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pocket of fluid (long story) pocket of fluid (long story)

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Unread 03-12-2004, 01:06 PM
pocket of fluid (long story)

Hi. I posted something about this in the post-op forum, but maybe it's a cancer-related complication. (The other post is called "post-op 'dance partner' " if you want to read it...)

About 2 months after the hyst. and about a month into radiation treatments, which I was getting 5 days a week (4 external, 1 internal brachytherapy -- outpatient type) I developed a small swelling on my right side, a little below the scar from the laparascope. The swelling was so slight that I thought it might be "in my head." Well, it was abdominal but you know what I mean, right? LOL!

Around the same time, I was getting painful spasms in my right buttock/hip, wrapping around to the front of my leg and downward. I figured it was coincidence but mentioned both to the doctor anyway. He scheduled a CT scan and the swelling turned out to be a pocket of fluid, which was pressing on the sciatic nerve. They did a CBC which came back normal, so it wasn't infection. He prescribed some pain pills and hoped the fluid would naturally re-absorb, but the next day even with pain pills I was unable to put any pressure on my right leg.

They admitted me to the hospital right away, and put a drainage tube in to catch the fluid, which they are fairly certain is lymphatic fluid. It's not an infection and they say it's not urine, because I'd be "much sicker if it were" -- plus, while it's the same color as urine, it's completely odorless. (One of the doctors called the attached fluid-catching bag my "dance partner!)

I've been trying to find something about this using Google, but so far I haven't found anything that seems to relate to my situation in any way. Of course, I'm sure I'm not using the right keywords...

Does anyone else have a drainage tube, or is anyone else dragging a leg bag around? Even if it's not exactly the same type as mine? I'm not just looking for info on the specific condition -- I am also wondering how other people feel about having a "dance partner." Mine is temporary, not permanent like a colostomy, but I still don't like it. I don't get out much, and since I have to measure the output it means I have to carry a measuring jar with me. I Really don't feel like going anywhere that only has a public stall-type restroom. I'm sure that eventually I'll come up with some creative way to rinse out the measuring cup while still in the stall, but until then I just don't want to go out.

The leg bag isn't obvious -- I live in flannel pants, and my husband made me comfortable straps to attach the bag to my leg -- but for some reason I feel somehow embarrassed by the whole thing. Even though no one can tell, it's just weird when fluid that's supposed to stay Inside my body is something that could be seen if the cuff of my pants should happen to hike up.

Of course, it doesn't help that it still hurts to walk -- not an incentive to get out of the house, either. This is my first day not to have to go to the hospital for radiation therapy -- a good thing, and yet, going there was my daily outing.

Sorry this is such a long post. I'm just feeling kind of weepy at the moment, looking for someone going through something at least a Little similar...

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Unread 03-12-2004, 02:12 PM
pocket of fluid (long story)

Hi Empresse,

I posted to you in another thread where you posted to Lymph Nodes. Sorry you are having a hard time. But congratulations on being done with radiation. I was sad in a way when it was over too. The people were so great! I miss them.

Anyway, how long do you have to wear the drain. I had drains from my abdomen for a couple of weeks after surgery and I hated them. I have a groin seroma, too. My Doc has not mentioned draining it yet. But, I have not been in the same kind of pain as you. I am having hip and buttock pain but he is going to send me to an Ortho Doc. He has not mentioned the groin seroma as a cause of the pain. I will ask him Tues. when I see him.

He also mentioned a possible hairline fracture from a bone biopsy on my lower back. I might have to wear a brace for that. Too scary.

Good luck with the drain and it getting rid of the pain. Let us know how you are doing.

Take Care,
Unread 03-12-2004, 02:32 PM
pocket of fluid (long story)

Thanks, Sharon! I was replying to you in the other thread while you were replying to me here!

Is a seroma the technical term for "pocket filled with lymphatic fluid?" I looked it up but mostly found veterinary sites LOL. This link http://www.mesothelioma-symptoms.net...pic/322-1.html makes it sound like the same thing.

