what do I do now?

[cricket3991]

I had surgery for rectocele, endocele and mesh sling on urethea for what the uro/gyn told me was urine leakage the first of Jan, 2011.  I had to wear a pad for about 3 months and when it was over I noticed that I can touch my cervix whenever I wipe.  I must have a completre uterine prolapse but at 3 months the Dr. said everything was ok when he examined me.  I can even see it with a mirror when I stand up.  The rectocele was a bother but I could live with it.  As a result of the surgery I now have hemoroids which I never had before and dr. says they were not caused by surgery.  I have a uteris almost coming out, I leak urine now, when I did not before, and the Dr. says he fixed one kind of incontenance but this is another kind.  He did not tell me ahead of time that if he fixed one kind it might cause another kind to start up.  He gave me pills to take which I can't because of severe reaction to drugs.
What do I do now?  The Dr. doesn't even admit there is a problem.  I am so sorry I had this done and don't tell me a urogynocologist is the answer, this Dr. is and he was trained at Mayo Clinic.  I thought he would know what he was doing and have lots of experience.   I have been doing the Kiegel exercised but they don't seem to help, it's like they don't work and I have used them over the years and a week or so would always tighten things up, now no improvement after several weeks of exercises.  Would the sling have anything to do with them not working?

[MCFOR]

Yes, I consider myself very lucky compared to what you are suffering.  I add your name to my prayer list at night in hopes that you will find someone capable of ending your suffering.  Hopefully, your information sharing on this site will prompt more women to check our Sherrie's book before making final decisions on whether to have surgery or not. Most importantly that they seek out a urogynecologist. I found Sherrie's original posting on the subject by sheer accident while searching for information on POP on the internet which eventually led me to her book.  I did not expect much from her book, but not it's my POP Bible.  I had considered the pessary (I never heard of a pessary before either) but it keep falling out.  I had my surgery done at the Washington Hospital Center in Washington DC.  They have a complete Women's Center and a dedicated Urogynecology unit.  I went prepared with questions about the surgery and for the before and after care from Sherrie's book.  I just copied the pages out of the book.  My Urogynecologist had the answers to my questions already prepared in the pre-surgical patient in-take.  She pulled up diagrams on her computer to show me (and my husband) what my condition was (stage III) compared to what it should be and where it would go (stage IV) if let untreated.  She reiterated my choice of non-surgery as an option and reviewed the different types of pessary devices (never heard of these things). That gave me extra confidence in my doctor.   Johns Hopkins Hospital in Baltimore, MD is considered the number one specialist in this area on the east coast and it might be worthwhile checking with them.  Had I not been confident in the WHC that is where I would have gone. I'm fortunate to live with in 2-4 hours of each of these fine institutions.  Good luck.  I'll keep tracking your progress. I'm glad you found this web site and Sherrie Palm.

[sherrieP]

All urogynecologists should be trained in fitting pessaries so if you decide to find a  new one for a 2nd opinion, they should be able to guide you with pessary path too as far as what type, whether or not one will work, how to fit it properly. Some are inserted and removed occasionally by physician, some are removed & cleaned daily by you-depends on which type you have. A good urogyn is well versed in both surgical and nonsurgical treatment options. Once you have found one you want to try out, I can do some background checking for you if that will make you more comfortable. After what you've gone through, I can see where you might be nervous seeing someone new after your bad experience but I'm hopeful we can find someone to help you get back to balance.

[cricket3991]

At this point I am just tired of thinking about it.  My Dr. was trained at Mayo but works in Kansas City now.  You are right, I did not research it before hand.  I would just like someone to explain why this happened.  did repairing the endocycle cause it.  It was ok at first but I could just feel it falling, the heavyness, the spotting at times so it fell  a month or so afterwards.  Just not sure what to do about it now.  Someone said get a Dr. that does pesseries but how do you find one of those.  I didn't know there were still using them as I never hear about them.  Without this page I wouldn't even know to ask.  Glad you are doing ok, I just tell myself there are failures in everything that happens, I was just the unlucky one, although, it seems like there are not good stats for this surgery, too many problems.  I would not have had it had I known I would have more problems than I had before.   The Dr. did not inform me of this they way he should have.  After you have decided to have surgery and doing the final work-up is not the time to talk about side-effects, it should be done at the first visit so you can think about it.   thanks for your support.

[sherrieP]

Part of what makes MedHelp work so well is when members reach out to others with guidance from experience-thanks so much for taking the time to share MCFOR.

[MCFOR]

Sorry to hear about your complications.  I'm struggling to understand how a Dr. from the Mayo Clinic could give you such pitiful answers especially if he is a urogynecologist.  I agree with Sherrie that you should "go see" another urogynecologist as opposed to trying to get answers from another doctor on a "list."  I'm assuming it's another medical web site you are referring too and that Dr. was a urogynecologist.  Good luck and I hope you find your answers.   I had a stage III POP and elected to do surgery in Jan 2011(which is what caught my eye and prompted me to respond).  Luckily, I had minor side effects (itching and mile UTI) following my surgery.  Sherrie's book "Pelvic Organ Prolapse The Silent Epidemic" answered a lot of my questions prior to and after surgery. Chapter 10 (What to ask your doctor prior to surgery?) sounds like it would have been beneficial to you prior to your surgery.  I'll keep tabs on your posts.

