Hello,

    welcome to the site! As you, many of us have lost friends and family members due to chronic pain. You should be able to find friends here. It also took me a long time to get a half way accurate diafnosis. It's been a year for me. I've been diagnosed w/ anything from migranes to lupus. My latest diagnosis was fibromyalgia, chronic fatigue syndrome, TMJ, and arthritis. It does get lonely due to the fact that you cannot do anything because of the horrible pain. I haven't done anything with my teen friends in over a year. I'm looking into homeschooling b/c school is too hard for me to suffer through. Oh well, life goes on. I hope that I can be an encouragement to you. : )

                                                   Your new friend,

                                                      Morgan

Hello Deborama

It's a plesure to meet you dear.

Your pain sounds just exactly how & where mine began.  (It far worse now) My first couple of years, no one could find anything wrong with me.  It was sooooooo frustrating and I knew my husband & son were looking at me wondering what was up with me and why I could hardly walk, but the x-rays showed nothing wrong with me.  After 2 years, my doc finally said, why don't we send you for a Ct Scan.  When we got the results back, the nurse called and said they were normal, but then I received the roport in the mail and the report said I had 2 fractured disk at L3 & L5 w/L4 bulging and I also had Dengeration with narrowing in the spaces between my disk and that this would become a chronic lifelong pain problem for me.

I was strangely thrilled to finally have a diagnosis.  I thought how pathetic, I'm excited they finally found something.  Since then, every single Scan & florascope has been worse & worse, just like the original report had said.  If you have any tests done, be sure you follow up on the results, sometimes (just like mine) they fudge a little bit and don't entirly tell us the truth.  So make sure you get a copy of the report yourself.

I know and understand how lonely it can get when your living through this journey in pain.  Your not alone anymore, we care here and Your welcome to contact me any time you'd like to visit.

Gentle Hugs

I'm here for you any time you'd like

Betty

deborama2

9/28/08 8:32pm

Thank-you all for the warm wishes.  I had a tvt bladder procedure 1 1/2 years ago today I started looking up different things and found cases of persistant groin pain post procedure.  I will bring the literature to my Dr.  I will visit this site often.  SO wonderful to know that I am not alone!!

 Hi Deborama2,I chose the guy yelling because it seems like no one listens to us until we get their attention.We all know just how you feel.We have all been told that it is in our head.Or if we are so sick then how can we do other things and be smiling.They don't know what it is like to cry for a week because you know you have to make an appearance somewhere and you are terrified of having a panic attack or just something going on in life that may be a little speed bump to healthy people.To us it is like hitting a brick wall.I have only not been in pain between the ages of 5---12 years old.I am 57 so there you go.I had to raise 3 girls practically by myself.I married a man just to feed my children.And before ya say it yes I told him I was not in love with him.But I was 20 years old and had 2 daughters before I hit 20.And ofcourse my husband left me.I didn't even know how to write a check.I think that more than anything else tore my heart out.The fact that I thought he loved me so much only to find out our relationship was over.I thought this high school sweetheart love of my life. Who went to court and to a judge in order to marry me as his parents would not sign for us to marry.I was only 3 weeks pregnant when I knew.I was not promiscuous.He was my only and I held him off from 13 to 17.I got pregnant the first time.So my life has been rough.And then to throw all the other stuff on top of it you become overwhelmed.I think all of us here have basically had all the bad stuff said to us.We are doing it for attention,its all in our head,if we would just exercise we would be cured.Yes we know what you have been through before we get past the first paragraph.I know that doesnt help.At first this site scared me because I though if I say it.Then that makes it all true.Right now I am going through some dental problems to put it lightly.I too have had a pain in my lower right quadrant.You said yours is on the left.The colon is on the left.Or it could be the ilieum.I have pain on the right.which could be the ilemun or appendix or my gall bladder etc....So I have all the test done and guess what.Right! nothing wrong they say.I am throwing too much at you at once and I am sorry.I am pretty new to this site and I just want to introduce myself to you.I see Morgan, my computer daughter has been the first to welcome you.She is a great kid.She is smart.And she was the first to welcome me.I am stilll having problems learning how to navigate around this site also so dont feel rained on;Sooner or later you will find us or we will find you.Good luck girl and always know you can sit at your computer in the middle of the night and you will probably find one of us up.Just for moral support and a shoulder to cry on....We welcome you to our group with all of our hearts and I hope we can help you just as much as we in turn were helped by others....I am Jo.I am a 57 year old disabled house wife now.I used to be a hairdresser for 21 years and I worked at Mayo Clinic for about 7 years.That is where I got disabled from.Which is a long story.I talk too much too so if I do it wont hurt my feelings one bit if you are in pain or just dont feel like writing we all understan.Hang in there we are here to support you .As Always .....Jo 

