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.

Bah Humbug

I randomly decided to stop at a beauty place today that I don't normally go to while waiting for my sister, eyebrows needed a tidy up. The beautician and I moaned about the Zen music playing. I then mentioned the annoying music in my prenatal yoga DVD i had while doing IVF. She asked how many cycles. When I said 3 unsuccessful she said please don't give up. She has had a real run of it, lots of cysts, operations, blocked tube, missing ovary and told at 21 yrs old she was unlikely to ever get pregnant. She gave up for years, went overseas and went to hospital with what she thought was appendix pain and told her she is as pregnant but is was ectopic and probably wouldn't survive. Shes now 7 months along. Miracles do happen. I had started to give up on the thought that it might actually happen for me. I think her and I were suppose to meet today.

So it has been a while. The past few months have been tough. We have been a bit mad and a bit sad. Just trying to deal with it the best we can. Between work, study and family we have been kept busy which is a good thing. Choosing not to think about it right now.

We have booked the most amazing trip away for a couple of nights for our 10th wedding anniversary and hoping to sit in the quiet in the bush somewhere and make some decisions. We are attending an Information Evening with Child, Youth and Family in the new year to talk about Adoption and Home for Life options so we have all cards on the table.

This year has been pretty challenging so I'm looking forward to a new year. I will endeavor to blog more as it helps to organise my thoughts.

Merry Xmas. Number 13 just DH and I. Can't wait till its over just like every year. Bah Humbug.

Review #3 & Counselling

So our review went well. Everyone was a bit bummed about our second BFN as they all had high hopes as the meds and egg retrievals seem to go quite well. We all agreed that once again our embryo's were not developing well enough to survive. Time to find out why.

We had chromosomal tests done that afternoon which took several weeks to come back but I'm glad to say there are no chromosomes missing. Thank christ for that, not sure how we would of taken that news. Next is DH's sperm DNA test, that will be in the new year. We just need a break for now, from it all. 

Counselling really helped and made us feel less guilty about being mad, jealous and sad. We have every right to feel this way, everyone in our situation does, its only those who have been there that truly understand how infertility feels. Would recommend even if you think you don't need it, you really actually do. It helps to talk about it with someone that knows these situations all too well. She was very helpful, we even talked to her about our feelings about Adoption, Home for Life and our past experiences with fostering.

We are taking some time out. Lots going on at the moment. just need to breathe for a while.