[I am a 55-year-old woman living in Idaho who had surgery in 2002 to correct a cystocele, rectocele, and uterine prolapse.]
VII. PostScript (9-22-02)
VIII. PostScript (12-6-03)
VIII. PostScript (5-16-04)
In June 1993, I am 46 years old with two children ages 15 and 19. In the course of my annual checkup, my gynecologist, Dr. K., informs me that I have a 2nd degree uterine prolapse. He says that it will gradually get worse over the next 10 to 15 years and that I must inevitably have surgery to correct it. The surgery he recommends is a vaginal hysterectomy with removal of both ovaries. He suggests doing it now, "while I am healthy" and why don’t I schedule it right away, so I can be recovered before I have to go back to school in September?
I am somewhat taken aback, and say I will go home, do some research, and let him know. In June 2002, nine years later, I finally have surgery to correct my prolapse, without hysterectomy or oopherectomy (and without him.)
In 1993, I actually am aware of no symptoms of the problem, except that in 1978, after my second pregnancy, my husband and I noticed a huge difference in how the vagina felt. If it had been tube-shaped before, now it felt maybe pancake shaped! But, hey, we got used to it and it wasn’t really a problem.
We know the cause of the prolapse. With my second pregnancy, I had a condition called polyhydramnios, which means that there was way too much amniotic fluid. Our son was swimming around in a huge swimming pool, and, I am not making this up, people stopped me in the street or store to ask if I was having twins because I was so HUGE. Then, I had precipitous labor – he was born in 1 hour and 40 minutes. He was 8 lbs. 14 oz., and the circumference of his head was 14 ¾ ". I think that all of this combined to pretty much demolish the pelvic floor support system. Add to that some genetic factors of loose ligaments, some years of chronic constipation, and it’s no surprise that everything was falling down, falling down, falling down!
During the nine years I am "thinking about" having surgery, at each annual exam, the docs tell me about a cystocele and rectocele in addition to the uterine prolapse, but for a long time I still notice nothing. At age 50 I go through a natural menopause and along in here somewhere I start noticing something bulging through the labia. I figure this is the uterus coming out, and don’t really want to think about it, but finally a doctor examines me standing up, and informs me that it is the cystocele. I understand that the bladder has fallen through a weakness in the pelvic support system, and is pushing the vaginal wall out against my panties. At this point I am told that the cystocele is "Stage 4", the uterus is "Stage 2 or 3" and the rectocele is down there somewhere also.
OK, so now I am having some symptoms. For one thing, it becomes increasingly harder to pee. At one point, my GP, Lisa, is concerned that I have had three urinary tract infections in one year, and suggests it is "time for a hysterectomy." However, I solve the UTI problem by popping cranberry capsules whenever I feel a UTI might be coming on. I also have infrequent vaginal infections, and Lisa suggests making my own boric acid suppositories to counteract those. I get gelatin capsules from my health food store and a bottle of boric acid powder from the pharmacy and make the caps. I pop one of those in my vagina overnight whenever I notice any significant vaginal discharge and have no more problems.
Over the years, I am given various pessaries to try and they all either hurt, or fall out, or both. It is finally determined that a) the position of my pubic bone is such that if the pessary needs to rest on that, it can’t, and b) because the cystocele is down there in front, any pessary puts downward pressure on the bladder, and that is what hurts. So much for pessaries.
By about age 53, I am finding the bulging cystocele to be pretty annoying. I am very active, and after a lot of gardening, hiking or skiing, I can really feel that bulging cystocele, and it does not feel nice. But is "annoying" reason enough to have major surgery?
In 1993, there are no web sites where I can read of others who share my problem, and the solutions they have found. I am appalled at the thought of having surgery when I feel perfectly healthy, and, even though I’m through making babies, it makes no sense to me that I should lose a perfectly healthy organ. However, I find plenty of books which support my belief that a hysterectomy is just not necessary in my case.
Finding a doctor willing to perform a prolapse repair surgery without hysterectomy proves to be impossible in my area in 1993. I call every gynecology practice in the area and ask if any docs would consider doing this surgery. The reply is a unanimous "NO."
In response to my query, I receive a letter from Dr. Raymond A. Lee, Gynecologic Surgery, Mayo Clinic, dated July 13, 1993:
"Dear Mrs. C_____,
"I very much appreciate your letter and understand your concern regarding uterine prolapse and the desire to save your uterus. We have not found that uterine suspension procedures have been very effective at preservation of uterine and pelvic relaxation.
"I am not aware of anyone that has a good operation for pelvic relaxation where the uterus is preserved."
OK. Fine. I’m not ready to have surgery anyway.
In 2001, when I am finally seriously considering having surgery, the research is much easier. I find web sites where women are sharing their knowledge and experiences. I find articles by doctors explaining the details. And my daughter, now 27, works in the medical library of our local hospital. She searches MedLine for me and gives me a huge packet of articles from medical journals that shed all kinds of light on the issues. Hey, I know what I’m talking about here!
