I am waiting on an ultrasound to determine if there is enough fluid in my abdomen area to support a fluid drain.
I showed I have had some ascites present from some CT scans and x-rays several months back. I have also shown some tumor activity which apparently according to an x-ray about a month ago has also increased quite a bit in my abdomen.
So I just wanted some insight from others who are dealing with ascites-particularly if you also have tumors in the abdomen, intestinal areas etc.
My stomach has slowly been increasingly distenting . I am quite uncomfortable. Part of the swelling seems to either be tumor growth on my intestines says pushing upward into my rib cage area or possibly the ascites fluid could be contributing to tumors and organs being shoved up into my rib cage. This is where I have some questions.
Is there a difference in the uncomfortableness in the abdomen area if it's ascites compared to if it's tumor growth? I am having trouble bending over even had a 30° angle because everything just shoves up into my chest and lung area and makes it hard to breathe.
There is just an extraordinary amount of pressure and pushing and swelling. I am hoping it's ascites because hopefully fluid drainage will relieve me of the discomfort and pressure. What if it is tumors? Then I don't know what to do with how uncomfortable this is and how to deal with it. I am already in hospice. Due to the covid quarantine and other issues there has been a fair delay in getting me diagnosed with ascites. I really needed to have this looked at well over a month ago but with the availability of appointment times and some reluctance on behalf of hospice care to do multiple tests that might be redundant.
But right now I am struggling with breathing when I'm laying flat in bed or bending over. I don't know if part of all of that would be due to the tumor activity in my lungs and over my GI tract and in my abdomen. My stomach is horribly distant and I also end up with a lot of unreleased gas in my stomach. I can't seem to burp well easily.
For those of you dealing with ascites can you tell me what it feels like and perhaps if the drainage release pressure into what extent and how it gets better? Are there other things I can do while I'm waiting for this ultrasound to complete its course and get set up to have this drained?
Thank you very much.
Written by
Natsmb
To view profiles and participate in discussions please or .
Hi, my personal experience of ascites was that my abdomen up under my boobs was very tight and the skin was sore in that I hated clothes brushing against it. I also couldnt bend over. An ultrasound and then CT scan showed ascites and I had 3 litres drained the first time, then 2 weeks later another 3 litres. Did feel relief and also lost about 5 lbs in weight !The chemotherapy did clear up a third lot. A CT scan would show what is going on, I ope you manage to get something arranged.
Hi sorry to hear your suffering with ascites,its so horrible.From what you describe it sounds like you definetly require a drain as its effecting your breathing and sleep I expect.I would persist with your doctor about getting this done asap,its not right to leave you feeling so uncomfortable.I hope you get it sorted quickly and feel better soon.xxx
Hello... I wonder if you might also have pleural effusion? Perhaps ask them about this too as the relief from a lung drain is epic! Good luck whatever happens and I hope you feel more comfortable v soon xx
So, bad / actually very good news! Got in an ultrasound after my hospice nurse went on a bit of a rant about the delay. (Good hospice nurse!) Ultrasound showed that I have the size down in my pelvic area shoving all my intestines up and that I do in fact have some plural effusion going on in my right lung still but I do have a catheter for that so some days it drains and some days it doesn't and maybe it's starting up again with the fast fluid buildup. so I'm just very happy that it's been diagnosed and I can get it addressed because it's been a while and I just very frustrated. But I'm happy now! Thanks for your feedback. It does help.
Wow your story sounds exactly like mine a month ago. You need to push nobody took notice of me until it affected my breathing which coincided with my CT scan which showed I had blood clots on the lungs. They started me immediately on daily fragmin injections as this is dangerous. The hospice did ultra sound which agreed with CT scan fluid in abdomin. Two days later over 4.85 litres of fluid drained off. Scan showed cancer which had been stable all active again and I start chemo Again next week. Please push your inability to breath to get help. I could not eat drink or bend. I am ok after draining. I am 4b on ovaries peritoneal liver spleen bowel first chemo July 2018 to Feb 2019 avastin Feb 2019 to march 2020 then ok till end October 2020 when abdominal swelling blew up in 4 weeks. You need to ask hospice for help they were brilliant for me draining this. Good luck
I swelled up with ascites, very uncomfortable, skin tight, felt nauseous and looked heavily pregnant. Drain helped immensely: had 3 before starting chemo which took care of it completely. I do hope you get something arranged soon.
