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Post by Debi on Jul 28, 2006 9:48:08 GMT -5
Hi everyone ! I posted a few days ago and wanted to thank everyone for their input. Sorry - I don't even know if I belong on the Endo board or not. I am getting a little scared that what is going on with me is more than Endo....maybe someone can relate. I started with sharp pain in my back early June. Since then, the pains have not really dissappeared. I have been through every test under the sun with no conclusion as of yet. I have just schedule laproscopy to determine once and for all if it is Endo. I had 2 days last week that the pain was so bad, I had to crawl out of bed. It felt like a pinched nerve in my back but I could tell the pain was radiating from the front. Within an hour, pain minimized so I could atleast stand and function. Sat, I ended up in ER because pain was so bad. Dr did CT scan and blood work. He gave me a shot of morphine (which did not touch the pain) and sent me home to follow up with my family DR this week. I had a Sono Monday (which I just finally got the results from yesterday) nothing conclusive there but the nurse who read me the results mentioned fluid in the cavity and culdsac ?? Anyways, seems to me this has come up in previous reports and Dr said most likely I had a cyst that had burst. Can this be a sign of Endo or something greater ? Whould just a cyst cause the type of pain I was having or could it be that the Endo causes the cysts ?
Thanks for your input ! Debi
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Post by erzulie on Jul 28, 2006 15:59:16 GMT -5
I've never had a cyst, so I don't know much about that, except that about everyone I've heard talking about cysts bursting has wound up in the ER from the pain. Endometriosis can certainly cause the type of pain you are having. Is your pain cyclical? Endometriosis can cause chronic pain but to my knowledge it is always worse when you are menstruating, so if you find there is no pattern to it it may be something else (though not necessarily something worse). Do you have a laparoscopy scheduled? If you don't, you need to talk to your doctor about that because it's the only way to diagnose endometriosis. It can also help your doctor find and remove ovarian cysts if you have them. It's actually pretty common to have both.
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Post by ouchy on Jul 28, 2006 16:16:46 GMT -5
For MOST women with endometriosis (probably like 99%), pain is worse during menstruation; however, my cousin who had 14 laparocopies/laparotomies for endo followed by a complete hysterectomy, she somehow never had painful periods!!! Every other woman I know with endo definitely has painful periods, but in a few cases, women with endo may not suffer menstrual pain. I've also found info in texts to support this.
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Post by Hillary on Jul 28, 2006 17:47:35 GMT -5
Wow 14 Surgeries, That is very, very scary , I feel so bad for her. I seem to get cyst on my ovaries, when they went in and took out the right ovary because a chocolate cyst cover the hole thing mostly, when i had my tests before my last surgery I had another cyst on my other ovary. I sometimes feel like i have a pinched nerve in my back, nowing that it is probably the endo, I have had a back injury 5 years back, but it seems that if i walk around alot it seems to work itself out. But it only lasts one day. I haev always found that when my endo was the worst and i got my period pain killers wouldn't touch it. for instance I would take 2 perscribed pills for cramps and an hour later i would have to take 3 advil and still it wouldn't even touch my pain. When i saw my Specialist when i saw a couple weeks ago I told him that my last period, which I was on my honeymoon, I had to take a good 20 advils just to ease the pain so he perscribed me Naproxen Sodium 550MG and it seems to work, I am on my period now and it seems to be helping me. Maybe ask your doctor about it. It says to take 1 pill twice daily although after 6 hours I seem to need another. Through my experience of what my doctor told me was, you can have a little endo and alot of pain or you can have alot of endo and almost no pain, seems everyones symtoms are different. And I found that each period as time goes on gets worse and worse, I was at the pooint before last surgery that I would end up on the bathroom floor and my husband would bring my a pillow and blanket and i would sleep on the floor becasue i couldn't move. I hope this helps, and wish me luck cause 14 surgeries, I go to the doctor Monday to find out my results of my MRI and I don't think i can handle another surgery. Hillary
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Post by ouchy on Jul 28, 2006 17:56:16 GMT -5
Period on your honeymoon Sorry. That's not fair!!!!
