When my normal test results weren't in fact normal

Endoscopy #2. 

It was touch and go that week as the whole house fell crook with a coughing virus and I thought surely being off all my pills (was asked to stop all supplements prior so have literally been off them since my breath testing (Vit B Complex, Vit C, Magnesium). I took a few sneaky Vit Cs and hoped for the best. The day came and I was snot and cough free so off I went.

It was later in the day so I decided to bus there. Thought if I was going to be laid up for the afternoon I ought to get some exercise. I masked up and got through town in good time and arrived at the clinic 15 mins early.

They took me fairly promptly and I did my pre-procedure stuff, got changed, toilet stop and waited... what seemed like a while, until I was called in. Nurses were still getting set up and I answered a few questions. They said "you were here not long ago?". Correct! They had found something which looked a bit sinister in my distal esophagus and I was there for another biopsy to see if we could figure it all out.

The nurse had trouble finding a vein in my arm and after sticking the needle into my nerve decided to give up and wait for my specialist to insert a cannula in my hand. They commented on the colour of my hands and again said "your veins are so delicate". Of course they are! ive been food and fluid free for 12 hours... dehydration not helpful. I explained my circulation issue and reassured them my hands were ok, they were just cold which makes them go purple. 

My specialist arrived and asked how I had been? I said doing ok as I had been to dietician for a chat, we had a plan and I was slowly working on getting some weight back on. I advised him that my throat was pretty ok after the last biopsies and that I was looking forward to an update of where we were at. 

After a very painful few minutes he had a cannula in my hand and we were off. Little did I know that later than cannula would be snagged and its removal caused a blown vein which took a good week to sort itself out.

Meds on board and throat spray in I drifted off and remember less about this one... and woke up being taken to recovery. There I felt really slow. I could hear the machine and new my bradycardia was playing up and that my blood pressure was low as even lying down I was dizzy. On my last reading before I mobilised I asked her what it was sitting at and it was about 91/62 which is low but pretty standard for me. I took my time getting dressed and only fell over once, luckily I was close to the ground trying to get on my converse boots.

Once next door and my throat had woken up I was served a vegetarian dairy and gluten free sandwich and to my delight a Kombucha, even my favourite flavour. The nurse came and read my results which was the ulcer had mostly healed, things looked healthier and he took more biopsies of the nodules. He was happy with what he saw, so that in itself was good news for me.

Its been a about 1 week since the procedure and to my surprise my results came in via GP. It seems that my distal esophagus had sustained injury from what appears to be gastro-oesophageal-reflux. I had a sneaky suspicion that was the cause even though my surgeon had ruled it out in the first instance.

So, where to from here? Looks like i'm back to the dietitian to think of a new plan and probably scripted more Elemental Drinks as the list of foods I can consume is growing smaller by the minute. I never thought there would come a time when I would not be allowed chocolate, soda or coffee. 

I see the new Gastroenterologist in 4 weeks time to go over my results from my breath tests and to talk about motility. I think that's definitely going to be an issue relating to my EDS and also now by most recent reflux situation. I've already started to make improvements to my diet (cutting out the stress eating, the chocolate, x1 coffee a day and really trying hard to stick to the Low FODMAP, low Fructose diet now it seems I need to work on the Reflux stuff too. Crazy though as I was hunting high and low but I found a book! The Low Fodmap Acid Reflux diet, so Im kind of feeling like there is light at the end of the tunnel. My E028 (elemental supplementation) seems to be going ok, the problem is I actually prefer the drinks to eating, I was having them for breakfast and lunch but finding i was still hungry after tea so mixing it up starting tomorrow and going back on my low fodmap cereal early morning and supplementing lunch and maybe an after tea, or second one in the afternoon... i'll see where I need it the most. 

Lots of reading, lots of research... and lots of waiting. So the story goes...

 

 

Visiting the dietitian & EDS

Today was my appointment with my new dietitian. I've seen a few over the years, most of which have been helpful, to some degree. She has been the most helpful so far. Of the research on FODMAPs ive found online ive never really understood it as well as I should, until I got my breath testing done.

