posted January 27, 2003 01:13 AM         

Anyway, for those who feel like reading this, I know that there's another thread about cramps on this forum, but I really feel like I need to start a new one because of my situation. I am desperately seeking a solution to this problem.

I was diagnosed with fibromyalgia when I was thirteen and at about that time started my period. After a few months I started getting absolutely disabling cramps. I've been told that fibromyalgia exacerbates menstrual cramps, and also my mom had terrible cramps, too, so I guess it makes perfect sense that my cramps are so bad.

In the past I've gotten prescriptions for codeine and vicodan, but neither of those helped my pain nearly enough. At about age fourteen/fifteen, they were so bad that I had to go to the ER on several occasions to get IV'd with toredol. The pain was indescribable...If you gave me a gun while I was having those cramps I would consider shooting myself. That's when I knew it was seriously something I needed to seek treatment for.

I went to Gynecologists and they said it's possible I have endemetriosis, but even if I did, they said it would be impossible to detect in someone my age. The only thing they recommended for me was low-dosage birth control pills in combination with taking anaprox. My mom was not against anaprox. She is, however, somewhat against conventional western medicine. Therefore, she WAS against the idea of me going on oral contraception. However, after missing a full week of school every single month because of cramps and suffering so much, she finally decided it was the only option left for me. She didn't want to see my suffer anymore.

So I've been on the pill (orth-tri cyclen, to be specific) for about two years now, and it HAS helped tremendously. In some ways, it has saved me. Without it, I'd probably need morphine for my cramps. That sounds ridiculous, but I am dead serious. I also take anaprox in addition to help wih the pain, because the pill has not completely made my cramps go away.

Anyway, I could stay on the pill, because it truly has helped me so much, but my parents and I am scared to death of all the long-term side effects: blood clotting, liver damage, heart problems, etc. Not to mention the short-term side effects I'm experiencing, like water retention.

What I'm basically asking for is some kind of treatment that could help me. To be honest, I'm not particularly seeking "alternative" treatments because I feel as though I've gone done that path and wasted my time. (Although, I obviously haven't tried EVERY single alternative treatment). But, I HAVE gone to one of the absolute best doctors in Chicago who practices chinese medicine and I tried taking herbs, getting acupuncture, and drinking tonics, but it didn't do a thing. I've tried evening primrose oil, calcium, magnesium, etc. I've tried heating pads, hot water bottles, taking tons of aleve/anaprox, you name it. But absolutely nothing has helped except the pill.

And now I am left wondering: Is there any other option left for me besides the pill? I simply cannot afford to go off the pill without some kind of other treatment because I'd need morphine! I'm dead serious. I'm a student and I can't miss a week of school every month!!! That's why I've stayed on Ortho-Tri for so long: because what other options do I have?

I'm sorry I've rambled so much....it's embarrassing that this post is so long. But if you have any kind of advice, please tell me because I'm just so desperate. I don't want these cramps, and yet I don't want to be on the pill.

posted January 27, 2003 10:03 PM         

I really hope you are OK though, that pain sounds awful!!! Do you get enough calcium and magnesium. I don't know if that would be a big cause but I know if you take extra it will help relax you a little, and it is definetly something you need otherwise.

I feel so bad for you in all that pain!

(((hugs))) please keep us posted on how you are doing!

posted February 02, 2003 06:21 PM           

I went through years of pain.. severe pain... and 10 doctors. They put me on codeine, ultram, vicoden. I was sent to a psychiatrist because the pain was "in my head". They put me on Paxil. I told them I thought I had endometriosis and they told me I didn't have that even though the ONLY way to tell it through surgery.

Finally I found a doctor that would look for me and I was right all along. I did have endo. They burned what was there and the pain was greatly reduced afterward.

posted February 02, 2003 08:59 PM         

Gooberz you better listen to Amber!! Something IS NOT right with all the pain you go thru..please..make like Amber did and push to get it checked out..go to a different doctor

And keep us posted..

posted February 03, 2003 01:33 AM         

I'm such a reck. I went off the pill...I've been off for about five days now and I'm having such bad withdrawal-like sypmtoms.

