NEED DOC WHO ADDRESSES ALL PROLAPSE ISSUES

[AuntNetty]

Hi Guys

Maybe question to April or Violet. Just wondering what to do next....as usual. Since my surgery on April 15th with Dr. Hibner i am having problems. I am not doing well. To the point, Hibner MRI in February showed i had a cystocele, rectocele, and now a peritoneocele. I had cystocele and rectocele repaired in 2006 when my uterus and cervix were removed. It is this repair cleveland clinic thinks started my pudendal issue, according to them this happens often when the repair was done in this fashion (hand stitched with polysorb). Anyway, Hibner addressed many things but not cele issues. Botox paralyzed my muscles needed to pass stool. I subsequently suffered severe rectal prolapse on my first attempt when i had urge for movement on April 19th 4 days later. Did not even know this could happen to a person. No issues were discussed with me before surgery. My legs and ankles were swollen so bad i had to wear flip flops home, which was also not discussed with me, I took picture and text to my fam doc. He sent me to emergency room. They pushed it back in and said their not a pain clinic, follow up with fam doc. Text him new pics and sent me to different hospital. They charged me $13,000 for x ray and ct scan which showed i was impacted. They sent me home with piece of paper saying i was treated for constipation. I wasn't treated at all. They said they are not pain management center and sent me home. I had been taking laxatives all along since surgery as prescribed. Anyway, i had to pass this impaction on 3 separate occasions screaming and bloody for hours, pushing it out manually from all sides, like i live in a third world country. When we called Hibner office on Monday, I was told Dr. Hibner already knows, he was called by Emergency Room over the weekend. There is nothing he can do about it as he does not deal with rectal prolapse and to follow up with family doctor. I since have 1st available appointment with colorectal surgeon on June 3rd. I wish i could attach pictures as you could not believe it. Now prolapse is inside but rectum sticks out and looks like a crime scene. Dripping blood all the time. Having urinary and bowel accidents and wearing diapers. Worse pain than before and new pain on left pubic bone. I need to get to the point before you stop reading. All of these issues are related...and rectal prolapse was caused by botox, blood and guts and veins...its bad. Now why can't doctor address these issues??? Am i going to get another chop job and find out colorectal surgeon who does not address cysto, recto, peritoneocele repaired my prolapse incorrectly and now i can't get my other issues addressed because of the way he repaired it. Its a pretty major operation according to Dr. Google. I also have gigantic hemorrhoid issue..i didn't even know they were hemorrhoids, nurse at fam doc told me they were, not hospitals for $13,000. I had hemorrhoid surgery in 2010 and had to have 2nd emergency surgery as i almost bleed to death. Didn't know i had hemorrhoids anymore...they are giant swollen balls that protrude under skin about 2 inches around...both of them. WHO CAN ADDRESS ALL THESE ISSUES TOGETHER AS THEY ARE ALL PHYSICALLY TOGETHER. NOT EVEN SURE WHAT ORGAN IS AT THE OPENING OF MY VAGINA. As soon as my pelvic floor therapist saw it she said you need a LAWYER....NOW.
I guess common sense told me as soon as Hibner found out, tried to send them pictures, they say they cannot accept pictures, he would say get back down here as fast as you can. I have colorectal team i work with...we need to fix this asap. but no, cannot even talk to him. His assistant Dr was supposed to call me yesterday, only in on Wednesday, I called again, but received no call back. Not sure i want local colorectal doc who knows nothing about pudendal nerve, genitofemoral nerve and inguinal nerve..both which were just cut during surgery on April 15th, to even operate on me and this is who i'm waiting for on June 3rd consult. HELP. ANY ADVICE...ANY DOCTOR TO ADDRESS EVERYTHING THAT IS RELATED. HOW CAN THEY NOT BE RELATED???

[AuntNetty]

Why is it colorectal surgeon will only address new rectal prolapse (from botox) and hemorrhoids and not address cytocele, rectocele, and peritoneocele and pelvic specialist will not address rectal prolapse and hemorrhoids. i can NOT be the only person in the world this happened to. They can't work together to fix me??
I need help...please

[AuntNetty]

Lets not forget, my family doctor cannot find pain management who will accept pelvic pain patients...Must be nice...What am i supposed to do???
I cannot live in pain like this. I live in the United States of America. Where is God's mercy now? They just do this to you and then refuse to help you or find anyone to help you??? NOT ACCEPTABLE. Don't know what to do about anything anymore. I guess i need to reschedule post surgical follow up for Hibner, per their advice, till i get rectal prolapse repaired....what????? Should i even go back. I cannot be the only person this happened to. They probably don't want me to come back.

