So very defeated and discouraged, and now I feel guilty because this is so long.

Hi All
It's been some time since I last posted, and I really thought that by now I would be enjoying the carefree, pain-free, happy lifestyle that I dreamed would come as a result of having my hyst. Nothing could be farther from reality.

I know that this forum is for new hysts, and mine was on May 1, 2003, but I think that often some of the 'seasoned veterans' of the War of Female Miseries read this forum, and I am hoping for some enlightenment

I had TAH/BSO, as I said, on May 1 of this year. I had so many awful, debilitating issues prior to having it done, and while I really didn't want it to have to deteriorate to the point of having to have surgery, I could no longer live sanely with the problems I was having ALL the time.

Yet now, I have absolutely NO days that are not saturated with pain, and with the mental anguish that accompanies a duration of never having relief. I am telling you (and I know there are many who can relate), when you never feel like you will ever be well again, it can and does mess with your mind.

I can't even walk like I used to. Instead, I hobble and wobble, taking care not to take it too fast or I will pay for it! I still use a pillow under the seat belt when I drive, I still sleep with a little pillow at night, and as for making my DH happy in 'that' dept, it just hasn't happened. He is so sweet and so supportive, but I am feeling so guilty. I can't hug my little girl unless it is from the side, and NO ONE touches my tummy.

I try to give myself a hearty dose of perspective (there are people who deal with worse things), and go on. But when is has been soooooooooo long since I can truly say I have felt good, it can sometimes make you slightly crazy. I'm not sure if the word 'slightly' is accurate, however.

The pain begins at my waist/belly button level, and proceeds in a v-shape, much like the uterus shape, all the way to my thighs.
I am not exaggerating when I say that something as gentle as clothes brushing against me while folding laundry, or the cord of the hair dryer swaying and touching me, or holding my car keys, and having my key chain barely dangle and touch that area, causes me incredible pain. NOTHING relieves it.

It's as if someone jerked my intestines out of me, in that area, scrubbed them on the concrete sidewalk and made them raw, and then shoved them back inside me. I feel every single little thing that occurs with them, (weird, but sorta like when I was pregnant and knees and elbows would move around in there, AS WELL AS, quite often, feeling the constricting feeling of Braxton-Hicks contractions). It is NOT like when you have an upset stomach and you cramp, it's like a vice, squeezing upon the actual intestines.

My Gyn 'dismissed' me since she could not figure out what was causing it, and it seemed to me that she was more interested in going about her daily routine of exams, delivering babies, and hysts w/out complications, than she was in helping me find answers. Her 'resolution' to my problem was to send me to physical therapy. I tried, several times, to make the appt to go, but the therapy is offered at the time my youngest child is getting out of school, or at 7:30 am! After several attempts at rearranging my schedule, I decided to put the physical therapy on the back burner, until I could rule out anything medically wrong.

I went to my family DR who sent me for a CT scan, which came back okay. That DR sent me to a surgeon who said that I have lots of bowel all compressed on top of each other, down low in the back, but that my front pain (the 'intestine' stuff) could be 1. an area that may become a hernia in time, 2. it could be from 'entrapped nerves' from my surgery, (now just what does 'entrapped nerves' mean?) or 3. it may be endo making its return, on my intestines. ( All I know is it hurts like nothing I have ever encountered before, and I am about at my wits' end.)

He gave me Neurontin, and although I have been taking it, there has been no relief from any of the pain. I have only been taking it a week, and I am beginning to learn that you may have to take this for a while before you sense any progress.

Please, please, please, has anyone else EVER had the sensation of having that raw feeling at their intestines? Please tell me what I can do, or what it may be, or when (maybe IF) it will ever be gone and I will be well again. I am so discouraged, and I am beginning to combat real feelings of depression. I thought this hyst was going to be some wonderful end to my previously wretched existence in the female arena of periods, and so on, but I am at the point where I would trade it all back and live with the terrible assault that came upon my body sometimes weekly, in the past. At least back then I may have gotten one week out of the month that was free of pain. Now I have started to crumble under the weight of this lifestyle of never ending 'disability'. I feel like I am 30 years older than I am, and I am seriously going totally nuts.

Thank you, thank you to all who considered this worth their time to read. I did not mean for it to drone on so long. The inside of my head is like a garden of mush. I can't seem to even think straight anymore. I am really close to the edge, here. Maybe I will go have a good :cry: and feel sorry for myself, and get it out before my DH comes home. Yes, I am nuts!!

I am so sorry you are having so much trouble. Try another doctor. Do not give up! This pain is not normal and someone will be able to help you. Where are you located in GA? I'm near Augusta and have a great doctor.

First off.........

I cannot believe how dismissive your gyno was!!!! I wonder...How would he/she like to be in your shoes? If there's one thing this continuing adventure has taught me, it's how to put myself in the other person's shoes.

No one should have to suffer like you have. Just from you saying how you're about ready to trade it all back to the awful pre-hyst nightmare, I completely know how awful it is for you!!!!!

My suggestion would be to get a referral to another gyno or some other kind of specialist (preferably one who cares about women's issues). It seems like a never ending cycle of madness, I know, but you deserve healing!!! You deserve to be pain free!!! It makes me FURIOUS to hear that the dr.'s seem to be so cavalier about this!