I dont know whether its part of my OCD but I research the crap out of most things. Its not that im a know-it-all or want to appear as one, its why not be informed? It has helped me in the past to be knowledgeable about anything that is medically challenging myself and my family and now on my quest to learn inside and out my future with EDS, I may be able to help a few others along the way.

So turns out even she agrees that im a bit medically complex by looking at my results. I still have to wait for November to find out from the Gastroenterologist what the actual diagnosis if any and what the plan is, but now im hoping its NOT SIBO or IMO as even thought are apparently treatable, the treatments are hideously expensive (NZD$2,000). On the other hand Fructose Malabsorption is a pretty untreatable condition and would be an ongoing issue.

Today we talked about how my avoidance and restriction is leading to an eating disorder. Finally I can be in a room where I can talk about it. I told her the horror that was the last month of exlusion diet, severe constipation and dangerously low BMI. I have managed to gain 4 or so kgs back but not in the right way, bowls of low FODMAP muesli and a block of plant-based chocolate most nights, while it was enjoyable and worked, has now left me in a bit of a state. We talked about what is and isnt working most of the time. She knows EDS and its GI tract issues well. She already knew before I came in today she was likely to prescribe me sometime to help. Its called E028 (E stands for Elemental). Its a meal replacement drink that contains a lot of amino acids, omegas and all the things my current next-to-nothing diet doesn't provide. The chemical list in the ingredients made me shudder but willing to try anything... it also means if I have a day where i dont want to eat much i know im still being safe. Its not tube feeds so Im feeling super grateful really as im still able to eat...  

Things are just going to be very different from now on... 

Next stop, Gastroscopy 22nd September, watch this space for updates!

Endoscopy cancer scare, SIBO testing and GYN followup

Gosh, what a few months July, August and September have been. 

Everytime I finally sit down to blog I'm either distracted with work, Netflix or just too damn tired as once I take my Amitriptyline at 9.25pm I'm unable to sometimes string a sentence together or think of one to start with.

What have I been up to since I blogged last? 

I visited my Colorectal Surgeon at the Digestive Clinic back in July and he checked me over again, my prolapse etc being no worse than when we met last. We did get onto the subject of digestion. I spoke with him about the pain that I get when eating and it was decided that I would undergo a Endoscopy procedure to check for Helicobacter pylori (H. pylori) infection or any bacterial issues or overgrowths. I was booked in few weeks after my appointment. On the day I opted for the sedative and I'm glad I did as they found 10 nodules (small tumors) and a 1cm ulcer in my distal esophagus. I was quite groggy when she told me shortly after the procedure. Part of his provisional diagnosis was HPV? what the hell. I had never heard of that type of infection growing that far down? I handled recovery well, no bleeding issues and embarked on a 2 week wait for results. What a harrowing 2 weeks it was, thinking I had esophageal cancer! Meanwhile I waited for the booking for Breath testing and just hoped for the best. Results in... they came back as normal? No what the hell! no HPV, no cancer? Not even Helicobacter pylori (H. pylori). The nurse from the clinic had a good chat with me and advised that my surgeon would like me to retake the test to get better and possibly bigger samples and then he's going to take both slides to a meeting with the pathology team. Typical, I'm always the complex and unusual one! next one booked for few weeks time. Once he knows what it is, he will decide if he removes it or monitors it. For all we know, it may have disappeared by now. 

Nurse phoned again, breath testing was booked and I've just this week completed my 4th Hydrogen Breath Test and waiting for a booking with the Motility Gastroenterologist, and the Dietician. 

Breath Test results...

Borderline Positive for H2 and Methane on Lactulose. Highest result of 32 ppm and 76 ppm.

Negative for H2 and Methane for Glucose.

Negative for H2 and Methane for Lactose.

Positive for H2 and Methane for Fructose. Highest result of 60 ppm.