I have not seen an OB/GYN for several years. I have an annual physical, including PAP, with Lisa, my GP. However, in 2001, Lisa is concerned about the frequent UTI’s in the past year, and refers me to Pat, a young female OB/GYN whom she thinks I will like, to talk with about having a hysterectomy. I do like Pat, and like her even better when, after examining me, she says my uterus is "tiny, tiny, tiny" and that there would be "no problem" in doing a repair of the prolapse without doing a hysterectomy. She explains that she would do the surgery in conjuction with Cynthia, a urologist, who would repair the cystocele. I go see Cynthia and I like her also! She explains that once everything is re-suspended, the result is apt to be incontinence, so she would do a bladder neck suspension to ensure that the neck of the bladder stays kinked enough to prevent incontinence.
When I say I "like" these three women doctors, this is what I mean: 1) There is absolutely no "pulling rank" on me; we are two people discussing a problem. They have knowledge and training and experience that I respect; they understand that I know what I’m talking about, and they respect even my quirky desire to keep my uterus. 2) There is plenty of time to discuss everything in depth. 3) They are honest and forthright ("So, just exactly why do you want to keep your uterus?" And when my reasons don’t sound all that scientific to them, that’s OK, too. They respect my right to feel that way.) 4) They all have a sense of humor!
Not one to rush into anything, I give myself another year to "think about it" and then schedule surgery for June 19, 2002.
I have never been hospitalized, except to have my babies, and by spring 2002, I find that I am pretty freaked at the prospect of having surgery. However, on the Internet I find pretty much all the help I need. I read all the "Other Women Share Their Personal Experiences" on the "Uterine Prolapse Information" web site. These help me understand what I may be experiencing. I find descriptions of the procedures I will have done. And, best of all, I find something written by a doctor who does pelvic prolapse repair surgeries. It is a long 10-15 page document written for her patients to help them prepare for surgery. I save it to my computer but somehow fail to bookmark it, and have never been able to find it again on the Internet. (I could e-mail it to anyone on request.)
One thing this document suggests is to make a list of your fears about surgery, and then go through them one by one and figure out how you are going to deal with them. So I do. After I work through all of that, I discover that what will help me the most is to concentrate on healing after surgery, and what I can do to promote that. I come up with a list of "Ten Things" to help me recover. All of these are from the Internet article. I memorize it, and go over and over it in my mind whenever I start worrying about the surgery. After the surgery, I have a little card with my "Ten Things" on it, and I concentrate all my energies on doing those things.
I have another great female doctor, Joan, who is a licensed naturopath, and she gives me a homeopathic remedy, Arnica, to speed healing, and a vitamin/herbal supplement called First Intention [see it at the Tyler, Inc. web site under "Specialty Products"] which also will aid healing. (I clear these with the surgeons and they put it in my orders at the hospital.) Then I buy an audiotape "Music for Sound Healing" by Steven Halpern to listen to on my Walkman during surgery and while hospitalized.
Here is my list of "Ten Things" to help me recover:
– keep pain medication consistent, but light as possible
- Meds
Maybe this would have happened anyway, but on the second day after surgery, my GYN doc told me that I was already a day ahead of most people in my recovery.
My OB/GYN did two procedures: 1) Anterior and Posterior Colporrhaphy and 2) Modified McCall Culdoplasty. Both were done vaginally.
My urologist did two procedures: 1) "harvest fascia" – she made about a 1" incision just down to, but not through, the abdominal wall at the level of the top of my pubic bone. She took a bit of the "fascia" there to use to suspend the neck of the bladder. 2) "sling procedure" - She used the fascia to make a little sling to support the neck of the bladder.
The afternoon before surgery I take a phospho-soda (Fleet) laxative. However, it’s too late in the day and I’m up until 2:00 am emptying out. With the aid of a Sonata sleeping pill I sleep the rest of the night and am at the hospital at 7:30 am. My husband has a bad cold, so my (wonderful) big sister Ann agrees to spend the day at the hospital with me.
After a quick check-in at Admitting (I had spent about an hour in their Pre-Admission Clinic two weeks previous) we go to a waiting room, and soon they call my name. The Pre-Op room is busy! I get a curtained off bed, change into a hospital gown, get my IV started. I am amused to discover that my doctor didn’t order my pubic area shaved and I had already done it – dang! They let Ann come in and she gives me my Arnica, we set up my Walkman, and in general, she holds my hand. Then the anesthesiologist comes in and we discuss the plan. My GYN had suggested I might just have a spinal, but the anesthesiologist thinks the procedure might take too long for that, and after some discussion I agree to have general anesthesia. At 9:25 they start some medication for relaxation and pain, and I go into surgery at 9:55. They moved me to the Recovery Room at 12:30, but I don’t remember much more until it is time to move from recovery room to my hospital room. However, I do know that having the music all that day was wonderful.
