Post-op recovery and ongoing follow-ups

So its been a while ... I'm shocking when it comes to sitting down and starting a post ... I think about what I need to post then don't get around to it, now I have so much to cover I'm going to be here a while ...

Last time I posted I had just come home from hospital after my surgery, it was a sad week that week, so much more pain than my last lap surgery, it was mostly due to the trauma my rips experienced, gas trying to escape still, the constipation I was suffering from the anesthesia, swelling and codeine, so took a bit to get back into swing of work, driving and all things housework... you know me, I dont sit down and have trouble doing what Im told.

Apart from contact dermatitis reaction from the iodine solution used during my surgery and one of my op-sites that has overhealed, I think all-in-all the healing process has gone significantly better than I expected. Im thankful for that.

So ... follow ups, where do we start? I revisited my GYN at the 6 week mark to talk through the surgery, the photos and the whats next. Was a pretty short appointment as I had healed fine, no infections, no worries. We talked about the surgery and what she thought, what she saw. She confirmed that they didn't find the Hydrosalpinx which is really unfortunate, she confirmed that she was unable to confirm the mass but was happy with the ovary removal and happy the other ovary is now in right place. Got to be happy with that right? We talked about the pics she took of the inside of my bladder and confirmed my referral had been put through to see her Urology colleague, same building different centre. It turns out referral letter never received once i called to chase up appointment, we got that sorted and a referral confirmation received with a date, I was able to get into see her before the silly season started.

The Urologist had be do a urine sample and a bladder diary prior to our appointment, she greeted me with a medical student and made sure he was ok to attend, I said absolutely as my case is always a complex one I like the students to put that in their experience folder, will help them think outside the box haha. He was just a young guy, looked more nervous that I did! 

Results were in, I had a UTI. Geez what timing! We think I might have developed that post surgery as I definitely was experiencing irritation and a little pain but put that down to having the cystoscopy during surgery. So my tests were delayed (she was planning a follow-up cystoscopy). 10 days antibiotics and off home to rest. 

She decided with all that aside she was quite interested still to know what the mass in my lower right pelvis was knowing it did not have a connected ureter, so sent me for a CT with contrast during that time too, she would have one more follow up with me where she wanted me to do a Flow Test (measure your volume when voiding and then ultrasound to see if voided properly)... so I booked in for the CT and that appointment thereafter for the test.

Well, the CT was not helpful at all, and I had an allergic reaction the iodine they put in me! It pretty much just sent us in circles again, I still get a copy of ALL my reports.

Once I was able to re-attend the appointment for my cystoscopy we got to see the inside of my bladder! I took DH with me this time ... just in case it was bad news. I could visibly see the roping my GYN was talking about after surgery, not as bad as I thought. My Urologist confirmed 'only x1 ureter' and showed be only the one opening for my left one. She decided that for my 'complex urogenital anatomy' what she was seeing was 'normal for me' and that she has no concerns at this stage that I have cancer, IC or any major bladder conditions. My bladder does overfill tho so I just need to be very conscious and she suggested to set an alarm every 4 hours as a reminder to go. Re the CT, we both just stared at each other as if to say WTF. At the bottom of the report it said to get an MRI hahaha. She sent me for a Hi-Res MRI, we were determined to have all the answers.

The Pelvic MRI that I went for was lengthy, they obviously had a lot on the list to look at. I was given a Muscle Relaxant injection about 15 mins in, which is good cause normally my bowels cause issues. Then they pulled me out at the 45 min mark to inject contrast after consulting their Radiologist, this told me they either found something and weren't sure what It was perhaps?

The results from the MRI were in quite quickly and I had a good read through before attending my Urology follow-up. Oops should of mentioned I had my right ovary removed few moths before... wow, there was some new information this time, there are a few new things on list now, possible rudimentary horn, fibrous tissue in uterine wall and biggest of all being that MASS that has had us stumped for past many years is actually a tangled mess of varicose veins in my pelvis!! The term Pelvic Congestion Syndrome has been used but yet to have this confirmed, if that is indeed what the case is, the list of symptoms matches most of my current ailments, back pain, irritation of bladder and bowels, edema in the legs, increased risk of DVT, varicose veins in the legs etc... there is quite the list. My Urologist had met with my GYN re these results and also her Radiologist and decided that they would probably not look at treating it ... hmmm not sure I agree but will leave that to the experts to decide. 

I contacted my GYN for comment on the results and she wants to see me in February, so will have another update then, in a week for so Im seeing my GP so will be interesting to see what she makes of all of this as she has given up a little, with all these specialists I now see she is reluctant to comment.