Not sure if this means anything with change for me diet wise but it may revise my diagnosis of IBS-C? I'm still on a strict FODMAPS regime. It might mean a course of Antibiotic treatment for either SIBO (Small Intestinal Bacterial Overgrowth) or IMO (Intestinal Methanogen Overgrowth). I will probably do a whole separate post on that one. Some one on my IBS NZ support group says it means nothing. I would like to stay a little more positive on some type of relief! I am getting a lot of pain and bloating and by restricting I have now dropped as low as 45.5 (BMI 17) while testing. I found a new chocolate from Whittaker's that was plant based and made from Oat Milk, it may not be gluten-free but it helped me put 3 kgs back on! I guess it will be up and down for the next wee while.

What else has been happening? I caught up with my GYN which I think I advise previous post which was on the cards. Main reason for revisiting her at this stage was pain levels and heavy bleeding, unusual cycles. We only resected my Endo and removed my ovary in 2019 so wasn't expecting much to come out of the appointment. She was really surprised to hear of my diagnosis but said the Fibromyalgia made a lot of sense as I 'feel' things differently. Heighten pain levels for periods, endo, bowel movements and even bladder irritation. She ordered another Ultrasound to check on the bulkiness of my uterus and see if Adenomyosis had turned up, this is some thing I will be regularly checked for and will need a hysterectomy for. The ultrasound looked fine apart from adhesions on my left ovary again which wasn't moving. This will be addressed when I have a significant rise in pain levels, until then, there is no treatment. The more surgeries I have, the more adhesions I will get, but will need to keep an eye on any symptoms of deep infiltrating lesions on my ureter. This would cause significant issues and would need dealing with ASAP. During testing she also ordered another AMH level to see if i was peri-menopausal with the removal of one of my ovaries... but alas... I came in at 8, which is the top level of egg stores for my age group. Every AMH test is a dagger really as good egg stores have always been the case for me, but IVF off the table for us. 

So where to now? I'm still on the journey of working on my self-care plan. This was my reason for looking into Chronic Pain services here in Christchurch. I have now finished up with the Brief Pain Management Clinic at Burwood Hospital. Not sure I got as much out of it as I thought I would. The book was an interesting read so Ive definitely been given the information to be successful in managing my own pain, now I just need to get on and do it. I've also completed the Community Leader and Advocacy program via The Ehlers Danlos Society International and engaged with the EDSNZ group and I am now admin on the South Island support network, so looking at doing some extra training in Human Rights in Disability, Disability 101 and also have graduated from a Adult & Tertiary Teaching Certification so looking forward to putting all my research and study to good use to help others with chronic illness in the coming months.

So... it's as always, an ongoing saga. 10 years of blogging this year and I'm still looking for answers! Chuck being a foster Mum, working full time, navigating the world of mental health in children, sensory processing disorders and traumas affect on the brain in there and I'm definitely learning to keep on the bright side of things.

Next update will be after my Dietician appointment, then Endoscopy #2.

Pain Management...Tricyclics and Exercise Plans

Not sure where I left it last, I really must get better at posting more often.

Well it's been and interesting few months to say the least! Covid hit NZ in a bit way again so I have been waiting since earlier this year to see the Pain Management Clinic at our local hospital, after completing their rigorous screening process of 6 hour online seminar and questionnaires. I had plenty to keep me busy with numerous things on the go, my teaching course, a advocacy course with EDS Int'l, therapy and assessment for our nieces, doing a month challenge for EDS awareness month, working full time and trying to figure out my long term plan with my newly diagnosed conditions.

So where am I at? I have completed my first session with the Pain Management Clinic for their Brief Pain Management course for Chronic Pain after reading their manual 'Manage Your Pain' by Dr Michael Nicholas from Australia. The Physio and Pain Psychologists we are working with are both really nice and the group im in obviously have their own stories to tell. I think most of it I already know, but just having the time to look after myself and get a bit of relaxed exercise has been really good for me, especially as I don't get out of the house much anymore. I have been back to the Rheumatologist, this time was kind of a second opinion really. He is happy with my progress and thinks I should bite-the-bullet and up my Amitriptyline to 20mg but wanted to rule out heart arrhythmias first, I have had some really low Brady-cardiac moments on the 10mg, including when I had Covid back in March, 47bpms which is really low for me, normally I only dip that low if Im sleeping. My GP did a EKG at their centre and so far all looks good so ive been on 20mgs for a few months now, apart from zonking out really early now (as soon as i sit down) things seem to be going ok. Im able to function the next day ok... but Im very grumpy and groggy in the mornings which makes school lunches, school runs and early appointments really interesting!