[AuntNetty]

It's me again, per the advice of my family doc, since no one will help me, i signed up for Medical marijuana. $320 to see doc, who prescribes it, $25 state fee..since i'm on disability now....worked for 25 years when i was a real person. Then it was $120 for some tincture you put under your tongue..with disability discount. Don't notice anything....it's like bringing a squirt gun to a barn fire. Now what, on top of everything, i'll be treated like a drug addict now...whatever.. they were not helping me before...it doesn't do anything. Taking advantage of people in pain, instead of helping them. If it was their daughter or their mother, would they be treated like this?? I have thrown every dime i have toward this...closed my 401k, closed my childrens savings accounts, took loan out on my house. I haven't even received bill from Hibner for Feb visit, let alone how much my surgery and botox cost, that i had to sign agreement that my 2 insurances probably won't cover it and it must be paid in full before they release my records..I'm only shitting blood, not money. I already received bill from 2 ER visits on April 20th and April 21st. That's how i know its $13,000 dollars...for no help at all. My doctor thought they would admit me, but they said they do not have a colorectal surgeon...then why would you send me there??? I'm done. Can't do this anymore

[April]

Hi Aunt Netty,

I'm so sorry to hear that medical marijuana didn't help and about all the expenses. Are you on disability? I'm sure you would qualify. If I think of any other doctor ideas, I'll let you know.

April

[Patty]

I've read through all your posts. Do you live alone? Are you on disability? If not you need to obtain a lawyer & start that process. I would absolutely go to your
follow up with Dr Hibner. If you don't they will wash their hands of you even more than they already have. Maybe if he see how bad the prolaspe is he will
understand why you are so upset about the outcome of your surgery. The Botox will wear off; it does not last forever so the rectal prolaspe may improve. After
my 2 rounds of pelvic floor botox if I needed to have a bowel movement I had to get to the bathroom ASAP if not I would leak. It did nothing for my pain so
I understand the disappointment. Its good you have an appointment with a colorectal surgeon coming up soon; but If i were you I would put off surgery at all
costs.
You will be in my prayers tonight

[Suekarlson]

Hello, the nerves may be causing you to feel like you need to have a BM which could be a false alert. This has happened to me. Change to a Keto diet ASAP. Lots of fat in diet. Use lidocaine on area. Start doing breathing exercises in through diaphragm out through mouth as your ribs come together. You cN have a bowel movement using a technique breathing in through diaphragm out through mouth as if pressing through bra strap area in the middle of back. So arch in back
When doing the breathing. Hold the out breath and this will open your anal sphincter. No pushing downward. When finished draw up through pelvis. This will close anal sphincter. Takes practice with physiotherapist. Then you build off this exercise to strengthen and stabilize pelvis. Using nerve gliding exercises from physiotherapist will help. Calm down your nervous system with dry needling from physiotherapist. The muscles will relax and stop strangling the nerves. Good luck!! You can do it ! Be your own advocate! Every physiotherapist is different. Tell them exactly what you need and forget the embarrassment. You want to get your life back!

[Violet M]

Hi Aunt Netty,

I have been traveling so haven't been able to go online much but was very dismayed when I read your post and wanted to reply. Not sure I have anything very wise to add but for whatever it's worth I will weigh in here. I would be interested to hear how your June 3 appointment went.

First of all, I agree with Patty that most likely the Botox will wear off over the course of a few month's time -- hopefully (fingers crossed), but I would definitely decline any future Botox. My urogynecologists recommended I not try Botox due to my prolapses because it causes the muscles to relax and can make prolapses worse, so I never tried it. I have some pretty severe prolapses but I will not have surgery to repair them because I have been told by my urogynecologists that pelvic floor repair surgery can make pelvic pain worse. I manage my prolapses using thigh shapers with a thick pad inserted. It's not a perfect solution but I am able to be very active with minimal discomfort. I just can't do heavy lifting. I do not have a severe rectocele so I can't say for sure the best way to handle it but you might want to start with conservative treatments such as thigh shapers with a pad as mentioned above and if cleared by your doctor, you could try alternating very warm sitz baths with cold sitz baths to promote healing to the tissues in the area. Hot/cold hydrotherapy brings fresh blood to the area and takes away toxins and is very healing. You could also add epsom salts to the warm water because it can draw out any possible infection and promote healing. Typically with hydrotherapy you want to do it at least 4 times a day. You sit 2 minutes in the warm water and 30 seconds in the cold water, alternating back and forth 4 times and ending with the cold. I used a set up of 2 milk crates in the bathtub with 2 shallow plastic storage boxes on top of the crates - one for hot and one for cold. I sat on a child's floatie ring in the water and I did this therapy for months until my pain levels were lowered. I would only try this if your doctor thinks it is OK for you to sit in water.

