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Unread 01-21-2005, 07:20 AM
Tender Tummy


I can relate to how you are feeling sister. I had my hyst. just over 4 years ago.

A few months after I had the hyst. I started noticing pain when I brushed up against anything (ever so slightly). Sometimes the pain was so bad it would take my breath away. I was shuffled around from doc to doc, and finally was diagnosed with nerve damage. I was put on a med called Neurontin, and it has helped me tremendously.

After several months, I asked my doc if I could lower my dose...As I wanted to see if the nerve damage had improved. He agreed, and within a few weeks, the pain increased. I am still taking the med and truly notice the pain more if/when I miss a dose. Perhaps this is something to discuss with your doc...

I also had/have Endo...and the phantom cramps you describe. I had a lap done about a year after my hyst. and the doc found quite a bit of active Endo...even though all of the other docs said it was impossible for me to have it still - I have since learned otherwise...

If you are not doing so already, please consider starting a journal. It is a great way to keep track of your pain...when it is at its worse etc. It also helps the dr's.

I have had numerous u/s both before the hyst and after...with only a couple showing anything...And yet each time I have had surgery, I have been loaded with Endo. So, for me they haven't been a trusted diagnostic tool. The only time something has shown was when I had cysts on my ovaries, as well as something mysterious on my bladder. The docs are treating it as Endo...and the pain I am in now, and since the hyst. does feel exactly the same as it did pre-hyst. I get period cramps, sometimes severe...as well as ovulation pain...and stabbing Endo-like cramps.

Please seek out an Endo Specialist. Perhaps the only way to truly know what is going on is by having a lap. I will probably be having one in the next 6 months or so...Just waiting for the Gyn to return from maternity leave (I found one I really liked late last fall, and wanted to wait until she returned from her leave before having the lap). No other doc wanted to do a lap because of the nerve damage, but it has been a few years since my last one, and it has taken me this long to find a gyn I feel I can trust.

In the meantime I am in the good (great) care of a wonderful group of dr's at a pain clinic. Sorry this is so long, but I wanted to share my story with you...

Please let us know how you make out....S

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Unread 01-22-2005, 10:54 PM
Tender Tummy response

I know EXACTLY what you are talking about. It is so comforting in a small way to know someone else feels the same as you and knows what you have been dealing with.

I have a stomach ache all the time. I'm generally nauseaus (SP).
I have a fit if my 4yr old runs into my stomach, if they bang against the bed, even jiggle it. It just kills. I hate tight pants on my stomach. I had a vaginal hyter 4yrs ago and still don't feel well.

I am in the middle of a bunch of tests again to try to find out why I still don't feel well. I have nausea, vomiting, low backache, mostly right side abdominal pain, migraines, insomnia. I am down in bed with terrible cramps 2 times a month, nausea and vomiting and back ache.

I can't find a dr. to help, or listen to me. i wonder if i should have had my ovaries removed when I had the hyster. I feel like I'm going to have a period like before, with all the cramping, pain etc..

I know you know what I mean. I guess I need to go to a new GYN. I have not been since my hyster since my GYN told me that it was all in my head and I should be fine since she did the hyster. She is the one that delivered my 4yr old son. I had the Hyster when he was 3 months old. That was hard.

My sister is preg with twin boys and still goes to her so i have to be careful what I say about her. I'm just glad she has treated her well for her last 2 pregnancies.
I still think she is a rude nut job. just my opinion. It makes you feel terrible when no one believes you. Like we would make up not feeling well.

Well, i hope all works out for you. Keep in touch! I'd love to hear what you find out or what kind of Dr. to go to . My GP told me to go to a gastro dr. since my gut always hurts, but it is around when I would have a period or ovulate. Plust I have had ovarian cysts in the past.

What a mess!! I just want my life back!!
Take Care!
Unread 02-19-2005, 10:06 PM
tender tummy

Add me to the list of tender tummy sufferers!!!! It has been 19 months for me, and going on Dr # 5 next week!!! I have had CT/dye scan and nothing shows up!!! I have been told " it's just the way you healed" "It's not normal"It's abdmonal wall syndrome" "It's active endo" It's adhesions"!!!! This is very frustrating and nobody had offered any solutions!! They just pass me off from one Dr to the next. I think at this point I am willing to just give up. It is a rotten hand we have been dealt, and I have to live with it. I know MANY women who have had a TAH/BSO and in six weeks were good as new!!! I would like to know, at this point "WHY" this happened???? Just one Doctor please give me an explanation??

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