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Peritoneal Inclusion Cysts/Fluid Collections
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06-01-2016, 04:41 AM
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HysterSister
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Posts: 78
Hysterectomy: January 12th, 2016
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Peritoneal Inclusion Cysts/Fluid Collections
Hi Ladies!
I've been posting mostly in the progress reports for my surgery week but was asked to bring the topic out to the main post op area.
I've had several setbacks since my hysterectomy in January. I developed an abscess about 8 days post op. At two weeks it had to be drained and the drain was left in for 5 days. A few weeks later I started to have really achy ovaries. I asked my surgeon about it at our 8 week follow up in March but she said that was to be expected since I kept my ovaries and would still feel ovulation. Hmmm ok. So I dealt with them aching daily even though I thought wow this kind of sucks as my new normal. A few weeks later, they started waking me up, like clockwork, for an hour each night. Mostly my right side but sometimes my left. I let this go on for a few more weeks before reaching out to my doctor and asking if maybe my hormones were out of whack or if there was something we could check. At this point, it's mid April so 3 months PO. She said it was worth sending me for an ultrasound. I'd missed enough time from work for the surgery and complications so I waited 2 weeks until the facility had an opening for a Saturday and went for the ultrasound. The tech immediately noticed a large fluid collection again. A CT a few days later confirmed it was back in the exact same location as the previous abscess but this time it didn't appear to be infected fluid. I was given a diagnosis of Peritoneal Inclusion Cysts and basically told that whether surgically removed or drained, they have a 30-50% chance of recurrence. Even got a second opinion and they said the exact same thing. Fine. Interventional Radiology drained me on May 20th. I had to wait a few weeks for this as well because I refused to be drained without anesthesia. The first time was 45 minutes of me screaming out in distress. Right before being drained, the radiologist told me that he didn't think this would resolve my pain and he also didn't think this was Peritoneal Inclusion Cysts, he felt it was just a seroma. Upon putting me under and placing me in the CT, they found that although the fluid collections were surrounding both ovaries on my CT on May 3rd, by the 20th, the right side had completely disappeared and I only had a pocket on the left. So they drained 75ccs of fluid from that. By early last week, the symptoms were already coming back. Extremely achy ovaries and overall pelvic pain. But I am now in the busiest part of the year at work and I told myself I would power through it for a few months. I emailed my doctor and we agreed that I would just journal symptoms for now and look for a pattern. Well by Friday this took on a new element. The pain and pressure is very intense in the middle and pressing on my bowels and bladder. It got so bad that I actually went to the ER on Saturday. This was at the hospital where I'd had my gastric bypass a year ago but not the same network as my hysterectomy. I figured it's closer to home though and I have my gastro doc there so maybe they can help. Nope. Treated me like garbage, asked me what I was hoping to gain by coming there, ran no test other than blood or urine, said I have had too many CTs already, gave me a shot of morphine and sent me home. Oh and a referral to see my gastric doctor even though I told the PA treating me that I'm already on schedule to see him this Friday. So I spent the entire holiday weekend in agony. Finally called the doctor on call from my hysterectomy surgeon's office on Monday. She said yep your fluid is likely back and in the middle. Do not go to the ER unless you get to the point where you cannot pee at all. Take as much norco as you need to for this (I rarely take it due to how easily I become constipated) and take milk of magnesia to clear yourself out and hopefully relieve some pressure in there. My doctor followed up with me yesterday and is squeezing me in for a visit today, but I'll still have to go for ultrasound and then wait for the surgical plan. Last time it happened, we agreed that if it collects again, she is going in, not radiology. But she is a specialist and is booked at least 2 months out. She said they literally don't even leave room on her schedule for urgent cases. Sorry for such a long story but this has been really frustrating.
Anyone else have experience with recurring fluid collections or Peritoneal Inclusion Cysts? I'm just having a hard time coming to terms with the fact that people are acting like I just have to accept this as my new normal.
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06-03-2016, 09:19 PM
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HysterSister
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Posts: 78
Hysterectomy: January 12th, 2016
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Peritoneal Inclusion Cysts/Fluid Collections
Update: Had an ultrasound yesterday. Good news is I have no fluid collections. Instead I now have a hemmorhagic cyst on the left ovary measuring 5 x 4 x 3 cm. My doc feels there is a risk for torsion due to size but would rather not go in right now and possibly upset things more and cause fluid to come back. So for now we will wait and see. I'll let her know if my conditions get any worse. Flexeril has been helping quite a bit with the bladder aches and spasms. Also starting Lutera birth control to quiet both ovaries down for a little bit.
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