PAIN PAIN PAIN

[leann357]

I have never been diagnosised with endometriosis. The doctors run me in circles. I do not have health insurance and cannot see a doc on a regular basis so......... I do have cysts on my ovaries, they show up on the transvaginal ultrasound. I have all the symptoms of endometriosis except for the fever. I very rarely run a fever. I believe it is getting worse. My husband and I had sex Friday night and it hurt then and I am still in pain now. I read the symptoms mimic other conditions. I have had the doc tell me I am depressed, that I have IBS, that I have fibroids etc.........the symptoms are getting worse. I barley had a period last month, they are usually very heavy. I hurt so bad when I have a bowel movement. I wake up in pain every morning. That is usually what wakes me up is the pain because I need to move my bowels. I have always moved my bowels in the morning. Never been this painful. I hurt, whether severe or just a dull cramping, ALL the time. Then yesterday, everytime I stood up I felt like I was going to pass out; headrush, tunnel vision, heart beating fast, sweaty, shaky, extemely hungry and thirsty. It went away after laying still for a few moments but when I tried to stand up again all of it came back. I actually had to hold on to my dresser, I felt like I was going to faint. Lasted for about 30 minutes, up and down, up and down, I ate then it went away. I have never felt like that before or since. High blood sugar, low blood sugar, or something else, hell, I just don't know???????????????. But I know something is not right. I am 46 years old and I should not be feeling like this. It is ruining my life. My marriage is suffering. I cannot perform my job as well as I should be able to. I am calling in sick and cannot afford these trips to the ER when the pain becomes unbearable. I NEVER FEEL GOOD ANYMORE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I get pain meds from my neighbor when I hurt raelly bad and that is not good not to mention illegal!!! Just don't know what to do. My husband is my best friend so I really don't have other females to talk to about this......and he doesn't understand what I am going thru. He just feels like I don't love him like I used to because I have lost interest in sex!!!!! Just needed to get this off my chest. Can anyone relate??

[Hot8r]

Hi, I set up my surgery yesterday for Jan. 5th, 2010. My doctor told me right up front that he would be opening me up to do my hysto. Was yours a total or do you still have your ovaries? Mine will be total uterus, tubes & ovaries. The only part I am really worried about is the menapause part. Did you have many problems with menapause? Everyone I have talked to said that having a hysto is the best thing they ever did, but never got to get into the menapause discussion with them. I am just sooo tired of being in pain every day, my periods are worse, but my pain is now constant. I tried taking birth control that would stop my periods except twice a year & they gave me abdominal pain & made me sick, so of course I couldn't keep those up either. I have been dealing with this for many years, the last year or so it has been getting worse & I finally asked my family doctor about my pain & he did a pap & refered me to my gynological surgen & he has been great!!! Actually a GOD send. I also have some prolaps of my organs to add to all this, & the dr told me that with that & all that was found on my ultra sound is why the hysto is the best & really only option I have or no surgery at all. I really am looking forward to the no more pain or periods part tho.

[msworried]

hello everyone  i had to have a hysto at the age of 31.. i know the pain you are going through so vivid on my mind,, i would end up in the e.r. every month i got my period.. pain was like if i was giving birth.. nothing helped.. just morphine.. once my doctor told me she thought i was probably addicted to pain pills...i was so offended.. then she put me on lupron treatment  the shots took my period away  so the pain went away but as soon as i was off the treatment i started getting my period again  lord and behold the dam pain started again.. thats when i told the dr. i had enough  i want a hysto .. finally i got it done but it couldnt be done vaginally due to 3 prior c-sections so she had to open me up... but worth it.. no more periods no more pains...  so keep looking for the solution.. don't back down.. get help.. from anywhere possible

[Hot8r]

I am overwhelmed at all the info on this site!! I am 38 years old, have never been pregnant, was FINALLY diagnosed (sorry my spelling stinks) with endometriosis. I have been treated for infertility in the past but NO ONE ever told me that I have endo!! After many years of lower stomach & pelvic floor pain, lower back pain, bouts of constipation to the other extreme of not being able to stop going, nausea, painfull intercourse, some prolapse of my organs, blood in my urine, painfull bowel movements & urination, horrible periods, severe bloating & swelling all over. I finally found a doc who told me what was wrong with me before he ever examined me just from what I told him about my symptoms.
My doctor told me the only solution to my problems is a total hysterectomy, which is to be done in early Jan. 2010. I have found out soooo much information in the last week that my head is spinning. I now have a notebook started with questions for the doc when I go back to see him this Thurs. to set up my surgery & to see what he found on my ultrasound he wanted done before we did surgery.
I feel that I am making the right decision & I can't help but to be a little upset tho that after all the tests I have had & all the doctors I have seen that none of them told me what the problem was & that there were things that could have been done to try to help see if I could have gotten pregnant. Of all the posts that I have read I now know that I had other options before it got as bad as it is now. I am soo glad that I found this site now I feel that I have a lot more information to be armed with going into this. Thanks to you all.
Luckily I have insurance now, but I also understand the frustration of not having it, having problems & no one will take you seriously!!! UGH!! I thought doctors were suppose to help people not treat you like an idiot.

