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karenhutch
03-21-2006, 04:20 AM
Hi,
I am new to this forum. I have IC by MD's process of elimination with symptoms for over 10 years. I control myself in the sense that I am comfortable MOST of the time through a very strict diet and through being very careful of vitamin/drug ingestion. I also do pelvic floor exercises daily. I am perimenopausal (almost 49) and my doctor is recommending estrogen cream because the of thinning in the vaginal lining. I would like to know what/how anyone out there is successfully treating this. I tried some estriol in a compounded cream base (one night) which I was told to use with an applicator. Two days later I felt pressure in my bladder and had sensitivity, and some frequency. My doctor does not think the estriol cream caused it so I will retry in a few days. I am very curious, though, how others of you are doing with this menopausal symptom: what works/doesn't work for you. Thanks so much,
Karen

Janie Miranda
03-21-2006, 04:49 AM
Karen,
I was given Vagifem (which is a suppository - pill like insert). It has worked very well for me. I am virtually symptom free with my IC now. I think the hormones helped me a lot.

jeanmary
03-21-2006, 05:21 AM
Janie,
I am 52 and menopausal. Because my Mother had blood clots as a result of Premarin I have been very hesitant to take any homones. However, my pain is mostly urethral and at times it feels very dried out, sort of puckering for lack of a better description. I rarely have any type of hot flash and I sleep pretty well with the meds I take so I just have not pursued hormone replacement for a possible solution. Could you share with me your exact symptoms and how long the vagifem took to work? Thanks for your help!
Jean

karenhutch
03-21-2006, 05:26 AM
Janie,
Thanks for the feedback on vagifem. I will keep it in mind. I had worried about tolerating it and was trying to use estriol instead of estradiol as estrogen source. Ultimately whatever works and is reasonably safe is the best product for anyone to use. The urologist here wanted me to try elmiron and atarax. I tried atarax (10 mg.) one night and I felt horrible: increased burning, urgency, frequency, lifeless, and DRY. I still may consider elmiron in the future, but my gastroenterologist fears that with the extent of my irritable bowel I will not tolerate it. I am glad to hear that you are doing so well with your regimen. Tell me, have you been able to liberalize your diet at all with the elmiron? I would think that that would be an enormous perk.
Best Wishes, Karen

sami4
03-23-2006, 05:11 PM
my vaginal estradiol cream is Estrace and I consider one of the most important treatments for the bladder and urethra which dry all out during menopause. Estriol cream is very weak and you may need something stronger. Also if you are chemically sensitive you may need to get a cream compounded as some are allergic to some of the bases used in cream.
Sammie

Cheries
03-23-2006, 05:33 PM
I have had a lot of success with the climera patch (bioidentical).0375. My understanding is that you want to stay away from the premarin! Be careful with vagifem as it does have propolyn glycol which can intensify your symptoms. I am going to probably try adding the estrace cream as I am prone to yeast if I don't watch my diet. (I have to be careful of additives though). I recommend treating hormonal problems because of the symptomatic relief. I was absolutely MISERABLE and had horrible vulvdynia by the time I figured things out. (Also, you will find a great deal of debate over what doctors think a "low" estrogen level is!!) Get the book, "Screaming To Be Heard" by Elizabeth Vliet. I recommend it. I saw her myself.

ICNDonna
03-23-2006, 06:05 PM
When I was at the ICA convention in 2003, one of the physician speakers mentioned that the hormone creams are much easier on the body because only about 1% is actually absorbed.

Donna

Dianne
03-23-2006, 06:10 PM
I use 1 gm. of preservative free estriol cream three times/week ordered from here: http://rmpharmacy.com/ It makes sex possible, gets rid of the cracking and takes the edge off hot flashes although I still have them. I think it helps with urethral symptoms too.

karenhutch
03-25-2006, 12:22 PM
Thanks to everyone for their responses and suggestions. I had discontinued the estriol cream and then restarted it on Wednesday. For the past few days I have done OK with little symptomotology, but today, have sort of a nervy feeling deep in the vagina and my bladder feels sensitized -- no urgency/ frequency so I don't know really what it is. Has anyone had any pelvic floor symptoms from using the applicator? One thought is that my bladder/vagina are somewhat spasmed and also maybe that the applicator scrapes a nervy area when I insert it. Another thought is that an ingredient, maybe even the estrogen, is irritating me. I have a few questions to ask of those of you who are using estrogen vaginally.
1. Do you use it with an applicator or apply just a small amount with a finger? (Nurse practitioner has me using 1/2 an applicator at night for 2 weeks then 2 to 3 X weekly as needed)
2. Do those of you not on estriol but using estradiol (vagifem, estrace) also use progesterone periodically? Nurse practitioner says that the latest research shows some endometrial proliferation with the estradiol (vagifem, estrace....) and that progesterone is required twice a year for 12 days each time in non-menstruating women using estradiol. She purposely recommends estriol for the fact that it is weak and has not been implicated in reproductive system cancers. I know that I have heard that progesterone can increase IC symptoms.
3. Has anyone's IC symptoms gotten worse with estrogen? I am trying to think positively about estrogenizing myself, but I was virtually symptom free before I started using the estriol cream so don't know if I may be symptomatic as the tissue regains integrity and then improve or whether it is causing me harm.

