I’ve had a few people contacting me asking how my appointment with the gynaecologist went last week – thank you for your concern 🙂 There isn’t much to report on just yet, but I thought I would post a bit of an update. If anything, putting thoughts to paper might help with the whirlwind of information currently flying around in my head! There’s quite a lot to contemplate and consider.
It seems that I am rather unique! Surprise, surprise! My gyno has spoken to numerous colorectal and plastic surgeons about my case, but nobody has really come across anything quite like it (or at least not with the same symptoms as I am experiencing). Or if they have, it hasn’t been discussed.
This seems strange. Obviously I’m not the first woman in the world to have her large intestine and rectum removed, nor to have a retroverted uterus. Is it another of those things that people just don’t like talking about? Maybe I’m just unlucky and for some reason my uterus has dropped back further than others who have had the same surgery? Maybe I lay differently after my surgery causing it to move more than others? Maybe I didn’t exercise enough or too much? Who knows?
The fact is my uterus (and vagina) are obviously quite severely retroverted. My knowledge of anatomy isn’t great, but looking at pictures and having this explained to me all makes sense and correlates with the symptoms I am experiencing. My colorectal surgeon did advise that things can move around after surgery, but didn’t go into any detail. I guess it’s hard to predict what, if anything will move, as everyone is different. Looking at this picture, you will get the idea! My uterus is now basically where my rectum used to be!
One thing my gyno is sure of is that he wants to try something non-operative as a first step. That is a huge relief. I don’t think I am ready for any more surgery at this stage, and like I’ve said previously, I do not want to do anything that could jeopardise how my ostomy is currently working. However, he has also said that whatever they do will be “experimental”. I am not sure I like that word when it comes to doctors and medical procedures!
Non surgically, he is thinking they can go in through the vagina, and somehow insert something in between the uterus and the back wall to prop it back up. He did consider using collagen (yes the same material used in breast implants!) as a filler, but according to plastic surgeons, the amount of collagen required would be huge and the cost exorbitant. One plastic surgeon suggested the use of fat instead. I prefer the idea of a natural substance, but where would they take the fat from? (Michael kindly offered up some of his!). There was mention that if the fat did not stay in place, there is a chance it could move into my stomach cavity. Would that mean my stomach would get fatter (without reaping the rewards of indulging in yummy foods as part of the process!)? Could this then impact how well the ostomy bag sticks onto my stomach?
Another option is the use of the omentum (a lining that surrounds abdominal organs) that apparently my colorectal surgeon left in there when he operated. However, to get at this would mean a surgical procedure. https://en.wikipedia.org/wiki/Greater_omentum
The other question is exactly how far back has my uterus dropped, and has it “stuck” itself against the back wall lining. How easy and safe will it be to “unstick” it? There are also things like scar tissue to consider. I am going for an MRI which will hopefully give the doctors a better idea of the architecture of exactly what’s going on in there, but then what?
We’ve also been asked the “do you want children?” question, and I’ve been told quite bluntly that my biological clock is ticking! I know – that is true! However even when forced to ask this of ourselves, Michael and I still go around in circles. If the answer was no, what does that mean anyway? Does that open up other options? Would having a hysterectomy and removing the uterus all together fix the current issues? This would mean major surgery, and is that even warranted or necessary?
It’s all rather confusing and overwhelming. A close friend suggested posting on some online forums to see if anyone else can offer any advice. Surely someone else out there has had the same thing happen? I have posted on a number of forums, and have had a couple of responses from people who have experienced something similar and can relate, but nobody has had any mind blowing advice so far. Someone mentioned their surgeon placed a mesh barrier over the empty space when having her colon removed to stop the other organs from falling into the area. That’s an interesting concept. Too late for me now, but perhaps something to consider in future (once it’s hopefully fixed) to stop it from occurring again.
Someone else told me they fixed their painful sex issues through physical therapy and doing women’s health stretching exercises. That is definitely worth a try! They also suggested birth control for my menstrual cycle, however I am limited with this, as I am no longer allowed to take the pill due to having a pulmonary embolism in 2011.
At this point, the next step is wait for the MRI results and then go armed into our next appointment with the gyno with a list of all the questions and what ifs that have been going through my mind for the last week.
Apologies if this post is confusing and all over the place, but that’s where things are at right now! I am staying positive and trying not to worry or think too much about it. We are not going to rush into anything hastily, and I am sure things will pan out.
I’ll keep you posted.