IC, Fibro Poss Lupus Heavy bleeding

I am so comfused as what to do. The more I research and talk to people the more undecided I get.

I have interstitial cystitis, fibromyalgia, recent bout of vasculitis, being tested again for lupus (again) and heavy periods that are just getting longer and longer. I am 45 and have had extended periods 10 days on 14 days off since I was 28. About 36-48 hours of that are so heavy I wear a tampon and pad and still change every hour or hour and a half even through the night. Last year I had 7 periods between Jan 1 and May 1. Things settled a little with progesterone pills but it sent me into an IC flare. This year my periods have just gotten longer to the point I used progesterone again after I hit 19 days on a period. It stopped for the 10 days I was on it and began lighter the day I went of it. This bleeding has now continued for 14 days. The progesterone once again aggravated my bladder and even gave me problems with incontinence at the 10 mg dose so we cut it to 5.

I went to the ob/gyn Monday. We discussed options. I would like to avoid a hysterectomy as I am afraid of losing my bladder support or it prolapsing afterwards as I am a PTA and lift 100-150 pounds frequently at my job. Ablation is out because of possible adenomyosis. I was taken off the pill at 20 due to high BP and was told not to take them again especially after severe pre-eclampsia/HELLP syndrome. My HBP has been controlled by medication for years. I also am hypothyroid and on meds for it too. My latest bout with vasculitis and progesterone aggravating my bladder also add to the list of reasons not to try the mini pill.

The OB/GYN did say we could try the Mirena IUC as the progesterone is local. I am considering it but have concerns with it having systemic side effects (I had bladder instillations of DMSO, kept in the bladder less then an hour each time and gained 4 pounds with each instillation-something no one else had experienced). I have gained weight with the DMSO, 30 pounds in a month when my thyroid went bonkers, and a few more before my sleep apnea was diagnosed. I cannot afford to gain weight. My other concerns are with migraines as I have monthly hormonal ones and with actually feeling the IUC in place or it being expelled by my irritable uterus (I had uterine contractions from 6 weeks with all my pregnancies). I had an unplanned endometrial biopsy Monday and can still feel exactly where they took the biopsy.

Anybody with any ideas or experiences with any of my conditions and the Mirena IUC. Any other suggestions?

Hi (((ICPrincess))) I'm sorry you are having to deal with so much. I don't have any experience with IC and haven't used the Mirena coil but might have a suggestion for you.

First, you mentioned using different types of progesterone. Was any of it natural progesterone, or was it all synthetic progestins? There is quite a difference in terms of side effects.

Also, has your DR considered having you try progesterone vaginal suppositories? I had to use them once for a while for a different reason, and they worked very well for me. They were made by a local compounding pharmacy, covered by my insurance and easy to use. I just inserted one every night before I went to bed; they dissolved and released the natural progesterone into the vaginal walls while I slept. The only downside was I had to wear a panty liner because there was a little bit of residue that would leak out the next day, but it wasn't bad at all.

I hope this helps. Good luck with whatever you decide to do.

s,
-Linda

Sorry you are going thru so much. I just wanted to let you know my Mother had interstitial cystitis and other symptoms like fibromyalgia. After years (20) of suffering it turns out they are secondary symptoms of sjogrens disease. It can be checked through a simple blood test. You may be interested in checking it out more.
Good luck to you, take care
Chris

	Quote:
Originally Posted by soraya Sorry you are going thru so much. I just wanted to let you know my Mother had interstitial cystitis and other symptoms like fibromyalgia. After years (20) of suffering it turns out they are secondary symptoms of sjogrens disease. It can be checked through a simple blood test. You may be interested in checking it out more. Good luck to you, take care Chris

I see a diagnostic rheumotologist this month. I have been tested for multiple things over the years but will ask. I have had IC since I was 7. It and allergies were the beginning of my life of autoimmune problems.