PM
Different pharmacies use different bases. All the pharmacies I have found here in Arkansas use a soy-derived estrogen which is what I am assuming you mean when you refer to a base. I do not respond well to soy estrogens. I use the vivelle dot patch which is a yam derived product. I am needing testosterone and tried the soy derived. Once again, I have issues with soy. It irritates the varicose veins that I have on one leg, believe it or not. So, I ended up calling Belmar pharmacy in Denver to speak with the pharmacist. She said they use only yams to derive their estrogen and testosterone from. I am currently waiting on my first batch of Yam-derived testosterone to arrive. I am so excited. I really hope this is the answer that I have been looking for. -vicki

Angeles
08-18-2008, 12:13 PM
That's interesting information. Thank you! I knew soy had to do with estrogen but my question was really referring to the compounded estrogen "creams" and by "base" I was referring to the inactive ingredient, i.e petroleum jelly, I don't know what is the most effective less irritant base.

I don't know if above you are referring to compunded estrogen topical cream (to apply directly in the vagina, vulva) or if you are refering to another type of compunded estrogen to take it orally, patch or injections. (I'm not familiarized with those)

tzatke
08-18-2008, 12:43 PM
I was diagnosed with i.c. when I was thirty four. Forty yrs ago when it was impossible to get a dx. I also had severe vaginal symptoms in the whole area under the bladder wall and urethra but this was the dark ages when urologists insisted ONLY the bladder was involved. It took years of what was then considered unusual treatment and also as I became perimenopausal my symptoms got better. With menopause they were easily controlled. Early this July the vaginal symptoms returned but not the severe frequency and urgency. I saw my gyno who saw multiple inflammatory cells and some immature cells typical of menopause. He prescribed a low dose steroid cream (Proctofoam) and premarin. He said I'd have no systemic reaction from the premarin. After ten days of premarin my breasts became extremely tender and feeling heavy. I had this problem all my life since menstruating and when on the pill. He told me to cut back to twice a week. I see him tomorrow. When I first got i.c. he was the only doc who didn't abandon me. I'd seen thirty four. The vaginal and urethral symptoms are IDENTICAL to those I had at thrity four when I was naturally loaded with estrogen. I did not go on HRT-docs were really pushing it at the time because I finally was doing better with the i.c. I'm trying to get an appt with a urogyn who has a pt who does pelvic floor work because we've always known this is a problem. Diazepam and gabapentin are the meds which really helped me. Why would an estrogen cream help now when estrogen was identified as the culprit. I've been out of the loop for ten years and have been readng furiously. And why did my breasts respond so quickly to the cream?

Angeles
08-18-2008, 01:00 PM
To the above comment: "And why did my breasts respond so quickly to the cream?"

If you are using the full dosage of estrogen (premarin in this case) it will have a systemic reaction as it could have any of the possible side effects listed in teh pamplet.
For those using only a tiny amount on the vulvar area, it is less likely that it'll affect it sytemically. My understanding is that the vaginal tissues are very sensitiy to estrogen (and many other things they can absorve, for example, I was reading in a book about vulvodynia that you can get "a caffeine high" if you apply a tea bag in your vulva - treatment that is supposed to be soothing to vulvodynia patients)

tzatke
08-18-2008, 01:34 PM
I was using less than 1 gram-considered a tiny amount in vulvar and vaginal area. My gyn said this is the lowest amt he prescribes. He'll give me the answer tomorrow. My breasts have always been acutely sensitive to the normal estrogen in my body. It took menopause to get rid of this. I'd put up with it but he seemed alarmed.

Angeles
08-18-2008, 03:27 PM
yes, that's a small amount....Premarin contains conjugated estrogens (each gram contains 0.625 mg conjugated estrogens)...perhaps you can discusse with your doctor using Estrace instead of Premarin or a compounded one????

****Do always a spot test first if you end up trying a new one. That can save you of an unnecessary flare******
I hope all goes well.

tzatke
08-19-2008, 02:44 PM
Gyn said my breasts are acutely sensitive to estrogen. It started when I was fourteen. He only wants me to use the cream a few more weeks and feels that any estrogen in any form will affect my breasts and feels this is a dangerous symptom for me.

sarzp
10-01-2012, 07:49 PM
I have atrophic vaginitis and am searching for the right base for my estradiol/testosterone vaginal treatment. I have tried cream, methyl cellulose and petroleum jelly and they all sent shooting pains up my urethra. I could never get through more than a couple of days. Each time it took 2 or 3 days after discontinuance for the pain to subside. Does anyone have any recommendations? Should I just grin and bear it and try and get through a couple of weeks?

enip41
10-02-2012, 12:36 PM
I now use Estriol .25% compounded in non extra virgin olive oil. I take .5ml vaginally twice a day. I also take Progesterone .4% also compounded in olive oil transdermally on an area with fat such as thigh. I do this 3 times a day and I use Testosterone also in olive oil transdermally at top of leg before bed. I have all forms of Estrogen and this has been the one that I can use. I get my hormon levels tested twice a year. It took some tinkering to get the kind and dose right. Good luck. I do believe in this. I also recently read that for vaginal issues it is helpful to take Valtrex. I have taken it for a long time.

sarzp
10-02-2012, 12:49 PM
Thank you! I will give the olive oil a try! I have never heard of Valtrex for this use before but it makes sense. My bladder seems to love estrogen and hate progesterone (unless I have enough estrogen in my system to balance it out). I just recently started on the estrogel plus a small amount of cyclical progesterone for the first seven days of the month to produce my periods and protect my uterus. Even though I'm supplementing with four measures a day of the estrogel for the last three weeks my estrogen serum levels are still at the very low end of the range. I hope it won't take too long for them to go up and stay up so I can heal.

enip41
10-02-2012, 01:05 PM
Are you using bioidentical hormones? I think it's necessary with autoimmune. I get periods on hormones too. My doc thinks I'm super estrogen sensitive. It is a balancing act. I really think worth it though.

sarzp
10-02-2012, 01:21 PM
Yes, I'm using Estrogel which is a bioidentical, transdermal gel you put on your arms. I haven't reached menopause yet (I'm 36) but my hormones are all out of whack and before I came off the birth control pill a month ago I hadn't had a proper period in a year. My body essentially stopped producing enough of its own estrogen and the birth control I was on (loestrin) only provided the very minimum amount. I'm certain that my bladder and vulvar problems which started about four months ago are hormone related. I'm already beginning to experience some relief. Right now I'm testing my hormones every ten days so I can compare with my symptom journal - so far bad days pretty much match low estrogen days. It's just going to be a matter of keeping my estrogen levels up high enough. Have you found that managing your hormones helps with your IC?

enip41
10-03-2012, 08:23 AM
I think hormones are curcial for this. I go to a doc that is mentioned in Suzanne Sommers books. She treats people from all over. I went to an IC presentation where there was a compounding pharmicist and he was also a biophysicist. He said re IC that hormones are what controls IC and if you go off , the symptoms come back. I feel hormones, diet, Elmiron are key to managing my IC, IBS etc.

sarzp
11-27-2012, 07:53 AM
Could you possibly give me the name of the doctor you see from Suzanne Sommers' books? Thank you.

enip41
11-27-2012, 09:14 AM
Could you possibly give me the name of the doctor you see from Suzanne Sommers' books? Thank you.

Her name is Maureen Pellitier. She is with LaValle Metabollic Health Institute in Cincinnati OH. The phone is 513 924-5300. She also delivers babies at St. Elizabeths so she isn't at LaValle every day. Some find her personality a bit abrasive but she is brilliant.