Does anyone have flares before menustration?

[doodlebugsmom]

I have had flares the week before my period for the last 2 months. I take Loestrin Fe for my period, but is there something better? My OB/GYN is not real skilled with IC patients and is not sure if it is the right one for me or not. I am in between uro and uro/gyn and don't have an appt. till April 13th. Any response is appreciated for help.

[EmilyAnne]

Hi,

My pain has always gotten much more severe a few days before menustration and during ovulation. They thought it was endometriosis for a long time because of this. I looked it up after I got diagnosed with IC and found out that for a lot of women it can get a lot more severe before their period, even if they've been following the diet and everything else.

This is what I found helpful...
"Many of my patients complain that just before the onset of their period they suffer from a flare up of the IC symptoms which include frequency, urgency, urethral and suprapubic pain. Despite having good control throughout the month, they can find that for a few days preceding their period, their symptoms become a lot more severe. I am not sure as to the cause of this but suspect that it may be due to the change in levels of progesterone which occur just before the onset of the bleeding. Some patients have found that taking some form of oral therapy in the run up to their period or using analgesics or agents to reduce the frequency, such as Oxybutinin and Toltoridine, can help with this problem.

Mr Henry Lewi FRCS "

- http://www.cobfoundation.org/IC/ICFAQ.html#6

"Hormonal imbalance has been speculated as a possible cause of IC. Whether IC is, or is not caused by a hormonal imbalance in some patients, hormones certainly affect IC symptoms during the monthly menstrual cycle, during pregnancy, and during perimenopause and menopause...

There is no set pattern for symptoms in IC patients. There are patients who experience an increase in swelling, pressure, pain, and frequency when estrogen levels are highest. This is believed to happen because estrogen increases mast cell secretion, therefore increasing inflammatory reactions. There are patients who feel better when their estrogen levels are high. Experts believe that IC patients may benefit from the increase in the thickness of the bladder lining and the lack of progesterone during this time.

Some IC patients say they feel best and experience less symptoms during their menstrual period when hormone levels are low. However, other patients experience bladder pain during their periods, and almost all IC patients complain of IC symptoms a few days prior to the onset of bleeding. A number of IC patients also report pain just after a period and/or around ovulation. Experts may disagree about the effects hormones have on the IC bladder, but what they consistently agree upon is that the bladders of IC patients react to the rise and fall of hormone levels."

- http://www.ic-network.com/iclifestyles/march02.html

I think that as we continue taking medicine and find out what works for us, it can start to get more under control... I hope!

I'm sorry I can't be much more help than that, I just got diagnosed as well. If I find out anything else, I'll let you know! I definitely understand what you're going through!

[doodlebugsmom]

Thanks for your help Emilyanne. As a nurse, I had NEVER even heard of IC until I was diagnosed. I know nothing about it and have researched everything I can find. I found this network of friends helps so much. No one can tell how we feel except us. I am now on a mission to educate other nurses. I am amazed at how many of them have never heard of it either. In 15 years, I had never had one patient that was diagnosed with this. So glad to have this support!

[Jocotter]

Thankfully I had a hysterectomy years ago. It took me years to be diagnosed with IC until I happened to get a Dr on call who knew what it was. Since then, I've had two friends get it and their doctors couldn't figure it out. I told them about IC and they went to a urologist and that's what they had. The word definately needs to get out in the medical community.

[EmilyAnne]

It seems like its a pretty common trend among people with IC to have to go through years of pain with no answers. The same thing happened to me. I've had pain since I was 12 and first got my period and then it got really bad 5 years ago when I started college. I went through 4 different doctors, 5 different birth control pills, multiple cat scans/ultrasounds, and 3 surgeries before they finally figured out what was wrong. Even though this isn't a 'rare' disease, hardly anyone knows about it! I think it's great that you're letting your fellow nurses know and everyone else. My dad is director of the pharmacy at a hospital and had never heard of this until a few months before I was diagnosed. We just need to keep making people aware!

I'm so glad I found this site as well, because it's so true that no one can really understand our pain except for someone else whose going through it. I'm glad we're able to talk on here!

