Congenital Anomaly #3!

So, its been a while since my last post. I ended up back to the GP to see if she would send me for a MRI or at least to a spinal surgeon to get to the bottom of why my back pain and nerve pain has come out of nowhere. She reluctantly sent me for a Spinal X-ray of my sacroiliac joints and lumbar spine...that was this morning and guess what!? I now have yet another diagnosis... one im sure none of us were expecting!!

Isthmic Spondylolisthesis and Spondylolysis (congential spon″dĭ-lo-lis-the'sis): is the displacement of vertebral disc from the spinal column caused by a lesion/fracture of the pars interarticularis. At this stage im Grade 1 which is 0-25% forward slippage, so conservative treatment options only and unlikely to result in need for spinal surgery.

Spondylolisthesis

This link above will give you the jist, but long story short one of my vertebra sits 5mm forward at L5/S1 which will explain long history of lower back pain and a whole lot of other things! Like why ive never been a runner, hated exercise, have weak legs and never liked sleeping on my back and wake up with pain in my back. Its interesting as once GP left a message on my voicemail, DH googled it straight away and I ticked every box on the symptom list! why wasnt this something everyone thought of? surely they could have googled my symptoms.

Biggest issue now is that its most likely to be causing my sciatic issues in my leg even tho my GP didnt seem to think so, we had a really tense conversation about it as she was happy enough for me just to 'deal with it' and live on paracetomol which only masks the pain, I still feel it through that but im unable to take Anti-Inflammatories due to my Renal Agenesis, so that leaves Codeine and Tramadol. Neither of which I want. So off to a Spinal Surgeon I go, again, not something the GP was keen to do either but grumpily I advised her that im not the doctor here and I need a treatment plan, I cannot continue to work without getting some form of treatment, If the Spinal Surgeon decides not to do an MRI and its just something I have to deal with via nerve meds and physio, so be it, but im not going to just be fobbed off. One of the symptoms of my condition is that butt and leg muscles are tight, so here is hoping treatment is just as simple as a bit of physiotherapy to reduce the compression on my nerve and i'd be happy with that. 

So, again, the chronicles continue. I'm elated we now know what is going on and its not that serious (yet...), again I know my body and I know when something isn't right enough to do something about it. Its my dear friend that keeps me battling, she was always so supportive when I first started this journey however she wasn't listened to in hers and her time on this earth was cut short as a result. I vowed to be my own advocate and trust my gut. Thanks hun, you and I would of really have a laugh at this one, who would of thought id end up with another one on my list and another specialist/surgeon. LOL! Now that i've been referred privately to a Spinal Surgeon its going to be a bit of a wait I think. In the meantime ill be chatting with my Osteo, I don't think ill be going back there unless she can do something magical to help in the meantime.

I will of course do a more detailed post when I know more, I might even update this post... its going to end up a book so I have to keep all my info in one place. 

Also, In the meantime we will be embarking on a new journey which we'll probably also document here, the hunt for a surrogate! its going to take a while here in NZ (if we find one at all), ECART ethics committee deems you must know the person or spend 6 months getting to know them before you get approval. We might proceed with a cycle and freeze some embryos just in case yet. everything is very up in the air right now but we are not rushing ourselves with any decisions, there is lots to look into first. This diagnosis though has really decided for us as NO way I will ever be able to carry a pregnancy. Its a shame, but i'm not going to let it define me... as Lada Gaga says, "Don't hide yourself in regret, Just love yourself and you're set, I'm on the right track, baby, I was born this way".

Sacroiliac Joint Dysfunction?

Yup, just add it to my list. I think going to the Osteo is a double edged sword really. At this stage it has saved me from the inside of a MRI machine for the 3rd time, but weekly visits are hurting a wallet a little at NZ$70 per session.

They are still not sure what's going on.. yes..they. As of this week I now have TWO Osteos. My current Osteo was on leave for the school holidays this week so referred me to a colleague who ended up giving me a second opinion really. I had a really interesting session this week learning how the left is also affected and may contribute to whats happening on the right. I booked in to see him next week before seeing my other Osteo again the following week. At this stage we are working on my major issue, which we are leaning towards the below diagnosis based on my symptoms: Sacroiliac Joint Dysfunction.

Interestingly enough, the sacroiliac joint is where my Fathers condition started, Ankolysing Spondilytis, however I have been tested for that gene and was found not to have it. Due to the Auto-Immune side of things could work out to be plain old arthritis yet, or just lack of proper movement for far too long, we will see, plenty more assessing to do. 

