cme00
New Member
Posts: 4
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Post by cme00 on Jul 8, 2014 23:15:38 GMT -5
My names Courtney and I've been in terrible pain for about 7-8 months. I've been to different doctors but they all tell me I'm crazy and I will be okay. I have been bleeding very heavy when I have my period and also bleeding between periods so I bleed 15-20 days out of the month with terrible stomach pains, I even faint from the pain at times. I'm also so tired I can't stand it. I feel like giving up, I dropped out of college because I could not do the work load being so tired. I'm always sick to my stomach even when I'm not bleeding I'm very sick. Sex is very painful and at times unbearable. I cramp even when I'm not on my period or bleeding. My lower areas hurt a lot all the time and the pain runs down to my thighs. I've been betting headaches too.
They have done blood work everything was fine. I have also had an ultrasound and they said there was nothing abnormal. I've done about every birth control possible and even took myself off of it and did the same thing.
Please help! I need advice
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Post by struggler on Jul 9, 2014 6:47:25 GMT -5
Hi Courtney,
I'm sorry for what you are going through. I understand how difficult it is when doctors don't listen. I too had a battery of tests and many different specialists before I was diagnosed (I had another health issue which made it more difficult).
As far as I know the only way to properly determine if you have endo is to have a laproscopy which is an operation that allows the doc to actually see the growths.
The other ladies on here are probably better at advising of your next best step but I wanted you to know you are not alone.
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Post by chibineko717 on Jul 11, 2014 2:35:13 GMT -5
Hi Courtney, Although you have had many tests, endo will not show up on any of them. Some girls might have an elevated CA-125 levels, which is a biomarker for gynecological cancers and endo, but it might not show as elevated since you are young. I was in pain for many years and had 3 laps before my appendix was taken out. All tests said it was fine, but when my doctor took it out, it was completely black and covered with endo.
If your pain is that bad, ask for a lap. Make sure you choose a surgeon who has dealt with excising endo before. Also search for a surgeon who will look in other areas outside the typical gyn areas. You could have endo on the bowels or other areas.
Keep a period and pain chart so that you can convince your doctor you need a lap. I labeled mine with days I bled, vomited or was nauseated, fainted, or in extreme pain. By showing a doctor a chart, you might be able to get the process sped up. I noticed that my worst days were the first few days of my period and when I was ovulating.
I'm sorry you're going through this. I have been in the same place with college and having no energy to do your work. Keep us updated!
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mskim
New Member
Posts: 28
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Post by mskim on Aug 6, 2014 8:51:12 GMT -5
Your symptoms sound a lot like mine! I have very heavy bleeding during AF, then I have "spotting" between - it's varies between actual light spotting to something that feels like peeing my pants (sorry, don't know how else to describe it!). I've had an T/V ultrasound and they found a 4cm endometrioma on my left ovary (which is where most of my pain is). Previous doctors took a wait and see approach or wanted me to go on BCP...I am not a fan of BCP for my own personal situation (family history of bleeding disorders, blood clots, strokes, etc...and I've been on them before and they make me feel HORRIBLE); every suggestion after that would have negatively impacted our chances to start a family. My new doctor, however, is very supportive. I highly encourage you to "shop around" for a doctor who will listen to your concerns and take you seriously. I also get the leg pain - it is hard to tell sometimes if it's from my back, hip, or groin - but it radiates down the front of my thigh, and wraps around to my hip. It's like a dull ache - sort of like after a really bad leg cramp. Keeping a journal or chart of your symptoms really helps. My doctor has a more natural approach and actually made me start charting my cycles; it's time consuming but I think it will help me learn more about my health in the long run! The other gals who are more experienced with this than I am will have better info for you, but I just wanted to let you know you're not alone I'm actually waiting to hear back from scheduling for my 1st lap surgery...and I'm very anxious and nervous! They are going to cut out the cyst and make sure my tubes are open...and look for endo while they're in there. That's the only way they can be sure it truly is endo. Talk to your doctor, or find a new one who will listen. You deserve it! *hugs*
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