I have NO idea how long I'll be wearing this contraption. 2 weeks so far, and at the very least until St. Patrick's Day. Maybe for a joke I should inject some green dye into the bag LMAO!

The last doctor said something about teaching me to inject the alcohol into the tube myself so I can do it at home instead of going to the hospital. That made me suspect that I have very little chance of losing this tube/bag thingy as soon as the 17th of March.

Thanks for the good wishes! Let me know what your doc says, ok?
Unread 03-12-2004, 02:42 PM
pocket of fluid (long story)

Hi Empresse,

I looked up the definition of seroma on dictionary.com and this is what it said:

A mass or tumefaction caused by the localised accumulation of serum within a tissue or organ.

I did not know what serum was so I looked that up to and it said:

<haematology> The clear portion of any body fluid, the clear fluid moistening serous membranes.

2. Blood serum, the clear liquid that separates from blood on clotting.

3. Immune serum, blood serum from an immunised animal used for passive immunisation, an antiserum, antitoxin or antivenin.

So in answer to your question, I am more confused than ever! LOL!

I don't know if lymph fluid is the same as a seroma or not. It sounds like you are in this thing for the long haul. At least your Doc took you serious and is doing something about it. My Doc always takes me serious too thankfully.

Lets keep each other updated.

Unread 03-12-2004, 09:05 PM
pocket of fluid (long story)

The doctors don't know what this fluid is, or long it will last? Oh my. No wonder you are down! I am sorry. It sounds awful! Do the doctors have ANY ideas for fixing this? Or even for identifying what it is or what is causing it? You should be getting something better than that! I would press for better answers or a referral to someone who can help you.

I hope they solve this soon!

Unread 03-13-2004, 11:16 AM
pocket of fluid (long story)

Sharon -- hehe now I'm just as confused! Will continue this conversation via PM.

Janie -- well, the best answer I've gotten so far is that they're "pretty sure" it's lymphatic fluid. I don't know why they can't just take a sample of it to figure out *exactly* what it is! I need to ask better questions. When they first started treating this, I was in so much pain and then on such heavy pain medication that I couldn't think clearly enough to ask the right questions.

The last appointment was supposed to be just to see whether my incision was infected, and my surprise at their decision to start doing the alcohol injections totally made me forget all the other questions I had.

It's a wonderful hospital full of brilliant doctors and nurses and techs, rated among the top ten in the country by USA Today, but the problem is: so huge that communications often break down among the people who are treating me. The worst confusion happened when I was being discharged from the hospital. A social worker came to my room and said that home health care would be coming to my house. I asked if my insurance covered it, and she never got back to me to tell me. I said that if someone would just teach me how to take care of it, I'd do it myself (if insurance wouldn't cover home health care) BUT -- they weren't going to let me out of the hospital because somehow they got the idea that I didn't know how to take care of the apparatus!
I finally convinced them that they had gotten the wrong idea, but THEN my discharge instructions said home health care would get in touch with me. When they didn't, I asked my radiation nurse for the main number ... she called the floor of the hospital I was on, and they gave her a TOTALLY different story than what was on my discharge papers! They gave her a phone number I was supposed to be reporting my output amounts to, and a schedule for changing my dressing. Neither was on the discharge papers, PLUS they sent me home with no supplies or instructions for changing the dressing.

I was steaming mad.

March 17th is my next appointment, and I will be armed with a list of questions written on paper! That way, nothing they surprise me with can keep me from articulating my questions! I hate surprises (when they don't involve holiday gifts.)
Unread 03-13-2004, 05:42 PM
pocket of fluid (long story)

Do you and I go to the same hospital? It sure sounds like it! I had so many different stories from so many different people, it was so very, very, frustrating!! After my initial diagnosis, when my head was in a total fog, I kept getting different instructions from different people. When one is dealing with cancer, the LAST thing we need is additional confusion! I kept hearing how 'lucky' I was to have all these fabulous doctors, but it sure would have been nice if they communicated with each other a little bit better. I had a rash that took over 2 weeks to be diagnosed because they kept saying it was someone else's responsibility. I finally put my foot down and said I didn't care who or what was responsible, I just wanted the itching to stop!!! FINALLY, the gyn/onc saw me and knew immediately that it was an allergy to cisplatin and easily cured with a cortisone blister pack. Sheeze. What good are all these great doctors, and a huge facility, it they are unable to diagnosis a simple allergic reaction?!!

