How am I allowed to feel?

[michele922]

Im 28 y/o and after struggling with pains and bleeding since i was 14,I was finally diagnosed with endometriosis,adenomyosis,pelvis congestion and icistial cystitis. Iv had 2 laps  in the past 3 years. I did become pregnant after my last lap, my daughter is 13 months old. My pain came back 10 fold about 6 months postpartum. due to insurance changes I was forced to seek a new doctor. My new doctor recemends lupron with add back therapy, im not sure if this is what I want to do. But what my question is, how am I allowed to feel about all this. Im exhausted all the time,have pain everyday. Im finding it harder and harder to function.I am also a nursing student so this is taking a toll on me all ways around. I feel guilty all the time because I either am accused of complaining or I feel guilty because its not a terminal disease.I have had a mri recently and found that I have a 4 cm mass on my right ovary which is to be believed as a possible endometrioma. It makes me so nauseous and I feel so bloated all the time. But what I get from people is well thank god its not cancer! And I am truly great full that I do not have cancer. But I feel like that because  I dont have a deadly disease people feel that what I do have isn't real or Im over reacting, its so frustrating. Any body feel this way? or have any advice?

[seattlemom2plus]

First of all nobody can tell you how you feel or how you should feel besides for you.  Only you know your own body.  Is there a way you can get the cyst removed or did they advise you that it would heal itself?

[thebrat333]

Hi there

Agreed it is horrible when people can't see or feel your pain and say you look really well drives me nuts!!!

I went to the hospital yesterday for the results of my 3rd internal ulttrasound scan and the consultant said to me are you still getting the pain?

I looked at him and said yes of course!!

Does he think it is just going to get up and walk away ???

I obviously need surgery but he is under the delusion I don't have endometriosis because he said I didn't have problems concieving but not everyone has that problem it depends where it is . You would thik he would know better being a consultant to wait for the laporoscopy until he gave his unwanted opinions.

Lol its good to have a vent!!!!

[littlestar714]

I cannot agree with you more. I felt like I was reading something written by me the whole time I was reading this. I am 28 also. I was also diagnosed with Interstitial Cystitis and may have Endometriosis as well but will find out more about that in a month. I live my life in pain every single day. Also, I was diagnosed with IC when I was 19. My pain was horrible, but it was only a few days at a time, here and there. Went away for long periods and didn't TAKE OVER my life. Then it miraculously went away completely for about 3-4 years. Then (and I find this also strangely similar to your story), six months after I had my son in 2006, the pain came back, just as you said - TEN FOLD. Absolutely AWFUL. I too had to see a new doctor because of insurance issues. He also diagnosed me with Interstitial Cystitis. Found nothing physically wrong with me. I just don't think that's the problem. I feel like my body is trying to tell me something. If you're interested to know more detail about my situation its in my profile. But I wanted to tell you I also deal with people saying "thank God its not cancer" and the like. Well, next time someone says that to you, say this back: Interstitial Cystitis ALONE (not even including all the other health problems you say you have) is WORSE than many forms of cancer! This is a FACT and is stated online and in books several places. The pain of IC is worse than Cancer, and the suicide rate is extremely high as well. People don't believe us because they think "well it can't be that bad if you're not in the hospital"... Yeah, we've all been there and done that with the hospital, emergency rooms, etc. Useless. All the doctors at the e.r do is shove pain pills down our throats and tell us to see our regular doctors. It's the same thing every time. A complete waste of time. So what do we do? What CAN we do? We just have to sit through the pain, agony and depression and DEAL WITH IT. Nobody understands this kind of pain unless they HAVE this kind of pain. Plain and simple. They expect us to be all fine and dandy, and assume that just because something couldn't be found thats PHYSICALLY wrong with us that we don't FEEL pain.and we're just over exaggerating. Crying out for attention. I tell them "Picture a bunch of tiny little elves living in your bladder with tiny little razors, slicing up your bladder over and over and then pouring alcohol on it..THATS what I feel like". And I have a "new" symptom that has come up recently, which is bleeding and EXCRUCIATING burning pain two days after having sex. I've had sex 6 times in the past 3 months, and after EVERY time this would happen. And it's always two days later. I feel fine during it and the day after, but the day after that is so bad I want to literally step out my third story window. This isn't my period. This happens in ADDITION to my periods. Lasts the length of a period though, flow of a normal period. But the burning, especially right at the end of urination. OMG. I can't even explain it in words. But anyway, to answer your question, you have EVERY right to feel this way. You have MORE than a right to feel this way. People are just ignorant and have no idea what it's like to feel like this. Just because it's not cancer, like I said, means nothing. My advice (besides what I said to say back to them earlier) is distraction. Just do anything to take your mind off it. Also, talk to people that understand what you're going through. Trust me I know it is SO frustrating to have people just assume you're fine and that because you're not in a hospital bed you're in tip top shape. I think about and deal with this everyday. I always think about how, if I could, I would inflict my pain on these people for ONE DAY and see how they would react. Just one day. Then see if they'd change their tune. Hang in there.