I'm so tired of going to the ER

[vweiss824]

Today I was feeling normal (as normal as you can feel with endo) with a pain level at about a 7. Next thing I know I'm getting off the phone and going to stand up when I get a pain so sharp I have no choice but to lie on the floor and wait for it to pass...boyfriend finds me and wants to call an ambulance but who wants to do that so I say no and I'm fine..he calls my gyn and my doc gets on the phone and says to take me to the ER. After waiting for ages I get my IV with dilaudid , have my exam, get my ultrasound. I went to a different ER than the one I used to go to because I moved...huge mistake. Slow as f***ing molasses and finally learn I have more ovarian cysts (Yay!!) and a UTI most likely caused by my ph thrown off by the mirena. Get my pain meds and antibiotics...but guess who's day was ruined and inconvenienced...boyfriend...says he can't take much more and that I have to be more proactive with my doctors and now he's being the effing martyr and I'm the one soothing things out. I know people who live with you can become desensitized by seeing you in pain on a daily basis which is why I don't show my pain unless it's overwheliming...now it's a huge fight...I'm so tired of that. I'm tired of missing work due to all of the treasures that come along with this disease...friends and work think you are unreliable. Then there's always those million doctors who think it's all in your head and you need psychiatric help. I just feel so alone and no one around me understands or is patient with me...but what about me??? What about my constant pain and misery...watching friends and coworkers getting pregnant and having babies while I most likely never will. I just feel like I'm standing in a crowd screaming and no one bothers. I'm usually such a fighter and try to stay positive and upbeat because it is what it is and who wants to spend their life feeling sorry for themselves and angry...but today, I just have to vent or I will combust. All of you battling this disease are f*cking rock stars who don't let it define you, to make it through the day, you are my heroes. Thanks for letting me go on a bitchfest

[Karen]

Oct 10, 2013 21:40:32 GMT -5 vweiss824 said:

Thanks for letting me go on a bitchfest

Your bitchfest has been heard, vent away!

You sound like me a few years ago. No one gets it. But we do. Hang in there, k?

(BTW, you know that Mirena is known for a higher incidence of ovarian cysts, right? www.mirena-us.com/safety-considerations/#linkD)

[vweiss824]

Yeah I'm actually a pharmacy tech so I did more in depth research on it and saw about the cysts. It could be causing it but this past year I keep getting ovarian cysts so I'm not sure what the cause is. My previous doc mentioned possibly pcos but I don't have any of the other symptoms of it

[omaklackey]

Also be aware that if those cysts are being "misdiagnosed" and are endometriomas they don't go away. That was a problem I had! They kept telling me they were funcitonal cysts and they would go away but when I finally had enough and went in for surgery those cysts were all endometrioma's and they hadn't gone away. It was horrible. I lost a lot of trust in Ultrasound after all that. What endometrioma's do is they can fill and empty but the cyst is still there. Turns out both ovaries were like that. One on the inside and one all on the outside. The inside one couldn't be seen until they looked at it in the lab.

I have to say I understand this rant/bitch so much. When you first posted it I was so there with you that I hesitated to post (didn't want to bitch myself). But at least you know we are with you!

[vweiss824]

I'm so glad I finally decided to join because now I know I have fellow women who understand and experience what I am going through. That is really interesting that you said that because I keep getting cysts on both sides and then they "go away" and then come back. I will have to have a talk with my gyn about that too because I'm about due for another laparoscopy.

[chibineko717]

Also remember endometriomas can rupture. I've had two ruptures and it it the most excruciating pain ever. I look at it like the endometrioma is like a bomb. It can sometimes rupture sending debris to surrounding organs. This makes it easier for the endo to spread to the bladder, intestines, appendix, and even outside the abdomen.

Other times the cyst can just leak each cycle. This can make it seem like the cyst disappeared on an ultrasound, but it refills quickly. It can refill even after surgery if the cyst wall is left and not excised. For my first two surgeries, the doctor just drained the cysts. They refilled within 6 months and led to ruptures. If you go back in for surgery soon, find a surgeon who will excise the entire cyst.
Sometimes a cyst can get stuck to another organ so that it disappears also. I had a cyst that got stuck under my intestines so both the cyst and my ovary were "missing."

Don't worry about the rant. We have all been there.

[omaklackey]

I had one cyst that burst and filled my fallopian tube with fluid. I was so embarrased to have to call my hubby who was on shift (Paramedic works for local ambulance. I wouldn't let him sit me in the back. I crawled in the front and was shaking I was in so much pain. When we got to the ER a friend saw me (she is an EMT) and I was so embarrased to be back in the ER that I cried when I saw her. I don't think she ever knew why. The ER was full so I had to sit on one of the ambulance cots in the entryway. I was so embarrased I kept crying. Over and hour later they got me in and found that my tube had burst. OUCH! So It was all legitamate pain. I shouldn't have been embarrased after all, and yet... when I was fighting with my SBO a few weeks ago I wouldn't go to the ER. Stupid me! lol

[marleybee]

This thread really fits how I have been feeling this week. My pain has slowly been returning over the last month or so after my second lap. Over the weekend the pain worsened and I began to feel very sick. On Tuesday my fiance finally convinced me that something was wrong and I needed to go to the ER. The ER doctor decided it was either a flare-up of my endo or appendicitis and I was admitted. After spending 3 days in the hospital, receiving 3 CT scans, 2 ultrasounds and a rectal scope (which I had no pain medicine or sedation for...)and nothing to eat or drink, The doctor was unable to ever locate my appendix and says there is nothing we can do for you. I was told to make a follow-up appointment with my regular GYN and sent home on pain medication with the only explanation for my horrible pain and nausea is that my uterus might be pressing into my rectum causing an issue. I also had blood in my urine but no bacteria and was treated for a UTI.
While I was in the hospital I had pain so awful that my whole body was shaking while vomiting. The nurses never asked me how my pain was and if I called to ask for pain medicine it always took at least an hour for it to be brought to me. Because my blood work showed no infection and there was nothing showing up on my scans I feel like I received no help at all.
My mom and I have been talking and we are considering the possibility of having my uterus removed if a doctor is willing. My endo specialist says that my uterus is very suspect looking in shape and color and now with the possibility that it is pressing into my other organs it just doesn't seem worth it to continue to suffer just because I am young. I have no desire to be a mother at all and if a surgery could help me to feel any better at all it would be worth it to me.
Thank you all for listening to my rant. I am just sick and tired of being dragged to the ER, being laughed at and called a drug seeker when I never take pills unless I have no choice, and paraded to different doctors, having them look at me like I am crazy for saying my pain is at an 8 or 9 and being told that nothing can be done, but here, take some pain pills and go home. I want my life back.