Mortality & Morbidity meeting

It had been some time since i posted last, that is really because i didn't have much to say other than the same old, same old. 

Recently I booked in my final fertility appointment to close that chapter for good with my OB/GYN and I wasn't quite sure how it would go, how I would feel and what the outcome looked like. It was meant to be sad? I was meant to be devastated and heartbroken? No, it felt right. It felt like my DH and I spent 2 years finding our feet, looking at what our future would look like and how we felt in our hearts. Its ok for us to be childless. 

So the visit to clinic was to talk about the 'what next'. There are specific anatomical issues that we have put off looking into, its been 5 years since they excised my Endo and since then I had x3 IVF cycles and over stimulated on each one so there has to have been some significant growth since then? Its hard when it comes to looking at the list of symptoms for Endo when it comes to me as I have chronic pain anyway, on any given day it could be spent too long on my feet, too long sitting down, ate the wrong thing, slept in the wrong position or lifted something to heavy. There is only one way to check and that is Laprascopically... again. We talked about this time looking into the contradictory scans and ultrasounds ive had over the years, specifically the one my GYN did recently that said unlikely for my right ovary to be ectopic (finally a diagnosis for that thanks to my extensive research) and focused solely on my 'adnexal mass'. 

So what is it? Adnexal mass, we know it has its own blood supply? From what i had read it cant be an ectopic kidney (kidney in the wrong place), its not an ovary as you cant have 3 of those... if you read the link above it can be all kinds of things, possibly even a tumor but you would think it would of killed me by now if it was malignant. All i know is that one of my MRI's from 2014 called it an ovoid solid mass which isnt necessarily a good thing. My previous GYN didnt want to go there during my last surgery, he ran out of time i think as my endo severley infultrated my ureter and took some time to deal with that. He did however take some spectacular photos of my streak ectopic ovary and lucky he gave me photos as then proceeded to lose them so I was able to scan and send a copy to my GYN just the other week. She thinks she might be able to take it out, depends on how it is attached however. 

So the long and the short of it is I meet with her next month to discuss and consent to my next Diagnostic Laparoscopy with possible Endo excision, possible removal of what is believed to be a Hydrosalpinx in my retro-peritoneal cavity and the possible removal of the streak ovary sitting up by my liver. There will potentially be a urologist on call incase my ureter is comprised. Nah not nervous at all?? Gulp....

Never did I anticipate being the subject of discussion among highly skilled specialists, researching my rare anatomy in their Mortality and Morbidity meeting. It had ended up being quite a complicated situation now with the emphasis put back on me to decide between a permanent IUD device and high risk surgery. I had a really good appointment with my GP about it recently and she agreed we were taking the right  course of action. 

So the countdown is on. I should have more updates in a few weeks time. 

Complex Urogenital Anatomy and Neutropenia

Yup I now have a label. Still not entirely sure what that means but know its definitely not conducive to fertility and going to be costly for me. Outcome of my follow up with my OB/GYN was that she agreed my latest ultrasound didn't tell us anything new and really nothing at all but was a good conversation piece when we were talking about IUD vs Surgery. Now that I have finished treatment there are things we need to decide and one is my path moving forward for Endo, my other random anomalies (ectopic ovary, hydrosalpinx and my kidney remnant and if they create risk, surgery is risky, a Jaydess (smaller form of Mirena) may pose its own problems. My OB/GYN was also curious to see if I was entering early menopause by running fertility bloods...my AMH came back at 42 (was 44 in 2015) so has dropped but is still double what it was when I did IVF?? Everyone keeps telling me that is fine, but I don't actually think that is based on what I have read, for my age that is what we call higher than average... can be a precursor for PCOS or granulosa cell tumors  so lets hope its just really that I'm abnormal haha. She is getting her ducks in a row so she could take my 'complex' case to a multiple disciplinary meeting the following week. Also wanted to wait to see if my Neutropenia has improved, currently i don't have an immune system ... now that is a whole other story!

Neutropenia is a blood condition characterized by low levels of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. For adults, counts of less than 1,500 neutrophils per microliter of blood are considered to be neutropenia. 

