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Fluid in Abdomen, Distention Dr's Dont know whats wrong please help Fluid in Abdomen, Distention Dr's Dont know whats wrong please help

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  #1  
Unread 08-03-2010, 07:34 AM
Fluid in Abdomen, Distention Dr's Dont know whats wrong please help


And am unsure where to post this.
I need help. I am scared and confused.
I had a TAH in 2007 with loads and loads of endometriosis removed.

About 10 monhts ago i started experiencing some problems with what i thought at the time was my back. Turns out i had gall stones.

On July 8, 2010 I went in to have my gall bladder removed. After the surgery was over I had to stay overnight and have a drain put in.
The surgeon came in the next day to explain the reason for the drain was that they had found 4 liters of extra fluid in my abdomen. He explained the concerns for finding that amount of fluid in the abdomen. Sent it in to be tested and it came back negative for cancer cells.
Over the next 2 weeks my abdomen became larger and larger (distended) tight and taute. So uncomfortable. I started measuring a week after surgery. It grew 5" in 2 weeks. I look as though i am 6months pregnant. Drs kept saying it was post op inflammation. But that it was NOT normal for it to go on this long and to get bigger.
I than went to see another surgeon who felt my belly pushed on it etc and said "you have ascites" again explaind teh concerns that go along with ascites. He got me in for a colonoscopy and EGD the next day. Those came back great with no problems.
So i had those on the 28th of July. Than he immediately scheduled an exploratory for the 30th. With plans to drain the fluid from me and look for ovarian cancer or any other problems.
Surgery was done Surgeon came out baffled. No fluid at all! He searched all inside me and found nothing no signs of endo returning or ovarian cancer. He did notice the mesh inside my muscle had fused to my abdominal wall. But didnt seem to concerned about it. Sent me home with a follow up in 3 weeks.
So i am home with no answers as to why i had 4 liters of fluid in me in the first place and why my abdomen got so distended so fast. I am now 4 days post op of the exploratory my belly is still just as big, now i am more uncomfortable, I get lightheaded all the time, my hands are cold my feet are cold but the rest of me is just hot. Im not on my hormones cuz they asked me to stop taking them for now while we figure this out. Now they tell me to get back on them . ( i take bioidentitcal)
I am so scared I went from needing my gall bladder removed to possibly having cancer to they dont know whats wrong.
Someone out there please help. If anyone offers any advice or knowledge on this I would so greatly appreciate it.
Thank you for listening ,

So Scared in Missouri,
A.Marshall
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  #2  
Unread 08-03-2010, 08:55 AM
Re: Fluid in Abdomen, Distention Dr's Dont know whats wrong please help

Who is seeing you now, a surgeon, internal medicine, GI Dr? I guess I'd start with someone general or internal med if you've already been seen by a GI Dr. I guess liver/kidney problems are what I'd wonder but wouldn't they have checked those? At any rate they should check for re accumulation of fluid to recheck and re drain it if its back. I don't know what it is but I hope you get answers and relief soon.
  #3  
Unread 08-03-2010, 09:54 AM
Re: Fluid in Abdomen, Distention Dr's Dont know whats wrong please help

ive seen 2 general surgeons, my family dr and about to go see my gyno again. THey said they checked my organs during the exploratory . THanks for feedback greyown I am hoping someone will read this and know of a similar story
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  #4  
Unread 08-05-2010, 10:12 PM
Re: Fluid in Abdomen, Distention Dr's Dont know whats wrong please help

A.M.--

I am sorry you are having this pain and discomfort. I have heard of a few similar swelling-type reactions to some people who have had mesh implants and it makes me wonder if it could be the mesh that is 'fused' to your abdominal wall? That definitely does NOT sound at all normal to me. What type of mesh is it? Did you have a hernia repair or was it originally bladder support mesh of some sort? There have been quite a few hyster sisters--and others--who have had some terrible reactions to polypropylene mesh and have had to have it removed.

I am NOT saying this is what you have, just that it sounds similar to some reactions--abdominal swelling, being one big similarity. I also belong to another group where some of the women say they feel like they look almost pregnant with the amount of swelling they endure at times from their awful mesh problems.

