Any ideas what has happened?

[Now50]

I posted a report on my pain problem after I had a hysterectomy in 07.  I have been going to doctors for two years looking for any reason that may have caused a perfectly healthy women to become in constant pain and partially crippled after having a complete hysterectomy.  Cherie sent me a nice letter about a group that learns about what Jesus wants for us.  I talk to my savior everyday, he is my only strength.  But I have now been released from my job my guess is too many dr. appts. and of course they can't say it has anything to do about illness, but I am no where closer to an answer then I was when it started happening.  I have totally lost the life I knew and the doctors keep looking for back problems, but I have been tested for lupus, hormonal imbalance, etc.  Does anyone have any ideas, what else could be looked in to to help me get my life back.  I can't even share much time with my grandchildren because I won't be able to walk the next day,  I can't remember the last night I had a full nights sleep.
I will not have insurance after the next couple months so please give me any ideas to have checked quickly.  Thanks.

[remar]

Keep going to Drs until you find an answer. Have any of them recommended doing a laporascopy to look around and see what the problem might be?
I had a complete hysterectomy many years ago and have never had any pain because of it.
That's such a shame that your were let go from your job because your sick and in pain.
Did your pain start right after your hysterectomy or was it awhile after? Where exactly are you having the pain?
We're here to help as much as we can and of course we're always here to listen. Take care. Corena

[Now50]

No one has mentioned a laproscopy.  The gynecologist that did the surgery wouldn't even test my hormone balance, as he said he knew my estrogen was out of balance and there were too many other hormones to test.  I had had a blood clot in my lung at age 19-20 and I went to another gyn and he said I should not have even been put on premarin especially the large dose I was on.  So I haven't been taking any estrogen, but the new doctor put me on progesterone and tested my testesterone and it had dropped out, and then he just released me like all other doctors that can't find what they think it is.  I had a lot of bladder pain for the first 8 weeks and then when I went back to work I started having this burning sensation in my lower sacral back area when I would sleep it would wake me and then it just kept getting worse, until sometimes I can't even move my legs, without physically helping myself.  I walk bent over like a person who has the ankylosing spondylitis sometimes, and I do have the marker but they said I was not responding to the meds, and took me off them and also that it would not just appear it took years.  So I am back at step one.  I am supposed to get a nerve test done tomorrow, one pain clinic wanted to freeze my nerves so I wouldn't know I had pain, the other wants me to go to a psychiatrist, but with no insurance now I doubt I will being much.  Thanks to Obama though my job has to pay 65% of my Cobra for 9 months.  Guess they didn't get rid of me that easy.  Sorry, have to find a joke in a bad situation somehow.

[petshopgal]

I had a hysterectomy in 2007 at 47 years old. I, too, have lots of pain and am treated as if I am crazy. It started about 1 1/2 to 2 years post surgery. God did not mean for you to be in pain!!  Please PM me. I went to the hospital and got ALL my records. I also got them from the OB/GYN who preformed the surgery and physician who referred me to the OB/GYN  Obtain copies of any films taken pre-surgery. Get ALL the info you can.

I found my doctor had cut my ureter and did not feel it necessary to inform me. I, also, have constant hip pain and have learned that this is normal (??) in the majority of women post hyster due to scare tissue. I have not been able to balance my hormones. I now have high blood pressure and am exhausted most of the time. I use to run 2 hours a day! We are not told any of this before surgery.

Hope to hear from you!

[remar]

That's so true about alot of us not being told what to expect after surgery.
Having pain like this is not normal. I would ask for the laparscopy to be done.
And your Dr wont even check your hormones?!! I don't understand why not.
It's important for your hormones to be in balance because it can cause depression, anxiety, muscle pain, all kinds of problems.
What about trying bio indentical hormones? In my opinion, your Dr should have never put you on Premarin if you had a blood clot before.
Petshopgirl, I'm going through the same thing right now with the exhaustion and I'm hoping to see an OB/GYN soon to try bio indentical hormones.
I hope you both find the answers and help you need soon. Take care. Remar

[Cherie762]

