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6 Replies
Cher0208 - November 16

Has anyone had this? Severe abdominal pain? A while back I thought I had a rare disease called Porphyria but even in New York City I couldn't find a Hematologist that knew a lot about it and took my insurance so I let it go. After all, every day I think I have something new.

Well now this pain is back and worse than ever. I should be ovulating now and it feels as though it is coming from my ovaries and not my stomach. My lower back hurts as well as my legs. The pain is so bad that it took 800mg of Advil to merely dull it. I break out in a cold sweat and feel as though I am going to pass out. (Feels very close to the worse case of runs you've ever had- only worse) I have an appointment in an hour with a gyn. I am obviously scared by this tremendous pain. My last gyn said I have endometriosis but she was so vague about it that I didn't take it seriously and put it on my to do list to find a new gyn. Seems as though every month its getting worse. Any similar experiences??



kvc33 - November 16

I haven't had that, but I do know that endometriosis can cause the severe pain you describe - a friend of mine had it. She took a medication called Anaprox. You need specific meds for that kind of cramping pain. I take mefenamic acid for severe menstrual cramps. Advil works a bit because it is an anti-prostaglandin and that is what causes cramps. My pain also extends to my legs.


January - November 17

Cher - Don't know about the endometriosis -- but thanks to you I did a bunch of research on porphyria. It is way UNDER-diagnosed because most doctors don't know anything about it, or can't understand its complexities. I contacted the American Porphyria Foundation. If you google that, you'll get lots of good information. Here is their phone number: 1-866-APF-3635. I called them early in the year and the director called me back. She was wonderful. She gave me the name of a doctor in Texas. (I didn't call him though, as I don't have symptoms now.) She told me there are (?) EIGHT doctors in the US who understand porphyria… not a good chance of getting diagnosed or treated correctly if you have this disease - it can be set off by things like estrogen, alcohol, any number of antibiotics, anesthesia and other drugs. You can get a list of porphyrogenic drugs from the APF, along with a lot of help. (I was amazed to find out that every drug I've had a very bad reaction to was on their list.)

This disease can KILL YOU if you get in the wrong circumstances with dumb doctors. Severe abdominal pain is one of the symptoms. Neuralgia is another. I would suggest that you follow up and get some more information from the foundation. While you're having symptoms is when you should get tested - I think there is a simple urine test you can get done. Please check with the foundation.


iliveinpain - November 26

I just signed on to ask the same thing about abdominal pain. My lower back is so incredibly tight, and when I move I feel like my spine is just bone on bone, I actually feel the bones popping and I think the problems in my lower back refer to my abdominal area. Lets not forget we do have abdominal muscles as well that can be affected by FMS. I would be curious to know what your gyne said about this.


sinkbee - November 29

I was watching Mystery ER the other night and the person was diagnosed with porphyria.The Dr. had the patient urinate in a cup and then sat the cup in sunlight for a day, the urine turned purple and that's how they diagnosed it.Might as well give it a try,it's free.


aztoms - November 29

I have had abdominal pain so severe that I pass out from the pain. Many times the pain is very severe & seems to pass after 10 minutes or so. I have always imagine an area in my colon that causes the pain & once that area is passed, the pain goes away. I have taken many different medications over the years which did not help. I have finally found relief by taking probiotics. This was a self diagnostic & it works amazingly well.
If I forget to take the probiotic the pain reappears after a few weeks.


iliveinpain - November 29

The other night, I found stretching exercises for the abdominal muscles on the internet. It is sort of a push up, legs flat, belly on the floor and leaning on your hands while stretching from the waist up. I wish I could describe it better, cause I felt it stretching like you wouldn't believe. Then after that, I went into the traditional cat stretch for my lower back, and it actually helped the pain I'd been having for so long. Do it VERY VERY slowly though. I'm not saying abdominal pain is never related to things other than muscle pain, but with us, it's a strong possibility which should be addressed. I hope this helps someone.



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