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  1. #1
    ICN Member
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    Testosterone for ic

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    i have had problems with my bladder since i was 4. i have had elmiron,instills, PT, all the usual stuff. then, i got breast cancer. i've had anxiety, depression. all illnesses that can be linked to ESRTOGEN DOMINANCE. there is estrogen is
    packaging, products, food, scented items, virtually everywhere.

    my ovaries were destroyed by the chemo. i had no sexual functioning. i went to a doctor in centerville, ohio who does bio-hormones. hormones make up our entire system, esp. brain chemistry.

    she prescribed a testosterone pellet mixed with arimidex to stop the test from aromatizing into too much estrogen.

    yes, testosterone makes women horny. it works. i have arousal and lubrication. i am calmer as well and do not want to eat junk.

    i also have NO MORE BLADDER PAIN. after about 2 1/2 weeks. doctors are really funny about giving women testosterone, but we make it in our ovaries and adrenal glands.

    if you look at ic and testosterone, there are articles about estrogen dominance. everything i've suffered from is a "female" disease.

    i can't believe i may have had a hormone imbalance my entire life. my bladder (and eyes) were so dry, they hurt - even before the chemo. when i had painful periods, which are linked to estrogen dominance, i was given BC pills. more estrogen. when i discovered the cancer in my breast, no doctor seemed terribly concerned. i was on BC pills for 8 yrs.with breast cancer.

    it's the most amazing thing i've ever imagined. i have nothing to plug. i've suffered from this evil plague since i was a child. i started having horrible pain when i was 42. i'm almost 48.

    now that my body is balanced, my bladder has quieted. i can even have a bowel movement without hrs. of spasms and pain. sometimes, i could not go to a movie because i couldn't sit still. i couldn't eat in a restaurant because i couldn't sit still. my urethra hurt all the time. it's gone, now.

    i hope someone else tries this. it's like a weight has been lifted. i talked to my onc. surgeon and an endocrinologist before pursuing this treatment. i didn't do it for my bladder. it's not a placebo effect. i did it to have a libido again. as a bi-product, my BLADDER STOPPED HURTING.

    also, i did not use a cream. it's in a pellet so it's distributed evenly throughout my system. if anyone wants to ask me about it, i will check my email for alerts.

  2. #2
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    I started on a compounded vaginal estriol cream about 1 week ago and have already noticed a difference in urethral and bladder irritation for the better. The compounding pharmacy mentioned possibly adding a small amount of testosterone to the compound. I was curious as to how you could be estrogen dominant if your ovaries are now non functioning? Was adding the testosterone to prevent you from becoming estrogen dominant again? The reason I'm asking is that I have been debating on whether I should add the testosterone or not, because at one time (before menopause) I was also estrogen dominant and am wondering if just adding the estriol could possibly have that happen again.

  3. #3
    Support Volunteer sailawaygrl's Avatar
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    I think that hormones do play a role in bladder problems for many, like those that have flares during their periods. I am glad that you found a solution for you and it's good that you are being monitored by a Dr with this too. I have always had the opposite problem, I have PCOS and my body tends to produce more androgens and testosterone. I take BC pills to balance my body and my hormones. I just wanted to share this, for some it can be the opposite. I know a large part of my IC pain is from nerve related probems.

    I am glad you have found something that helps you.

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

  4. #4
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    Thumbs up testosteron for ic

    i meant i was estrogen dominant before the chemo. since i was a child, maybe. doctors are strangely ignorant of hormones. go for the testosterone if you like. see if it ameliorates the problem. anything to help alleviate the evil dreaded ic. good for you for thinking outside the parameter.

    we need smthg besides elmiron, which only helps some people, causes gastro upset, and instills, which are temporary and painful.

    i'm glad you see some relief. i hope you see more. i feel even better today. i can deal with sex bothering me some and not every day being perfect, but i was tired of being incapacitated. a miserable life is not the life i want to be saddled with.

    i hope more docs look into hormones as a possible cause and cure for ic. i know gynos who use cremes for drying and urinary problems. why not for ic?

    feel better. let me know what transpires.

