This post also contains what some will call TMI (too much information). If you are squeamish, please skip. I had two complications post surgery that each masked the others symptoms making it difficult to diagnose and cure. In fact one of those I’m still suffering from and only now does it become obvious I had this all the time since I left the hospital. For those that do not wish to read this entire post – here’s the key point: if you are having urinary problems, suspect a UTI (urinary track infection) immediately and get tested! That would have saved me more than a month of torturous pain.
Before we could leave the hospital we had to prove that we could urinate. I had difficulty and had to stand up in the shower to accomplish it. Now urinating at first is something that is difficult for anyone post SRS. Women do it much differently than man do and of course up until then I was used to doing it the male way. A male feels he has to go, then basically pushes it out, but a woman when she feels she has to go, sits, relaxes and when it’s ready it comes out. A very big difference that is hard to get used to at first. One has to relax and not push – if you are in pain and have an intense urgency to urinate – this is impossible.
As a result, myself along with the nurses and clinic staff chalked up my difficulty to this difference.
Then, about one or two days after I was back in the hotel, I had a very bad case of constipation. Constipation is normal after a week in the hospital when basically everything down here is shut down and they gave me laxatives to take the first thing back at the hotel. However, those were not doing the job. After a couple of days it became obvious I needed something more powerful. Finally they sent over an enema kit and dupalux which is a very powerful laxative. The next morning, and all that day, I finally emptied out. Meanwhile, I was in pretty bad pain for about 3 days as all this was figured out.
Once that was solved, the second, worse and more painful problem became obvious. I could not urinate. And this degraded each day, getting worse and worse. It started out that I could only urinate standing up then squatting over the toilet. But it was only a small stream, not enough to empty my bladder. The progressed to having to stand in the shower, rock back and forth until I could go – then even that turned into just dribbles and drops, with very little coming out.
Worse yet I had an intense urge and pressure to go, but could not. This would be very painful, I would almost collapse – I had to hang onto something to keep myself up. My entire body would shake and spasm until a little urine would come out. Then things would calm down and after about 5 mins I could urinate – but just a little.
This would repeat every 45 mins to an hour – day and night. Plus, during the night, I would ‘leak’ due to the intense pressure building up in my now fully extended bladder. Basically all I was able to do was relieve the ‘over’ pressure from the bladder – never emptying it or even reducing it. Each hour I was get this very intense urge to urinate along with this racking pain. I would pace back and forth in the room until I was calm enough to attempt to go. Then I went through the entire process of standing in the tub rocking back and forth, dribbling a bit here, raising a leg would sometimes helped get a bit more out – waiting for more to come out, holding onto the shower curtain rod (being so careful not to pull it down) and racking in pain. I had placed my hands on my hips so much that my hips became painful and I could not compose myself that way any longer either – what a horrible mess.
Sometimes nothing would come out but the intensity and urgency to go was still so overwhelming that I would revert to pacing until that pain once again went down and I would try again. I had to use a cane when pacing – it was that bad. Then, clean up (small 1/2 shower) and back to bed for 30 mins or so before all this would start again. Even in bed, I could tell my bladder was painfully full. I had to find a way to lay down that hurt less that other positions. Even the weight of the bed sheet on my lower area was painful (I would prop up a pillow next to me down there to keep the sheet off of it). Poor Lisa had to sleep on the far side of the bed and give me lots of room (this was probably the hardest part for us as we both always cuddled as we slept all night long – this was/is very important to us). As a result it was very difficult to get back to sleep and it seemed the second I did – boom – it started all over again. The most beautiful part was the morning sunlight starting to shine in the sky – it meant not only that I made it through another night, but that the staff was up and the clinic would be open and I could try to get help.
On top of all of this – I had to go off of my HRT meds for the surgery and was only allowed to start taking estrogen again after the 1st week back in the hotel. Going off estrogen is like going through menopause – hot flashes, cold flashes and mixed up emotions etc. A number of times I soaked my pillow at night because I was so hot.
Throughout most of this Lisa (who is a nurse) was in contact with a nurse friend of hers who has a lot of hospital experience with UTI and in fact the two of them had written a training manual for nurses. So, during the long nights, everything I would get up, I would email her with the latest and she would get back with advice (due to the time differences she was up at those times). It was with her help that I was finally able to describe my symptoms correctly to the doctor here.
