anterior posterior repairs left me with rectoceles and cystoles damge

Body: 

THIS IS MY LIFE.
I WAS 31 WHEN I HAD MY FIRST BABY, 26 1/2 HOURS OF LABOR AND THE DOCTOR REFUSE TO GIVE ME AN EPISTOMY. I WAS TORN FROM THE VAGINA DOWN TO THE RECTAL. MY SON WAS 9 LBS 7 OZ AND 21" LONG, HEALTHY BUT BLUE WHEN HE CRIED. SOON AFTER THE DOCTOR SOWN ME UP, LEAVING ME IN THE BED WITH ICE PACKS, LEAVING INSTRUCTIONS NOT TO LIFT THE BABY. SO I GOT FAMILY HELP.
ABOUT 1 MONTH AT HOME, I LEFT A ROLL COMING DOWN MY VAGINA, I GOT A MIRROR AND SEEN A VEINY BULGE. GOING BACK TO THE DOCTOR HE SAID ITS NOTHING JUST MY BLADDER PROLAPSE, NOT A BIG DEAL HE SAYS!
I SEEK SEVERAL DOCTORS AND NO ONE WANTED TO HELP ME, THEY SAID I WAS TOO YOUNG FOR SURGERY, TRY HAVING ANOTHER BABY BEFORE ANY KIND OF SURGERY.
MY HUSBAND AND I TRIED FOR ANOTHER SAME THING HAPPEN BUT THIS TIME THE BABY WAS BORN IN 3 HOURS AND THE DOCTOR STUCK HIS ARM UP INSIDE OF ME AND PULLED HIM OUT SO I DIDN'T HAVE TO BEAR DOWN. HEALTHY BIG BOY AGAIN.
ABOUT 1 MON TH AFTER THIS, SAME THING OCCURRED ANOTHER ROLL I WENT TO LOOK DOWN BELOW AND SEEN ANOTHER BULGE WAS THERE. WENT IN TO SEE THE DOCTOR HE SAYS IT IS MY UTERUS THAT HAS FALLEN! 2 BULGES FELT LIKE I HAD A BOWLING BALL HANGING THERE! ONCE AGAIN NO DOCTOR WANTED TO CORRECT THE MATTER.
I SUFFERED SO MUCH INCONTINENCE THAT I WAS DEPRESS, THEN 1 MONTH LATER I WAS RUSH TO THE ER MY BLADDER WAS HUGE HANGING THERE FILLING UP WITH TOXIC, THE DOCTOR HAD TO PERFORM ANTERIOR POSTERIOR REPAIR, DOING SO WAS PAINFUL AND THE ANCHOR METAL IN MY PELVIC BONE TO UP LIFT THE BLADDER AND UTERUS, BUT THE SURGERY FAILED CAUSE OF THE SIZE OF THE UTERUS SOON AFTER BIRTH WEIGH DOWN EVERYTHING, SO THE 2 BULGES REMAIN OUT.
I STAYED LIKE THAT UNTIL 4 MONTHS I WENT IN TO SEE THIS OTHER DOCTOR WHO SAYS I NEED ANOTHER REPAIR PLUS HYSTERECTOMY. HE DID THE SURGERY I FELT GOOD LESS PAIN, THE DOCTOR RELEASE ME FROM THE HOSPITAL AND SAID TRY HAVING SEX IN ABOUT 6 MONTHS. WE FOLLOW ADVICE, WE TRIED SEX, BUT MY HUSBAND COULDN'T ENTER INSIDE MY VAGINA IT WAS 2" IN DEPTH.