When my surgeons visit me later in the evening, they tell me everything went as planned and all the procedures were successful.
In the hospital (rest of Wednesday, Thursday, and Friday morning) - This part is really not fun.
These things are hard:
These things help:
Because I had the bladder neck suspension surgery, I have a "supra-pubic catheter" which is a tube with a little plug in the end of it which exits my bladder through my abdominal wall. It stays in until I successfully complete "bladder re-training" which normally lasts one week. The nurse shows me how to empty my bladder as much as I can normally, and then unplug the end of the catheter tube and empty out the rest of the bladder into a measuring cup. I record the amount emptied by the catheter each time on a chart. A week after surgery at the urologists office, she checks my chart to make sure I am emptying the bladder almost completely on my own, and then she pops out the catheter, the little hole seals by itself, and I’m on my own. The "bladder training" is, of course, annoying, and makes for a long drawn-out process every time I have to go, so I am So Glad when it is over with!
Speaking of emptying things, I am a little concerned about bowel movements passing by the stitches just on the other side of the rectum, but they have me take Colace, a stool softener, and as soon as I start eating normally, I pass very soft stools which are not a problem.
By the time I go home from the hospital, I am feeling so well that I hardly need any help. I walk a little every couple of hours, watch movies, chat, and read. My daughter fixes meals for me for two days until she figures out I could really do it myself, and then she cuts me loose.
Week Two through Six: Something Bad Happens
If it weren’t for the fact that something really bad happens to me in here, I think I would have had a very easy recovery. Everything is healing very well. I have a little more energy each day. I walk a little further each day, and I do piddling things in my kitchen and garden and feel somewhat useful. The only thing I notice is that when I get tired, it’s like hitting a brick wall, and I have to rest NOW. So I take lots of naps, and all would have been well, except…
On a morning eight days after surgery I spike a fever of 103.5. They put me back in the hospital and run lots of test to see what’s wrong. Then I develop the world’s worst diarrhea and the diagnosis comes in. I have something that is variously called Antibiotic Associated Diarrhea, "C-DIF," or Clostridium Difficile. As I understand it, all the antibiotics I am given for surgery kill off all the good bugs in my digestive tract. The C-DIF bacteria is either dormant in my system, or more likely I pick it up in the hospital and it then takes over. After nine days on the drug for this, I am better, but a week after that I join the 25% of victims who relapse, and I go through it all again. For more information about this, see Clostridium Difficile Support Group.
Conclusion
At Week 5 post op, I assume that someday I will be glad I had this surgery. If the doctors are correct in saying that surgery was inevitable, then I guess this summer was as good as any to suffer. However, the difficulty of going through any surgery, as well as the possible unplanned things that can go wrong (which in my case did go wrong) confirms my belief that I will always give as much time and study as possible to any suggestion that I have to have surgery.
PostScript (9-22-02)
I am three months post op. I have been mulling over how I feel now about my surgery. I guess I will just list the pros and cons as I see it now, because I'm still of two minds about it.
PROS:
1) I feel "high and tight" in that area, and that is a great feeling. I think it makes me feel younger!
2) Sex is definitely better for me, which makes sense since the vagina must be more like it's supposed to be.
3) When I am physically tired, like after a long hike, I used to really notice my prolapse, and it felt icky. That is completely gone.
4) Even considering #1 below (q.v.) I am so glad I did not have a hysterectomy. I can't really explain all the reasons, except that I still feel like myself. I think that losing the uterus changes a woman in various ways such as disrupted hormones, gaining weight, sexual satisfaction, etc.
CONS:
1) My uterus has already slipped down from as high as it was right after surgery! If "0" is at the level of your "sitting bones" and "4" is completely out of the vagina, my uterus was at "0" after surgery but at "2" when the doctor checked me at 10 weeks post op. However, it was the prolapse of my bladder that was at level "4" before surgery. My uterus was never lower than "2" or "3" before surgery, and it never bothered me. So I'm going to assume it won't get any worse. Also, who's to say that other things might be falling down if I had had a hysterectomy?
2) Since I had never had surgery before, I really had no idea of the dramatic effect it has on your whole body. And, of course, the C-DIF infection doubled the effect. I think I look older (I know, even though I feel younger - weird). When my son was visiting, whom I had not seen for eight months, I asked his honest opinion about if he thought I'd changed any. He said, "Well, I think you look a little older." It scares me that the overall effect may have shortened my life expectancy!
3) One of my main symptoms before surgery was that it was difficult to urinate. Guess what? Now it is even more difficult! At least my urologist had warned me that this would be the case. However, she said my other choice was leaking as I got older. (See "advice #2" below.)