When i visited the GP for the EKG we decided that we were going to revisit my two major specialists (Bowel and GYN) to see if my long term plans are going to be affected by the EDS diagnosis. The first visit this past week was back to my colorectal surgeon as I have a prolapse, pelvic floor issues and slow transit/spastic colon issues (IBS). Due to my strict diet and daily movacole my physical exam went really well no further prolapse and my hemorrhoids are of very little significance and dont need surgery. That could not have been better news! We do however have a sneaky suspicion that there might be some issues around stomach and small bowel due to my diet needing to be so strict so before I revisit the dietitian he has ordered a Gastroscopy and a Hydrogen Breath test. If both of those tests come back normal, he will revisit the large colon to look for issues there. I still have pain, bloating and gas when ever I eat, not to mention reflux if I have anything outside of my daily, which is limited to only breakfast (fodmap muesli) and rice and veges for tea. The only other thing consumed is liquid, so im fasting for 12 hours a day, having a meal, fasting for another 12 hours. My weight is down to 49.5 kgs which is the lowest in a while and im definitely back in the underweight category. Not a bad thing as I recently went through a stress eating stage where I became quite unwell physically.

Next is the Gynecologist in another months time to talk Endometriosis, Hysterectomy and what that means with Ehlers Danlos.

I have also embarked on a personal journey to gain control of my chronic fatigue and Fibromyalgia (Central Sensitisation). From what I have read my exercise plan, diet and relaxation techniques (which are currently non-existant) should see a huge reduction in flares and aid me in getting the right mix of exercise and rest. Im learning a lot in the pain management side of things and to be completely honest, this is the first year of my life in quite some time Ive felt a reduction in my pain. It helps me to have faith in the process, as I only have me to help moving forward and its going to be a long and slow decline, so I need to be grateful and use the motility I have now while ive still got it. 

Next few updates im sure will be lengthy ones, and im sure this one will get edited a million times because I have forgotten to add something... brain fog is no joke and Im surprised I managed to communicate at all sometimes.  

For now I must go as my therapy app just went off, its time to take my Amitriptyline....

Hypermobile Ehlers-Danlos Syndrome with a side of Fibromyalgia

New year, new diagnosis and still coming to terms with what that means for me.

Who would of thought that a thumb surgery would result in my life being turned upside down in my 40's.

So lets recap...

This past decade of diagnoses for me (during 6 clomid cycles and 3 rounds of IVF) between the ages of 30 and 42 are as follows: Hypothyrodism, Renal agenesis, Pelvic congestion syndrome, Bicornuate bicollis OR Unicornuate Uterus (they havent decided yet), Spondylolisthesis, Scoliosis, Acrocyanosis, Bradycardia, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, Irritable Bowel Syndrome, Fibromyalgia and Hypermobile Ehlers-Danlos Syndrome. 

To think I was labelled a hypochondriac. Growing up I don't ever remember much about the effects the above conditions had on me as I was too busy being a kid. I do remember my night terrors, my panic attacks and nausea at bedtime, my breathlessness, my chronic growning pains, my constant constipation. Anxiety, headaches, visual problems, brainfog, fatigue... I thought I was normal enough? HA! little did I know I was far from normal.

10 years into my journey of discovery and I feel like every now and then we do a little rewind. What a decade its been. There has been some really great and positive things that have happened. There has been tragedy. I feel like that is life and for every dark cloud I find a silver lining. 

