10-13-2008, 05:17 PM #1
Hormones as a Causal Agent of IC??
[I am starting this new thread, with a new question, by copying a post I made in another thread regarding a comment made by JennaS]
"My opinion is that my hormones and artificial hormones play a huge part in this."
You may be on to something here.
Unlike many women on this forum, I don't have menstrual problems that further aggravate my IC; I haven't had a menstrual period since I was 25 years old after a partial hysterectomy in 1985. However, in 2002 I did have my one remaining ovary removed, and since then I have been in hard-core surgical menopause. I have been through the whole gambit of HRT options, finally concluding that the Estradiol trans-dermal patch works best for me, which I have been using continuously for 5 years.
With that said, when my IC symptoms first started I went to my GYN trying to find out what was causing such extreme pain (at first I thought it was a really bad yeast infection but that was negative). One of the many tests she ran was an FSH blood test to determine the status of my hormonal levels. When the results came back, she asked me if I was "trying to be a medical mystery, or what?" lol
The way I understand FSH, is that menopausal women have a very high level of FSH, and pre-menopausal women have a very low level. Because I do not have any female organs, I am in full menopause, and therefore my level should be very high. Well--she was totally astonished; my FSH level was practically "non-existent" it was so low!
Note: She gave me Estradiol vaginal cream that I used for a month, but it didn't help my symptoms at all--the pain was just getting worse every day.
Now, what that has to do with all of this IC business, I have no idea. But in looking for a causal agent for my sudden onset of IC, it may well have something to do with my hormone levels.
FSH [follicle-stimulating hormone] is a hormone secreted by the pituitary gland in our brains. Apparently, my brain (pituitary gland in particular) thinks I still have ovaries -- so maybe my brain is also confused about the needs of my bladder as well. [Hey, maybe it is "all in my head" after all...er "my brain" that is!!]
All kidding aside, I don't want to leave the impression that I know what the heck I am talking about here......except to say that any and all clues should be examined if at all possible. Since primarily women have this disease, it stands to reason that it has something to do with "being a woman". For men that have IC, perhaps it is a type of hormonal imbalance as well.
Anyone have any thoughts on this?
~BethI am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.
Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009
Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD
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