What we do know is nothing from my diaphragm down really moves freely like it should, your organs should massage each other. Time spent at the Osteo is to start to try and fix some of that as I am now entering the chronic category, I haven't been very symptomatic over the past few years but this has been gradually getting worse, seems I'm so used to pain I just muddle through with it. But this nerve pain is a killer. Its not so bad right at the minute but if my nerve is trapped it may get worse and damage might be hard to repair, but enough for me to react to it. Only time i get relief is when I'm lying down in the evening, most painful when sitting and standing, driving. Seems to be ok when walking but tend to run out of energy, chronic pain is quite tiring. I have much respect for those that battle worse situations than I, most of all my Father, he is a true warrior and that's definitely where I get my pain threshold and determination from. I just think of those dear to me who battled and are currently battling the unthinkable, how courageous they are and how very hard life can be. It definitely raises me up.

So, one day at a time now, work has been great, they give me use of the standing desk whenever I need it, my new job has the flexibility to work from home too as my Osteo is close to home, i'm very lucky in that respect. Will wait and see what unfolds really. Both Osteos want to keep me on and see it through as once again i'm a very interesting case and they are learning a lot, bringing out those old textbooks. There is just so much to potentially fix, just trying to concentrate on one thing at a time.

What I know for sure though is this body is definitely not in any fit state to carry a pregnancy. With this in mind its time to explore all options relating to surrogacy as reality is my body may never be up to it, its something we always knew but seemed unfathomable and unreachable here in NZ, we wont know until we try right?

So, its all part of the journey that is my life and I'm grateful for it. I will continue work hard, play hard and be a better person no matter the circumstances.

Between a rock and a hard place

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!

So....Osteo!

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.

OB/GYN again

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.

Ambivalence

My hope for todays appointment, our second opinion with our new Fertility clinic, was that we would have more of a plan? A yes or a no? a budget? Don't get me wrong it went great, our new specialist is amazing. But going private is expensive. NZ$250 for 30 mins of her time. She is very good at what she does tho.

We arrived early as another bonus for me is the new clinic is a 5 minute drive from my work and probably a 10 minute walk. The other clinic i used to have to leave 45 mins early and battle through traffic. Its nice to turn up to an appointment with time to spare, today it worked in our favour as the person before us ran late so she took us in first.

Dr told us that she had read our file first of, that really made me feel like we were in good hands as not many have done that in my medical past and I have to go over it all again, there were a few things I had to fill her in on... but she had the jist.

Time for my AMH level results..... the big I was most nervous about after 3 stim cycles... was 44! im ELATED! This puts me in the Green Zone (Above the 25th centile for younger, fertile women Very likely normal ovarian reserve – age is the best predictor of your future fertility 80% chance of 6 or more eggs in IVF), between the Average and 90th centiles even! Couldnt have had better news really. This now means I have a bit more time. The advice she gave us was that from 37 to 39 is when I need to be cycling next, sooner the better really as even though I have quantity at this stage, the quality will drop from 37 years of age. From 39 onwards are chances of normal embryos are very low. 

As for DH's sperm situation. Not great news Im afraid. We are looking like we will most definitely be needing TESE (biopsy of testicular tissue) during this next cycle. This means retrieving sperm before it comes in contact with semen (potentially containing antibodies). Problem is they cannot perform one even as a test prior to a cycle as the Embryologist has advised her that until they get into the ICSI setting we will not be able to tell if it was beneficial or not. If it is, we potentially might have a solution for better fertilisation rates and the possibility of freezing sperm for future cycles. They could get a biopsy and find that the antibodies have attacked already. Only time and surgery will tell, but DH has now agreed to the procedure finally so thats great.

We talked over all the options on the table with her, Lap resection again for Endo, Endo meds, TESE, Lap egg retrieval (too pricey), Donors, Surrogacy, Immuno-suppressants, the list goes on. 

Outcomes from today have been another appt booked for next week with my OB/GYN that did my last Lap/Endo-resection to talk about whether we need to go in again due to the abdo pain im experiencing and the bladder issues over past 12-24 months. Its been two years this month since my last surgery. She will also catch up with him about my previous surgery, have a look at the photos he took of my right ovary and uterus etc... they are just down the hall from each other in the same office. I think that work well, I'll be in good hands with them both, two very good specialist surgeons. As far as our Fertility Journey goes still no real plan as of yet, or budget, we need to decide what we want and need before we price it all up, I know this much its not going to be loose change, we are looking at at least NZ$16-20k, so we have to be smart. Make good choices. Trust the experts.

Next on the list is a appointment with my Colorectal Surgeon, trying to get sorted the pain im having in my right hip, my back and my sciatic nerve. Ive been in a lot of pain for the past few months and the GP thinks I should see a physio. With all that I have going on with my anatomy I want to check with my existing specialists first before throwing a Chiropractor or a Physio in there as well. I think its related to me sitting all day at work and then sitting when I get home in the evening, not enough moving around. Hoping that few exercises will help and its not something more sinister like a slipped disc. Forgotten what pain-free feels like, its always something with me. 

