Reached that certain Age, IC revisiting, help!

[tesschron]

I was diagnosed with IC 10 years ago, at 40. 50 this year. Prozac, instillations every three months, and faithful taking of my Yasmin birth control pill lowered the instance of flareups to once a month, you guessed it, the period week. 5 years ago we tried the botox instillation, and it worked but did not hold as well as the instillations, so went back to the old regimen with one change, Detrol for Prozac, and I had complete freedom from bladder disruption. Until last fall. Since I was also sick from a variety of sinus and bronchial issues, didn't think anything of it, but after tracking for the last three months, as of today, I am back to the period week, and thinking about crying for a long time. The detrol plus pyridium controls the gotta gos, but the burning and swelling, and exhaustion are very much present. I have had the odd night sweat for 2 years during the period week, but that was the only perimenopause symptom, unless the irritability wasn't the real me...looking at the age and the symptoms, not hard to guess I am having menopause related IC changes. I need your help. Can anyone tell me if they have been here, and what worked for them? Do I need more estrogen, less estrogen, hormone replacement, what? I will be scheduling appts with my urologist and gynecologist, but would like to be armed with information first....

Thanks,
Terry

[Janie Miranda]

I can sure sympathize with you. I'm turning 50 next month and although I had intermittent IC symptoms for many years I didn't get IC that came and stayed until I became menopausal. My symptoms are in pretty good control now and this is what has helped me:
Elmiron
Hydroxyzine (an antihistimine also known as vistiril or atarax)
Vagifem (hormone replacement that are vaginal inserts)
and the very rare - occasional use of diazepam (when I have probems that contribute to retention)

I think the vagifem helped me quite a bit but it was the combination that helped the most.

Good luck to you and I hope you find something that helps soon.

[sami4]

The Estrogen question

As you ladies are finding out, low or fluctuating estrogen levels have a negative effect on the bladder. Unfortunately, most women are faced with choice between a Gyno of the teeny, tiny estrogen dose philosophy or the feel good guys that dont have a clue about serum levels and symptoms.
The bladder, urethra, brain all have estrogen receptors, estrogen is responsible for moisture and elasticity in those areas. When you have no estrogen, you have problems and will continue to have unless you have a minimum serum level of 100. Anything under that does not help with much of anything.
If you have fluctuating estrogen levels, are healthy, and dont smoke perhaps continous use birth control pills that are high estrogen such as Ovcon 35 may work for you. Things are worse around a period because estrogen levels drop and progesterone levels rise. Progesterone is a huge bladder irritant.
Try to find a gyno that will work with you to give you symptom relief and a good serum level. I had to go through about three before I found a keeper.
Sammi

[tesschron]

Sami-4, can you explain?

I appreciate your input - I was very aware that estrogen levels affected my IC, but did not realize that the low dose BC I am on would not continue to manage the IC as I start the whole menopause thing. Can you explain serum levels to me, so that I am more prepared to talk to my gynecologist?

terry

[runningshoe]

Hi, Just to chime in (Sami already heard my story), I am having my first bladder flare in 12 years. Had some blood work done and found out my estrogen is super low (little old lady low said my gyno). So I just started the patch today and I hope it will alleviate some symptoms!! So yes, I encourage you to check your hormone levels.

[Kathi]

Hi, I'm the opposite. When I went on hormones my IC got just awful. I went off them & I improved. I guess that's what makes us all different. Kathi

[runningshoe]

Kathi -
What were levels when you started hormones? What hormones did you take? Just curious. My uro agrees that fluctuating hormones are a big problem. My estrogen level was down to 10 and now I am on an estrogen patch. I hope it helps.

[sami4]

Serum levels

The minimum estradiol serum level for bladder, bone, and brain health is 100.
The optimal level is above that.
Sammi

[runningshoe]

Sami - should I shoot for 100 and see how I feel for awhile or should I let the dr get me up to 150 or so?

[sami4]

Serum levels

If you are taking a 0.1 mg Vivelle Dot patch your serum level should be around 100-120, same with 1mg oral estradiol. I was a slow absorber and could only get a 69 level from the patch. Some women have to wear 2.
Sammi