So there you have it, closure is what I was looking for - before my 40th birthday - now we will be cutting it fine, this may open a whole other chapter? we will find out soon... fingers crossed for no more surgery!

All things unexpected

You wouldnt believe me...even if I told you it was true.

The month leading up to surgery has just been CHAOS, utter chaos. Normally we have little stress pockets here and there, but just seems this month it was all on. Work projects, family commitments in all directions, trying to do it all, not that I mind as I love being there for those closest to me, but it was a juggle, a struggle and I was sure I could handle it. Which I did, in my normal stride, until 5 days from surgery when I got sick, just a head cold but all the same, it coincided with my father developing pneumonia and just about ended up in ICU again. That was the straw that broke the camels back I think. Again, I was fine, I could handle it, but my body said "enough is enough". It was time to ask work for a little bit of leave to mend myself pre-surgery. The anesthesiologist was ready to pull the plug if needed. Not what I had planned at all.

Sunday night pre-surgery was a lot calmer than last time I think as I felt ready, bit nervous still about my head cold, but ready.  My surgery was a Monday morning with a reasonable pre-admission time of 8.30am. IU chose a morning surgery as we were not sure of what outcome by surgery would have this time and thought recovering in hospital would be the right call, oh and it was! DH and I arrived early as they had wanted to see me a little earlier if they needed to perform a health check and just so happened that surgeries were on time that morning and I was called upstairs to see the pre-admission nurse.

My temperature was fine, I was so relieved as last time I had surgery I remember it was slightly elevated (both surgeries in midst of winter) so that meant we were full steam ahead. they took my height, weight and talked through all the paperwork. The anesthesiologist came by to check in and talk about all his important stuff then it was tim to get my gown, robe, stockings etc on. We were lead down to the 'waiting room' which you each get your own individual one, and given your 'relaxing' dose of x3 paracetemol. Meanwhile i had to do a pregnancy test as it is mandatory for women, results were negative, DH and I had a chuckle at that, wondered what we would do if it miraculously came back as positive! haha.

My Surgeon OB/GYN popped in to check on me prior and seemed pumped. That made me happy, we had talked about this moment for a long time! only question i had for her was "you reckon you can do all of that in 1 hour!" maybe that was the meds talking. IT was funny. She left us to wait it out until it was my turn.

I was called. This was it. The familiar walk down the hall to the operating theatre. Such a serene space with the best mural on the wall, lots of smiling staff prepping in there (haha wonder if they knew what my file looked like). Climbed on the table and went through all the procedures of anesthesia with the team, totally calm, I actually like the part of drifting off as weird as it sounds... I was not afraid.

So my operation went good and FAST! I woke up in recovery very out of it this time as think they had given me a good dose of pain meds before I woke up. My pain scale was still at a 6 though so was given a good dose of Fentanyl and IV Tramadol. Wow. wasnt in pain anymore but man, was I out of it. They gave me some water, IV fluids and checked my wounds, i had bleed quite a bit so they had to change my gown and sheets but gave me a chance to see my tummy. Very bloated and 5 entry sights! I knew then at that point that she had got it. They confirmed for me in recovery that they were able to remove my right ovary. After all these years and talking about it, it had finally happened!

I was wheeled up to my room before DH was called this time, I think because last time i was quite emotional and asked for him repeatedly. This time I seemed to cope fine but once im my room, i wanted him there so asked them to ring him. I didnt want to be wasted as in my room alone. It was a beautiful day outside so when i could open my eyes i could see blue sky and treetops. that was nice. DH arrived and was able to hold my hand while we did obs and got water into me and got me comfortable. Thank goodness for electric beds as MAN I was uncomfortable. i could not sit up though, or sleep, or eat, they ended up giving me anti-nausea via my cannular as that tramadol knocked me all over the place. All he could do is hold my hand while I rode that woozy rollercoaster, patient man that he is. They topped me up with codeine (instead of Tramadol or Ibuprofen) mid afternoon as i was ready to get up for my first pee, I had not been catheterised this time as very short surgery, thankful for that too! With help from the best nurses Ive ever had, I was up to the toilet, eating and drinking by mid afternoon and ready to sit up for some dinner by 6pm.

My surgeon popped up to see me not long after I had been in my room as she couldnt wait to tell me what she got up to while i was asleep and show me the photos! 