[I do have some experience with bladder mesh erosion, symptoms, & removal personally. It was awful and I don't wish it on anyone.]

The main symptoms--pain, swelling--seem to go away once the mesh is removed. If it were me AND if it's bladder mesh possibly causing the problem, I'd get an opinion from a UroGYN who has LOTS of experience in removing polypropylene mesh. You can find some of these experts at medical schools and some online by doing a thorough search. You'd probably benefit from getting a second opinion no matter what the problem is since you do not know what is causing your pain and you still have it.

I do hope you find the help you need.

  #5  
Unread 08-07-2010, 08:00 PM
Re: Fluid in Abdomen, Distention Dr's Dont know whats wrong please help

orahdeb,

wow thank you so much your reply was oh so helpful. I will be makin an appt with my gyno he is an excellent gyno who did my hysto.
As for the type of mesh they considered it a hernia type repair. However what happened was they found Endometriosis in my stomach muscle. They scraped it out and covered the gap with meshing. A lot of ppl keep telling me they too think it may be my meshing causing this.
I know your not saying it is the problem i have but wow did it help to hear of another problem similar . I am so very sorry you have had to go thru something similar.
This is an awful discomfort for sure. My stomach has now been distended for over a month now. And I have no line of sight showing me that there is an end to it soon.
Orah Deb again, thank you thank you. this gives me something to talk to my gyno about . Much appreciation
  #6  
Unread 09-29-2010, 11:02 PM
Distended Abdomen, Fluid in Abdomen Did Endo Come back?

Hello I had my TAH in 2007 due to stage 4 endo.

this past july I had gall bladder removal. During the surgery they removed 4 Liters of unknown fluid from my abdomen. They put in 2 liters of fluid to flush the abdomen and removed 6 liters! They tested some of the fluid for cancer cells but nothing was found.
I than saw a different dr who told me my belly distention was clearly Ascites. So he did an emergency exploratory surgery. They found no fluid tho. This was done 3 weeks after the gall bladder surgery. I had a colonoscopy done and an EGD both were normal.


Withink 2 weeks of that surgery my belly grew and grew and grew .
I am now 3 months post Gall bladder Suregery and my belly has gone from 34" to 43"
I've gained 12 lbs in those couple of months.

I went to see my Gyno. his first reaction was it was that i needed hormones to get right. and the belly would go away. So we did that for 3weeks. Belly still grew.

Went back to him he seemed concerned and i was than again told it felt like i had fluid in my belly. They even brought in other nurses to feel it. They stated it did says it did not feel like fat belly He seems worried and wants to do a ct scan. by time insurance approves the scan i go back to Gyno , no scan was done and he wants to put me on Phentermine : a weight loss pill.

Ok for one I dont have bad eating habits, 2 I have lost inches in my arms, legs, butt, and my face is slimmer. and 3 seriously? I weigh 175 lbs right now and he wants me on a pill thats for severe obesity. If you take my belly away i look like a normal sized 32 yr old woman. But this belly makes me look pregnant, not fat.

When I lean to the right or left i can feel like a fluid is moving from one side to the otehr. and i move back fast the other way i feel it bulge my side as if it sloshes up against it. but my whole belly doesnt move when i do that. it stays distended . If that makes sense. If i eat even a small meal i feel sooo full and tight. If i excercise my belly seems to swell even more.

I am scared, confused, and getting angry.
I made an appt for the 11th with a Gastro Enterologist .
I upset that my Gyno isnt helping in a way I thought he would. I feel like he thought i was lying when i told him Im eating normal . Cuz than he put me on the weight loss pill that suppresses appetite. I know how to NOT eat when i shouldnt. And the pill gives me the jitters like crazy and makes me not want to eat at all. I think Ive only had maybe 1200 calories in 2 days cuz of the Phentermine.