There are some things surgeons cannot fix. If you decide to go the surgery route to have the prolapses repaired, I would only do so if you can get several urogynecologists and colorectal surgeons to agree that they will be able to help you. I would not take one doctor's word for it. You are in a severe situation right now and I would not jump into having surgery right now unless you have some unanimous opinions. If you are able to see Dr. Hibner again for the follow-up visit, I agree with Patty that it would be a good idea; however, I would not agree to anything without a good explanation from Dr. Hibner himself on what he is going to do and the rationale for it. You might also want to consult with Dr. Eric Bautrant by email and see what suggestions he has. I don't know whether either of them could help with the prolapses but they might have a recommendation regarding continued pudendal neuralgia pain. I remember when I was in France Dr. Bautrant offered to include a cystocele repair when he did PNE release surgery but I opted not to do it. I am just throwing that out there to let you know that he does have experience with prolapse repairs but I don't know if that includes rectocele repair. I will say this about Dr. Bautrant. He is a brilliant surgeon and a compassionate guy but he will not answer endless questions via phone or email. He may talk to you once or twice so you need to keep it succinct and focus on the important points. He really has to see you to give you an adequate opinion.

I have suffered from severe constipation for years so I have a sense of how it can wreak havoc with prolapses. Straining is a real problem. I think it is imperative for you to keep your stools the consistency of applesauce in order for you to heal and to avoid straining because any straining can set you back with the prolapse. My guess is that this will require some pretty extreme measures for you. There are various combos of things you can use and I don't know what will work for you but our website has a section with suggestions on avoiding constipation. http://www.pudendalhope.info/node/32

When it comes to lawyers, you would most likely have to prove negligence on the part of the doctors which can be difficult to do if they have followed standard of care protocols. So, I don't know if going that route would be chasing down a rabbit hole or if it would be worth it to try to recoup some money for future medical treatment. Consulting with a reputable attorney might give you some answers and could be worth it if you can get a free initial consultation with an opinion on whether they think there is any point in pursuing it.

Regarding pain management, I knew a guy in the Dayton, OH area who was trying buprenorphine for PN pain but I don't know where he got it from. I think it was from a pain management doctor in the area but I'm sorry, I don't know who it was and I am no longer in contact with this person. You could possibly characterize your pain as lower bowel pain or abdominal pain instead of pelvic pain in order to get a pain management doctor to consider treating you. I'm not sure what the answer is there. Just one suggestion though.......I enjoy your sense of humor and wit on the forum, especially when it comes to poking fun at the medical system. So many of us have been through similar less-than-satisfying experiences with doctors. But in order to receive the best care, you have to avoid any "attitude" when you are seeking medical care. My guess is you are already careful to do this but it's something we have to keep reminding ourselves as patients - to be assertive but not snarky. (It's OK to vent here though!) Most of the physicians who treat us are doing the best that they know how and are not intentionally out to hurt us or to withhold treatment that they think will help and are able to provide. Often they just do not have all of the answers when it comes to treating chronic pain. Some diseases are extremely difficult to treat and I think we have to be careful about being critical of medical personnel if they are not able to work a miracle. Often their hands are tied when it comes to distributing pain medication because of the patients who have abused these drugs. Doctors are in very real fear of lawsuits associated with distribution of opioids. There are some physicians who are bad actors but most are not. They are bound by some pretty strict laws. I happen to think the laws stink but it's lawmakers we need to focus on for change in that area. There are non-opioid procedures that may help with chronic pain such as neuromodulation and pain pumps. Not sure if you have researched any of these but it is something to keep on the table when you are considering treatments.

OK, sorry for the long post but I am trying to think of anything I can that might help you get out of this difficult situation you are in.

Violet

[promothecode99]

If one of the pelvic organs – the bladder, the uterus, the intestines, or the rectum – has fallen down into the vagina, we call it a “dropped bladder” or pelvic organ prolapse. Prolapse ranges in severity from very mild (i.e., prolapse that can only be felt by your doctor on examination) to severe (where one or more of the pelvic organs actually protrude through the vaginal opening). A severe prolapse looks like a red ball protruding from the vagina.

[jaxi123]

Do you have an update? Did Dr Hibner get back to you?