[sherrieP]

Probably just irritation from contact friction or irritated dry tissues from lack of estrogen. This is something that can probably be corrected pretty easily once you find a new dr. Can't really think of any way to reduce irritation effectively without addreseing the uterine prolapse hon, please do find another dr. There are creams you could try but until the bulging tissues are addressed, is just a bandaid fix.

[cricket3991]

thank you so much for your help and encouragement.  I had written to another list and the Dr. didn't say much, was no help in explaining or making me feel any better.  At least you have indicated there might be some options.  Right now I am noticing the uterine prolapse is causing irritation at the front of the  vaginal opening.  It sort of stings or burns, unless it is an infection..?

[sherrieP]

I do feel you should seek counsel with another urogyn, not necessarily for surgery, simply to get answers to what is going on. You may have had some level of uterine prolapse prior to your surgery but the dr didn't detect it (which in and of itself is absurd) and since many women are very concerned about removal of the uterus, he was not comfortable doing a hysterectomy w/o prior consent. (When I had my surgery we knew about the cystocele and rectocele but didn't know about the enterocele-but because she found I had a large one when she went in, she addressed it at the same time.) Did your cancer dr say why he feels the uterus s/b left in? I'm guessing it is related to the fact that you can't utilize estrogen therapy and he feels w/o a uterus, the other tissues might shift position although if mesh was used they might be ok.


By going to see a different urogyn you should at least get a definitive diagnosis of what is going on-something you are not getting with your current urogyn. You might be able to benefit from some kind of pessary, there are around 20 different kinds of them (this is trickier after you have mesh inside though), if not maybe there is another kind of treatment a physical therpist could utilize like biofeedback or electric stimulation that may be beneficial. Loss of tissue integrity with menopause that can't be addressed with estrogen because of cancer issues puts you on a different path than women with no estrogen concerns.

I do encourage you to seek a new opinion. In the meantime I am going to send you a PM (private message) with a link to info on types of incontinence so you can understand the subject better.

[cricket3991]

thanks for your comments.  The urogyn gave me a test with air and said I had a problem with incontinence.  I had noticed a slight yellow stain in pants but never felt wet or considered it a problem.  I hadn't even thought about it till he mentioned it.  He said the sling would fix it.  After surgery  he said something like I had different kinds of incontinence and he fixed one kind!  He wanted me to take medication to stop the leakage from the other kind.  I'd like to know what differeent kinds there are and how fixing one problem would make the other one worse??  He just drew a picture of the urethera and showed two strips supporting it.  I did not understand that the bladder had prolapsed.  Now I don't know what condition it is in.   I need a good diagram of the insides of a female and what happens when all that skin is taken out.  

I did not take the medication as I have been chemically poisioned and I do not take ANY meds. unless absolutely necessary.  I told him he didn't read my chart or mention to me that i would need medication afterwards, I was really mad at him.  He did not communicate before or after, no explination for what happened or why my cervix is now bulging out.  
I take a product that changes bad estrogen to good estrogen as I had breast cancer in '07 that was estrogen based.
I don't know what to expect or even ask a new Dr.  Is there anything they can do now?  I don't want more surgery as the anesthetic is very hard on me and it takes months to recover and get my energy back.   My cancer gyn suggested I not have the uterus removed but I am not sure if it will drop any more or cause any troubles.  
Even if I don't have more surgery I would like to know what happened, why did the uterus just start dropping after it should have healed and what if anything can be done?  If you think another Dr. can answer thes question s I would like to talk to another one.

[sherrieP]

I am so sorry to hear about the complications you've experienced from this procedure. Did you notice the urinary leakage prior to surgery (you mention the dr pointed it out to you) and in your post it sounds like you only had leakage after surgery. Urinary incontinence is extremely common with POP and typically if a mesh sling is done it is to fix the leakage issues so I'm a bit confused by your post. I would like to think if you have uterine prolapse (and it does sound like you do) that it would have been addressed by the urogyn during the procedures you had done to address the rectocele, cystocele, and enterocele. It does sound like you are getting the runaround from your dr instead of a straight up answer.

I hate to admit it but sometimes urogyns mess up too. There's good and bad in every field. Are you using any hormone replacement to nourish the vaginal tissues? Because of tissue atrophy from loss of estrogen, often we don't bounce back from surgical procedures like we did in our younger years. When POP procedures are done, they are only as good as the type of procedure done works for your body and the experience of the urogyn makes a big difference in the quality of the work. There are many different types of procedures for POP, some urogyns use mesh, some do not, if it's not properly attached it causes problems, lots of issues. In my book I don't care where the dr is trained-a top shelf school can't make a good dr out of someone who is just in it for the money-you have to truly care about people to be a good dr.

Kegels are extremely beneficial but in a case like yours sounds like, things are too advanced for them to help. It's hard to say what the problem is in your case but I still feel a urogyn is the answer for help-just not the one you are seeing. You need to find one who is a compassionate women's health advocate. If you are willing to check out that path and don't know how to find another one, I can help out. If you know of another one in your area, check them out on physician watch-dog sites to see how they are rated (check healthgrades.com or ratemd.com). If you don't want to see another urogyn, ask your current one to recommend a physical therapist who specializes in women's health to utilize treatments; there may be something they can do to get you more balanced on the bottom end.

Sher