Do the nausea could also be part of this? That would be nice-to have the nausea go away. It has definitely increased in frequency in the last two months. That would be nice.
I suffered with painful ascities several times. The first time at diagnosis. I was unable to bend and looked 9 months pregnant. I went to A&E after several vomiting episodes and was admitted onto the ward. Ihad 6 litres drained and immediately felt so much better. However it built up very quickly again and it was only really after starting the chemotherapy it disappeared. You need to get this done as soon as possible. All the best. xx
How long between this episode (at diagnosis?) and first chemo my dear? I waited 44 days between diagnosis and first chemo, having to have 3 drains. I do think 2 of them were easily avoidable if I’d been given chemo sooner. I still feel quite angry about this a year later and wish I could just forget it.
I had the first drain( at diagnosis) and about a week later I had a second drain, fluid had built up really quickly another 6 litres. At this point my oncologist said you are not going to leave this ward until you have had your first chemo. It was given to me on the ward and one of the chemo nurses stayed with me whilst I had my first infusion of carboplatin. My oncologist said he would not give me taxol until the second infusion as I had had been quite poorly.To be quite honest the chemo was wonderful and I felt really well again. I had the debulking surgery after 3 chemos.
I hope that you are feeling better now. It is difficult to look back and realise that we are sometimes not treated as we should have been. I still think about my GP who wasn't keen to send me to hospital. I made the decision to go to A&E and was diagnosed within two hours!
Wow! I'm always so thankful for the doctor that listened. Since I'm basically in hospice, and that I've hit my limit with the number of chemotherapies I've been willing to subject myself to- I suppose I'm definitely dealing with the ascites as a permanent situation. For me, the main goal is to simply get comfortable.
Yes. That's is exactly what I feel like. I'm going now that they have the rest results from the ultrasound, they will not be so lollygagging about addressing the issue-or else I'm headed to the ER! This is so uncomfortable. I'm not a big person, so I think docs look and expect the ascites and plural effusions to show up really big when they do these imaging tests. They don't. While I'm telling them, " There is waaaay more in there then you think. Humor me please and drain it!" They just think I'm a hypocondriac. Then when they drain they are always blown away, "Where does all this house in such a small frame?!"
And every time, I tell them I wish they would have taken me seriously right away instead of dismissing it as unlikely.
I am on hospice as well and I didn't realize that I could get any care besides the pain medication that I'm on and that we are always upping the dose. From what you are describing, I feel like I might have ascites as well. I told my husband I feel like I have a baby growing out the right side of my abdomen area. My skin hurts to the touch. Hard to breathe as well. I'm going to talk to my hospice nurse on Monday and see if I'm able to get checked and hopefully get some relief. I have believed that being on hospice meant no more hospital care. I have full insurance as well through my husbands work. Please update how you are doing and if you have any advice, I would love to hear it.Thank you
I am so sorry to hear that you too are dealing with this. I am in the US. If you are not in the US your hospice protocol may be different than our's in the states.So actually, I've had a very good outcome! I finally received my paracentesis. I too thought the same thing that you did about hospice not being able to treat anything that wasn't related to simple pain management. My hospice could not justify paying for an ultrasound at first but I continued to push it and I had a very nice advocate nurse who pushed it also.
I found out that if I want treatment that hospice cannot pay for or tests that hospice cannot pay for, I can discharge myself from hospice for a specific duration of time and then when I'm ready I can call my oncology doctor and have them get me back into hospice one everything is over with. Apparently this is a common situation especially if someone has been on hospice for a while.
So that is what I did. I went to the emergency room because under hospice and insurance regulations insurance will still cover ER visits. they did a second ultrasound on me and again told me that I didn't really have a lot of fluid in there. I begged to differ and explained that the four times that I'd had an ultrasound to explore fluid in my organs, the ultrasound had been very inaccurate about how much food was actually there.