  5. #5
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    Smile Pcos

    My surgical oncologist has PCOS. She is on Metformin. There is a doctor called Dr. Charles Glueck in Cincinnati who has done a lot of research on PCOS and Metformin. He is the one I went to to get a "blessing" to try the testosterone pellet. Just thought I'd mention the Metformin. Also, all hormones are a balancing act. Cholesterol is a hormone, vitamin D. There are 3 types of estrogen. I just wish there were more research done in this area. What works for one can be different for another, but having hormones off-balance one way or the other is never a good thing. It seems to have a cascading effect in the negative direction.


    Thanks for replying. I wish you better health always.

  6. #6
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    Smiley face

    I meant smiles, in general. Sorry it's next to PCOS and looks like I meant PCOS was a happy thing. Didn't realize it would look goofy. I apologize.

  7. #7
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    My doctor has seen a big improvement in bladder functioning for her patients when adding the hormones, but was not quite up on individualized compounding. I did the leg work myself and found a well known compounding pharmacy specializing in hormones and who also works with suppositories and transdermal creams for bladder pain. You really have to be proactive with this condition and do a lot of research yourself unfortunately, but it's worth it.

  8. #8
    ICN Staff ICNDonna's Avatar
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    Metformin is a diabetes medication.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  9. #9
    Support Volunteer sailawaygrl's Avatar
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    Metformin is a diabetes medication but it is also used for insulin resistance, which is what most people with PCOS have. Meaning we produce the correct amount but our bodies are unable to utilize it correctly. I don't have diabetes but metformin has been a wonder medication for me, I have been taking it for over ten years. It can help those that are over weight with PCOS lose weight because it stops your body from storing everything your eat as fat and makes it work correctly as energy. This can help some ovulate by losing the extra weight. Infertility is very common with PCOS, many find out they have it when they are trying to concieve.

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

  10. #10
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    metformin

    yes, i am aware that metformin is used for diabetes, but it is used for PCOS, as well. there is a lot of research on it. it also blocks the akt-3 pathway and reduces cell proliferation. it has been linked to being useful for cancer. it is given to children who gain lots of weight from antipsychotics.

    effexor is an antidepressant, and it is commonly used for hot flashes.

    psych. meds are used for anything from psych problems to pain to dementia.

    remeron is an antidepressant and is given to cancer patients who are losing weight because remeron tends to make people gain weight, sometimes without having to eat more.

    there are many, many off-label ways in which physicians commonly prescribe drugs.

    there are all kinds of uses (and abuses) for different meds.

    i am not being prescriptive. i was citing medical information that exists in research and in practice. i wasn't meaning to confuse or offend.

    if it's not harmful, and it's helpful, i figure, whatever works for a particular individual is great. anything to make life more liveable.

  11. #11
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    metformin

    i am glad sailawaygrl has had a good response to this med. i didn't mean to mention smthg you were already aware of.

    i'm always appreciative of docs who go beyond the typical use of a med or treatment in hopes of helping people in any way they can. sometimes, they really have to go out on a limb, against everything their colleagues are doing. i applaud the people who are trailblazers. sometimes, they are ridiculed within the medical community.

  12. #12
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    hormones

    yes, i agree with earthlady that if you want to try smthg different you have to do a lot of legwork. when i got supplies for instills, i had to call around town to see who would dispense caths, etc to patients. the doctor didn't know. the injectables came from a hosp. pharm. i had to ask the pharm. how to work with the needle because my physician wasn't really helpful.

    when i pursued the hormone angle, i had to read and read and read. i talked to a physician acquaintance. i talked to a gyno. i spent many late nights looking at studies and published articles on-line. i took them into several docs to get opinions. it really is a long journey to try to heal from anything.

    i never take what someone says at face value. i am surprised at how spoon-fed some physicians are. i've had good luck with ones that enjoy doing research and work at or near a teaching facility.

    i've found the person in life who most cares about the quality of your life is you!

    take care all.

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