Very concerned - ascites?

[kehen]

Hello all.  Let me start by saying I know no one can diagnose me, and that I know I need to wait for testing/results, but in the meantime I have a few questions that I can't seem to find answers for in all my searching, so I apologize for what are probably (to you all) redundant/hysterical questions ;)  I have an U/S scheduled for tomorrow.  I am 99.5% sure that I have ascites - when I try to research it, I get a lot about liver/heart disease, and ovarian cancer.  Are there other causes for it?  I know that I don't have liver/heart disease, so that only leaves one option as far as I can see, especially combined w/my other symptoms.  I look like I am 3-4 months pregnant (I'm a pretty slim person so it's quite obvious.)  Low back/abdominal/ovary/hip pain and tenderness - shooting pains in left ovary region and left "love handle" area, along with a sunburn sensation on the skin in that area; gassy, pressure, increased pain w/standing, all seems to get worse as each day goes on. I guess I'm what you'd call perimenopausal (early - started at 38) & get about 3-4 "periods" per year, mostly just old blood, brown, etc.  I have no digestive, bowel, or urinary symptoms (other than a bit of pressure and occasional minor urgency) that I hear others talk about. Sometimes a bit of upward pressure in the diaphragm area, particularly if I'm sitting, as I'm so puffed up.  Ascites seems like a key to me since I can find no mention of it that is not related to cancer (absent liver issues.)  I KNOW that something is wrong; I just don't know what.  Would benign ovarian cysts cause ascites?  Thanks for listening - I'm pretty stressed out.

[HVAC]

I have a friend with diverticulitis. It is very painful. He ends in the emergency room often.

Alex

[HVAC]

You could see a gyn oncologist they deal with more complex cases.

Alex

[kehen]

Am continuing prayers for you (I'm the custodian at my church, so I get a fair amount of time alone in the sanctuary - I don't think God minds if I talk to Him while vacuuming!)

Well,  I've just about had it & don't see how I can wait 8 more weeks for that ultrasound. The pain gets the best of me sometimes, especially trying to sleep. The feeling that my leg(s) have gone to sleep is troublesome & now more burping & evening heartburn/indigestion. Still looking pregnant w/lots of pain/pressure. Feeling like I should contact my GP again as he's the one who seemed to really listen & be concerned (sent me for initial u/s & then on to gyno, who I kind of feel discounted my symptoms somewhat & seemed focused on GI, although she did order the ca125.)  Is it overkill to ask to see a gyn/onc? I feel they would get to the bottom of things faster,  but I could be wrong.

[HVAC]

You can complain. Your pain is real. You can pray for me I think that is why I am doing well are those prayers.

Alex

[kehen]

I truly appreciate your responses more than you know - especially from someone like you, who is dealing with so many things with obvious grace and strength.  Helps me to put things in perspective.

I guess I assume that since the cyst is there, it must be what's causing the pain, but perhaps that's not necessarily true? I had a C-section with my youngest child (now 6) - only surgery I've had. The only GI symptom I have is some gassiness (everything makes me burp!) and a very mild nighttime indigestion/heartburn type feeling. No bowel symptoms to speak of. I'm just so puffed up (stretchy pants are my best friend), crampy, generally ouchy, sharp pains in left ovary & pretty much everywhere else in the pelvic area, peeing a lot and very tired.  Pain meds help, but I don't like taking them.

I guess I need to just power through the next 8 weeks until the ultrasound to see if anything has changed. I work 3 different PT jobs and homeschool my kids, so I'm struggling with feeling poorly and still juggling everything.  

But my goodness, knowing what you have endured & continue to live with - well, it just makes me want to smack myself for complaining!  I have no right.  I'm glad that you have found joy in simple things - when it comes right down to it, that's what life is really all about.  You have wisdom that few people find.  I'm going to be praying for you (I hope that's ok).  

[HVAC]

That is a very good sign! It has a lot of false positives. Women's ca 125 can up to 1000 and no cancer. I would do a happy dance over a 7.

You have not ever had abdominal surgery have you? If so you could have scar tissue which can be painful. Also have you ever had your gallbladder out? Sometimes that pain can go down to the lower quadrants. Also sometimes women get endometriosis which adheres to an ovary. That can be painful.These are only suggestions take them or leave them.

My lower pain was a blocked bowel.

I know something is going on. I guess I just wish for other women that they turn out to not have ovarian cancer. I may not see 55.  It will eventually kill me. I will be in chemo for the rest of my life. I would not wish ovarian cancer on my worst enemy.

I get what you are saying. It took me years to finally get an ultrasound. I went to a GYN, GI, Heart Specialist, ER doc, finally a GP did an ultra sound. There was no doubt I had cancer from the ultrasound. With out anymore testing they knew it was cancer. It turned my life upside down.