Mine are borderline but at this stage we wont worry too much unless they dip below 1,000. Latest results from past 12 months.

Based on the SCL range of 1.9 - 7.5:

24.01.19 = 1.7

11.01.19 = 1.5

30.11.18 = 4.3

07.06.18 = 2.1

24.05.18 = 1.6

20.05.15 = 1.9

07.08.15 = 2.1

So situation is that we don't know what is causing the issue, whether it is chronic or if it will get better on its own so we will be starting 3 months tests at least till it has improves, obviously its not low enough to make me really sick but if if heads that way i might need medication, not much i can do to improve it at this stage. I'm getting some bloods tomorrow to see if we can figure out a cause? the test will be for the below (don't stress about some of those, I'm not! I think they are just routine)...

Anti-nuclear antibodies (ANA)
Rheumatoid factor
B12
Folate
Serum protein electrophoresis (SPE)
HIV
Liver enzymes
Hepatitis B

In the meantime I saw the GP today to talk about my low BP (Blood Pressure/Hypotension). We have decided that the number isn't as much of an issue than the symptoms... so will be keeping eye on my dizziness, fluid intake etc moving forward. Its been ranging from 88-110 systolic so that is now my new normal.

What's considered low blood pressure for you may be normal for someone else. Most doctors consider blood pressure too low only if it causes symptoms. Some experts define low blood pressure as readings lower than 90 mm Hg systolic or 60 mm Hg diastolic. If either number is below that, your pressure is lower than normal. 

We also talked about the reply from my OB/GYN that we happened to get during the appointment, she is still not entirely happy with making a decision at this point until they have researched a bit more. I am the first one they have seen at their practice with a Unicornuate Uterus with Renal Agenesis and an Ectopic Ovary. I was discussed at their Collegial Morbidity Meeting with my previous OB/GYN and even he said that he would like to research more. They are unsure they will be able to safely remove my right ovary, whether it has a risk for being malignant. We may be starting with a Jaydess sooner rather than later and seeing how we go, its the pain that Im worried about, I could do with less of that.

So - there will be a few more updates to come, especially once these bloods come in, who knows where this journey will take me next. 

Finality of things

I've been really bad with my posts this year.  It's time to get back on the wagon! I think my new years resolution has been to blog more before, this time I mean it. 2019 is going to be a lot different in many ways.

Its going to the year we finalising things to move on from our TTC journey. Last year I revisited by new Fertility Specialist/OB to let her know we have decided to end the journey... she almost looked relieved as she had been scratching her head on where to even start to plan a cycle for us. She agrees with me re the risk. It's so refreshing to have someone not pushing me towards a cycle they know has a low % of success and is high risk. We are now making a plan for more surgery potentially to sort my endo, potentially right ovary removal and more diagnostics. She would rather just place a Mirena as an easy fix but im fighting that one. I dont want one and neither does DH. I would rather have a hysterectomy but would only be possible if I had Adenomyosis. My latest Ultrasound doesnt show signs but I have many of the symptoms. Hysterectomies dont stop Endo. A real predicament at this stage.

This year has been especially bad for pregnancy announcements. Especially nearly all those friends my age or bit younger that I wondered if didnt have kids now are the going to? Could they? You never know others infertility struggles. It seems to be a taboo. Noone likes to admit they needed help like it makes it some kind of failure... I dont think I've 'failed'. There are far too many people in the world and far too many children  in care. I have family to care for already. It's what was meant to happen. I will still tell myself that regardless of whether it's true or not. Only way it keeps it bearable.

Another painful Xmas done. A new year. Doc appt in few weeks. Our focus is different this year its really time to move on and start living properly and appreciating each other and the precious time with our families.

Another update to come soon.

Turning 38

This birthday I did not think I would be or expect to be childless, vegan and sober! 

This birthday I expected to feel anger, despair and regret, that is not how I woke up this morning. I woke up with the love of my life handing me the sweetest card with the simplest message inside, to a job that I now having amazing flexibility in having had worked hard full time non-stop for the past 15 years, amazing messages flooding in from family and friends near and far letting me know how much I am thought of and loved and sitting down to a fun night of treats and movies with my best friend, what is there to be upset about?

