It had been a while since I was at my Bowel Surgeons private practise, coming up about 5 years nearly. Wow their office space is a lot different. A little classical piano playing in background, nice furniture and art on the walls. Noticed they even had a box with hot drink sachets like in a hotel, could smell the lady next to me's peppermint tea. It was very relaxing, lucky I turned up 30 mins early to fill in paperwork as had a little time to look out the window and watch the rain.
Dr was very busy so was about 30 mins late into appointment but that was ok as team had everything under control at work (I checked from waiting room haha, cant help myself). He asked how I had been, wasn't sure if he actually remembered me, seemed like he did, you kinda cant really forget my weird body once you have heard about it I suppose, he would of brought up my file before the appointment for a quick refresher I bet.
I told him I was here about pain today. I mentioned I was also seeing and OB/GYN and Osteo about pain and both were wanting me to check with him to rule out any contributing bowel issues. Turns out it was the right call really as got a lot out of this appointment, glad I did for $270!!
I did think about jotting all of what we talked about down here but you know parts of it are TMI so ill give you the jist... through diet my symptoms of IBS have somewhat improved to the point where i don't rely on the glycerin suppositories anymore, however my bowel still does not function the way everyone else's does and probably never will again. Going 1-3 times in a 10 day stretch is seen as an improvement, still I suffer from constant pain across my belly button and down my right side where we have confirmed my cecum, like the Osteo predicted, is dropping down lower than it should when full and might be causing pressure on my ligaments, but definitely my bladder, so finally after all these visits we have confirmation of whats causing my bladder discomfort/pain. Also my lower back pain is definitely contributed to by my bowels when they are causing discomfort, however they are not causing the nerve issue. To assist in the reduction of pain (whie we try and fix whats causing the nerve issue) he has prescribed me Movicol for the next 6 weeks to see if there is any reduction in pain or improvements in movement, this will add extra water to my system, supposedly not so much that I need to stay close to home (if you know what I mean). Its also a drink, which is great as it means im getting into the habit of drinking more water too.
He is now tossing up whether to do a follow-up Colonoscopy as my previous one was 10 years ago just about, however thinks we may benefit more from doing a CT Colonography. He will not only check for anything untoward, he will be checking my other 'issues', the length of my bowel, the bowel muscle itself and how I react to pain as he will be blowing it up with air. All of the outcomes of that will determine the course of treatment going forward, he said its likely he will need to act on his findings with surgery so doesn't want to throw that all at me at once, try the Movicol first and look at that next year, hes away at Xmas, so if follow-up leads him to book me in for more diagnostic work, we can make decisions from there. He wants to wait and see what outcome the Osteo has for my back too as he has even offered to refer my for a Spinal MRI now, thinks my nerve pain in leg is disc related. Please do not let that be the case!
Last but not least, he brought up my functional bowel MRI in this appointment to talk about the issues my cecum may be causing putting pressure on my other organs. It was then he pointed to several greyish spots seen on my uterus, spots of what he thought were possibly Adenomyosis. I had never noticed them before then on the scan and wondering if anyone else had? for him to point them out straight away how could my OB/GYN of missed that during my Lap? Sighhh, now Ive got to email my Fert OB/GYN and see what she thinks. That would be something we need to get to the bottom of before our next cycle for sure.
So I have a follow-up booked for 28th November at this stage. Osteo on Thursday again, will update after that. I have a feeling its going to be another eventful 6 months, lets hope I stay employed as going to need my health insurance!
Well I phoned the Osteo and Colorectal Surgeon this past week. Jeez my bank account is not liking this much at all, luckily parts are claimable as im still technically diagnostic for some parts. Turns out the Osteo wasn't taking on new patients for rest of the year, until it I mentioned I was a referral from a surgeon. I then ended up with two bookings in November and my name on the cancellation list. That seems like a long wait, but was sure it would go quickly.
My cell rang today and It was the Osteo clinic. Wow its only been a few days. Cancelled appointment, could I come in at 2pm, sure! Thankfully I have an awesome team at work, so tidies up loose ends and headed over there, knew I had paperwork to fill in and we all know I have a lot to fill out normally. Met the Osteo and headed into appointment. Im not going to go into too much detail but will cover what I think we might have sorted in the first consultation. I was there for my lower back, hip and sciatic pain, there is so much else I'm sure she will fix for me going forward.
