For those of you on birth control for pain

[PFDorIC]

Hi,

For those of you on birth control for pain: Can you tell me how long it took to see improvement in your pain (if you did see improvement)?

My doc is not sure if I have IC, endo, or both--and I've just started on the pill.

Thanks so much! :)

[GriffsMommy]

I had been on the same birth control pill since I was about 17 years old. My gyn who first suggested that I might have IC did not want to change my pill because she didn't want to change something that hadn't caused any problems for me for so long.
We already knew that I had endo and then we discovered that I had IC as well. We decided that I would stop taking the fake pills at the end of each back of pills and just stay on the birth control continously. The only pain relieve that I'm aware of that I received from being on the pill was the fact that being on it continously I didn't get my period which caused horrible bladder flares for me. That was a huge benefit for me as when I got my period my bladder would flare so badly that I could barely move. I hope the birth control pills give you some relief. If one of your symptoms is painful periods you might want to ask if you can get one of the pills where you only get 4 periods a year to reduce some of the period pain by reducing the periods.

[leelee88]

I take continuous birthcontrol. It only seems to help around that time of month being that it suppresses me from having my periods. I do not get the severe pain I was having. But I also have a confirmed case of endo. And my URO says that is what was causing my pain around that time of month.

But the pill started helping the first month I was on it. And I did not have a period. I wish you the best!

[Dolphjoy]

I have taken BC pills since college when I bled for 19 days straight (heavy) and then my doc insisted I no longer had a choice. I have switched from one to another and back and so forth. I also take it continuously and give myself a break every few months. Recently, I just got Lupron Depot again to see if that helps...

Hope this helps..

[PFDorIC]

Thanks! I think I might be in pain because my body still hasn't adjusted to the hormones (since I've only been on bc for three weeks).

If anyone else had to wait a month or two (or more) before they noticed improvement with birth control, please let me know! Thanks.

[Tinkerbell23]

I am on seasonique for my endo which helps ( i had to take lupron injections first) but i actually think the birth control causes me to have IC flare ups, its a mean cycle!!!! but good luck and feel better!!!

[PFDorIC]

Thanks! I was on Depo Provera for three months--best three months I've had--BUT it made me gain ten pounds, so I quit (it's the only birth control that has been proven to cause weight gain). So I hope the bc will help, once I adjust to it--we'll see.

[Claredale]

I have been on the depo for 3 years now. I didn't need b/c since hubby had taken care of that years ago, but I always seem to flare during my ovulation time. I keep a daily journal and kept seeing the pattern, but I didn't think about how to stop it with b/c. My period was breeze compared to the time I ovulated, so I asked my gyno about it and she said that it might help. She happened to have a cousin with IC, so she knew the pain that was associated withit. Every since that shot, I have only had 2 flares. One due to a new dr trying to do an instill. I should have told him that I couldn't handle being cathed since it sent me into a flare pretty much every time....and yes it definitely reminded me what a flare felt like. The other was last Sept when I missed my August depo shot. The nurse and I both forgot. As soon as I started flaring, I started counting the months since so much had happened last summer, I just last track. I went in on the way to work and got my shot and my flare was gone within a day or 2.

[PFDorIC]

Wow thanks, this is amazing! Depo was great--just made me gain 10 pounds in 2 months (and I had previously been the same exact weight since high school--ten years ago). I might go back on it, though--weight gain or no!

[GriffsMommy]

I've never personally tried the Depot shot and won't have a need for it now that I've had my hysterectomy. However, I must say, pre-surgery, if I could have found something that would have made my flares stop all together I wouldn't care if it made me gain 20 or 30 lbs, I think I would still use it. That could also be because I feel like I'm in a constant flare and I'm already a little over weight and hubby doesn't seem to mind so for me it would be worth it for the pain relief. If it did help you, maybe ask your dr for suggestions on how to afford the weight gain. Some meds actually make you have an increase in your appetite. Sometimes just being aware of it and keeping snacks out of the house is enough to help stop the weight gain. I hope you find something that works for you whatever it is.

[crkshnks79]

TInkerbell~ I have a question for you since you use seasonique ?? When you get your periods are they extremely heavy even after being on this bc ? also do you get really strange tar like clots ? im sorry if theis is too personal and if it is I understand .. But Ive been on it for a yr and a half now and I get the strangest things come out .. well of me ( Im sorry if thats gross !!!!) But I dont know who to ask because my gyno just ignores me and It doesnt help w my crazy periods ( I do not have ENDO ) So Im trying to figure out if its just me or would it be more beneficial for me to just use something else all together ??

[Tinkerbell23]

crkshnks79, Because i have the endo i just take it continuously, so i dont get a period. Wish i could help you. If i ever get one while on this pill i will let you know. sorry. But when i did get my period before this pill i did bleed like that.

[crkshnks79]

crkshnks79, Because i have the endo i just take it continuously, so i dont get a period. Wish i could help you. If i ever get one while on this pill i will let you know. sorry. But when i did get my period before this pill i did bleed like that.

Thanks , I appreciate it !!

[PFDorIC]

Thanks! I guess my pain isn't bad enough (yet, anyway) to make me want to gain lots of weight for it. I'm also type I diabetic, and it messes with my insulin (along with my self-confidence).

Also, the depo was great for the first month--but then my period came the second month and it was bad.

All this makes me think I actually might have endo instead of (and not in addition to) IC--whenever I can get my hormones to settle, bladder pain goes away completely.

