Bladder prolapse and scared

[Bea]

I have had IC for over 16 years now..I have urethritis.. was diagnosed with pfd 4 years ago.. although had symptoms much much longer.. the muscles are just so so so tight, and I have to strain to P (I know makes it worse, but my p just wont come out otherwise) the only time I didn't have to strain is when I was recently pregnant.. gave birth 2 mos ago) via C section!! In 2001 I had a rectal prolapse (rectally prolapsed) repaired..

well for the last few weeks, I feel like my pfd symptoms have got so much worse; major pelvic pressure, my bladder never feeling empty.. no relief at all.. horrible clitoral pain and pressure, burning.. very very week urine flow.. I mean horrible week! well then two nights ago.. I had a horrible bought of diahrea as I was going which puts a lot of strain on the muscles, I felt a buldge out of my vagina.. I felt it and it felt weird.. looked down and saw a piece of meat.. went to my ob the next day, and he said it was my bladder and to see my urologist.. I went to my gyno cause I thought it was my uterus. I am very uncomfortable and in a lot of pain.

What I dont understand is I dont have incontinence, I have a very tight pelvic floor.. how the heck did this happen. Now I know I am not suppose to strain, and I am trying very hard but it just happens sometimes cause the muscles are so out of wack. My urologist is away till the end of the month I dont know what to do! What will he do? From what I am reading this is bad already since it produdes out of the vagina. I have had 3 children, but they were all C sections so I still dont get how tihs happened.

If I need surgery how will I care for my yhoungest only 2 mos now.. I am nursing, and hearing I cant lift.

please I need as much info as possible. I am terrified!! What will they do.. what will I do.. I am just at my whits end with all this

[ICNDonna]

I just responded to your other post.

Donna

[maryla]

Bea,

This happened to me too when I was 26 (I'm 53 now) I had what they called back then an A&P repair on my bladder and rectum and a hysterectomy. The same thing happened I was trying to go swimming one time on my period and because everything down there was coming out. I tried to put in a tampon and there was just no why it was happening.

I'm also really, really tight in my vaginal area, but still I had another bladder sling put in again about 3 yrs ago. I don't really get it either. You bring up a good point. I'm going to take this question to my pt when I see her in a few weeks. I'm starting to leak a lot again? hang in there! Oh our crazy bladders!!!!

Hugs and blessings

[aleet7]

Hi Bea,
I too have a prolapsed bladder and prolapsed uterus. I also have pfd. I've known about my cystocele for a couple years now but have not gotten it repaired partly because of fear and because I have 4 kids and no one to help while I recover! The pressure along with my IC symptoms is driving me nuts! Lately I've been taking vicoden for my IC pain and cystocele pressure and it is not helping me at all! I really think I may go ahead and get this repaired because it is not getting better!
Best Wishes!
Aleet7

[Cathyp20]

Bladder pessary

I'm not sure if it would help but Google bladder pessary. Cathyp20

[aleet7]

I wore a bladder pessary for a short time and it was a big hassle, putting it in and taking it out was painful. I'm still very active with my husband and the pessary had to come out everytime before love making etc...Also the pessary has to be checked to make sure that it is not rubbing and causing abrasions or infections inside the pelvic. It works for some but not for me.

[Cathyp20]

Pessary

I tried to use one for rectocele but it sat on my bladder and made my urgency worse and I couldn't use it but it may benefit some else. Cathyp20

[nmariebal]

I had PFD and underwent ONE surgery to repair small intestine, bladder, bowel and urethra prolapse and had a "cele" of each. Other than IBS and horrible constipation, I had no idea anything was wrong until one day I strained during a BM and felt that pressure you describe. I NEVER had incontinence and still don't. I knew it couldn't be my uterus because I'd had a hysterectomy 15 yr ago. I am an ex gymnast, currently still coaching and in pretty good shape - I asked myself - how did this happen? I have been told my carrying two very large babies, c-sections and hysterectomy and straining with IBS/IBD were all contributing factors to my eventual multiple organ prolapse. Did the Dr give you anything for the pain? I don't know about the pessary and never had one but it may be an option instead of surgery, at least until you can work things out. Google is a GREAT research tool!

Hang in there, but go to your Doc with a list of questions and I hope you get answers and relief soon.

[aleet7]

I wore the pessary ring and it was pure torture! I'm not one that can wear a tampon w/o feeling it the entire time. The pressure of pulling the pessary in and out was terrible.