deborama2

10/ 6/08 5:59pm

JO thank-you so much for your reply.  I am a registered nurse and have been so for 21 years.  I worked in a burn unit for 7 and then moved.  I floated around doing mostly surgical nursing, and then found myself in ER.  It is my passion.  I love this type of nursing.  I have been away from it for 6 months.  I feel like I have lost a bit of my identity being a patient instead of a nurse.  It is hard being on the other side. 

I divorced 9 years ago, and re-married.  My second husband has 4 children and I have 3 so we are busy.  Ages ranged trom 14-22.  My 14 yr old son lives with us and my other son lives with his Dad.  I really hate that he lives with his Dad.  He is 16 and struggles so.  He won't move back with me so I have to deal with it the way it is. 

      I lost a sister to murder 10 years ago, and my stepson early in our marriage to suicide.  We have been through so much as a couple......  also my Mom-in law too.  We have definately been getting stronger though.  Talking and listening lots.  Plagued with disagreements about the children.  I am too soft and inconsistant....  I need to buck up!

      I have had a 6 month journey through pain.  Multiple tests and no answer.  I was diagnosed with a herniated disc with no radiological proof which didn't work in my favour.  When the MRI was negative, my doc was stumped.  Some of my blood work showed inflammation, so I was sent to a rheumatologist.  I recently have had a CT of my abdomen and a MRI of my hip.  The CT shawed something but I have to wait until the 14th to find out.  My pain is primarily in my left groin it burns so.  I also get back pain and general body aches.  I had a partial hysterectomy and a tvt bladder repair Jan 2007.  A colleague and my husband told me that I haven't been the same since, which is very true now that I think back.  I did a literature search on tvt procedure and persistant groin pain.  Low and behold there are cases!!  nerve entrapment and burning pain unrelieved with anything except a localized injection, and surgery to remove the tape!!  Ah ha.  I have requested a apt with a urologist, but you know they have to agree to see me first!!

This is long winded thank-you for sharing your story!!

Oh I am 44.........

Hope to keep talking .........  HUGS!

Deb.

Jo

10/ 6/08 10:06pm

Hi Debs, Sounds like you had it pretty rough too.I had my hystrectomy when I was 42, about your age.I thought my right groin pain was due to the staples and getting constipated thus pushing against the staples causing pain.But I had no bladder repair.My daughter Bonnie had some bad pains in her bladder area.She is a radiology tech.But she has always had a very high tolerance for pain.Amy and I (my oldest daughter) both had 3 day long labors and we watched as Bonnie delivered her daughter first born to the tune of yall are standing in front of the t.v. and I want to see the end.Amy and I looked at each other like no way is that fair.But as it turns out she had what you called pelvic congestion.Have you addressed that.I try not to take it for granted that someone knows something and I also hate it when others automatically think I don't.One for instance is did you ever consider going to a chiropractor.I said gee.Only went to one for 20 years.Maybe I was defensive.But I try to keep it in the middle of the road.I had never heard of pelvic congestion.They said it was from having babies.And her youngest is 10 so it wasnt something that just happened right after having a baby.Some of the blood supply was cut off due to this condition.Now I have never heard what a tvt procedure is.I have had bladder problems all of my life.Mostly I have bladder spasms without the infection.I had to have some kind of mercury procedures at Mayo when I was working there.But after about a dozen of them I said enough.I hate to be cathed.Don't you too?

