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chronic pain at almost 8 months post op chronic pain at almost 8 months post op

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Unread 05-04-2006, 06:28 AM
chronic pain at almost 8 months post op

Hi sisters out there I saw my gynae yesterday finally..and we discussed my chronic pain vs the normal mri results that came back. He said that I did in fact have Endometriosis and that there could be some microscopic endo left that would not be visable to the naked eye. But there were no endo nodules that showed up... So it looks like I am going to have to learn to live with this....curse. The estrogen replacement therapy, that I really need is also a cause of pain so I need to ween myself off it a bit and try to find a happy medium. He gave me another 6 months off and he is going to try to speed up things for me at the pain management clinic as I have been waiting since December. There you have it my dear hysteristers. I am releived of coarse that the mri showed nothing abnormal but I am still sick & in so much pain, I would not wish this on my worst enemy. I am now on a patch for the pain along with some pills for when the patch doesn't work and am down to 105 poundsand looking pretty skelital. My mother died (heart failure) less than a year after her hysterectomy at 37 years old...I just outlived her ....and I want to live but I really feel like I am dying over here. I cannot afford to loose anymore weight. I have started drinking meal replacement drinks and also starting today I am going to wear my estrogen patch for 5 days instead of 3 and a the suggestion of my doctor..and that's all i can do really.... wishing all of you speedy recoveries .... your prayers would be very much appreciated.......hugs and love Sweetleaf
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Unread 05-04-2006, 07:09 AM
chronic pain at almost 8 months post op

oh my gosh sweetleaf. i am so sad for you! this is horrible. do you have any good days? the doc doesn't know why you hurt? this just seems awful. are they treating you well? with respect and dignity? i will keep you in my prayers, for your pain to cease, and answers to be given. love to you. h
Unread 05-04-2006, 08:18 AM
chronic pain at almost 8 months post op

Sweetleaf here's a coming your way. I do hope they can get you some relief soon.
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Unread 05-04-2006, 08:27 AM
chronic pain at almost 8 months post op

I deal with chronic health issues so I can understand how hard this is for you. Please try to get up enough steam to be aggressive about getting better. I know it is hard, but it will end up being up to you!

Stick with pursuing a diagnosis, I hope you don't question yourself, with your weight loss it is obvious to me that you are sick. Have you been worked up for an auto-immune disease?

You will make it through this, I am so sorry that you lost your mother at such a young age it should concern you, but that doesn't have to be your story too. Take good care of yourself, and let us know how you are doing.

Unread 05-04-2006, 09:28 AM
chronic pain at almost 8 months post op

thanks so much ladies. I don't know why i find comfort knowing that I am not alone, I can't stand to see people suffering...perhaps it's the being understood part. I have some good days but not enough to even consider working. I even asked the doc "will I be better in 6 months?", I can't see it, especially if the only things I can do are reduce the estrogen until i can find a dosage that doesn't hurt me too much without stopping it (going to be fun....NOT) & go to a pain clinic. I have already had 3 abdominal operations prior to my hysterectomy to try to fix me and I just assumed there'd be more surgery. Bets, you mentionned "auto-immune disease". I don't know what that is but I'll definately look into it. Thanks for thatcoz my weight loss is frightening not just to me but to my close friends and family.
I think what I have now is just residual endometriosis, perhaps some adhesions (I have a history of those too)along with still recovering from the TAH, but I don't know what to tell people. I am part of a fellowship and apparently everyones talking and there was a rumour that went around that I died of cancer a few weeks back. Thank God it isn't the C word and trust me I am very grateful to have had good results from the not only have i been breaking down crying when asked how i am but I don't know what to say anymore I'll *try* to stay's a beautiful day and other than my health, everything else is wonderful..thanks again for the prayers support concern and day at a time I will get through this
God bless you ladies and thank you especially for reaching out to is very much appreciated
Hugs and love to all of ya's ...Sweetleaf
Unread 05-04-2006, 10:39 AM
chronic pain at almost 8 months post op

auto-immune diseases are many, Lupus is one. But there are lots that you might not think of that way.

I only mentioned it because in an auto-immune related disease your body starts attacking itself. Don't worry, just try to find out if there is anything more going on besides endo.

PS I also feel better knowing I am not alone, though I wouldn't wish this on anyone!
Unread 05-04-2006, 08:02 PM
chronic pain at almost 8 months post op

Hi Sweetleaf. So sorry to hear of all your pain issues. Unforrtunately, I can identify. I was wondering if your Dr. thinks that your estrogen replacement is causing pain by aggravating the endometriosis or because it couses pain in and of itself? The reason why I ask, is because I too have had chronic aching, sometimes severe, and have wondered if my hormone patch is somehow to blame. I am also pending a referral to a pain specialist. Thanks for any insight you can give and best of luck to you!
Unread 05-05-2006, 05:55 AM
chronic pain at almost 8 months post op

Hi Laura...I am sorry to hear of yet another woman here with endo after the hyster. My doc said that "yes the estrogen can cause pain makes the blood flow more down there and that causes swelling.""You remove the source of the pain and the nerve endings are all still thinking they're still in pain." Which isn't really what I want to hear. He also said that "because I had chronic pain for so long that it's also the nerves/brain, like when you cut someones arm off" I told him that my pain is so real. I am usually painfree on the first day of my pain med patch, right, but not when it's also the first day of the estrogen patch, I am still in awful horrible pain, that the pain meds don't seem to releive. My lymph glands (pelvic) are so swollen & sore you can see them. I am, so scared that they are overlooking something. I don't want to end up like my mother.
I am seeing my family doctor today (she feels the same as the gynae) that theres nothing else wrong with me (ie cysts...adhesions) but she still gives me the pain meds....sometimes it feels like my innards are all sticking together just hurts so much to stand up straight....and that's just one of the symptoms of the pain.
I hope that helps answer some of your questions Laura and that you too find some releif very soon
hugs & love to you & all my poor suffering sisters out there....this whole websight is on my prayer list as theres too many of you to pray for individually....anyways The big guy knows who you all are, I am sure.
Unread 05-06-2006, 01:23 AM
chronic pain at almost 8 months post op

I just wanted to let you know you are in my prayers. I don't have endo, but understand about wanting a diagnosis. I know if I was you I would get another opinion from a uro/gyn. They specialize in pelvic floor problems. I had alot of abdominal pain so I went to one. I also needed a cystocele repair and a tvt. He did a diagnosis lapro. Unfortunately he found nothing but scar tissue causing the pain, but I felt better knowing nothing else was going on.
I have learnt to be assertive when it comes to health problems. If not you will get brushed off sometimes. I had a 2 level back fusion 6 months ago. I had nerves being inpinged also. After surgery I was left with (and still have)nerve pain in lower back and legs. I was placed on Neurontin. This med has been a life saver. It really helps the pain. It may be helpful in your case.
I hope you find answers soon. Hang in there and keep searching for doctors until you get help.

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