I heavily stressed my pain and how much pain I was in. This was a pretty genuine situation so there wasn't any acting involved! The ER agreed to hospitalize me as I was no longer with hospice care anyway. It was a bit overwhelming because with covid and all I was a little intimidated about having to stay in the hospital but eventually after observing me for about a day the doctors agreed to give me a paracentesis.
As it turned out, I surprised them all. I had almost 2/3 more amount of liquid in my stomach than the ultrasound revealed! Their guess was 300 to 500 ml and the radiologist withdrew 1300 mL of liquid!
So that was a very happy outcome. And the pressure released almost immediately. Anyway, I'm very thankful that.
I would say it was very much worth pursuing. If you wait too much longer not only will you be in absolute misery more so than ever but you could possibly damage something you and worse. I continued to argue that hospice care included palliative care. But just like any other provider situation, if you're doing any specialist procedures, be careful in certain that they're inside your insurance plan and if they're not find out who can be included etc. Usually the emergency rooms do this for you but I've known a couple times were they haven't.
Thank you for all the information you have given me! I am in the US. Colorado. As soon as the sun comes up I'm going to reach out to my hospice nurse. Going to start there but I'm going to do everything I can to get it drained!!Thank you Sharleen
Then I would like to urge you to definitely advocate for yourself. I checked in to the ER on Wednesday afternoon last week, and I live in Albuquerque New Mexico, I had to really challenge them to permit me to act in my own best interest. I insisted that they give me evidence for the reason that they could not do the paracentesis rather than tell me they wouldn't just do it. I would say that at least three times during my discussion with the ER doctor, the ER doctor stressed that it was minimal fluid and there wasn't really going to be any reason to try taking it out because it didn't seem like it would be effective in what I expected it to be effective in IE comfort. And I said to them, I'm not leaving this ER until we find out the source of this pain and pressure because it is causing a great deal of discomfort and pain and I don't think I can live with it much longer. At that point, bless his heart, he understood my resolve and agreed to go ahead and admit me to the hospital. The same thing happened when I reached the hospital. They did an ultrasound on me and insisted there was not very much fluid represented. Again I had to reiterate that then I wasn't going to leave until I was sure that they had narrowed down the source of the pressure and pain. They insisted that it was probably the tumor and etcetera Etc. I said oh, you could be right but what I'd like you to do then is to verify it and tell me why you cannot do the paracentesis. I feel that I have plenty of experience with ultrasounds not being accurate and because of this experience I am not willing to take the ultrasound as the final answer. Even if there's just a little bit of fluid I would really like it out. I said it's possible that with the tumors there's not enough space for my stomach to accommodate even that small amount of fluid and if it helps to take it out I'd like to take the chance. At that point they went ahead and scheduled that paracentesis. Again like I mentioned in my last reply before, right before they paracentesis they did an ultrasound and a CT scan and again they just declared it was minimal amount of fluid. They suggested that was about 500 mL but they would continue with the paracentesis . Which is a good thing because I still wouldn't have left the hospital until they had figured out how to relieve the pain and I'm sure they expected the paracentesis would be a disappointment to me and what they wanted to do iwasshove it full of medication. My problem with this is that the medication was not helping and I felt it was worthwhile tell them so and I also mentioned that again I had prior experience with fluid buildup and that at some point when the fluid reached a certain volume the pain and discomfort increased exponentially and that I could not see myself leaving without coming back again very shortly if this wasn't addressed now. (I kept bringing that up because I hoped that they will remember this incident the next time they are faced with it- patients know their bodies!!!