I wasn't given anything for pain. I had 4 kids(none were large but the labors lasted so long). My doc wants to repair the rectocele, prolapse uterus and cystocele. I was told that the repair will probably irritate my IC. Right now I have a lot of pressure in my pelvic area, I have constipation and some urine leakage with sneezing or coughing. I have pain with intercourse because the uterine prolapse and cystocele is laying on top of the vaginal canal.
I read about the mesh repair and found out that there are some horrible reactions to that so that procedure is out. Any suggestions would be greatly appreciated.

Nmariebel, how was your recovery from your surgery? How long was it and what were your challenges?

Aleet7

[Sally939]

Having a prolaps really has nothing to do with pelvic floor or being tight. It has to do with the fascia between the vagina and the bladder or the fascia between the vagina and the rectum. Your fascia is week and caused a prolaps. We are all individuals once again. Outside of the straining all of us ICers tend to do from time to time; prolaps has nothing to do with IC.

There are many ways to treat it. You can leave it and watch it (with a doctor) or wear a pessary (there are many different types). You can have an anterior (bladder/cystocele) or posterior (rectum/rectocele) surgical repair.

In my opinion it is REALLY important to find a good doctor that has experience doing these surgeries. I really would go see like three different docs and find out how they would treat your case, why, and how many of these surgeries they do a year. This surgery takes some special skill and not all docs are interested in this line of surgery. A good prolaps surgeon will do at least 1 a month. All of the treatments are good, but they all have their issues so learn about them and weigh them out. I would read up on it, but there is a lot of good and false info out there. That is why I would educate myself a bit and then seek out a few docs to go see. The types of docs that treat this are Urologist, Gyn, and Urogyns. If it is uncomfortable, please go talk to a doctor. It can be treated and is fairly common.

[nmariebal]

Recovery from Cystocele/Rectocele

Dear aleet7:

I am so sorry that you are struggling with your prolapse and associated pain. I, too, experienced a lot of pain during intercourse, constipation, etc and described the sensation as though something was pushing against my bladder. My Dr's reply: because something was. It is NOT a pleasant sensation and I can empathisize with what you are going through.

The recovery from my surgery was, I won't lie, difficult. But I think that's because by the time I headed in to surgery there were SO many things that needed to be repaired. I was discharged on the 3rd day and was horrified that I was being sent home. Since I basically needed 24 hr care and my husband is self employed and couldn't take time off, I stayed with my 80 yr old (in incredible health!) Mother and my 2 daughters would come and relieve her from a "shift" occasionally. The biggest issue w/me was the bowel, the unbelievable pain and just getting the bowel to function. I was eating nothing but fiber and using enemas and it felt every time like I was trying to "poo" a small child. It probably took a good 2 weeks for things to start functioning somewhat properly but the pain was still there. As for the cystocele, I would have to say it wasn't that bad but I had an ileostomy for 3 weeks. The tube was left wide open for a few days after surgery and I would have to dump the bag. Gradually I would clamp it off and try to go on my own and would measure the volume of urine I passed on my own each time. After I was able to urinate a certain amount (can't remember the volume) consistently the tube came out. There was NO pain with the cystocele other than at the cite where the ileostomy was and, like I said, I believe most of my pain was greatly due to the rectocele. I had heard of reactions to the mesh netting that is used, but I had NONE and have been very pleased with the results (2 yr post op). My Dr and I had discussed my concern about a reaction to the netting and he uses a certain type (again, can't remember) that has less risk of reaction. I asked my Dr if I had any limitations once I was totally healed and he said "no" and I am a gymnatics coach and put a LOT of pressure on my body spotting young girls - lots of heavy lifting. But I am very scared that I will eventually need another surgery which I know is very common (years down the line).

Other than my IC, I am extremely happy with my surgery. Intercourse is still somewhat of a challenge but I know that the pain I have now is due to the IC. The meds are helping me and I am feeling much better now, thank God.

Talk to your Dr. - discuss your concerns. My Dr was one of the FEW in my area (SW Michigan) that does all of the repair surgery himself. Quite often this surgery involves a urologist and gastroenterologist (or more) but he is a specialist in all. I am blessed that he is so good and after reading these posts, I am aware of how he does everything he can to stay on top of every treatment, medication, procedures - when it comes to treating IC.

Keep me posted on how things go and what you decide to do. But be proactive - do your research and ask questions to help reduce your anxiety and make a decision based on what is best for YOU.

Nancy

[ICNDonna]

When something is making me miserable, I'm one of those people who, if it can be fixed, I go for the fix. When I had rectocele surgery, I was in the hospital one night and went home in the morning the day following surgery. I had a little drainage and "sat gently" for a few days, but I'm so thankful I had it done. My surgeon closed the "hole" that was allowing the bowel to protrude into my vagina. The surgery was done something like 16 years ago. A few years later, my bladder "dropped" and I have a sling. I asked the surgeon about the rectocele site and he said it was fine.