I am sure this same thing goes on in all major hospitals across the country. Bureaucracies aren't known for their efficiency!

I hope you get some answers and solutions on Wednesday!
Unread 03-14-2004, 08:14 PM
pocket of fluid (long story)

hehehe Janie sounds like the same bunch of people! ah, bureaucracy.

A couple of friends came to visit me this afternoon, and when I logged on here I had a couple of PMs (thanks!) so I'm not feeling quite as weepy and isolated today. My husband is absolutely wonderful, but of course he goes to work so I'm alone for hours. I am lucky enough to have lots of friends and even some family nearby, but it's just weird for me not to go anywhere (including to work).

I'm looking forward to being able to go for walks. My cousin is going to lend me a cane, so I should be able to handle a little more walking. I can walk now, at least! It's a matter of deep achiness/soreness now, which is bearable, and not inability to put any pressure at all on the leg (which was unbearable).

Oh, and I have come up with a simple idea for rinsing out the measuring cup without emerging from the bathroom stall. Carrying a water bottle full of tap water with me. How silly that I didn't think of it right away. I've been carrying a bottle of drinking water with me everywhere I go. All I have to do is fill a different bottle and put it in my 'bathroom bag' with the notebook and measuring cup. Now I just have to get the energy to go somewhere!
Unread 03-17-2004, 01:05 PM
tears in my ears

Okay: it is a lymphocele : Cystic mass containing lymph from diseased lymphatic channels or following surgical trauma or other injury. [http://icd9cm.chrisendres.com/index....&recordid=7111]

The doctor says it differs from a seroma in that a lymphocele continues to produce new fluid, while a seroma does not.

I wonder how they were able to tell the difference via CT scan. Will put in on my list of questions for next week.

Well, my tube was clogged, as I suspected, and they replaced it with a smaller one (hoping that the lymphocele will shrink -- I know, it sounds backwards -- 'she's clogging this one, so let's go smaller...'). WOW did that hurt. They warned me, though. I'm ok with pain, as long as I'm warned. Unclogging hurt, and then they numbed the area, which also hurt, and then they removed the old tube which only hurt in a deep-down sense. Inserting the new one was painless. I kept my eyes closed the whole time, and was crying -- I had to laugh mid-cry because I had tears in my ears!

I wore green plaid flannel drawstring jammie bottoms & a green turtleneck, so at least I didn't get the dreaded St. Patrick's Day pinch! (Doctor Who wasn't there this week -- he's the one who threatened me with it last time LOL! Oh, and I'm sure it's really Dr. Hu ...)

We'll see how it looks next week. I may only have a couple more weeks of this!! They still haven't taught me to inject the alcohol myself.

Oh, and I forgot to tell you -- in the part about confusion -- they hadn't given me any straps to fasten the bag to my leg, just left it dangling loose. So my husband made me canvas tie-on straps. The medical staff was quite impressed. Apparently the rubber straps that come with it are quite uncomfortable. So in that instance, the confusion brought good results.

Happy St. Patrick's Day! May the luck of the Irish be with us all!
Unread 03-19-2004, 11:31 PM
pocket of fluid (long story)

Howdy - I just answered a later post - but you are not alone. My drain was a JP (for Jackson-Pratt) - a long tube with a big bulb on one end. I didn't like it inside my sweats because it made me look as if I had boy parts - GRIN! I pinned the bulb to the top of my sweats and made a little purple fabric bag for it, with a ribbon around the top, so it looked like a small purse. It was generally covered with a sweatshirt - but in case it poked out it was less gross - and way more comfortable.

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