Laparoscopic removal or right ectopic streak ovary and tube 
(salpingo-oophorectomy) + adhesiolysis of left ovary and relocation

I was still completely out of it looking at the photos but could not believe what she was saying, DH, the nurses none of us could believe all that time my right ovary and fallopian tube were 'together'. A deformed structure that reached all the way from the base of my liver, down to by pelvic brim (hip bone) then through to underneath my uterus. All that time... there will be photos posted at some stage soon. We are awaiting results from pathology as its currently being dissected, im sure they are finding it very interesting, was a first for my clinic, not sure if a first in my hometown, hope it helps with research.

The next surprise was that scar tissue from my previous endometriosis excision had somehow adhered my left ovary to my abdominal wall, no wonder i was starting to get pain again, not sure why that wasn't picked up on ultrasound prior to surgery, but thankful she discovered that.

My endometriosis in all of this is infact pretty stable! the saving grace there was there was very little on my ureter but loads scar tissue, so she decided to leave it alone as the complications that could of happened with my only ureter were not worth the risk at this stage. It is clearly very slow moving so now I just need to meet with her at 6 week followup and decide on having the Jaydess in place, or waiting to see how long I can remain pain stable with it.

That was not the last surprise tho, on asking about my cystoscopy also performed during my surgery so confirmed there was no 2nd ureter which means the mass in my pelvis isn't piped through to my bladder, she did however discover a very unusual lining of my bladder that mimicked 'fibrous plasterboard' was the only was she could describe it. I am now being referred to a Urologist, as its about time we got my bladder and kidneys looked into properly and the possibility of that ovoid mass being a pelvic kidney (non functioning).

So recovery in hospital was to be expected overnight, i actually slept 8 hours in 2 hour lots just on paracetemol. They gave me some more codeine and morphine in the morning to get me up and through the shower and it was time to get packed up to go home. Silly as it sounds tho i made my husband take me via the mall on the way home for supplies and then push me into a homewares shop to buy new pillows (I blame the drugs but i love the pillows!). Home to try and get settled in, more meds on board and figure things out.

I was nothing like i had planned! Moving was hard, peeing was hard, eating was hard, breathing was hard. The first nights sleep was hard, especially seem we were both nervous as I had started bleeding a little. I did not expect to wake up unable to breathe either so phoned into the nurse at clinic who confirmed the bleeding was probably my next cycle that was brought on (with vengeance) which was right, but ended up down at the GP office that afternoon after struggling to clear my airways, she confirmed I had a sinus infection but my lungs were clear... to just watch my temperature and do inhalations and rinses and I would eventually come right. The pain with breathing ended up being severely bruised ribcage which is improving, and distended bowels pushing against my diaphragm until the 'gas' situation sorted itself out, but it was worth getting checked out. needless to say im still on 4 hourly Paracetemol and 6 hourly codeine until it all resolves to get me through the worst of it. Not ideal as the codeine is no good for my chronic IBS but beats the tramadol alternative!

So recovery is going well. Today I managed a day at home on my own which is good as DH already had to book an extra day due to my 'state'. Today I washed my own hair and got dressed on my own. Today is was worth it and im grateful. Today I'm thankful for my DH, for without him I would not have made it through. <3

The road ahead is unknown, im sure there will be more updates soon, but right now I marvel at the human body, modern medicine and the minds ability to just push on through even when you think you are at the hardest point, almost like it knows best.

The unknown

Today was surgery consent day and marks the countdown to my second Laparoscopy surgery. Will be 5 years to the day since I prepared for my last one. Spooky. This one will be different tho as we will possibly be saying goodbye to parts of me that make me that little bit unique, parts that zigged instead of zagged, parts of me that to my knowledge haven't done anything to hurt me, but now it's time. Time while I'm healthy, time now we've closed the IVF chapter. I don't know how I feel right now, little bit excited for another opinion, little bit scared because DH is, fearful of the unknown outcomes? My GP is confident we are making the right call and I just need to trust in that.

My full surgery is a bit of a mouthful... Diagnostic Laparoscopy with excision of Endometriosis with possible removal of Right Ectopic Ovary, with possible removal of Right Hydrosalpinx, and a Cystoscopy.

Long and the short of it is until my OB/GYN gets in there for a look we wont know what's going to stay and what's going. I have opted out of having a Jaydess placed as think I will have enough of a recovery without it to be honest and once we know what my Endo is up to we can make informed decisions from there.

I look forward to finding out the results, especially if she can access and confirm the adnexal mass on my right side as that is what is troubling me the most to be honest. Nobody likes a solid ovoid mass living inside them not knowing its origin or name?

Time will only tell. I just need to keep healthy and focused for another 35 days!

More updates to come, prior approval received. Paperwork underway... it's happening!

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