I explained to her that its only been the last 4 years that I have come to learn about my differences in anatomy, how my body works differently to others, complications we have faced with fertility etc. She got me to stand and felt my back, I'm really tight right through my shoulders and back and my hips aren't as wonky as once thought! Good start haha. As we spoke more I started to remember things that I hadn't added to my paperwork I filled in, more importantly my lack of half my reproductive system and the shonky ovary. Lol. She hadn't really heard of a Unicornuate Uterus so this was going to be really interesting for her I'm sure. She asked a bit about the fertility treatment history and then apologised and made sure I was comfortable being there considering they were a Midwifery Centre as well. I assured her not only am I not shy, have a high pain thresh-hold but I am also very strong-minded and would be fine.
She asked me to lay down on the examination table and relax so she could get an indication of where this pain as originating from... its so hard for me to pinpoint. It shoots out from my lower back into my hip/sitting bones then heads down my thigh into my knee and down to my right foot. I'm thinking it has always been there for a while but was somehow exacerbated by my Lap surgery.
One thing they tell you at the Osteo (if you haven't been to one before) is that sometimes it feels like they are doing nothing... but they are always doing something. I likened it to a nice light back and abdominal massage, it was actually her exploring my anatomy while we talked about the location of things. In particular we talked about all current 'issues', missing parts, parts that aren't where they are suppose to be and then we focused on this strange painful long lump in my right side. That bothers me a lot of the time and is separate to my Endo and Back Pain. Turns out she thinks is Bowel, which I have always said that is was, where it gets interesting is that its possibly Large Bowel but shouldn't be down there? Its something I'm going to get to the bottom of though as its been noted on my ultrasounds but nothing was found during my lap surgery, time to revisit those scans I think, she was going to access them and take a look. Good spotting by her! lucky I have one more appointment with her before the Colorectal Surgeon in a few weeks time.
One thing she noted is there should be series of ligaments that would have been present on my right hand side to hold onto my kidney may or may not be there, what is holding my right ovary up there near my liver, with that lack of structure it is possible other parts of my anatomy have decided to claim that space? We shall see.
There are definite links to what is going on with my ligaments, nerves, musculoskeletal system right throughout my abdomen and its going to be a lengthy and costly process to get me to start to come right I think, she warned me after today I may feel worse for a few days after all the poking and prodding, I assured her that I can handle it. She is now off to get her text books out before our next appointment as I am a bit of a complicated but interesting case (surprise surprise) and again she might draw on the knowledge of her colleagues too, I feel like I'm in good hands. I'll continue to take Paracetamol when it gets bad enough and try not to sit or stand for too long.
Meanwhile you know I'm going to google it all right, there has GOT to be someone else out there with the same thing going on surely. Next week should know more so likely I wont update until then, it depends what I find on Google.
So today was the OB/GYN followup visit, one week since I met with my NEW OB/GYN. How many does a girl need? this is my 4th haha.
He was looking forward to our appointment, turns out he has been thinking of my case and hes been talking a bit to colleagues about it. My stray ovary still seems to fascinate him and he was quick to tell me again today that once I have children he is taking it out. Its not staying in there he told me. Not looking forward to that surgery!
Turns out my NEW OB/GYN Fert. had not been in to see him, she mustn't of had time so he quickly scanned her notes and then we had a chat and DH and I filled him in. My real reason for seeing him today was to see if I needed to revisit a Lap for my Endo and we quickly go back onto the subject of pain. Where/when do you have pain currently.... so just the usual.
We talked about my NEW pain since seeing him last and he agrees with my new specialist that it would be very unlikely Endo would come back with vengeance in a two year period, possibility it could have been stimulated by my hormone treatments but again very unlikely. He popped me up on the bed to check out my abdomen and it turns out the the pain I mentioned then was not related to the tissue in my abdomen but more so the bone. Yup, knew it. He got me to stand up, checked my shoulders, made me sit down and checked soles of my feet. You have curvature in your spine and you're lopsided he proceeded to tell me. Something DH has been telling me for some time. He ha now suggested that I go and see his Osteopath whom happens to specialise in pregnancy as well (lucky me). He said she will refer me again if she thinks is a Chiropractic matter. He thinks my other abdominal pain could be related. Once that pain is under control we will have more of an idea of where my Endo is at and probably try medication over surgery. We will see.
So outcomes from today? Im now officially handed over to NEW Fertility specialist as she also is a Lap surgeon specialising in Endo. I will only go back to my other OB/GYN for the ovary removal i'd say. I'm a case he wants to continue to follow. He is seeing my NEW specialist at a meeting tonight so they will chat and he'll pass on all my photos to her.
I'm phoning tomorrow to book Osteo appt #1 and following that a Colorectal Surgeon follow up appt. Im sure it doesnt matter which way round I do those. Just need to get onto it, especially while I still have a job and health insurance!
Update after next appointment.
