I haven't posted here since shortly after my TVH last October. I haven't been up to providing the kind of positive support that the LIW need. However, I have continued to read this board almost daily.
The board and Kathy's page are really remarkable in the support and information they provide, I don't believe there is anything on the Internet that comes close. Bravo to all of you active posters.
A few things I've noticed lately are the firmly held belief that waiting for the hysterectomy is the most difficult part. The other is the preponderance of bladder issues of late. Thankfully the embarrassment factor related to bladder problems seems to be fading. My story ties into both of these points.
My hysterectomy was uneventful. Waiting for uterine biopsies prior to surgery was the most difficult part. Once I knew we were not dealing with cancer I was fine. I was very calm and at peace with having the surgery done, even drove myself to the hospital the morning of my surgery. I was off the morphine pump the next morning and left the hospital that afternoon. Other than the abdominal gas pains, pain wasn't much of an issue. Thankfully I was able to keep my ovaries.
At three weeks post op, I developed a cold along with a cough. Almost immediately I began to leak urine. It seems my bladder had fallen and was now resting on the pelvic floor. I was horrified, as I had never had any kind of bladder or kidney problems ever before. As the weeks passed the problem became worse and I was referred to an urologist. I was placed on Detrol (antispasmodic) medication to calm my bladder. The bladder spasms were almost as bad as the uterine cramps I'd had before the surgery. Detrol only partially controlled my new problem. Since I'm only 36 years old this was a condition I was not willing to accept as life long. Back to the Urologist for an urodynamics test that measures exactly how your bladder and pelvic muscles work. All tests showed muscle strength/ tone fine and bladder capacity at approximately 25%. I would need surgery for a bladder sling, however it could not be performed until I'd passed the 6-month mark from my hysterectomy. If any of you have lived with stress incontinence it tends to make you a hermit, for me...more so than any of my uterine problems. It saps your self-esteem, and your energy since you're up several times a night to be certain your bladder is as empty as can be. I eagerly anticipated my bladder surgery and again had a very calm peace that this was the right thing for me to do. I had researched and educated myself and was as prepared as possible.
My bladder surgery was more extensive than the TVH, this time I had a 10-inch abdominal incision and the surgeon cleaned up adhesions caused by my superwoman mentality following my hysterectomy. (Please listen when they tell you not to lift anything.) I woke from my surgery in pain that neither morphine nor Demerol could touch. By the following day the pain was manageable with oral meds and I was up and about. I felt I was an old pro with abdominal surgeries since both children had been c-sections, so getting in and out of bed was no biggie. I stayed for 2.5 days and then home to rest with my new best friend, my catheter. I was on more severe restrictions than I was issued after my hysterectomy. After a few days the catheter was removed then promptly replaced as my bladder refused to work. I was seen twice weekly for "checkups" and felt this doctor was doing everything possible to provide me with a positive outcome. Finally, after nearly two weeks, the catheter was gone for good. However, urinating was now a challenge and even more painful. I was told this was simply trauma and things would settle down. I was given pyridium to numb the bladder, and I was dry!
At four weeks post op, I was still not urinating with any kind of force. It was more painful than ever, but hey I was dry! (You have no idea how exciting that concept is after months of leaking.) I was at a point I would accept any amount of pain, as long as I was dry and could have my life back. My doctor was optimistic and reassuring and added Detrol to my routine. Everything looked to be healing very well. As a bonus, the Doctor had cleaned up my old c-section scars during surgery so I had a very smooth scar rather than the keloids I'd lived with for years. I was sent home with instructions to keep restrictions in place for four more weeks. The morning after my four-week check up, I got out of bed and felt a gush. I was soaked. As the day progressed it was clear I had no bladder control whatsoever. Back to the doctor, physical exam and ultra sound revealed nothing and a return of bladder spasms as well as my pelvic floor muscles going into spasm was the diagnosis. I was sent home to bed rest for a week.
At 8 weeks post op, I had some bladder control back with the help of medication. If I physically exerted myself at all, light household chores, etc, my bladder control was again gone. I was told to sit tight. If I found something seemed to inflame the problem then don't do it. This is a little difficult since virtually every movement inflamed the problem and I have a husband and two children ages 7 and 11. My bladder surgery was April 27th and my kids are still afraid they will hurt me. I have no sex life anymore since that particular activity is very painful and inflames the problem to the point I'm barely able to walk.
On my last visit with my urologist I was told that my pelvic area has suffered a great deal of trauma since October and it should be expected to take up to a year from my bladder surgery for things to settle down. I think he is merely out of treatment options for me. Needless to say, I will be finding a new doctor.
My entire point in posting this is not a plea for sympathy. I'm almost numb to all this now. I do not want to frighten the ladies in waiting. This is me, not you. It is to encourage those of you facing a hysterectomy to continue to educate yourselves. Request bladder slings at the time of your hysterectomy, if possible. I certainly wish I had known then what I know now, as there are no do-overs. As it was I eagerly jumped at the option of a hysterectomy as the end to 6 years of heavy clotting and various medications that unbalanced my hormones and made me a nutcase. I've since been informed there is every reason to provide support for the bladder with a hysterectomy and virtually no reason not to. And to those of you facing "bumps" in your road to recovery from the hysterectomy, please keep in mind that bumps are normal. Very few have the perfect uneventful recovery.
My best wishes and prayers for an uneventful recovery to all the Ladies in waiting and Punctured Princesses. Thank you for allowing me to vent. : )
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