I WENT BACK TO THE DOCTOR WHO PERFORM THE HYSTERECTOMY AND REPAIR HE SAID SORRY HE COULD NOT FIX HIS WORK. DURING THIS TIME OF MY LIFE I HAD NO SEX AND INCONTINENCE STARTED I WAS A MESS.
I WENT TO SEE A UROLOGOLY DOCTOR HE SEEN THAT MY BLADDER IS FUSED TO THE RECTAL IT WILL BE VERY COMPLEX SURGERY , HE REFUSE TO HELP.
SINCE IN TIME, I HAVE LIVE LIKE THIS AND UPSET OVER EVERYTHING EVEN MY MARRIAGE IS NULL N VOID IN THE SEX DEPARTMENT. MY BODY IS NOW TO THIS DATE LOOKS LIKE A DESTROYED VAGINA. I TRIED ANOTHER SURGERY IN NY. THE DOCTOR WENT IN AND TRIED TO AT LEAST STRETCH THE BLADDER TO STOP THE INCONTINECE SO IT COULD FILL UP MORE, HE ALSO TRIED TO REOPEN ME, BUT NO GOOD-- I WAS SENT HOME WITH DILATORS TO USE IN SEVERAL SIZES TO SIT ON-- NO GOOD MY INSIDES HEALED AND FUSED TOGETHER AGAIN LEAVING THE VAGINAL OPEN AT 2" DEPTH
ALONG WITH THIS CLOSE VAGINA, THERE IS A BULGE STILL PRESENT IT IS NOW MY RECTAL PROLAPSE HANGING THERE!
SINCE FROM ALL THE SURGERIES I HAVE SCAR TISSUES GROWING AROUND THE ORGANS I HAD A BOWEL RUPTURE, I HAD DIVERTICULIOUS! I STILL AM INCONTINUES PLUS NOW I HAVE DIARHERRA SLIPPING OUT ALL DAY!
I SEEN SEVERAL MORE DOCTORS NO GOOD! FINALLY I SEENA GASTROLOGY AND HE DID A COLONSTOMY BUT SAID I DON'T PRODUCE FAT IN MY BILE, HE PUT ME ON QUESTRAN AND IT HELP TRICK THE BODY BUT NOW THE QUESTRAN STOP WORKING. THE DOCTOR DON'T KNOW WHATELSE TO DO.
I TRIED DIARHEEL PILLS AT THE NUTRITIONIST STORE BUT THEY CAUSE CONSTIPATION. MY DIARHERRA IS ANNOYING AND IT IS INTERFERRING WITH MY JOB AS A HAIRSTYLIST. OH ALSO PESSARIES DON'T HELP WHEN YOUR INSIDES ARE WEAK TO HOLD YOUR ORGANS UP. THE PESSARIES ALSO CAUSES INFECTIONS, AND ALSO THEY FALL OUT WHEN YOU WALK.
I AM NOW 44 YRS OLD MY LIFE IS RUINED ALL BECAUSE THIS FIRST DOCTOR LET ME GO THROUGH LABOR TOO LONG WITH OUT AN EPISTOMY OR A C SECTION.
I WANT HELP BUT I AM RUNNING OUT OF DOCTORS.