Well, I'll put this out there and see if there is anymore feedback for me. Yes, I read Vliet's book and am very familiar with her work; I do relate to some of it and it is certainly food for thought. Thanks again, Karen

sami4
03-25-2006, 02:56 PM
If the vagina is very atrophic when estradiol cream is first introduced it may burn. This is not due to the cream but to the beginning of the skin healing. It will go away in a week or so as the tissues become enriched with estrogen.
You mentioned Dr. Vlietts book, she speaks of this in her book and encouraged the woman in question to keep using it.
Sammie

akrose
03-25-2006, 03:19 PM
When I first used the premarin cream then the estrace cream- with the applicator I was in severe pain- vulvodynia the next day, even if I put a dab of it near the urethra- burning pain. Since then -like - Cheries- I have been started on Estradiol patch 0.05mg/day- change 1/wk and this is what the urogyn stated should help with the vulvodynia pain. Plus a dab of progesterone cream to the lower abd. each day. I think with i.c. or urethral syndrome- we can't tolerate anything near or in the vaginal vault. so this is the next best option to help with menopausal symptoms.

lostpet
03-25-2006, 05:03 PM
I use the Climara patch, I like it a lot, it's absorbed through the skin, instead of going through the digestive tract, so it's more tolerable. I use Estrace when I feel dry, you can always apply Estrace cream to the perineum(area between vagina and anus), there are estrogen receptors there too. This is for people who have urethral problems and can't stand anything coming in contact with their urethra. I don't use progestrone creams, since I have had a hysterectomy, but I've heard good things about the micronized progesterone USP. Good luck!!

karenhutch
03-26-2006, 06:31 AM
I appreciate the responses, once again. I am a bit baffled at what to do, but I have discontinued the estriol cream and will talk to the nurse practitioner treating me tomorrow, hopefully. Since I was not particularly atrophic to begin with (tissues looked pretty good, but after sex a couple of months ago I got a yellowish discharge that the doctor diagnosed as an atrophic discharge and recommended treatment to strengthen the tissues), I don't really think that estrogen deficiency is causing burning and nerve pain; maybe I am incorrect, but I was symptom free (no burn, fairly normal urinary pattern) prior to starting the cream. I will talk to the NP about the patch again; since some vaginal atrophy is my only bothersome menopausal symptom at this time, I am not sure that I want to treat systemically. I will also ask about placing the estriol cream more on outer tissues and the idea of placing it on the perineal area. I am curious as to how many people have improved IC symptoms on hormonal treatment (as opposed to remaining at status quo or getting worse). I have also emailed the pharmacy that Dianne recommended to try to find out the ingredients in the base of their estriol cream. The base I have used the last few days contained 6 ingredients, one of them being butylated hydroxytoluene which I read is similar to BHA and can cause allergic reactions. Also, Dianne, do you apply the cream manually or use the applicator? I am thinking that less cream, applied manually and not so deep might be tolerated better. Thanks all, Karen

karenhutch
03-29-2006, 09:20 AM
Thanks again for responses to my post on vaginal atrophy. I am still unclear, however, how people are using vaginal creams. Do most of you apply with finger only and, if so, where? Or...are you using the applicator which results in a deep application? I think that this may have been a problem for me. I did get one suggestion to apply to the perineum. Sorry to ask people to be so graphic, but I am curious about what works best for most people. Also, I am curious if hormonal therapy has made perimenopausal and menopausal women feel better, worse, or status quo. I have been off of the estriol cream since Friday and have been virtually symptom free (out of the flare it put me in) for the past two days. -Karen

sami4
03-29-2006, 07:11 PM
Vaginal atrophy can only be treated by using the estradiol cream internally. This is done by inserting it far up into the vagina with the applicator. One gram nightly for two weeks, then 1 gram twice a week for maintenance.
Also put the cream around the perineal area and around the urethra. The amount of estrgen absorbed from the cream is very tiny, and not enough for systemic health for which you need either a pill, patch or skin absorbable cream. Just because you take oral estrogen does not mean you dont need it vaginally and you can still have vaginal atrophy unless vagina is treated directly with estradiol. Bladder and urethra have huge numbers of estrgen receptors which dry up and loose their protective coatings as we age. Its a rare menopausal woman who dont have some degree of atrophy.
Sammie
Sammie

karenhutch
03-30-2006, 03:34 AM
I appreciate the last response on vaginal atrophy. I think that I am not communicating quite well enough. I do understand how vaginal atrophy is traditionally treated -- using the applicator and inserting the cream deep in the vagina; however, I have not tolerated this method and wonder if more superficial application might be the next best thing -- I do know that some women with IC do not tolerate vaginal estrogen and am wondering if there is anyone else out there in this situation and how they are getting around it. Thanks once again

sami4
03-30-2006, 03:48 PM
I am wondering what you mean when you say did not tolerate vaginal estrogen? Did it give you a bladder flare? Did it burn?
Some IC'ers are allergic to the P. glycol in Estrace and Vagifem and do well on compounded creams that are hypoallergenic.
Superficial application or labia application is very good for vulva and urethra but does nothing for internal vaginal atrophy.
You could also try estriol cream, its a very weak estradiol.
Hope you find something that works for you.
Sammie

karenhutch
03-30-2006, 04:28 PM
I appreciate your response. Per my earlier posts, it was a compounded estriol cream and the flare began as a deep nervy feeling and went into a full flare with pressure in bladder and some frequency then burn. It extended from my bladder all the way to my clitoris.