This went on for 3 excruciating days and nights, hour by hour, no sleep and the worst pain of my life. I remember one night toward the end of this, just before I finally got the catheter in – I was holding onto the door frame of the bathroom, rocking back and forth crying and telling Lisa that I can’t go on like this, we ‘HAVE’ to get help, this ‘HAS’ to stop.
I think my problem was that I thought this would go away because this was probably due to the surgery and something down there was still swollen and pinching off the urethra and time would heal this. When I described my symptoms to the staff, they were concerned if I could urinate at all – which I could. So this was not taken serious until the 4th day when I called the clinic and explained how much pain I was in and how little I urinated. I have a high pain threshold – so it took a while for me to understand that this was much worse than I thought. And of course the times I explained this to the clinic – I was not telling them a pain level that concerned them. Finally, I had just had enough and once I explained how much pain and that only dribbles were coming out – they got me into the clinic and the doctor put in a catheter.
What a huge relief! As he inserted it, the nurse held my hand tightly. It hurt a little. But the second it reached my bladder and started draining – this relief was beyond belief – I started to cry with happiness. More than 1000cc came out – way too much and means that the bladder was over extended.
I wore the catheter for 3 days. Then, an hour before they were going to take it out, I was to empty it then drink a lot of water. I probably over did it and drank 3 bottles! Well, they took it out – but I still could not go – only just a little.
Later that day it became a repeat of when I came back from the hotel – same hourly urge, same pain, same dribbling and not being able to empty. And it got worse as time went on. I over extended the bladder again and again was in intense pain and only dribbled, repeating this every hour that night, just like before.
I stupidly kept going until 9 am the next morning when the clinic opens. Later I found out I could have called any time during the night and a nurse would come to my hotel room to reinsert the catheter. As it was, I made it to the clinic and they put it back in. Once again, more than 1000cc emptied out.
Now the problem was that is was the last week in Thailand – I was going home in a few days. So we decided to keep the catheter in until 2 days before I left. If it worked – great, if not, I would get a special catheter for traveling home.
I got the catheter out early in the morning so that if I didn’t urinate by say 6pm – the nurse would come and put a new one back in.
It didn’t work — so I called and the nurse came right to my hotel room and did it there. Just before we left for home, Dr. Suporn saw me in the clinic and went over the options. The best option was to wear it home – that way I would not have to worry about a complication 1/2 way home – on the airplane!
I was to keep this in for 2 weeks after I got home.
The leading theory was that there was swelling or something that was blocking he urethra. And indeed, each time the catheter was out, there was progress. The first time out I was actually able to urinate sitting down. The second time I actually had a stream instead of a dribble. Both of those were short lived, but it did show progress and point to perhaps swelling that was slowly going down.
In the last two weeks of our stay in Chonburi, most patients are recovered enough that they get out to see the sites, go shopping, eat somewhere other than the hotel, etc. I could do none of that. Walking too much would irritate the urethra possible making it swell worse and extending my issues and pain. So we never ate outside the hotel and at most would walk around the hotel itself – going down to the lobby for an ice cream cone, or visiting the garden.
There are good things about having a catheter (as well as bad). First I did not have to worry about emptying my bladder – each time it was emptied! They had me on ‘training’: instead of having the tube open all the time, I had it closed/pinched off and would only open it when I felt like I had to urinate. This trained the bladder and me. I would still have to get up in the middle of the night – but it was like before – I always would get up once or twice during the night – a huge difference from the hourly painful mess I just had. Some of the bad issues were: hiding the bag – there is a strap that you can attach it to your panties, then I’dd wear a long loose dress and make sure the tubing didn’t show below the hem (in the top picture of this post, the bag is in the large purse I’m holding and you can just see the tube coming from under my dress). The other is that there was constant draining from the irritation from where the catheter entered. And with a tube going straight down from there – this would circumvent any liners or pads I was wearing. As a result I was going through panties and pads like crazy. I brought a lot of panties and would wind up washing almost all of them every day. And of course this cause my inner thighs to chaff no matter how much I washed and dried them. When I didn’t have the catheter in, I was leaking from all the pressure, so I had the same issues then too. What a huge terrible, painful mess that was.
The plane ride home was long and hard especially because I could only sit on my seat cushion and that is not very comfortable. Fortunately Lisa had book us on business class for the trip back. The trip was about 21 hours long which included two 6 hour layovers. On the longest flight we were JAL’s ‘dreamliner’ airplane. The business class seat had everything, including a ‘bed’ mode. That was great because it was the only position that was comfortable at all for me.