4) I had a third relapse of C-DIF four days after I stopped medication for the second relapse. (With each bout, I have fever of 103 and severe diarrhea.) Since the first of August I have been on a tapering down dose of an antibiotic that is very specific for that bacteria. When I am taken off that medication, I may get sick again as this bug is very hard to kill.
So, I guess that overall, I feel that the surgery was successful. But the price I have paid for it was very high. I have four items of advice for my readers:
1) In most cases, this is an elective surgery. You had better be suffering a lot before you decide to have surgery to fix it.
2) Make sure you are as healthy as you can be before surgery. Also, the particular bug I got in the hospital enters orally - so you cannot be too careful about your own and others' hand-washing. I almost think that if I ever am hospitalized again (God Forbid!) I will take my own box of sterile gloves to use whenever I need my hand to go to my mouth.
3) Now that it's too late, I have heard of what may be a better surgery to correct prolapse. My own gynecologist/surgeon told me about it. She went to Celebration, Florida to find out about it, and the doctor, Steve McCarus, may be coming here to Boise, Idaho in Spring 2003 to train doctors here. I just did a quick Google search and found this page about him: http://www.surgicallearning.com/staff_mccarus.html
4) Also, now that it is too late, I have heard of what may be a better surgery for bladder neck suspension. Here is a web site about it: http://www.urogynecologychannel.com/
Maybe someday there will be better answers to our questions about how to deal with prolapse. If you feel more confused than you did before you read this, that is probably good. There are no sure and easy answers to this problem!
There have been the following developments:
1) I have never had another relapse of C-DIF, but I have to live with the fact that, for me, taking antibiotics will always carry the risk of relapse, as C-DIF will likely remain in my system for life. I eat live-culture yogurt every day and recently started taking a supplement called "Primal Defense" which also promotes the kind of healthy bacteria in your gut which fights the bad guys like C-DIF.
2) It is now much more difficult to empty my bladder than it was before the surgery. As
my OB-GYN noted in my post-op exams, everything that <<can>> fall back down has done so. However the suspension of the bladder neck and of the uterus still hold. So, nothing is falling out of the vagina, but bladder and uterus are definitely sagging inside. This causes delays in the bathroom, or perhaps a second trip soon after trying to empty my bladder. Also, it caused a new problem - see next item.
3) A year ago (Nov. 2002) I developed a bladder infection caused by the bug proteus mirabilis: "a bacterium that is often found in soil, water, and the intestinal tract of many mammals, including humans . . . [It] is not a common cause of urinary tract infection . . . [but] infects a much higher proportion of patents with complicated urinary tracts, that is, those with functional or anatomical abnormalities or with chronic instrumentation, such as long-term urinary catheterization." Note the term "complicated urinary tracts." That's what I have after my "bladder neck suspension" surgery. Because I can't take antibiotics, I still have the infection a year later. Even if I did take antibiotics, the likelihood that it would recur is high, because of what I presume to be pockets of un-emptied
urine where proteus mirabilis can flourish. However, IF I am totally faithful about drinking two-plus liters of water a day, I feel little if any discomfort. And that's how much water a person should drink each day anyway, so I manage to live with it.
4) And this...At age 50 (five years before my prolapse surgery) I was diagnosed with "moderate to severe osteoporosis of the spine." By means of thorough lifestyle (stress reduction) and diet changes, I managed to reverse the bone loss without medication. Not surprisingly, the bone scan a year after my prolapse surgery showed increased bone loss again.
How do I feel now about my decision to have surgery? The same as I stated above: "I guess that overall, I feel that the surgery was successful. But the price I have paid for it was very high." I still ask myself what my decision would be if I could do this all over again. The choice boils down to 'which form of suffering would I prefer?' I hate to think of still having to put up with that "icky" feeling of the bulging out of the vaginal wall against my panties, especially now that I've taken up the sport of backpacking. A long hike with a backpack would certainly have aggravated my problem, and perhaps backpacking would be impossible for me. On the other hand, the adverse affect on my overall health is scary. I'm edging closer to saying that I should not have had the surgery.
So how am I now? 14 months after I got the bladder infection proteus mirabilis, it finally went away - without antibiotics! Apparently, after 14 months of faithfully flushing my system twice a day with 1 liter of water, the bug finally decided to give up. I have also been taking a maintenance dose of "Primal Defense" (one per day), but I don't know if that helped or not. Other than that, nothing has changed. My Ob/Gyn examined me recently, and said that she couldn't see any change, and predicted that there probably won't be any further changes, and that if the repair has held up this long, it will probably continue to hold.
So now that I have never had another relapse of C-Dif, and the bladder infection is gone, and I can backpack and ski with no prolapse issues, I guess I would have to (grudgingly) say that I was probably right in having the surgery.
I would be happy to answer questions: [email protected]