Sometimes, when we're at the end of the rope so to speak, it helps to get somebody (dh or other family member) involved in order to kind of act as an advocate & get things happening as far as setting up another appointment with a new dr. It's especially difficult to do it all yourself when you're in agonizing pain.

I'm praying for you, dear sister!!!

Dearest Lil Bit,
My sister I am reaching out to you with a hug as gentle and soft as a warm blanket.
I am glad you came back to post and I think this place is for all sisters who have been thru the hyst, and are able to come back and talk and cry and ask.
It sounds like you have been thru so much, I too live with daily and nightly pain and sometimes feel like it will never go away, sometimes you can't even go to bed and get away from it, and you are right, it does seriously mess with your mind.
I am glad you have a good hubby and he is being so patient and kind..mine is too, what a blessing they are hmmm?
I too feel very guilty at times, that my hubby is so tired working two jobs and then caring for me and cleaning the house[our son is married and lives in another country]..I try so hard every day to let him know how very much I appreciate him and all he does and put notes ion his pillow and in his bag[he does respite for the counseling service three times a aweek] when he goes.
Stay after the Doctors, let them figure things out and Lil bit, be gentle with yourself.please...honey you have been and are going thru so much and it is soooooooooo hard to maintain who we thought we were thru all of this, our bodies are changing and our lives are changing, give yourself some time[no limit!} to adjusting and dealing....please e-mail me if you would like..and keep after those Doctors.......Keep in touch with your Highest power, whatever you concieve that to be, I know The Lord teaches me things often by afflicting me so I will stay on my kness in my heart..and don't think for one moment He has forgotten you, He is alreadt there and knows. Now..lol you must forgive ME for being so long.......loving you

My heart is anguished for you. I agree with Melinda...get your husband involved in talking to doctors to solve this problem. At this point the stress is more than likely making it difficult for you to deal with and that causes too much of a delay. Unfortunately we all have to fight the medical care system to get any action and do lots of research on our own.
I am praying for you to find the answers and for your recovery!

Love, Karin

Dear Lil,
I'm so sorry to hear you are suffering so much.
You must be exhausted.

Please, please don't apologise for writing a long post! - I'm just glad you were able to get some of your frustration and fears off your chest.

Do you think you can get to see a pain specialist? Maybe they could clarify what is going on with the possibility of trapped nerves?

I don't share your experience, but my heart goes out to you and
I send some s and ,

Oh Girl,

I just want you to know that I will be praying for you daily, as, things started out really good with me and now are questionable at best. I don't really understand what happened either. My pain is on the skin over my belly and inside and over where my bladder was tacked, I am just trusting the Lord not to give me more than I can stand right now. This is my prayer for you too.

At least we can stay here at Hystersisters to glean what knowlege and advice we can from our sisters to help us to cope.

May God Bless You Muchly,
Annie

I am so sorry about all the pain you're going through. I myself am suffering as well but not with the same problems, but I can relate about the emotional toll it takes. I suggest you get a second opinion as well and as soon as you can. Maybe even a third opinion. Don't be afraid to speak up. Do you have a good teaching hospital near by? Remember, there's always the Mayo Clinic and John Hopkins University if all other resources have been exhausted. Also, keep a daily journal of all your symptoms, etc. so you can refer to it when you see the physician. Take care and hang in there. Keep us updated.

I sent you a PM to invite you to come over to "The Road Less Travelled".

https://www.hystersisters.com/vb2/for....php?forumid=7

I think you'll feel at home there and we can offer you some longer-term support and insight. It might also be more comforting to you to know there are others of us who are dealing with longer-term post-op issues, so you don't have to feel so alone. You're not alone.

I'll be looking for you on "The Road".

If you want, I can move your post to that location, just let me know, okay? The ladies there could offer there replies and hugs as well.

Rita

Sweet Sisters
I have so much emotion while I read your replies. I thank you each, individually, for caring and reaching out to me. It is so encouraging to know that there is a place of calm serenity, where people don't react as if they are looking at you sideways and asking, "What is wrong with you, girl?" Or, "Why aren't you well by now? You have certainly had long enough."

Thank you, thank you. I don't know how long all of this is going to take, and so much of the time I feel like I am so different from everyone else who is going about their business, while I sit like a dinosaur in tar, but as I said, I know there are so many people who are struggling in their lives, so I often feel guilty for grumbling over my lot in life.

LynnMc, I'm just west of Atlanta, but I am getting so desperate that a drive to Augusta may not be out of the question if I can't find relief closer! Thank you.
And fussybird(Rita), skinker, AnnieWoof (Annie), CAS29, InHisHands (Karin), peacewing, and brighterfuture thank you, also, for caring and helping me so much. Yes, I have come to a point where I think a second opinion from a different Gyn would be a necessary thing. And I know I must keep after the doctors, because they won't help if I don't. I cannot imagine what could have happened in this surgery, to make this end up like it did. Thank you for your prayers and love. I, too, am trusting God to take me through this. I thank Him for all of you.

It's sorta like Mother Teresa said, "I know God won't give me more than I can handle, I just wish He didn't trust me so much."



I wish each of you a wonderful evening and a great life. I hope all is going well for all of you.
Again, thank you so much.
Love to my sisters,
LilBitNutty (well, LOTS nutty, to tell the truth!!!)