Of course they continued to proceed with the paracentesis. Here's where it gets even more interesting. The protocol is after the paracentesis, they let the fluids settle again and then they do a CT scan. The doctor that was on call (thank goodness ) , stepped up and said we need to maybe look at doing a drain if the fluid builds up because 1300 ml was a lot more than we expected and a drain would be a good idea. And I said I think there's still more in there and perhaps it's still building up very quickly that I don't know but I do know that there's more in there. The doctor thankfully agreed with me and this afternoon I had the drain put in. It turns out that on top of the 1300 mL of fluid which was WAY beyond what they expected originally, ANOTHER 2300 was drained prior to that drain being put in! That is a total of 3300 ml, that is a 3 liter bottle of soda and over half of a 1 liter bottle of soda. All in my stomach! I am a 5-foot 9-inch woman very slender build who barely weighs 112 lb. (Probably 6 pounds less now!)as they just took out all this fluid. I am very, very grateful that my prior experience and my intuition insisted that I pushed this because honestly, I feel like it would have been a huge disaster later if not a heart attack or lung collapse which can happen if it's not treated properly.
So do your best to stand up for yourself and if you feel your concerns are not being addressed or are being sort of dismissed then make sure you ask for a patient advocate. Thankfully, when they handed me the patient advocate rights paper and I signed it I looked at the gal giving it to me when I said I do like a copy of that because I feel like if I'm not able to get what I need here I'm going to need that. Anyway, it all works out for the best and I'm very very thankful and grateful and I don't hold any hard feelings at the doctors and nurses because even though they didn't necessarily agree with me, they respected my desire to treat it anyway. What a shock though! Please let me know how things go. I don't know how distended your stomach is or if you're feeling sharp pains in your shoulder area or your rib cage or lower back at all or if you are having any challenges with bowel movements but it sounds like you probably have a great deal of fluid there or there must be an infection if there is not a great deal of fluid. Yes yes I do think that there's a legitimate expectation that tumor cells do create pain and suffering especially if they're in the place that you're feeling fullness but not perhaps to that extent that quickly. So feel free to expect the doctors to disprove their theories rather than just act on their own ideas. At your expense. Before you discharge yourself from hospice though, make sure that you have a plan in place with them about your expectations for returning to hospice and what they can and cannot do for you in regards to this situation where it to repeat. Because different hospices have greater or smaller sizes will provide different levels of support. So what one hospital might pay for such as draining ascites out of a catheter, another hospice that might be smaller and less financially supported will have less ability to put money into that. They're not all going to be equal and if you're going to require a different set of a medical care once you're back into the hospice program, you might need to change hospice program if your current one cannot support your changing needs,. They are very sweet people but their job is not to diagnose and treat their job is just to make you feel better while you're dying!
Also, no doubt you already know this but make sure that whatever services you are transferred to , that your patient care coordinator checks is covered by your insurance. I got digged last year for a service the hospital used that was outside the insurance network. Big hugs and best wishes!
Thank you so much for your detailed response!! I so appreciate it. I explained what is going on to my hospice nurse and she is going to let me know what options are available to me tomorrow. She is coming over. This was her response.
We do do therapeutic paracentesis when needed for comfort. Let's do your visit tomorrow and maybe I can take a look and we'll get you scheduled. We use st Mary corwins radiology department to have these done.
I am very excited to see her tomorrow and I will keep you posted. I understand that the cancer is growing inside me but the pain is absolutely awful. Worst pain I have ever experienced. My right side is definitely extended and taut. But not like photos that I have seen where they are huge!! It hurts to breathe!! I will definitely let you know what I find out tomorrow. I feel so blessed that I saw your post!!
Having just finished draining out the rest of my ascites as of yesterday afternoon, I believe I completely have every sympathy in the world for what you're going through right now. It is it is truly unbelievably painful for what it looks like so innocent. I absolutely suggest that you firmly set in motion a strong pain control plan. The pain control plan will be needed in place especially right after your drained because all of that tissue has been stretched out and jostled and pushed at for months and months and months probably and when they removed that fluid from me yesterday, the pain was so intense, and worse than what I had dealt with with the initial societies. However, part of this was due to them having skipped my pain meds prior to the procedure because my pain medicine was due just an hour after they had taken me to pre-op. So when I returned, the well-meaning but probably not the right thing to do nurse thought it would be best to give me the milder pain relief until it was time for me to go back onto my face pain relief method and this meant that I was without effective pain control for about 9 hours and I had lost the nice pain-free balance I had prepared so it was very painful and after you get out of surgery all those poor abused stretched out tissues are just protesting like mad! (I'm sure I would be too if I'd been stretched and prodded for several months!) Once I got back under the pain regiment and caught up with the pain it was better. I would make very sure before you go home to have that well and truly established in place. I used to be somewhat concerned about painkiller but at this point, what do I care. I want what's left of my time to be pain-free and enjoying the company of others and if and when my miracle that I'm praying for happens, I am pretty sure dealing with getting off pain medication will be far less painful than anything I've endured in the past couple years. My sweet pain doctor, bless her heart, told me to just take as much as I needed to get to the place where I was happy and I decided to take her up on it. I'll be praying for you. Please, as pain free as possible, and quick recovery.