I'll explain everything later, I promise. I just can't right now...I'm too weepy...I'm just a mess. I WILL update you when I'm feeling better though.

posted February 03, 2003 10:54 PM           

It definately seems that in your case staying on the pill is far better.

Also.. did you know some women with endo are given special pills without placebos so they won't have periods or will have very brief periods? Ask a doctor about that, too. Endo grows when you have your period so it's better if you don't have one.

Pregnancy helps also but don't you dare do that for quite a few more years!!!!!!!!!!

posted March 05, 2003 05:55 PM         

I know just what you're going through!! Through my teens I missed a lot of school because of agonizing periods...I had to plan my whole life around them! I didn't find out till I was 25 that I had endometriosis (I was trying to conceive and couldn't) and I'd never heard of it, but I learned fast. By then I'd been suffering horribly painful periods for over 10 years so it was pretty extensive. I too, was on the pill for about 2 years and found blessed relief; lighter flow, to-the-day regularity and only mild cramping. I had some pretty negative side effects from the pill though and kept getting switched around...so I finally stopped taking them.

Maybe if the only side effect you're having from the pill is water retention, you could stay on it; I know I would have. If you're really not comfortable with that, some of the alternatives already suggested here are helpful. Adding my own 2 cents' worth...I found that taking Evening Primrose Oil, B6, E, C, and Calcium...along with avoiding chocolate, dairy and red meat at least a week prior to the onset of my period, helped considerably, though the routine was demanding and the chocolate deprivation was pretty tough, lol. The red meat thing was good though, and led to my eventually avoiding it altogether. Good luck to you, and I really hope something listed in these posts eases your suffering. Take care! ((((Hugs))))

posted March 10, 2003 12:48 AM         

After I went off the pill, I was an utter mess emotionally for two weeks. It was really terrible...but it went away after that.

I saw my gynecologist soon after who recommended an alternative doctor for my cramps (when does that EVER happen?) so I figured: if a regular doctor is recommending an alternative one, she must be really good. Anyway, I went and saw her and she gave me homeopathic (or was it Aruyvedic?) medicine that dissolves in your mouth every day, as well as this weird powder that dissolves on your tongue once a week. She also gave me medicine to take when I actually got the cramps to help with the pain.

The amazing news is this: Since being off the pill, my period came and went and I LIVED!!! lol.

Two amazing things that happened:

1. My cramps themselves were not so bad in the first place!!! I couldn't believe it....it must have been the medicine I took all month long, because I haven't had a period that wasn't excruciatingly painful for a few years. I was so impressed.

2. EVEN better, when I did have cramps, the medicine she gave me for the pain was OUT OF THIS WORLD!!! I'd take five of these little pills called "globs" and they'd dissolve under my tongue...and in *seconds*, yes, seconds....my cramps would be signifcantly better! Better than with tordeol, anaprox, or any other pain pill I've ever taken. I have the bottle right next to me, and it's called "Colocynthis." Unbelievable. Truly a miracle. I don't know if my next periods will be worse (because doesn't it take a while for your cycle to get back to normal after being on the pill?) or not, but it looks like there's a chance I will be able to live my life off the pill!!!!

posted March 10, 2003 08:46 AM         

That's WONDERFUL news!! I am VERY happy for you. I have a question: You mentioned the name of the medicine for the cramps; could you tell me what the other medicine you took is called? I ask because my daughter unfortunately is following in my footsteps with periods that are not only painful, but go on and on sometimes for 2 weeks. She was recently put on the pill, and had to be switched already because of side effects. I am a strong advocate of alternative medicine and if there's a way her suffering can be eased without messing with the pill it would be great. Another question: the medicine you're taking (other than for the cramps)...could you only obtain it from the practitioner? Just wondering if it's necessary for her see someone, because she works at a pharmacy and has access to OTC meds, and herbs, etc. I thought if you knew what's in the medicine I could recommend it to her and she could use her store discount, lol. Any info would be appreciated.

posted March 10, 2003 12:49 PM         

Please email me!