I know your a woman of faith and I pray that you realise in no way shape or form did I imply
God wishes you to be in pain thats beyond my realm of faith to think like that

Ok back to anatomy.remars suggestion of a diagnostic lap is a good one they could see right into all of pelvic areas, you could have scar tissue aadseesions or endotissue addhesions. anatomical parts can become stuck to thinkgs they should not be due to this example my uterus wa peeled off bladder due to endo..ovary engulfed in scar tissue attached to bowel cause tremendous pain.   Once you get a Dx it will be  a big step in right dirrect, write me and we can discuss options. C

[freddiehj]

I wish i couuld help you or tell you why you are in pain but I too have had a problem after my hystorectomy. I had it in July of this year. I wish i had never had it done since now i have horrible pelvic , groin, and leg pain. When i have  a bowl movement (sorry to get graphic) but it is excruceating pain in my groin and legs, like nerves being pinced and burning .. I have to be on meralax every day because if my stool gets too hard i cant go at all ,, even when its normal,. I have so much pain i cant stand it,, i cant bend over to pick things up cuz the pain is so much down my right leg,, I told my doctor about it and he acted like it was all in my head but decided to do am MRI .. but since nothing showed up on that he said he didnt know what to do ,,,,so now i dont know who to ask or go to . If any one seeing this knows what it could be and or has had the same thing happen after a hysterectomy,, please let me know .. FJ

[Cherie762]

Hi, the letter I wrote you about the other forum was intended to help you w emotional support.

I did write a paragraph of common and actually the most reasons for post hysterectomy pain. It usually always is in this order
1. Scar tissue issues...they acn really hurt bad, can do very odd things can connect parts of anatomy to other parts that should not be together..like I said my ovary was attached to my bowel with a large amount of scar tissue. it was difficult accoding to my surgeon to remove thovary because of this , they never want to risk a puncture or even a stick to the bowel that can be life threatening.
2. endometrial tissue...many women who have endometrititis have hysterectomys the surgeons try to remove all endo tissue they see in pelvic area but its sometimes hard to get it all. Also if you or anyone still have ovaries your still producing estrogen which cause endometial tissue to grow, uterus or no uterus.

3.  addhesions..these are different than scar tissue. they are kinda like stands of muscular tissue that attach from one part of anatomy to another,,they can cause great pain as they do not allow for stretching or bending or other movements with out pain.

all three of these can be dealt with in a few different ways , sometimes Leupron helps, sometimes drs have to go back in and do another lap surgery to take out more scar addhesion or endo tissue..I had a dr explain it to me like this,,,everytime they operate of corse they are cutting you thus creating the possiblity and likelyhood of more scar tissue, what they try to do is reduce,,to take out all scar tissue they can and hope that either none grows back or because second surgery to reduce is so very much less invasive that if any more abnormal tissues form its far less and troubles women less or not at all.

                                      

[Cherie762]

You need to get some testing done to see if you have any addhesions or scar tissue attached to bowel, could be pulling it or causing torsion,

If by any chance your still taking narcotic meds they are very binding and will cause difficulty when having a bm..many drs reccomend colace,,because its a stool softner not a laxative the body can become quicly addicted to laxatives and they are also harsh on the system,,,not so with a simple stool softner to the very best of my knowledge they are very safe,Do ask your dr before taking any new meds..
also as you have probably heard but its so very true increse fiber alot...and drink atleast 8 large glasses of water per day,.This should help if it does not Id say odds are very high that you have an internal anatomical problem because of your surgery and you will need to speak with your dr about this,

[wannasmile63]

From what you are describing, I think it could be adhesions and scar tissue. I have had 5 abdominal surgeries, (including TAH) but they left my ovaries. I now have a 6cm ovarian cyst, which is causing excrutiating pain, but unfortunately due to all the adhesions and scar tissue, they can't even work out how to remove it. Apparently everything left in my abdomen is stuck together and they are worried about a bowel perforation to remove the cyst. In the mean time, I am on a pain management plan to get me through until surgery. Worst part is, the more surgery you have, the more adhesions and scar tissue you get.