[amyg1977]

Dear Leann, I have been in your shoes, i know $ is tight and MD visits are expensive BUT....if you end with complete blockages of your bowels because of the Endo and Adhesions you could be in some serious trouble, I don't want to scare you but i had a complete blockage due to endo and adhesions and was told it could be fatal if it ruptured. Please look into getting Family health Plus or another insurance based on income and get this taken care of. Only people with endo can truly understand the effects it can have on marriage, mental and physical health and all other facets of life including work. I truly feel for you and would love to talk if you need an ear. Take care and good luck!!

[teddybears4ever2]

I know this is not what you want to hear, but you may just have to suck it up and pay for the surgery yourself.  That is what I had to do, and I'm going to be out several thousands of dollars, but I don't care.  It is against the law to turn anyone who is near death away from the hospital.  Many times there is even help available for some of your bills.
If you feel this bad you need to go get help.  I can't harp that enough this is exactly what happened to me. Remember a ruptured cyst can kill you, and that is what is sounds like you have.  Good luck and if you want to talk me I'm here to talk.

Good Luck,



Rhea

[Des_a_rae]

  I'm so sorry you're having to go through this..and also feeling alone and helpless.  I know all to well where you're at.  I also have not been diagnosed with endometriosis yet but I believe deep down and after everything I've read that this is what I have.  On top of my aunt having to have a complete hysterectomy at 29 because of it. I've dealt with all of those symptoms for years and they've only gotten worse.  The pain so bad, the passing out, dizzy headed, vomiting, I have constant lower back pain.  I even have pain that goes down my thighs. Ovaries feeling like theyr'e about to burst. Nothing helped relieve it anymore. Not hot baths..not pain pills..nothing!  
   I too could not afford the usual "family" health insurance.  It's outrageous!   After years and years of dealing with all of these problems with them only getting worse as the years rolled on, plus being unable to conceive I told myself that I HAD to get help.  Have you heard about Blue Cross Blue Shield Individual Blue?? I got that in April of this year.  It only costs me $90/month which I can afford a whole lot better than the hundreds of dollars it would've cost me for doctors visits or hospital stays.  The only thing is they have this thing with pre-existing conditions.  I'm having to wait until April of 2010 because I've been diagnosed of having fibroids as well as cysts.  I didn't know I had the fibroids until I changed doctors.  My "other" gynocologists just told me after he did a transvaginal ultrasound that I had a "spot" inside my uterus.  Never said anything about more tests or what it might be, but sometime or another wrote on my chart that it was a fibroid.  I changed doctors before finding that out, but the reason I changed was because he wasn't helpful at all.  He was more concerned with getting me pregnant than helping me.  Even said that my "biological clock" was ticking and i'm only 30! Anyways, long story short I have a new doctor and she told me that I do have a fibroid inside the cavity of my uterus and I have 2 cysts on my right ovary and one on the left.  What I was saying about the insurance though is ..even though they can't "fix" me right now, she has put me on birth control to control my bleeding.  I was at the time on my 19th day of bleeding and my "other" gyno wouldnl't do anything so the new gyno put me on birth control.  It has helped the bleeding and a TAD of the pain.  It hasn't all went away but I can deal with it a little better until I'm able to get something done. I sure hope this helps.  My husband doesn't get offered Insurance where he works and I knew I HAD to do something.  Maybe you can check into the "Individual Blue" you can do it online.  If you can't get that..then maybe you can go through a "Patient Advocacy Center".  I didn't know about them until a friend had to go through them.  
   I don't know if you're tried the whole "birth control pill" but it's the first time for me and thankfully the insurance covers the doctors visits and the medicine.  I only pay $10 for it. I only have to wait a couple of more months and i'm so happy and so relieved that FINALLY I can get some help.  I wish the best..take care!

[leann357]

If only I could find a doc to see me on a regular basis. I don't have insurance. I have been to the clinics in the area and they only do so much. I have a hard time saving money. My husband is a construction worker and I am a sales clerk. They have cut my hours at work. My husband makes good money, when he works. The construction has slowed down. We live in a military town, when the soldiers are deployed everytning slows down. You are right about me finding a doc, the hard part is keeping one. Doc visits are very expensive. I appreciate you responding to me. I never thought about being an experiment. You're right about that. I need to be pushy and tell the docs just what I think. I know my body, I have lived with it for 46 years!

[skepticalpeach]

Find a doctor who is willing to take you seriously and give you a diagnostic lap. I refuse to let my doctor experiment on me. I know she wants to rule out things before going to surgery but I'm not going to be a guinea pig. I even called and canceled my gastro appointment. I don't care if she gets mad.