Simone. I just couldn't imagine ostomy nurses discussing sexuality issues. ALL of theET nurses I have encountered and that has to be well into the double digits because I am on my fourth ileostomy.. are completely focused on getting an appliance/system to work or solve the current problem I am having with my current appliance/system. I think the hugest thing lacking for me was the complete lack of information from my ostomy nurse BEFORE surgery regarding what an ostomy was. Granted my surgery was emergency.. but there was a meeting in which she came in to speak to me and mark me for my stoma. She could have at bare minimum brought in some ostomy appliances. I mean I had 2days waiting in the hospital from surgery decision to being on the operating table. I think an ET nurse should of spent more than 5minutes with me.
Anyways - suzy.. I am absolutely floored by what you described. As I have been dealing with the EXACT same problem to the EXACT same level you describe since my jpouch excision and back side removal and permanant ileostomy surgery last spring. Basically the vagina is tilted AND part of it bent/curved backward so that fluid sits on a "shelf". This fluid pools in there until it hits a certain volume and then RANDOMLY gushes out in massive volumes. Such massive volumes that pads etc.. won't deal with it.
I too was not warned of any potential gynecological issues; however I was warned in depth about potential urology issues. go figure. I strongly believe that the colorectal surgeons should discuss potential issues in advance - menstrual problems, pain, anatomy changes, sexual pain, and other gynecological things. This is a doctors job, not an ostomy nurses job. They are aware that these problems can happen so it sure would have been nice to know about it. In particular, for me... my jpouch excision and permanant ileostomy surgery was a long hard thought out decision-making process which involved myself, my surgeon's head nurse, my surgeon, and my GI doctor over about a 6month timeframe. At no point in time.. did anyone mention potential gynecological issues.
Anyways... this problem has been so major for me that I have found some "fixes" shall we say. I have been working with a urogynecologist to make this situation more acceptable to live with. First and foremost have you fully been examined for a fistula or any kind of opening in any of the walls of your vagina? This would probably have to be under anesthesia because if it is like my situation they cannot access your vagina in entirety because of the anatomical changes. My urogyn. checked me while I was checked while under anesthesia with my colorectal surgeon to deal with my perianal wound. If there is a fistula some of this fluid could be urinary or peritoneal fluid. This is the first step. Initially I had a fistula - from a massive abscess. So that was attributing to some of the fluid that was pooling. My fistula has now has healed on its own. But that was only part of the problem!
Then she had me douching every few days or so with just a vinegar/water douche. No chemicals. What this does is with the pressure of the douche water pushing up into there, it "backwashes" out the area where the fluid is pooling. It is super gross to do but it cleans out most of the fluid so that it won't gush on its own when you are in the grocery store or in a yoga class or out in a pub. Problem with this though it that you have to do it very often so it was causing irritation if you know what I mean, and I sometimes felt that some of the douche fluid was hanging out a bit up in there.
So most recently, my urogynecologist devised a contraption for me to proactively "suck" out the fluid. Depending on how much fluid is pooling or if it is just pooling on your periods.. kind of will depend how often to use it. For me, I can feel the gross fluid pooled up in there, so I know when I need to do this. Sometimes it is a couple times a day.
She also had me get a Mirena IUD. The goal of this was to reduce my periods, because like you.. they are massive and long just adding to the huge volume of fluids pooling. She could only do this in surgery because my anatomy is so changed. I cannot say whether the mirena has been a success or yet not. I have only had it for about 2months and it has been very painful. Supposedly it takes a while for the mirena to "settle in". But if it works.. it may make this situation entiretly more manageable.
I cannot believe what a relief it is to hear I am not the only one suffering from this supposdely uncommon occurence. I was very disturbed by my colorectal team not taking my newly shifted anatomy problems seriously, but I hunted out a very good urogyn. and she has been able to help me. So hopefully Suzy, some of the tricks I have described may be able to help you too
let me know.
and good luck with your project simone.
liz.
Post Edited (ddd45) : 11/8/2012 7:44:31 AM (GMT-7)