Anyway, thats my story right now. I feel so very lonely. Anyone have similar problems? or that can offer help.
Is it possible Endometriosis came back.
Is it possible i did have ascitees and its just building back up slowly. Could it be Ovarian Cancer like I read women get fludi in abdomen. I already know I had 4 liters in there at one point.

Frustrated in Misery

Asinthia
  #7  
Unread 10-01-2010, 06:45 PM
Re: Distended Abdomen, Fluid in Abdomen Did Endo Come back?

(((amarshallphotos)))

I am so sorry. I know it can be frustrating to have continued issues following a hysterectomy.

  Quote:
Originally Posted by amarshallphotos View Post
Is it possible Endometriosis came back.
Because you just had an exploratory laparoscopy to see what was causing this fluid issue and no endometriosis was found then, I would not think your problem is endometriosis. However, anything is possible.

In your shoes, I believe I would seek a second opinion from an endometriosis specialist just in case endo was the problem.

I would also seek an opinion from an oncologist to rule out any cancer concerns including but not limited to ovarian cancer.

You might also want to consult with an internist and/or a gastroenterologist.

Additionally, have you checked with any of your doctors to find out if the mess is at the root of your problem as (((OrahDeb))) suggested?

If you are not doing so, consider keeping a symptom diary that you can share with your doctors. Possibly this could give your doctor's a clue as to what is going on.

in there!
  #8  
Unread 10-02-2010, 10:33 AM
Re: Fluid in Abdomen, Distention Dr's Dont know whats wrong please help

I'm sorry I do not have any answers for you. I just wanted to give you a hug. Don't give up on finding an answer. I just went thru a yr of post op problems. Thank goodness I have an advocate, my husband. Without his persistance I would not have had my surgery last week and found the answers to my problems. The doc kept telling me "weight gain, hormone issues". It was none of that. I highly suggest that if you have someone to help you take them with you to all of your appt's. I can only imagine that this has taken its toll on you both physically and emotionally. You are a strong woman. We are here to listen. Please keep us posted.
  #9  
Unread 10-02-2010, 10:55 AM
Re: Fluid in Abdomen, Distention Dr's Dont know whats wrong please help

I agree with consulting an oncologist if the GI Drs haven't helped. You must be so frustrated. Although I have not had this, 2 family members have, and I've seen how hard it is. The GYN is just not on the right track so I hope the next Dr can do better. Hang in there. I hope you get relief soon.
  #10  
Unread 10-05-2010, 12:09 PM
Re: Fluid in Abdomen, Distention Dr's Dont know whats wrong please help

Ladies,

May I just say thank you. Thank you for making me feel less lonely and allowing me a place to vent when I feel like its all building up.

I have been on this weight loss pill (phentermine) for over a week now. I have been walking everyday, lifting light 5lb weights with high reps. I have lost weight in my arms, legs face. The weight loss pill is making me not want to eat. I consume about 800 calories a day . I am drinking lots of fluids.

Yesterday I got very scared. I stepped on the scale and have gained another 2 lbs. Yet i look thinner everywhere (except for my belly) It is still so distended . For the past 2 days I have been so sick feeling with nausea and am unsure why. My Gyno was so confident i would lose weight on this pill. Before this all started happening after my gall bladder surgery I weight 163 lbs. I weigh almost 175 now.
When i wake up my belly while still very bloated/distended looking is not very tight and taut. But by mid morning. It starts getting more and more tight. by evening I am so uncomfortable and go from looking 5 months pregnant to 7. This happens almost everyday . Its a rollercoaster .

If I do have ascites. Does anyone know if it can have days where it is worse than others? Ive always just assumed if you have fluid in your abdomen it isnt going anywhere. Please correct me if I am wrong.

My appt with the Gastroentrologist is Monday.
I dont see how whats going on with me could be weight gain at this point. A lot of me was hoping my Gyno's theory of weight gain just in the belly would be right.

Im still so scared. While other days when its not as bad I start making myself think nothing is wrong and it will just go away with time. But I am pretty sure its not just gonna go away.

Thank you so much for listening ladies. I hope that I can help someone out there somehow.

Thank you so much again for listening

Asinthia
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