You get one life. How you choose to live it is up to you and I choose happiness, its got to be happiness. Be kind, be thoughtful, be genuine but most of all be thankful. 

Who know what this new year will bring! A new direction at work, DH and I talking more about adoption and where we can make a difference in the world, supporting my family more cause I can, more amazing opportunities like seeing P!nk live in concert and just tonight another opportunity presented itself that would allow me to have a plan B in the way of social marketing and networking, I like the idea of that incase DH and I want to set up a business which we have talked about lots. 

So another year full of what if's? Is that such a bad thing? I think too much, plan too much, care too much but its all good energy that can be put to good use and to create good in the world.

Its time ... time to stop trying to build a life and just start living it for what it is.

P.S - and BLOG more! i say that every post haha

So, childless not by choice aye?

So this week is Fertility Week, the week where people get to talk about whether they are or they aren't fertile and not sound like a broken record. There is a real stigma attached to infertility that annoys fertile people, once you have talked about it, shouldn't you stop going on about it? They don't go on about the fact that they cant stop having babies... why should you talk non-stop about not being able to have them? The fact is, we 'infertile' live it every day, think about it every day, dream about it every day. Reminded by pregnant bellies, cute facebook announcements, magazine articles, TV shows, movies, books, store sales... the list goes on. You fertile lot have babies cause its no big deal and move on with your life, progress, grow, accomplish and not that you notice it, moan, lots about how hard it is to parent, how you never get a break, you become quite ungrateful at times because no-one understands how hard it is. Imagine how hard it must be for us?

Anyway... so how do you make the decision to give up? make the final call? tell people you aren't rather than can't? Speak about it openly without the disappointment, pity or making people feel awkward. Ultimately the choice has been made for us but there is a still hope, still that chance, especially when we see donors, surrogates, adoptions, happy endings for some, just not for us? 

Is it wrong we are coming to grips with it? sometimes enjoying the fact? booking holidays on a whim, not having to worry about school holidays, spending money on the house, relaxing in the quiet, feeling relieved our children wont have to live through and see the terrors of the world?

Then I hug my nephews, or hold a newborn, or remember I'm not going to be a grandmother, or give my parents grand-kids and the anxiety of giving up, where the money will come from if we try again, the potential losses and my parents sadness, it all creeps back in. Will we, wont we? it seems like a revolving door. So, what if I put it out to the world, can I then take it back?

Decisions need to be made soon, maybe 2018 will be the year that makes us or breaks us. 

Moving forward...one step at a time

Wow no post since March! what have I been doing? what a year it has been. I have missed blogging as it gives me an opportunity to speak about things I don't normally stop to chat to those around me about. To record them to look back on. Its all part of my journey.

These past few months have been really tough. My father still struggles but is doing better, my brother had a life-changing move, My mother-in-law can't sell her house, my sister separated from her husband in a rough domestic situation which has been really hard on her and my nephews, my ex-brother in law is the true meaning of the world arse-hole and needs to do a better job as a father, my great-nieces have had a trying time also with similar situation with their parents. Its been rough to sit back and see a total disregard for a child's mental health for a parents own immature and selfish needs or wants. I'm still a bit bitter and twisted about it really. Is it because I think they should be grateful for the gift of parenthood, oh for sure! That's the hardest part.

We decided to push forward with our renovations before looking at another cycle and they have gone on for way to long and gone totally over budget so our idea of another cycle this year was put on the back-burner. We are hoping for next year but just when it starts to rain it ends up a torrential downpour. Between work, home, my DH's final papers of his degree I think we have enough on our plate, so we are taking it day-by-day.

Then...I met some ladies online... and they really have been my life-line. Its an international community of those who are childless 'not by choice'. I'm not going to go too much into it to protect their privacy but its a place I feel I can truly talk about how i'm feeling, and not be judged for being dark and twisty, they  fully understand and on occasion my positive outlook, which is most of the time, in turn has helped them when having a bad day. The 'mothers to be' group I am a part of is sometimes too hard as there has been a lot of BFPs lately and pics of their new babies. Truly happy for them but still...