After my surgery they did the genetic testing. Then they found I had the BRCA 1 mutation which means my cells do not die like they should. I also have a 90% of triple negative breast cancer. I also have a rare form of ovarian cancer only 5% of the 2% of women get.  Before that I was diagnosed with a rare form of Multiple Sclerosis. I had my first neurological hospitalization in 1965 and I was not diagnosed with MS until 2009. I grew up with MS not knowing it.

I understand fear, frustration, anger, and sadness. I understand all of us want to know what is wrong. We also need validation. My doctors used to roll their eyes at me now they call me stoic.It is important to have a GP who is in your corner.

The irony is I am happier than I ever have been. Pain or weakness does not bother me. I am just glad to do mundane things like walk my dog or do dishes.

My News Year's wish for you is that you don't have OC. Also that they figure out what it is and fix it.

If you need to ask a question or need support I am here.

Alex





I know what is

[kehen]

My CA-125 is 7.  I know the test is not all that reliable, so I don't know how much of a good sign that is, but I'll take it! :)

[kehen]

Yeah, I can understand that in the absence of a complex septated cyst, ascites, pain -- but when all those things are present, for her to say something like "you need a colonoscopy - it could be your bowel or something causing your pain" -- well, I just thought she was nuts & felt like I had stumbled into the Twilight Zone of Gynecology ;)  And after reading so many stories online of ovca being misdiagnosed as things like IBS & diverticulitis, it made me a bit angry.  Thank you for humoring me - makes me feel not so alone.

[HVAC]

If they can't find anything gyn then GI is where they go next.

Alex

[kehen]

Yes, you're right, I did just have an ultrasound.  I guess I just have myself worked up and 8+ more weeks in pain, looking pregnant, & feeling rotten sounds like forever. Feeling a tad sorry for myself perhaps ;)  A CT scan has not been recommended as of yet.  I just got frustrated with her rambling on about GI when I don't have GI symptoms & felt like she wasn't focusing on the matter at hand. I think that after seeing how the u/s tech placed everything that is really on my LEFT side on my RIGHT side on the report, I don't have great faith in the medical community at the moment.  I know that I need to just rest with my heating pad and try to relax!

[HVAC]

If the ca 125 is less than 40 I would not worry. The ultrasound seems like a good move.  Nothing will really change in 8 weeks. Didn't you just have one. My ultrasound showed all my cancer. Have you had a CT scan? I was sick for years before they would do an ultrasound. They sent me to a GI guy. He was arrogant. I had fullblown cancer and he said I do not need to do teats you have IBS. I had a blocked bowel.

Alex

[kehen]

Just a quick update.  My gyno sent me for a CA-125 (drawn today) & scheduled a follow-up ultrasound in 8 weeks. She kind of annoyed me because she asked about bowel changes, etc. & when I told her that I was going slightly more frequently, though no diarrhea/constipation, she started rambling on about GI issues and how I should have a colonoscopy, going so far as to give me a referral paper for the GI. I think she's out in left field worrying about GI when I have no GI symptoms, so I'm not sure where that all came from.  I understand that CA-125 has its issues & is not really conclusive, although elevation can be cause for more concern - is that correct?  So if my CA-125 is elevated, I wonder if that will change anything or if we'll still wait until Mar 3 for the next ultrasound. Still hurting and confused, but at least I'm pursuing it, I suppose....

[HVAC]

Wait and see is a good thing. As long as they are monitoring you. Mine dropped off doing ultrasounds and I let it slide. It had been two years since my last ultrasound. I have the bad genetics with the BRCA mutation.

Alex

[kehen]

Thank you so much for the info you've given me. It really has helped to allay some of my fear! I guess my only concern with a "wait & see" approach is the off chance that it could be cancerous. I know that's not likely, but I tend to agree with my GP, who said in his opinion "ovarian cysts are guilty until proven innocent." I'll be calling tomorrow to make an appointment to consult with my gyno. Thanks again so much!

[old_before_my_time]

Yes, the size is not that big and it may resolve on its own. It does make sense that you would have pain on the side of the cyst so maybe the tech made an error in the report.

The ovary is very small - the size of an almond - so a cyst can easily hide it or even envelope it. But it can also grow inside the ovary such that the cyst is hidden and the ovary appears enlarged. That is part of the reason it is oftentimes easier to remove the ovary versus just the cyst. But a surgeon with good cystectomy skills can usually separate the cyst from ovarian tissue and remaining ovarian tissue will regenerate.

Even absent free fluid in the pelvis, cysts can disrupt natural hormone production and cause bloating.

[kehen]

P.S.  It also said there is "no free fluid in the pelvis," which also is curious since I look like I'm about 3-4 months pregnant.  Perhaps I'm just not understanding all the terminology as this is all new to me.