[Claredale]

It's common to get your period when you first start depo. I didn't, but my gyno told me that I could just come in and he would give me another shot to stop the bleeding. I didn't gain any weight due to depo, just when I am on my lovely Elavil, but I am past 40 now, so weight gain happens so much easier and for me, that's not a big deal. I found that when I was in pain, I had no energy to do anything, so I tended to gain weight because all I did when I wasn't at work was try to sleep or sit with my heating pad. I started avoiding any physical activity due to my pain and lack of endurance. Even playing in my lazy church volleyball league was an effort. Now I can do pretty much whatever I have the willingness to do. Which also gets harder as you get older! LOL!

Like Christine said, there are ways to build up your metabolism. Now that I am back to walking, I have lost 5 pounds in almost 2 weeks...I am also off Elavil for now. We will see why my doctor says on Friday when I have my next appt. I understand not wanting to gain weight if you don't have too. I certainly didn't need the depo shot for anything but pain relief, since my husband took care of that 19 years ago. I debated on it only because when I was on birth control pills prior to my hubby's surgery, it effected my Eczema, so I could only take the lowest dosage bc, which I ended up getting pregnant with my 2nd son. I was also taking antibiotics, which back then, they didn't know that it was important to use other birth control. LOL! But, I am so grateful that the depo shot has made the huge change it has. And it hasn't caused any problems as far as flaring my Eczema which I was so grateful!

I could pretty much tell you the days I would not be able to function in advance because my body clock was so accurate. If I knew there was a weekend getaway coming up, I would check the calendar to see if I would be able to participate. Now I don't have to check the calendar anymore! I could tell a difference the very first month after starting my shots. I do have to have bone scans done every year or so, but so far, the tech that does my scans said that my bones are that of a person in their 20s, plus I was an inch taller than I thought I was for years! Too bad my bladder looks like someone in their 80s.

T83

[megalicious]

I've been on various types of birth control for the past 8 years. I don't know how birth control will affect IC pain, but I do know it helps when it comes to endo.

I started a new pill called Lybrel a month ago, and I am hoping it helps some of the pain I know has to be related to endo. This pill is supposed to keep me from having a period, and my dr said that this will keep the endometriosis from spreading.

In my experience, it's always taken my body a few months to adjust to a new pill. I know that when you're in pain, "toughing it out" for those few months seems impossible.

I hope this pill can help me more. I've had endo removed from the outside of my ballder... so that plus IC makes it unbearable sometimes. I'm wanting to see more improvement over these next few months.

I hope you start feeling better, too!

[Claredale]

Birth control also controls my hormone levels, which increase when I would ovulate. Now that I don't ovulate, my hormones no longer trigger the pain it used to. My regular gyno has a cousin with IC. I started seeing her after my former gyno retired. I never really even thought about asking about depo until a friend of mine (older than me) started on it because she was having such a hard time with long periods, so her doctor had her try the depo. When I went to my prior gyno, he wasn't keen on me going on it since I was already taking so many meds. I very seldom went to him since my doctor that was a pelvic pain specialist did my yearly exams, etc. One of my friends started using this new group that opened a practice about a mile from my house, so I thought I would give them a try. The NP that I saw, has a cousin with IC and she told me that she started getting the depo shot to help with pain control.

Meglicious, when my IC was first diagnosed in my early 20s, I didn't have any pain issues that I could relate to my period since at first my pain level wasn't too bad, plus I have a fairly high pain threshold. I didn't start noticing a common thread in my periods and pain until I was in my late 30s. Dr. Ragi had suggested that I keep a journal. I kind of went overboard and kept a very detailed daily journal. Shortly after that is when I saw that when I was ovulating, my pain was so much worse (this was after my interstim), so that is when I started researching how hormones are triggers for IC flares and pain. I found a lot of people exactly like me, so I talked to my new NP. Like I posted earlier. As long as I avoid my other triggers such as stress and the few diet issues (citrus). I have very normal pain free days and just have to manage my pain at night, which is never above like pre-depo life.

[megalicious]

Tracey83, how do you keep a pain journal? I've read about them before, but I don't know what I'm supposed to write down.

[Claredale]

Mine is just a regular journal. It's more of a diary entry type journal that I get from a book store. I buy a new one every year with a pretty cover. It's more of a letter to myself about how my day was. It's is really neat now to look back at them and see when my IC was so much worse and effected every aspect of my life I never thought I would feel "normal" in this since again. I am not in remission yet, but I call it remission with meds since I can function almost as well as my friends do now. I still have to watch my activity level, since wearing myself out, like cleaning all day on Saturday after working all week, will send me back to my IC days very quickly. I just make notes about my pain level and if I needed to take more than usual, if my freq or urg was okay that day. If I ate anything different, since most days I know what to eat, so it's second nature to me. I also write down anything that may be different that I need to watch for, especially when I am trying a new med, so I can keep up with my reactions.

I have a very brief version of it for my monthly doctor's appts, just in case I have any questions or something I need to discuss since he always wants to know if anything different is going on.

Now, I can go most of the day without having to have a bathroom break. I also keep up with my sleep (which is still an issue most nights) and I always write something positive that happened to me that day.

I tried the journals you can find on-line, but I found that actually writing things out has kept me more interested. I know some people who blog their journals, or keep it very medical. That just seemed to bore me. These days, my entries are not very long, but I make every effort to write in them daily when I have my quiet time.

Tracey

[PFDorIC]

Thanks so much, everyone, for your input!