Discussions By Condition: I cannot get a diagnosis.

Diarhea & migraines with menses - please help!

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • May 27, 2009
  • 00:06 AM

I know this is a lot, but I desparately need your help! THANK YOU!

It started with the sudden onset of acute abdominal pain in my lower left abdomen. This ultimately led to the discovery of my second pregnancy. They 1st thought it was ectopic & rushed me to an ultrasound but I was so early they couldn't see anything but a small sac - inside my uterus. Flash forward a handful of days and they confirm baby is in correct place and fine.... maybe I "pulled an ab muscle while exercising", they said. It didn't feel like any muscle pull I'd felt before, but I was so relieved the baby was okay, I let it go.

Throughout the pregnancy this ab came comes and goes but I chalk it up to "muscle never had time to heal before baby started growing & stretching everything." Then around the end of my 2nd trimester I begin suffering severe pain all over my body which the midwives and doctors write off as "pregnancy pains" even though it was nothing like what I'd had with my first. I become a virtual hermit, doing only what is necessary & telling myself I'll be fine once the baby is born and I get a couple weeks to recover. WRONG!

After the baby is born all ***l breaks loose in my body. I bleed continuously for the next 6 mths and no doctor can tell me why. For 6mths postpartum, I wind up with chronic fatigue (beyond new-mom stuff & unaffected by amount of rest), chronic nausea (though never actually vomiting), frequent gas & bloating, random attacks of DEBILITATING sharp lightening-like pain in that same lower left ab spot, unexplainable bouts of agonizing diarrhea attacks every 2 weeks and eventually constant lower left dull pain as well.
At 6mths no doctor had come up with any explanations that fit, and the only pattern/connection DH & I could come up with was reproductive hormones. So I took 2 weeks and weaned my child from breastfeeding.

MIRACLE! (I thought.)

The random debilitating pain stopped. The fatigue almost completely disappeared. The nausea disappeared altogether. The bouts of diarrhea stopped. The bleeding stopped. The gas & bloating stopped. EVERYTHING either got significantly better or stopped completely. Except...

I continued to have erratic bleeding (but now there were days I actually didn't bleed between the ones I did!) and whenever I bled, the nausea, fatigue, gas, bloating, dull lower left pain, and most notably, the diarrhea would return. In addition, once my cycles started to gain *some* predictability (about 2-3mths later) I started to notice I would also get bloated & gassy, and some lower left abdominal pain whenever I ovulated as well- but not the diarrhea, the fatigue, or the nausea.

In addition. A constant feeling of extreme tenderness began in my lower abdomen about 3 months ago and hasn't let up. I only notice it if someone pushes on that area, otherwise I feel fine. It is always tender but even more so during my times of ovulation and menses.

The other thing I should mention is that I used to have about 2-6 real headaches per YEAR. I got my first ever migraine when I was in my third trimester of pregnancy, several more in the 6mths following delivery, and now get a migraine EVERY DAY during my menses (that means 7 straight days of migraines) and I get notable headaches for 1-2 days when I ovulate.

My primary doctor is still thinking I have IBS but is willing to keep sending me to different specialists right now.

So far I have had:

3-4 pelvic ultrasounds - results "normal" (no mention of cysts- not saying they were there. not saying they were absent. nothing. which is weird since I was diagnosed by ultrasound with PCOS just 4yrs ago.)

1 CAT scan of my lower GI (I think) where they made me drink stuff and then scanned me- results "normal"

numerous blood tests including some tests for: thyroid function, celiac disease, white blood cell count, etc.

a handful of urinary tests (2x separate times came back saying I had UTI even though I had no symptoms of one to my knowledge - yes I've had one before & I KNEW IT!- The first time I took the meds anyway. The second time she had me retest and the second test came back no UTI. bad catch??) otherwise all been "normal"

I had one stool sample collected- but in my opinion it was a complete waste of time because of the timing. (I didn't have diarrhea at the time.) That came back "normal". Duh.

My latest working theories are endometriosis involving the gastrointestinal tract (possibly as a result of 2 cesareans) OR candidiasis syndrome (something I recently came across & am still reading about). They both mimic IBS symptoms to a degree, but I'm not strongly attached to either.