[kehen]

Well, my ultrasound report says "3.4cm complex cystic structure with multiple septations in the right adnexa."  Not a huge size, so that's a good thing. I really think this u/s tech had her right and left mixed up because I have virtually no pain on my right side & horrible pain on the left - how can the cyst be on the right ovary?!  It says they were not able to locate the ovary on the side w/the cyst - does that mean the cyst is covering it up, perhaps?  I was prescribed some pain meds by my GP & he told me to see my gynecologist & share the results with them to see how they want to proceed.  I feel relieved to at least know what's in there.

[old_before_my_time]

NYC - I am sorry to hear you had a borderline tumor. It is good you are being monitored and hope all turns out well!

[old_before_my_time]

I am aware of the Jill Jacobs case. She only got $125K not $125M. If she were a man whose testicles were removed, she/he would likely have gotten MUCH more...certainly in the millions. But it is considered "no big deal" and almost a "standard of care" to remove women's ovaries (castration). And hysterectomy is rarely necessary either.

I pursued a malpractice case but since this is so prevalent, it is difficult to find attorneys to take these cases. And doctors make sure to cover their behinds via medical records. It usually comes down to he said / she said and juries side with doctors hence lawyers do not want to take the risk / cases.

[kehen]

I am feeling better hearing cases of benign cysts causing fluid.  Now if I could just explain the wacky pain I have (in addition to the ovarian/cervical/general pelvic pain) in what would be my kidney area if it was up higher.  If you put your hands on your hips with thumbs toward you back, it's just about where your thumb would hit (waistline level & towards the back.  Stabbing and awful burning - really really strange.  

If it comes to that, I will be careful about what I sign off on prior to surgery, as I've heard the wording can leave you open to having a full hysterectomy if the surgeon decides to do so in the course of surgery.  Scary stuff.  I am just 41 & this all has really caught me off guard.  Hoping to hear some results very soon.  

Wishing you good health and happy holidays.

[NYCLI1976]

To the prior poster who underwent total hysterectomy for a benign cyst, have you considered a medical malpractice lawsuit? Your situation is very similar to that of Jill Jacobs, a 48 yr old woman in NYC who underwent surgery for removal of uterine fibroids and came out of surgery with a complete hysterectomy.  She sued NYU and the cancer doctor who did the surgery, and the jury awarded her $124 million in damages I believe. Check it out.

[old_before_my_time]

If you do have an ovarian cyst, most are benign. And they can cause quite a bit of pain. And even if they rupture, the pain can remain for quite awhile. The CA125 test is not accurate at diagnosing ovarian cancer. I know of women who had very elevated results (over 1000) and did not have ovarian cancer.

I had a 9.5cm complex ovarian cyst with some free fluid in my pelvis. My surgeon should have removed just the cyst or, worst case the ovary, when the frozen section came back benign but he proceeded to remove the rest of my sex organs. I have been paying the price of reduced health and quality of life ever since. I was 49 years old at the time.

I hope you get answers soon and are treated appropriately. Best of luck to you!

[kehen]

Thank you both so much for the responses. I have not had the CA 125 test (my GP's first recommendation was the ultrasound, which I had done today & am awaiting results. It was really painful, primarily in the left ovary area & the tech spent a long time concentrating on that area (perfect poker face, of course!) I was relieved simply to have the u/s done because at least I felt a step closer to some answers. I'm generally not a worrier at all, but this has me rather upset. I just feel like something is really wrong, if that makes any sense. I wish you both the best of health & thank you again for responding to me.

[NYCLI1976]

I also do not think cysts cause ascites but it could create conditions within your abdominal cavity that can result in ascites. It is possible you may have had a small cyst that ruptured and it leaked pelvic fluid. I had a cyst that ruptured when I was 29 and it was very painful (required overnight hospital stay) but then I was released and an ultrasound taken at the hospital only showed pelvic fluid. The pelvic fluid resolved itself over time - and for 9 years I was asymptomatic for cysts until this year when I had an ultrasound over the summer which showed 3 huge 15-20 scm cysts on one ovary that required surgery.

As you are already waiting for the results of an ultrasound, it seems you are taking care of that testing part already. If it comes back with a cyst, then your doctor will either recommend watch and wait, or surgery depending on the size and what type of cyst it is. Like I said, my cysts all came up as benign on ultrasounds then when they did the surgery, the ovary came back with borderline tumor/cancer which I am now monitoring every 3 months (and may need a 2nd surgery to have complete staging and possible removal of other ovary).

Until then, it doesnt make sense to worry. If you have ovarian cancer, the first thing that would show up would be adnexal masses on or inside your ovary (which unfortunately can not be seen on ultrasound, only in surgery). Have you had a CA 125 test? A CT scan would rule out any tumors in your pelvic region and would also show if any potential cancer appears in lymph nodes or other body parts (lungs, colon, etc). However, you would usually see abnormal blood tests before it got to that stage.