[endogirl2]

I have endometriosis and during my period I just have the worst time passing urine. I have to push so hard I feel like I'm going to bust a vein in my head! I have to stop, get a breath and push and this goes on about 5x to pass 1 pee. The stream is weak and it's horrible. Has anyone gone thru this before and what have you taken for it?

[musiclover]

Oh yeah. When my symptoms were really bad, I had the most horrendous flares before my period. I think it's the increase in progesterone. I mean it would pretty much render me incapacitated, that's how bad it was. I went on continuous birth control - Alesse it was called. I didn't have a period except every few months and that was a life saver. I stopped taking the Alesse now a few months ago and have only had one period now. My body is all confused from the continuous birth control.

[endogirl2]

Music - I'm curious if you had the same peeing problem as I posted, the major trouble getting the pee out. I'm on day 3 of my period and this moring it was horrible again. I'm really thinking of going back in the pill again, we really wanted to get pregnant but this is taking too much of a toll on me. Can I ask why you went on the pill and why you are off of it now?

When I went off the BCP I was told I had ovarian failure, had hot flashes etc and my FSH level was thru the roof. It took about 5 mths for my period to come back and the last time I was checked, my FSH was back to a normal level.

[Jocotter]

Like I said before, I had a hysterectomy. However, I have that same peeing problem when I'm having a flare. It's so frustrating! I can gain two or three pounds in a day, just cause it's so difficult to pee.

[endogirl2]

If you don't mind it sounds like you are still having problems peeing? Is there anything you are taking for it that makes it easy to pee? I am seeing a pelvic pain specialist tomorrow, he knows alot about IC, pelvic floor disorder, endo etc so I'm hopeful that he can help me.

[doodlebugsmom]

Endogirl- Good luck with your specialist tommorow. I am on my 3rd specialist next Wednesday. I also have trouble peeing during those times. I was daignosed with PFD also from the first Uro (started me on PT and muscle relaxers) which did help. The second Uro took me off the muscle relaxers and I can tell a big difference in the inability to urinate during flares now.

[musiclover]

Endogirl, yes I used to have problems like that, where I couldn't pee or I could only get a little out. It got better, though. Maybe because I had several months of pelvic floor physical therapy. I think also because my symptoms aren't as bad as they used to be thanks to the meds, diet, etc. So when I flare it's not as bad so my urethra doesn't close up like that any more. I know how terrible that can be. I think PT is necessary if you have that problem. I'm telling you, the crystal wand is the way to go when you have pelvic floor issues. But you have to know how to use it. My PT showed me how and after doing that every day for a few weeks my pelvic floor was so much better. It's a little weird to use it at first but you get used to it and it becomes just another daily routine like brushing your teeth. And I don't use it any more now that the muscles function normally.

[Jocotter]

What is a crystal wand? The medicine that used to help with that was Pyridium Plus, but I guess they don't make it anymore. So my doctor changed me to Proced and it works OK. Not great, but OK.

[icchica]

Hi all, I to had major flare ups with my IC during my cycle. My gyn has completley stoped my cycle now which has spared me from them as I would get in so much pain that it literally felt like my body was going into shock. I take Seasonique for birth control continuously to not get a period. I am also on Elmiron along with lidoderm patches (for severe back pain) an percocet (for sever cramps/back pain & bladder pain). Just seems like it is never going to end. In Feb I had a laparoscopy along with a cystoscopy w/hysdrodistention of which they discovered that my bladder was not holding enough and a very small cyst on my uterus of which I also get on my ovaries. My gyn wanted to remove it but was not sure becuase I guess the uterus if very hard to stop bleeding once it starts. Although I am on a very strong BC pill I still have spotting/severe cramps. I also follow the diet as I am desperate to get control of my life and get it back. I have been to numerous doctors but am thinking about trying to find a gyn/uro who specializes in these conditions. My gyn has been the one to prescribe the percocet however they dont want to fill them anymore becuase they dont want me to get addicted. Now none of my docs will fill them but I need them to get through the day from the pain for the time being. I pray for all of us and hope that we can get answers and overcome this condition and if I do get answers/suggestions I will let you guys now as I would love to help anyone that I can going through this.

[Jocotter]

I don't think people understand the debilitating nature of chronic pain. I pray for all of us.