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Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 2/17/2010 4:43 PM (GMT -7)   
Hey everyone..does anyone else that uses this site for lupus, also have endometriosis? Or are prone to fibroids/cysts ?

I was diagnosed with endo last year Mar and had my first surgery to remove the tissue...currently I have had a couple fibroids found through an internal ultrasound. One of them is blocking (or blocking almost fully) the tube that goes down into my cervix. When my time of the month comes I am in immense pain and take 300mg of Flurbiprofen, with emtec all day, and gravel as well to relieve the nausea. Last month I came so close to passing out from the pain. All it took was me getting up for a min to go to the other room and that's when the world started to go black on me. Now here comes this month, and I'm quite frightened and extremely frustrated. I called my gynocologist to get an earlier appnt, and was put on the waiting list. I haven't seen him yet. I'm three patients away from being called in. My period started this morning, and I'm scared of the pain. I'm freaked out of being alone..what if I pass out and seizure? The last time I passed out, due to low sodium, I had a seizure. I also have epilepsy, as well as the lupus. I have my mom with me now, and we've lined up people to come stay with me for the rest of the day. I'm super frustrated though. I can never pre-guess how fast the pain will come, but it will come...I was woken up in the night from a solid sleep with sharp pains in my ovaries, about 10 in a row. I eventually went back to sleep. I have had many sharp pains since I got up. If I were to be standing and a pain happened I would be doubling over. I have the pains, but the bad cramping hasn't started yet..I have these people lined up and I feel like a fool..I know I'm not, but it's not easy for me to ask for help. I did though, because I'm afraid...and now the cramps haven't fully come. I feel dumb..that's just me talking though. I need to get this off my chest. What if the pain happens tomorrow and then the people have come today and I really need them tomorrow? I also am house-sitting...I am looking after a dog, 6 birds, and 2 rabbits. I left the dog outside in the backyard (it's a beautiful day) and I came home to get some things, as I was worried with the cramping started. I haven't made it back there yet. MY mom said she'd drive me there later to get my meds that I left there that I will need tonight, and so we can let the dog in.

I guess everyone, I just really need to be heard...I'm feeling so frustrated and just wish that I could've got in to see my specialist BEFORE this happened again...I've only seen my GP about this. *sighs* I'm gonna go lay down again, and try and zone out with a video. Take care everyone. Hope you're having a better day than I am.

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 2/17/2010 5:23 PM (GMT -7)   
Oh Ellie! That sounds horrible! I am so sorry you have to deal with something so painful. I have a medication that you might want to talk to your specialist about trying. It is called Lupron. I have been on it since August and I have fallen in love with it. I am on it to protect my ovaries from Cytoxan but the main uses for it is endometriosis and prostate cancer. You will read a lot of scary things on the internet about it and I was really nervous about trying it but the only side effects from it I have had is HOT Flashes, night sweats, and a tad bit more emotional. The amazing thing is I haven't had a period since August :)! Which makes me very happy! Anyways, Lupron is once a month injection or once every 3 months, depending on what you use it for. I get it once a month in my rhuemys office. Here is a good website that you can look over about the Lupron shot. I know it is not a fix for you this time but maybe a possibility for next time??


http://www.drugs.com/pdr/lupron-depot.html

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/17/2010 7:36 PM (GMT -7)   
In the meantime, please visit the ER. Pain so extreme as to make you double over or pass out is more than you should try to handle at home.

I hope you feel better soon and that the doctors get their acts together & help you soonest,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 2/18/2010 11:48 AM (GMT -7)   
Thank-you so much Amy and Lynwood for your replies.  It meant a lot to me to hear from you two.  Yesterday was such a hard day for me.  I'm still not feeling great today.  It's just that last month I wasn't expecting to almost pass out...and the pain was so bad.  My GP (she is great btw) told me the only other thing that she could give me would be Morphine for the pain.  I told her no thanks...I am overloaded with drugs.  My body feels yucky for them.  I'm sure that I'm not the only one that feels this way.  I had quite a bit of pain yesterday.  Not as bad as last month, but still pretty bad.  I felt "off" all day.  I still don't feel good today.  Most of todays yuckiness is from lots and lots of nausea.  I think that a good part of that is from Imuran, which I just started 6 days ago..seems to be increasing nausea.  And some of that is the ordeal my bodies going through in trying to have its' period.  I took 2 gravels, and that seems to be helping the nausea..it's still there in the background though.  More of a faint bother, than an overwhelming motion sickness.  Before I took the gravel an hr ago I felt like I had bad car sickness...if I move I felt like I was going to throw up.  Anyone felt that before? 
 
I also know that Emtec (which I took once last night for the pain) causes me to have extreme nausea.  That's why I take 2 gravels at least 1/2 hr before taking them.  Last night after taking it I felt very unstable and like I couldn't walk a straight line.  I felt like my head was caving in on me and that I didn't want to move for fear of vomiting...I don't like Emtec.  It takes care and helps me to not feel near as much pain in my ovaries, but I feel so ill from it..I know too that the Imuran's making me nauseated.  I just plain don't like feeling like this...today I will lay low and expend little energy.  I can't WAIT to see my gyno.  This is stupid to have to go through this. 
 
Thanks for the tip on Lupron Amy.  I went to the link and you're right, it does sound like freaky stuff...I also don't like the thought of more drugs.  I feel like they're already messing with me enough.  I guess one has to decided between more drugs, or living with the pain...gotta also see if maybe I need surgery...We'll see. 
 
And Lynwood, I didn't go to the ER last night, 'cause I had my mom watching over me, and she was an awesome nurse.  I know she doesn't have medical expertise, but I know the 'cause of my pain, and it's not going to kill me..I do need it taken care of though, not just medicated, and that's in the works.  I'm kinda mad though that I couldn't get in right away...ya know?  Anyways, take care ladies yourselves, and today's a brand new day, hey?  *smiles*  The sun is shining here, and I'm going to have me a nice soak in the bath to help me feel better..
 
-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.

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