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Post by Hillary on Jul 28, 2006 18:44:40 GMT -5
It was pretty hard! Just another hump in the road!
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Post by ouchy on Jul 28, 2006 18:50:13 GMT -5
Hump in the road leading to "no humping"
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Post by Hillary on Jul 28, 2006 20:13:17 GMT -5
We where suppose to make babies! They say that the more you are relaxed the better it is, No relaxing with cramps, I lost 2 days, I still went out a bit but everytime I walked my stomach and my legs and knees aked something feirce. Thankfully on the 3rd day I was OK but because I had taken so much advil I swelled up like a prune. You should have seen my feet MELONS , I learned too much advil and sun don't mix I guess cause it retains the water! I think the bottom line is that, you have learn to live with Endo and take it day by day.........even though i'm kinda a nervous wreck that could break down anytime! I really want children and i am so scared becuse when they did my first MRI my left fallopian tube was/is swallowen and of course i only have that one, they took the other out, but my doctor said after sugery that i did have eggs on my ovary so there is hope. I'm not sure where you are but because of the cancer,here in Canada OHIP will pay for me to have invetro, I'm not sure how many tries they give you but i do have hope that the invetro will work. That alone brings a worry what if I can't, I somehow how to get myself to come to terms with that. I cry alot & have gained 20 pounds, it seems that I can go a few days on the strict diet and then i crash, it' sso hard to keep up with cause my husband is not going to eat fish every night or brown rice with stemed vegetables lol, so I have to make 2 meals pain in the butt! I know that I have to get a grip. This all hit me Jan 30th this year the day of surgery (Yes I was in the hospital on New Years Eve and let me tell you not fun!) The day after the doc said "better have kids now or you aren't going to have them at all" and on his way out he said "Don't cry too much", at 8am morning after still on lots and lots of Morphene, i couldn't beleive this was happening I cried for weeks on end, still crying, I NEVER CRIED before, My hormones were/are going crazy. Since after the 2nd surger yi don't cry as much but enough. I find out Monday whats happening next, if you can't tell...I'm pretty scared. I almost feel I need a shrink..... Oh and if I do get pregnant, I'm going to cry like a baby cause I am pregnant wow i'm a mess. Some of these Dr.'s are so insesitive, when you remove a womans ovary you are setting the hormones out of wak, it takes some time to adjust, more the first time than the second, not soo bad the seconc tmime around. I think this is very IMPORTANT, The first specialist I saw was very busy and when I went in I felt that i was being rushed, like he didn't exactly want to hear whats going on with me, barely ever really gave me the time or day. I am strong but you are in such a vonerable situation your sick and he's a doctor that took a long time to get to. My second Specialist came in the room shook my hand and asked me how I was feeling, he sat in the same kind of chair as me and looked me in the eyes while I explained to him what was going on. I felt so comfortable with him. Never once made me feel uncomfprtable. If you don't feel comfortable with your Dr. change, take the time insist to you Family Doctor that he is not suitable for you and you must change. We are woman and we are in a very vunerable state. Don't let them tell you you are ok if you have pain insist that there is something wrong.When I was doing reasearch on endo and i knew what was going on i wanted to hear about someone else's experience I couldn't find one that matched mine, maybe cause nobodies endo is the same as anothers, so they say. Well I hope that I haven't put you to sleep. I have been told that I have the gift of the gab! ;D Hillary
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Post by ouchy on Jul 28, 2006 20:42:56 GMT -5
Hi, Hillary. Oh I hope you will be able to have babies! You deserve lots of babies after what you have gone through!!! It is nice that the socialized medicine will allow you to have the IVF! There is some hope if traditional ways fail!
I also agree on finding a doc who takes you seriously! Any qualms, and the doc should be out the door!!! Glad you found a great one!
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Post by Hillary on Jul 28, 2006 20:56:50 GMT -5
Thank you Ouchy!
Thank you for listening!
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Post by ouchy on Jul 28, 2006 20:59:03 GMT -5
Hey....not a problem!!! That's what this site is for!
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