Hello Jacqueline and welcome.

I really not being a doctor cannot say anything helpful but I wanted to say something so you do not feel you are being ignored.

Your story is very sad that the doctors will not help you. Doctors seem to say they can fix anything but in all truth when things get tough it seems your doctors have got running.

There has to be someone who can help you in such a complex situation.

I wish there was something more I culd say - But I am just a normal bod and do not know anything about this kind of surgery. But I wanted to send you my best wishes and tell you to keep looking for someone to help you. What country are you in?

((HUGS))

Sue

Look into the eyes - They hold the key!
http://www.bringmadeleinehome.com/img/maddy544x150Banner.jpg

Hello Jacqueline,

I just wanted to say thank you for sharing your story. I am afraid I have no advice for you as I am very new to all of this, but I just wanted to say that I think you are incredibly brave and I hope that your children are a great comfort to you. Nobody should have to go through the things you have been through and I cannot believe how awfully you have been treated.

Hopefully somebody will be able to offer you some more constructive advice.

Best wishes to you,
Zoe x

I have a beautiful 9 wk old baby boy and a wonderful 2 and a half yr old daughter who make it all worth while :-)

I know it is horrible, and the sad thing is no one understands the pain I went through and continuing on having. I am very proud of my boys they are 13 and 11. I find this site for some reason or another, but it is now amazing that there are alot of woman out there that are or starting to have these problems. And YES, the doctors should realize and help out all of us or comfort with support instead of I can't help! Anyhow thanks for your support.

I am in U.S.A I am still and always looking for answers and making appointments with Doctors, to spend my money and have them say Sorry, can't help. So from 1994-2007 I am still searching.

Thanks for your kind words.

Hi

I'm so sorry to hear all you've been through but you're life is not over and neither does you're sex life have to be.

i hope you give yourself plenty of care and time to heal.. i work in the alternative medicine field and i would suggest trying shiatsu/ acupuncture/ herbs for the diahhrea issues and for stress.

i said shaitsu first as this touch can be very theraputic and caring and you're been so callously treated by doctor's and it is also a reminded of the pleasure the body can feel it's so good.

Sexuality can be very very rich without being focused on the vagina.. for example there are people with sexaully transmitted problems that alter the way they are sexuall with one another and it can work very well. their are some great video's and book's that might help you explore these creative ways to play with one another and give each other pleasure.

For many women for example, it's the clitoras that is most sensitive to stimulation and thanfully i don't think prolapses affect this area (unlike say clitoral mutilation ).

anyway that's just my idea's thinking out loud..

Best wishes

anne-helen

You mentioned a urologist, have you tried looking for a Urogynocologist, they specialize in this area, a little above and beyond basic gynecology. Seems to me all these doctors turning you away are afraid, not to mention, and I'm sure this will freak alot of other readers out, do you realize the malpractice here? In my research, since I have prolapse w/cystocele/rectocele and I'm actually having a hysterectomy w/repair of the others at the end of the month, they do say that sometimes your issues can happen, were you very careful w/postop care? I've also read that the second time around (for repair that is) is more difficult, but I feel that these doctors are blowing you off and I really feel for you, try looking for a urogynecologist if you didn't go to one in the first place, their procedures are different but there are also not many of them around depending on your state, I live in Florida, and there's only 2 in my city...Good Luck and take care.

Dolly

Wow... you've been through quite an ordeal.

If I were in your situation I would approach the problem as a choice between two options. Each option I would research thoroughly until I felt I knew all it was possible to know, reasonably, as a lay person, and then make my choice.

In either option, I would find an excellent gastroenterologist to treat the diverticulious and diarrhea. This is a HUGE quality of life issue and the priority problem that needs focused attention.

Option 1:

Leave the vaginal area as it is, but aggressively pursue alternative medicine, psychological stress reduction, and visit an experienced, qualified sex therapist, as well as a marriage counselor if this is causing tension between you. The goal is to bring both you and your husband, individually and as a couple, to the best possible peace with your vaginal tissues as they are, to make them as comfortable as possible with whatever manipulation and/or penetration you might achieve, and to find alternative ways to express sex between you. Remember, your husband needs release, and this can be given him in ways other than vaginal penetration. You should be able to enjoy orgasm too, without full penetration. In the old days before reliable birth control, people were experts at enjoying sexual orgasm together without vaginal penetration, and you can develop such a sex life now with your husband. The important thing is that you and your husband remain tender and intimate together, caring about each other's pleasure and needs. The last thing you need on top of all your trouble is for your marriage to split. You need to avoid bitterness, angry moods, and so on, things this will cause because of the pain and frustration, but things that will drive a wedge between you and your loved ones.