Natsmb, I am actually checking in to the hospice house here in our city tonight. The first thing they want to do is try to get the pain under control. My hospice nurse advised that I go and let them do that and that I will end up getting the procedure. I feel it's a great option for me as my family can visit, 2 at a time, can even stay the night with me! If it comes push to shove with the procedure I will just go to the ER. I really don't want to be in the hospital environment right now anyway. I will keep you posted!! Again, thank you so much for your post and your replies!! Really helps! I will make sure I'm well stocked on pain meds before I come home 👍👍😁😁
I say that is very good advice. You definitely need that pain under control with Good Meds because from the length of time it says you've had to deal with this, I suspect when everything is taken out it's going to be a bit painful for a while. Probably a good day and a half. I am so happy to hear that you're getting help! Being in New Mexico, I don't get family at all. Wah! And I think for sure you'll get that paracentesis. Even if they don't really I think that there is quote-unquote enough fluid, if you feel like garbage they need to respect that and I'm sure they will. Oh my goodness, I really hope that you're able to get the relief you need. I wouldn't wish this on anyone.
Natsmb, I totally feel your pain. When I was first diagnosed, over 2 years ago, I was also short of breath and could not bend at the waist bc my abdomen was so distended. I had 2.5 liters of fluid drained and felt immediate relief in spite of having tumors in my abdomen. I started chemo fairly quickly but had it re-drained 10 days later for 2.8 liters of ascites fluid. In my experience, all of that fluid was pushing upward bc it had no where to go. Pain medicine was given while I was waiting (Morphine IV) which did give me some relief. It sounds similar to your case. I hope you can get this taken care of quickly. 🙏🏻 Nadie
I was treated quickly bc I went to the emergency room. They move things along much quicker that was and shortness of breath is an acceptable reason to go to the ER. Good luck.
Thank you so very, very much for sharing because your experience just confirmed what I wanted to do and gave me the insistence I needed to pursue this and not feel intimidated and unheard when I went to the ER. It has helped so much having everybody share their experiences and situation.
Hi. I'm so sorry you're experiencing this. It sounds very much like my experience in 11/2019 with the amount of fluid and discomfort you're talking about. I couldn't seem to get anyone to treat me or take me seriously. Then I went to a gastroenterologist for a pre interview before a colonoscopy, explained my situation to her, she was concerned enough to order me a CT scan. Next day she told me to go to the ER to begin treatment for ovarian cancer, that's what the scan showed. Had 2 liters drained and debulking surgery 3 days later. Sorry, not a happy story, but pls get looked at right away is what I guess I am saying.
Also, thank you for encouraging me. I really appreciate it everybody sharing their experiences because I finally felt like I was not making a big deal out of nothing. Thank you very much!
Had a question for you- seems like you ended up dealing with that shows interested for a while- when you were finally treated, did you find yourself really tired and site for a while? I'm just trying to compare my healing process to see if it's par for the course- I ended up with quite a bit of pain the first couple days and now I'm feeling kind of wiped out. Granted, the docs discovered I had a bladder infection that was resistant to typical antibiotics and I did have to have a drain put in. Just wondered what your immediate experiences were.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Not trying to offend anyone, only trying to help others get through it the best way i know how, 
I need a direction to the rest of my life journey …
OC Symptoms but normal ultrasound, CT Scan, CA125
Would some of you lovely ladies share you stories with me so I can show my mum she will be fine?
2nd line treatment...can anyone share their experiences/successes