The very next day that I was back, we traveled down to Lahaina to see by GP doctor and to figure out how and when to have the catheter removed and what to do if I still had problems. I live in upcountry Maui and this was about an hour long trip – one way. That was difficult and once I had the catheter removed, if I were to have a relapse, that trip would be horrible.
When the day came, we rented a room in a hotel in Lahaina just blocks from the clinic. My appointment was first thing in the morning so that I would have plenty of time to attempt to urinate and if not, would still be able to get back into the clinic to have the catheter reinserted before the clinic closed.
Well, it worked – sort of. I have not had the catheter back in. That day I went about 10 times in a row, sitting down, with a nice stream each time. However, when night came – it was back to every hour and the hour. Sometimes I would have to either stand or squat in order to go. But the good news was that I was going and in a good quantity so that I was not extending my bladder. But I was still having the intense urge and the pain.
This would only get worse in the next few days until on Sat. with nothing else open I went into the ER in Kahalui. OMG what a horrible experience that was. I was there for 6 hours, in my condition that was an eternity. When I got in they had me give them a sample. The restroom was so filthy – there were blood stains on the floor. I did everything I could to keep both the sample and me, my skirt and anything else from touching anything! Then hours later I was admitted, they did a bladder scan that showed I had about 650 cc inside. The test came back positive – I had an UTI (urinary track infection)! They put me on Cipro and Pyridium (standard treatment). They also took a culture and in three days, depending on what they found, they might have to switch medications.
Four days later, I still have the same symptoms – it’s not working – and no call from the Hospital. So we called and for about a hour was passed around between departments only to be told “sorry I can not release that information”. Now I can understand that they can not tell someone else – but this is ME asking about ME!! What a screwed up mess that place is. At least we found out that I was on the WRONG medication – but that is all they would say. We called my GP doctor and she fought the good battle to figure out the rest and she then wrote me the correct prescription (assuming their test results were correct that is….).
Once I got the medication I read what it had to say about UTI’s:
Cloudy urine (mine was slightly cloudy)
Burning sensation when urinating (not really – was like a constant burning sensation all the time)
Have to urinate very often and usually only can go a little bit (bingo – me to a ‘T’)
Have a very strong urge to urinate – usually suddenly (oh boy do I ever)
Pain and muscle spasm in the genital area while urinating and or right after (yes – so intense that I can not go – I have to pace or do something to relieve this)
Pressure over the pubic bone (yes – in fact I was asking the doctor what was under there that would cause this – this only happens when I have to go)
Back pain – would mean the kidney is involved (nope)
Chills and fever – would mean the kidney is involved (nope)
When I read all this — it was the proverbial light bulb moment – this is what I had when I left the hospital in Chonburi and the entire time I was in the hotel and here at home. Holly cow – if I would have described this correctly or if someone could have put all this together back then – well – that’s over a month of the most excruciating pain I ever had in my whole life.
UTI’s are somewhat common when you have a catheter in – like I had those 7 days in the hospital. I’m pretty sure now this was the cause all along. Boy I wish I knew more back then like I do now.
As I’m writing this, I’m on day 2 of the new meds – waiting for them to work – could take up to 5 days. At night, I am still getting up almost every hour (something every 20 mins). I have some pain but not like before. I am able to get ‘enough’ out, but not emptying. During the day I can sit and urinate ‘normally’ and in good volume. However at night I usually have to squat and use pressure, sometime stand to get it going. They gave us this 1/2 moon shaped 2″ deep yellow plastic tray (called an emesis basin) and I would place this between my legs so that I could urinate standing up. It was graduated as well so I would keep a running record of the time and amounts. I was still averaging getting up at night every 1 to 2 hours and about 100 to 300cc. It is still hard to get enough sleep. I would be woken up because I had to go, would only go a tiny bit, but then if I walked out to the living room by the I walked back to the bathroom I could go about 200cc. Then back to bed, try to sleep before I had to do all this again. I was always soooo happy to see the morning twilight …. just like the hardest days in Chonburi – the breaking new day was a really big thing for me.
It is very frustrating and I hope the medicine kicks in soon. This is just too much and too long of a horrible ordeal. And now I’m paranoid about cleanliness.
With Aloha,
Sifan
Postscript: On the 5th night of taking the new medicine the symptoms stopped! Right down to the wire. I was really worried when all I had was one pill left and everything was still a mess and painful. Now 3 1/2 months later as I write this postscript, every time I sit down I have a nice stream and easy time and the thought comes to me – every time – “I will never take going to the restroom for granted ever again in my life”!!
Sifan's Journey 