Option 2:

Initiate a nationwide hunt for THE expert in vaginal reconstruction. Your pelvic area has been mutilated. There IS such a thing as reconstructive, plastic surgery, but I have discovered that in all medical specialties, there is a huge difference between "average" and "the best". Yours is a unique, special case, and you need THE BEST there is in the practice. Don't know who or where he is, but save your money to travel when you find him. Dig deep. Call people, read forums, get opinions, recommendations, call teaching hospitals, call medical universities, Johns Hopkins, Mayo Clinic, etc. and find out who THE TOP MOST RESPECTED vaginal reconstructive plastic surgeon there is in the country - settle for nothing less - and then get an appointment with him. (Edit: the best and the top does not necessarily mean the most popular or well liked... it means the one most respected, confident, and with successful long term outcomes of what he does.)

Once you're in, if he recommends surgery, then consider his offer very carefully before agreeing to it, and if you take it this should be your last shot at a surgical solution. You might ask him if he has two alternatives to offer, a full extensive repair, and a less invasive, mere reopening of the vaginal fusion so that penetration may be achieved. I would be reluctant to allow even the best to do things like hang mesh from my sacrum. You might be able to live with low hanging tissues as long as the vagina is no longer fused so that you may have intercourse. On the other hand, it could be that the vaginal fusion is what is stopping things from prolapsing outside your body! Don't know... talk all this over with the guy in detail; pick his brain as much as you can.

If he says he cannot do anything for you, then your long search for the right doctor is over; you've been to the top, and you know you have no choice but to go back to option 1.

This is the approach I would take if I were in your position, and what you decide to do will depend on a lot of variables. I can't tell you what is right or wrong, but I can tell you for certain that information is your friend. Research, research, research. There ARE people out there who address problems such as yours, whether it is surgery, or it is working with things as they are, and it is just a matter of finding them.

I just want to add a couple of things, Anne. First of all, I think it’s presumptuous of us to assume that all this started for Jacqueline because an episiotomy was not performed during her first delivery. It is not uncommon for first-time mothers to labor for 36 hours and have a totally positive outcome. However, laboring for 26½ hours in a traditional hospital setting was probably not the ideal and we have no way of knowing what really transpired there.

I think it’s good that she be encouraged to exhaust her surgical options by seeking out yet another opinion from a well-respected reconstructive surgeon. However, surgeons have known forever that there is no operative fix for the surgically shortened vagina. Whether there is any treatment for the tremendous fusion that has occurred in Jacqueline’s pelvic interior only a surgeon could possibly predict. This is a terrible case, but one that is not rare. It is no accident that adult diapers now take up an entire shelf at the grocery store when fifty years ago you could only find them through little advertisements at the back of Reader’s Digest. Fecal incontinence is the best kept secret amongst both doctors and women alike.

Most sensitively, I think we have to be very careful about suggesting that someone who has suffered like Jacqueline has might have the remotest interest in sex. Until you’ve attended a HERS Conference (www.hersfoundation.org) and listened to castrated woman after castrated woman, many of whom still have their non-functional ovaries, tell stories of complete disinterest in sex – as in excruciatingly painful to even think about – it’s easy to assume that these women are still remotely physically, mentally, or emotionally capable of any level of sexual activity. The most poignant and true love stories are the ones whose husbands vow to remain in non-sexual relationships with the women they love. Men have a way of taking care of themselves under extreme circumstances.

I agree Christine; I didn't imply no episiotomy was the cause of all her problems; just that somewhere along the line, somehow she got into this mess. And I agree, if there is no interest whatsoever in sexual contact of any type, forcing oneself is not the answer. But it is a two way street... if a husband can be loving by living with no sex from his wife; conversely, a wife can be loving by doing things for him even if she has no drive and gets no direct sexual pleasure, only the pleasure of knowing she is pleasing him. It isn't up to me to advise OP in this area; just saying what I would do.

...I edited my post yesterday to make it sound less like I was implying that you were assuming...but still it does...sorry! I wanted to make that point since I first saw Jacqueline's post and so just slipped it in! Yes, I'm sure there are all manner of compromises...but my point was that when sex ceases to make sense at such a deep level for women, a choice that was commonly expressed was that it just peacefully go away. It is tremendously sad that so many women have to be compromised at all!

No worries... I'm with you 100%