What I DO know is that I don't have the right pattern for IBS and I canNOT trigger my IBS no matter what I eat- trust me I have TRIED. In one 3 day span I ate every IBS trigger food & drink I could think of or find listed on the internet somewhere & lots of it! I have also struggle through periods of extreme stress (family related) with NO IBS symptoms occurring aside from *mild* gas which I have had at times of stress my whole life. None of these other symptoms I've told you about happened prior to my second pregnancy.

Anyone have any suggestions on where to go from here??? I have another GI specialist appointment in about 2-3weeks and an endocrinologist appointment in about 1mth. ANY helpful advice is welcome.


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5 Replies:

  • Okay that's a lot to expect someone to read. Here's an abbreviated list with the highlights (please note all symptoms listed began during or after 2nd pregnancy): Abdominal pain began with conception of second pregnancy & currently continues in association with reproductive hormone changes (though severity & type has changed - see previous post for details). 6mths continuous postpartum bleeding, chronic fatigue, and chronic nausea, stopped with cessation of breastfeeding.Fatigue, Nausea, Gas, bloating, & diarrhea connected with reproductive cycle.Headaches & migraines connected with reproductive cycle. Constant feeling of extreme tenderness in lower ab began 3mths ago/12mths postpartum.Huh. Summarized all nice and objectively like that it doesn't sound so bad. Living with it, however, is a whole different story.
    Anonymous 42789 Replies Flag this Response
  • Anyone? Please.
    Anonymous 42789 Replies Flag this Response
  • I wouldn't get too connected to the fact that you were pregnant. It may have triggered the realization of the symptoms. There are a lot of people that seem to be experiencing similar symptoms as you, and unfortunately from what I have read no one seems to be having any luck diagnosing it. I've heard someone say something about a form of "recurrent salmonnella," but I'm not sure if that is what is is. I just wanted to tell you that you are not alone....and don't be to quick to assume it may be related to the pregnancy. I'm a male and have similar symptoms....headaches, bloating/gassy, diarrhea, etc. etc. Good luck.
    Anonymous 42789 Replies Flag this Response
  • UPDATE: On July 2, 2009 I spoke with a reproductive endocrinologist who was really up on her research and current studies as well as having had a lot of experience with patients experiencing symptoms similar to mine! Her opinion (which I agree with) is that:1) My cesarean for my 1st pregnancy left me with scar adhesions that I was not aware of until I became pregnant the second time and my uterus started growing (stretching the adhesions) and this explains the sharp lower left abdominal pains that alerted me to my 2nd pregnancy & which I felt off and on through the pregnancy and until I stopped breastfeeding. 2) I was likely dehydrated &/or suffering insufficien potassium levels during my trimester of pregnancy and this explains my all over pains. This theory is backed up by abnormally low potassium blood test results a few months postpartum (the first time someone thought to test them).3) After the birth of my 2nd child I experienced a sort of "hormone reboot" in which my body reset much like a computer does. This is not all that uncommon but in my case the reboot resulted in a rather more drastic change than most women typically experience. In my case I ended up with significantly higher levels of reproductive hormone being produced (compared to what I was producing before my 2nd pregnancy) and this explains all of my other symptoms as my body struggled to adjust to the new levels. This also explains why things improved so dramatically when I stopped breastfeeding. Now nearly 1 year postbreastfeeding my body is finally back to a more balanced state. My periods are actually more regular than they have ever been and, although the way I experience them is still different than before, they are now well within the norm of what most women experience. The GI problems are gone. The migraines are gone. It was SUCH a huge weight off my shoulders to FINALLY find a doctor who not only truly listened, but then was able to so clearly and confidently explain WHY I was experiencing what I was experiencing. I was sitting there listening to her and for the first time found myself thinking "YES! That's right! That's ME! She's talking about ME! She actually gets it! Everything she's saying is exactly right!" Everything she said was right on and she was even able to add details that I hadn't even thought to mention but which were exactly right. It couldn't have been more clear that she actually understood what I was going through, that she knew other women who had experienced something similar, and that she knew and understood WHY it was all happening. I can't begin to explain how almost miraculous it seemed at the time! I was on cloud 9 for days afterward. I hope that everyone on this board can find the answers they are looking for and experience this same feeling of relief.
    Anonymous 42789 Replies
    • August 10, 2009
    • 06:49 PM
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  • It's fantastic that you finally found a Doctor who listened :D thanks for updating the post :)Samanthahttp://www.undiagnosedillness.org
    Anonymous 42789 Replies
    • August 16, 2009
    • 07:48 AM
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