So, does that mean im now sitting on the fence? One more ICSI cycle is what my husband and I had promised each other, but it just seems so out of reach now? have I moved on, am I content with our childless status, or have I given up? I can't really figure it out, all I know is that i'm actually fine, apart from being stressed out of my brain about all that's going on around me, I seem to still be doing fine.

We have another month or so to endure of moving out for remainder of our reno's, its a nice wee place to stay, im going to take the opportunity to meditate, read, colour, write/blog more and really do some soul-searching with DH and make some plans together for the year ahead. What good is a life you're not living?

Physiotherapy

Best thing that has happened to me thus far was being referred to my Pelvic Heath physio, I wish my bowel specialist had thought of that sooner! what a weight off my shoulders. After spending most of the appointment listing all my ailments we finally got to the assessment I had been sent to her for and brilliant news! yes I have a short pelvic floor but given my history, that is better than a long one and is much much better than what it appeared on my Functional MRI. No need at this stage for surgery or really even physiotherapy as meds and monitoring of diet should reduce risk of further complications and we even did a Bladder diary to rule out any systemic issues and that also came back really positive news, my bladder issues definitely stem from my bowel issues and if stay healthy I should have minimal issues going forward. She wasn't impressed with the outcome of my MRI as my second appointment with her was after my follow up appointment with surgeon and she still is concerned my nerve pain hasnt been addressed and may be contributing to other abdominal pain her and I have been discussing, she was nice enough to refer me to someone she works with that she believes could benefit me in some way with a plan for my Spondylosisthesis and getting more cardio/movement and reduce my pain and fatigue. Yay, a win!

So ultimately this is where I feel like I should be now, at the point where surgery at this stage is not yet necessary on my bowel, pelvis, uterus or my spine, money well spent on specialists I think and is all good news really!

I had my first appointment with my new physio this week, yes I now have two. Luckily they know each other well and are working together. She did look a little overwhelmed when she saw the size of my file and the notes my Pelvic Health physio sent over in preparation for my appointment.

So, not going to bore you with the entire appointment as I do have the tendency to ramble (ask anyone in my family, esp my DH), long story short the new physio wasnt impressed that the spinal surgeon only wants to see me back again if I decompensate "In medicine, decompensation is the functional deterioration of a previously working structure or system. Decompensation may occur due to fatigue, stress, illness, or old age. When a system is "compensated", it is able to function despite stressors or defects". In other words when i physically and mentally cant cope anymore. That means I have to find the best way to cope even better than I am now and the hopes are I can stay that way for many many years to come. I dont actually want surgery ever, its risky business!

My first physio appointment was trying to get everyone out and noted on what has led me to this point, still we are able to determine what is causing, or has caused my sciatica, physio commented that MRI's dont show nerve damage only nerve compression and even then not always detected so she has slight concern that I still could have compression, irritation or even a torn/damaged nerve somewhere. Potentially I could have damage further up in thoracic or even cervical spine as nerves are continuous from top to toe and the pain im experiencing is from extra strain on a already 'bothered' nerve so where ive been pushing on, maybe I should just take it easy. She gave me stretches to do only on my left side for now to gradually work on it, and work to do on my posture when sitting down for work each day, it has been challenging today but can see the benefits of being more 'aware' already. Just need to work on my posture at home now, as I type im cross-legged and slumped back on the desperately ergonomically lacking couch own, time to get my dream lazy-boy suite I think! Im going back in 2 weeks time to see her to do a bit more work on creating a long term plan for me as I am really in the chronic category when it comes to pain, i never have a pain level of 0... so not necessary for me to be in there every week as we are not going to find a magical fix. After that if Im doing ok and not worse we are looking to book me onto an 8 week program of physio targeting my core strength, then if successful I can start some proper exercise like getting back into Yoga, potentially doing some proper cardio, in the meantime my personal goal is for me to be out walking for at least 30 mins every two days.. does shopping count? haha.

I really feel lucky that I cope well...im part of a few social network groups and see people battling everyday...and that I have a great quality of life despite what is going on, it could be so much worse, never take the ability to 'get up and go' for granted. Truly grateful and hope it stays that way going forward.