Spondylitis Association of America Forums General Discussion Women Only Message Board Hormones

Hi all, I'm new to this site. I've been on my never ending quest to figure my problems out. *sigh*

I was diagnosed with AS 7 years ago. About 3 years ago I started having severe pains in my lower back and hips 1-2 weeks before my periods (right around ovulation time). It also felt like my insides were burning. One would think this is a female related problem, but apparently it's not. I had a laparoscopy and nothing showed up. No endo, no tumors, nothing.

Test after test after test AFTER TEST... 5 doctors can't figure out what's wrong with me. They tell me that AS is more than likely the cause of it. That somehow my hormones are causing inflammation that is effecting that area. They are now suggesting a hysterectomy.

I have done extensive research on AS, but I have only found one article that relates it to periods and it was very vague. Do any of you have problems like me?

Thanks!

Angie

Hi Angie, and welcome

I'm usually worse before a period, and hormonal changes of various descriptions have caused me problems. The most profound was a few months after the birth of my child I had a terrible flare. Also stopping progesterone based birth control made things worse for me.

There have been a few discussions here on hormones and flares. Try using the search link at the top right of the screen, or look for topics from the last 60 days on this section.

All the best

Thank you! I didn't go back far enough in the posts to see that.

My worst problem is that birth control makes me sick, so that rules out a lot of possibilities of stopping my periods from coming. I've been on 5 different types of pills and depo privara. Depo wreaked complete havok on my body. It was one of the worst things I've ever tried. UGH!

My OB-GYN wants me to try Lupron. If forcing my ovaries to shutdown works, I will continue that for as long as possible before a hysterectomy.

Thanks again!

Angie

Hey Angie,

Yeah the pain and problems before the period sound familiar. Mine are usually the week before my period - the description you used was just right - like my insides are burning up. I also get alot of diareah that week. (sorry to be blunt) I am on the pill however. But I totally think that all of that is AS related.

Good luck on your quest!

Lynette

Lynette,

It sucks, doesn't it? I also have the diareah problem, although it's been about a year since I've had to experience the worst of that. (Yes, it's gross to talk about, but it's part of it! hehe)

My OB-GYN told me that it's just part of maturing and a lot of women have that problem. In my opinion... having it so bad that I had to use ointments because it felt like I had diaper rash every month is NOT normal. Good grief!

Angie

Angie,
Since being diagnosed with AS, my hormones have wreaked havoc within my body.
I have been on b/control for many years. Since this disease moved in though, my periods became a dreadful time for me. The week before, during and after my period greatly exacerbated my pain. This meant that 3 out of 4 weeks were really bad.
I asked my RD and my GYN about Seasonale. It's a pill where you only have a period every 3 months. It helped, but I would still have those three weeks of pain...before, during and after the week off of the pill. I again consulted with my RD and Gyn and they both agreed...I do not have to come off of the pill at all. When I get to the end of the pack with the differently colored pills, I skip those and move on to a new pack. It has done wonders for me.
According to my GYN, Seasonale is a milder pill than the Depo Vera or whatever it's called.
I hope that this helps you and I hope you can get to the bottom of it,
Char

You are right Angie, it does suck.....

Char - so you never have a period? Is that o.k.? I would love to try what you are doing. I have my yearly gyno checkup this month so I will see what he says. That is very interesting....

THanks for the info..

Lynette