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Pain and fear have taken over my life Pain and fear have taken over my life

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Unread 09-19-2012, 11:50 AM
Pain and fear have taken over my life

I had a complete laprascopic hysterectomy 2 years ago and have been experience all types of pain sensations since. It started with a dull backache not long after my surgery, then bladder burn and an almost constant feeling that I needed to pee when I didn't, spurts of urine when I didn't even feel like I did have to pee, a pinching feeling in my left groin area, pain that goes into my my left hip and thigh, a burning feeling in my upper abdomen and a feeling that the inner lining of my stomach has thickened by several inches...these symptoms come and go. Sometimes one at a time sometimes all of them and the degree of pain varies daily. I have been to gyno, internal dr, urologist, and gastroenterologist all with no exact answers. I have had c-scans, mri's, intravaginal sonograms, C-125 and other blood tests you name it all showing nothing. I have been put on all types of drugs for IC, 6 different tries at hormones, antibiotic for an irritated bladder, Xanax, and a variety of pain pills including most recently Lyrica which I can't afford. None have helped and all dr's have pretty much written me off telling me to come back in a year for a follow up. I did not take the time off from work that I needed after my surgery since I am single and no work no income...I just want to know I don't have cancer! Just a diagnosis from someone please. Fibromyalgia, nerve damage, scar tissue anything....what dr. does this board suggest I see next. Neurologist, PSYCHIATRIST!! what. My pain and fear have taken over my life.
I was active, happy and healthy before ovarian cysts led to my hyserectomy and no I feel like I have aged 20 years in 2. Any advise is so greatly appreciated. Or even if you can relate please reply just so I don't feel so alone in this.
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Unread 09-20-2012, 06:40 AM
Re: Pain and fear have taken over my life

I totally understand how you feel. Pelvic prolapse in Dec 2009 using mesh and sling products have crippled me. The pain. I live with pain. It's like I never recovered from the surgery. Can't have sex. Pain. Had a nervous breakdown in 2010 because of the devastation of my entire life. I don't have a life anymore. Searching for surgeon to repair damage.
Unread 09-20-2012, 09:32 PM
Re: Pain and fear have taken over my life

You are not alone. 14 months post op and I'm in constant terrible pain. I had surgery to improve my quality of life and it is so much worse now. My sex life is ruined. I hurt so much I don't know how to cope with it. I take Percocet and still barely manage to pull myself through the work day. The commute (50 min each way) is killing me. And I hear you about the Lyrica!! Over $300 for my last prescription. I don't think it's helping but I keep taking it just in case it is helping even a tiny bit. My relationship ith everyone I care about is starting to really suffer.

Have you considered finding a physiotherapist who specializes in pelvic floor dysfunction. It sounds like you may benefit from this. I have been seeing one for the past couple months. I am seeing a tiny bit of improvement but we don't seem to be making progress lately. She says my nerves are so irritable she can't even get to the scar tissue to loosen it up. She and my anesthesiologist (from the Pain Clinic) want me to consider a nerve block on my obturator nerve. I don't want to. I've had so many invasive things done to me down there in the past 4 years and each procedure seems to lead to another one.
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Unread 09-24-2012, 10:20 PM
Re: Pain and fear have taken over my life

I am so sorry you are going through this. I too have had lots of problems since my hyst 2 years ago.
I have received the most help from a pain clinic, and the physical therapist they sent me to. I still have pain, but between the meds and the PT, I have regained some quality of life.
My pain docs think that I have nerve damage, but no one really knows. I have given up looking for a cause, and am focusing instead on quality of life, and acceptance of what I cannot change.
Please continue to keep in touch! This website can be a lifesaver.
Unread 09-25-2012, 07:48 AM
Re: Pain and fear have taken over my life


I am so sorry to hear of your level of pain. Mine wer no where this severe but my biggest helps came from a pelvic floor physival therapist and a very good acupuncturist.

Sending and prayers to all of you.
Unread 09-25-2012, 08:59 AM
Re: Pain and fear have taken over my life

Thank all of you precious ladies for your replies. It is a blessing just to have someone to relate to. I plan to see a physical therapist and pray that brings relief. I am also praying for peace of mind and the ability to accept that this is my life now and I need to turn my fear over to God. Lets all keep talking to each other...this is a wonderful means of information.
Unread 09-25-2012, 09:26 AM
Re: Pain and fear have taken over my life

Big hugs to you Tech, and I really hope things turn around for you soon. It is a difficult thing to accept these unwanted changes as part of who we are now. I am having a big struggle with that one. Be careful with your choice of physical therapist. The first one I saw had me doing stretches and exercises that were not right for my condition and made my pain worse. The key is to find one who specializes in pelvic floor dysfunction and/or nerve damage. If there is a Pain Clinic in your area that could be really helpful to you as well.

It is hard to stay strong and positive when living with such pain. Remember that you are not alone. We need to keep advocating for ourselves and researching for answers and possible treatments. Stay strong Sister, you can do this.

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