    I am so sorry you lost your sister and your step son.Sounds like you and your husband have really had more than your share.And I get you about the disputes on the difference of parenting.I think just go with your gut.They really aren't born with a set of instructions Hah! But my youngest had behavior problems.We actually had reverse child abuse.I think that is the only thing me and my husband ever argued about.He is a blessing though.And my youngest was only 7 when I married him.The other 2 were 13 and 14.They,I thought would have been the normal age to have a strict parent all of a sudden but no.They idolized him and my youngest tried to ruin my marriage.They hated each other from the first.Which was hard for me to be in the middle.But she did have behavor problems and we had to put her in ST.Johns for 4 months.Attend the meetings twice a week.It was harder on me than on her.She also was obese.I was always worrying about that.My other 2 daughters are tiny.Rachael did eventually have a gastric bypass.I thought the last ten years I have been sick she turned out to be the only one who stood by me.She understood.When she was about 19 she had an 81/2 lbs necrotic tumor.And the dumb e.r. doctor sent her home because her white count was near normal.Well it only takes common sense when someone is screaming in pain.He gave her percocet and said come back if it gets bad.Well ofcourse you are going to get some relief.But then sometime in the middle of the night she called me and said mom I don't think I am going to make it.Thank God Dr.Shimansky was on duty.I worked at Mayo at that time and we used the new St.Lukes hospital and I knew he was top notch.He loved the E.R, you could tell.But he said well I have a general surgeon,a gynecological and also Dr.Metzger who is a genius as far as I was concerned.She was put on the video to Rochester and to Scottsdale Mayo Clinic as a surgery that doesn't follow the rules.I was told if a doctor treats merely by blood work really isnt't a good doctor.Just one who goes by the book instead of just commmon sense.She has so many scars on her stomach.With the bypass and the tumor.There is mesh in there and she is pregnant.Due any day.They have a specialist at Jax Shands who will do a c-section going into the groin underneath the mesh etc.She still has hernias in there.So ofcourse I am so worried.After Rachael moved out on her own.Our marriage was like heaven.My husband was adopted so to him my children were his too.He even carried around pictures of our first grand kid.He was 28 when he became a Papa.I was 36.Now we both felt like she was our baby.They moved to S.C. for 5 years when Jesse was about 5 months old.But when Amy came home for visits.Jesse wanted to sleep with us.So you can see how special she was.Right before they moved back she had a baby boy(Amy did) and he was the first boy born in our family in 36 years.So he became Cody Master.Later to be changed to Master of Disaster.He you couldn't help loving.In a Christmas play he was a sheperd and he kept winking at our Preacher.Actually it was a couple who preached together.They were probably in their 70's at the time.But Cody could melt anyone's heart.He is 17 now and when he comes in he automatically starts massaging Nanny's neck and back.How could you not love that.So I am expecting what I think will be my last grand kid.And I will aslo be a great grandmother when Jesse has hers in Feb or March.So my grand kids are as follows.Jesse 20,Cody 17,Taylor(a girl) 15.Payton(boy) 10 and Elijah is 10 also and the last little girl(darn it) is 6 and her name is Raven Skye .Maybe Jesse will have a girl.I am just prone to girls because that is what I had.But Bob also loves girls too.He thinks they are easier to raise.Then I remind him of Rachael.And he says well most of them.We laugh.I have had a good time telling you about my life.And I keep a little book now for this site.I like to remember who has what.And I have short term memory loss.So it isn't like being a spy or anything.I just can remember better if I write the outstanding events in everybody I share post with.It has been a couple of hours I have been on the computer and my neck is screaming at me so welcome Debs.Talk to ya soon...Jo

Hello, Deb.

I guess I'm fortunate.  Of the people in my family, I'M the one who is insisting that this has to be all in my head.  My husband (an LPN, by the way) insists that the physical manifestations of my pain make it all too obvious I am in severe pain and something significant is wrong.  Pain has been a major part of my life since last August, and has been its sole dictator since mid-November.  I no longer can function because the pain is so bad, and still have no answer as to its source.

God bless you in your struggle.  Keep looking, keep believing.  I'm sending up a prayer for you.