We haven't given up just yet so plenty more updates to come... watch this space!

New clinic, new path?

So we did it...eeek! Booked in for an info evening at the only other private Fertility Clinic here where we live. Its been nearly 1 year since our failed IMSI cycle, can't believe we have left it this long really, but lots has happened this past 6 months.

It was a nice evening put on by the clinic, snacks, drinks, no-one really spoke to each other which was very awkward, I knew there were probably a number of couples or ladies there from my FB group, think its about time I joined a support group to meet some of them really, as it would have been nice to chat to others that night, not really the way it works sometimes though.

After the presentation we were invited for a tour around the premises, very nice clinic indeed, so different from the last. This clinic was purpose built so the procedure rooms were massive, the after procedure waiting area was so open and light and the embryologist's lab was very nice, she explained what all the machines were and her 'day' as it is only her there. That was nice and we have never had the pleasure of finding out where our cells are cared for and our embryo's were conceived. The staff their seem really nice, most of which if not all have come from the other clinic in town.

I asked the embryologist on our tour if they offered IMSI as noticed they only had one ICSI microscope and straight away she could tell we were not 'first-timers'. So we stopped for a chat with her and one of the nurses as we filled out the forms re a consultation with them and free nurses visit offered for attending the evening.

We are a complicated case, there is no doubt about it. Even after just talking to us for a few minutes they were intrigued. We have at least 5 of the 'factors' on the infertility scale they talked about as part of the presentation and a huge file to boot so we headed off home to transfer that file over to them so they could have a read through. My OB/GYN that performed my Lap Surgery and removed my Endo has connections with the clinic so that is great also, I think we are going to be in really good hands, not that I wasn't at our previous clinic but think now we will be paying upwards of NZ$15,000 we get to choose. We are booked in for a consult on 1st September, AMH bloods done (please let those numbers still look ok) and DH is now mentally preparing for the possibility of a biopsy as a TESE is something that should have happened right from the start. Amazing its these guys first thought reading our file, Ive been saying it every cycle, wonder why we weren't listened to, was it because we were funded? shouldn't matter but it does.

This is it though, this consult matters the most. This is the one where I have asked them to tell us 'is it still possible?'. We are prepared to use a surrogate this time if that is even an option. I just dont want false hope anymore. I want to know what our future holds.

Now to find the money, really tempted to start a GoFundMe/GiveALittle page, dont want to be 'that couple' but realistically with reno's we desperately need, family members we care for, new car I need, it may be a while before we can try again. SUCKS! but such is life. DH and I are still telling ourselves it was 'meant to happen this way...there is a reason we are still childless as we have been able to help others,' I have to keep believing it otherwise it is all too much to bare. When is it our turn for something great to happen for us? Thats kind of what getting my house ready is about. I need something to go right. To feel some joy for a while. Its not that im not grateful for what I do have. 

Long time, no blogpost

Wow its been a while since I posted last. Looking at the date of my 'draft' that I just found it was right after my father had been in hospital. The next few months were all about getting him well and into a smaller, warmer apartment for the winter. Mission accomplished!

As you can see from my previous blog posts I was starting to enter a bit of a dark place and was sick of looking forward and trying to create plans when my here and now was in such disarray. I seem to have been conveniently distracted for the past 4 months with being a support person for my family, a redundancy, a successful job interview and a trip to Manila! That business trip was very challenging on my health but I also learnt a great deal about what I can achieve when I put my mind to it and how much stress I can tolerate without breaking into thousands of pieces, and it's a lot. My time in Manila has definitely strengthened my want to adopt, DH still not keen on the idea of adoption at all but I hope we can talk it through some more. 

We are struggling with decisions full-stop at the moment and they all seem to revolve around money, so sometimes its easiest not to make one and be indecisive. Renovations need to be done before to make our house more warm and comfortable for children however that money could be used for Fertility Cover, IVF insurance which would allow us a few more tries. It scares me to think we are even considering another IVF cycle or two when the others have gone so terribly. At what stage to you call it quits? when the money runs out or do you find a way to keep going?  

I have taken some time away from my IVF support groups. I was sick of hearing how negative I had become and tried to pretend i'm not in the same boat as them. My mind was made up, that I'm not going to ever give birth to a child, that wasn't the plan for us and that i'm going to grit my teeth and smile when I see their BFP's, their scan photos in my news feed and comment on how cute their babies are. Easier said than done, but I am trying, really, esp. when my dearest friend has given birth to the most beautiful wee girl one week ago today. I remember our long chats we used to have about when we will be parents. Heartbreaking for me, overjoyed for her.

Anyhoo that's enough of a pity party for one night. Writing helps, I will make sure I do it more often.