Donna

[aleet7]

Nancy,
thank you for sharing your experience! I've been reading on pelvic organ prolapse for about 4 years now(when I first was dx'd). I've read accounts from others about their recovery and to be honest, it scares me! I had 2 older children and 2 younger children(1 and 5 year olds) when I was told that I needed a repair. My mom was caring for my
Dad and my husband is self-employed. I was told that I would need help after the surgery and knew I wouldn't have any. That is only one of the reasons why I put the repair off. Since then my Dad passed away and now my mom could help me but...she doesn't believe I should have the surgery(she thinks I need to live with it).My mom believes that surgeries are money makers and most are unnecessary. I'm worn out from trying to explain to her why I should have the repairs. My symptoms are to the point where I see bulging and I feel bulging all the time in my seat area. I have to be careful when I sit down because of the constant pressure and actual bulging. I simply would not be able to take care of myself after having a prolapse uterus, cystocele and rectocele repair(I did hear that the rectocele repair was the most painful part).

I've talked to 4 different Uro's about their different methods of repair(One strengthened fascia, one did the mesh procedure and another used a procedure I can't remember the name of it but he was not confident in that procedure and told me that he hardly ever performs it). Three of them sent me to other Uro's when they found out my hubby was an Attorney. My current Uro is just waiting on me to call her to get the process started(back to no help issues). I do have friends but no one that could stay with me for a couple days. I don't know, I'm sure that I'll just have to buckle down and get this done because it's not getting any better. As another poster mentioned that prolapse isn't caused by IC and that is true. I just happen to have IC along with PFD and pelvic organ prolapse(lucky me). I too am very active(I play basketball and I weight lift). The heavy lifting doesn't help the prolapses. I do believe that I will have it fixed with or w/o my mom's approval. It's about "my" quality of life!

Best Wishes,
Aleet7

[aleet7]

Hi Donna,
I'm with you(if it can be fixed, why not fix it). A friend of mine's mom had the repairs done. She said the recovery was rough but she'd do it again because the results were well worth it! That is encouraging to me.

Thank you!
Aleet7

[ChrisNes]

I hear you...

a list of what I am dealing with;
Incontinence- around 1997, along with frequency, and urge
FMS-1992
Cervical Leep- 1998 for pre-cancer
IC- 2001 with hunners ulcers, scars, shrinkage 400ml last hydro
IBS- two operations to fix posterior repairs and scar tissue 2002 and 2009
pancreatitius-2010
POP- in 2001-2002 and all failed in 2004
Bladder tack, burch, sling 2002 " " failed in 2004, Hope to get fixed this year
ovarian cyst (pair size removed) endometrosis, and fibroid removed-2000
THA-(with a partial bilateral) still have oves and tubes 2002
Kidney- stone 5-6 in 2010
CFS-
CPP-
Cholesterol problems- inherited
I think the above is everything.







What is Interstitial Cystitis (IC)?

Interstitial Cystitis (IC) is a chronic bladder condition resulting in recurring discomfort or pain in the bladder or surrounding pelvic region. People with IC usually have inflamed or irritated bladder walls which can cause scarring and stiffening of the bladder.






What are the symptoms of IC?

People who think they may have IC should visit a physician for diagnosis. They may have SOME or NONE of the following:
Abdominal or pelvic mild discomfort.
Frequent urination.
A feeling of urgency to urinate.
Feeling of abdominal or pelvic pressure.
Tenderness.
Intense pain in the bladder or pelvic region.
Severe lower abdominal pain that intensifies as the urinary bladder fills or empties.



Who is at risk for IC?

IC affects men and women of all racial and ethnic backgrounds and ages. However, it is more common in women than men. Early prevalence research suggested that IC ranged from 1 out of every 100,000 to 5.1 out of every 100,000 in the general population; but updated epidemiologic research conducted in 2006 suggests that up to 12% of women may have early symptoms of IC.

What causes IC?

The cause(s) of IC is currently unknown. Its diagnosis is often made only after excluding other urinary bladder causes.

Current CDC Activities

The purpose of this program is to promote public awareness and partnership, provide interstitial cystitis (IC) education for the general public and for health care providers, and develop and enhance communication channels to allow for improved interaction and information sharing among those with IC, advocates for persons with IC and their families, those who provide care and services for persons with IC, researchers, and public health scientists.

CDC and the Interstitial Cystitis Association, a voluntary patient organization, are developing and implementing programs to enhance public awareness and health provider knowledge regarding interstitial cystitis. CDC is also promoting new partnerships, education, and communication at local and national levels regarding identifying interstitial cystitis, symptomatology, diagnosis, and referral to familial and health care provider support services.