My journey to EDS has probably been one of those silver linings. With diagnosis comes understanding, not only of my own challenges but those of others. It has reinforced my goal of becoming an advocate and I've been welcomed into the EDS community by a dazzle of amazing zebras that are all unique in their own way and have so much compassion for others. After successfully completing a qualification for Adult & Teritary Teaching as well as fostering two amazing young ladies and working full time I'm hoping to join the dazzle officially in some capacity to bring awareness and support to where its needed the most. I will be completing a Community Leader and Advocacy course with the Ehlers-Danlos Society starting in few weeks and look forward to where that will lead.

Meanwhile I was contacted about my Rheumatology follow-up a few weeks back and found out the Rheumatologist who diagnosed me has retired and I will be seeing someone new. I have been without support for a while after stopping my specialist physio appointments as could no longer afford them. I actually think I met him on my Dads AI journey and I actually look forward to meeting him. Will be interesting to see his view on my diagnosis and treatment plan. I'm refusing to up my Amitriptyline as its already having an affect on my health. It's working tho! my REM and Deep sleep have improved. I'm still waiting up sore but able to still function and drive which is what I wanted. Next will be looking into my BP, Heart and Immune side of things. I've managed to put on and maintain 4 kgs with the meds and trying to eat more in the evenings. All bloods NORMAL for a change, so have never been healthier. That has come at a cost however as my intolerance for food in general has not been easy. Eating is not something I enjoy and hope that will be something i can get a solid plan in place for. Finally I have the energy to exercise though, being able to do 5 kms on my exercise bike is a crucial step in recovery and management, as is my strenthening exercises to sort out my Proprioception issues. First things first tho, sorting my chronic pain and stress will be a key element of that. I'm on the list for a Brief Pain Management program which is spoken very highly of. When staffing issues at the hospital are over I should be starting that too. Everything is slowly lining up.

Oh, and we all got Covid. Will be interesting to see if any Long Covid signs pop up during the next stage of this journey.

Onwards and upwards... to be continued.

An update of epic proportions!

The gap was tremendous.. It feels strange not to have blogged in over a year.

So much to report, I don't know where to start...

The past 24 months has been a roller-coaster ride to say the least! I think we left off after my last specialist appointment and probably before my car accident. Yes, I wrecked my car Xmas of 2019 and suffered a bad whiplash and concussion and had a rough few months recovering from that while dealing with work and family. Funningly enough i wrecked it on a hot summer day, racing in 5pm traffic taking my father his weekly groceries while on the phone to him (hands free of course). Caring for my family is all I have known this decade and its what i love doing... but sometimes it was at the expense of myself... I think that day was one of them. Mum came to my rescue and took me for a neck x-ray. Nothing broken and off to the physio I went. She worked on me for a number of weeks and ive slowly come right.

Come February 2020 during the stress of working Xmas and shopping for a new car we were faced with a family related issue during that time and my stress levels skyrocketed. I was coming up to my 40th birthday with no real answers to my health concerns, getting used to our life of childlessness and caring for a very ill father who made it through sepsis, toxic shock and C-diff and was trying to get his life back with assistance from his children. It was a Monday night and we got a call from a friend of my nieces who asked us to come pick up my grand-nieces from their home and the police would meet us there, just for the night so my niece could seek emergency mental health support. Little did we know that night and the weeks that followed, our world was about to turn upside down. The girls who were 5 and 7 at the time, have now been with us nearly 2 years (24 months) and the story of our journey is a massive one and might be a blog of its own one day. DH and I are still in it together even though it has been incredibly hard and we sometimes battle through everyday.

Come March 2020 and my 40th birthday, I had an amazing month with my family having a reunion in Akaroa on the same weekend that I had a roller disco and was able to provide the girls with a fun time with their friends and mine, then have the opportunity to meet all my family in one spot for the first time in forever, including meeting my sweet 2nd cousins from Bali for the first time ever.

The following Monday came Covid lockdown #1. I was now a full time worker with my husband going into the battle zone (CDHB) most days, a home school teacher, grocery delivery person and trying to make sense of not being able to see my family for months on end. I think they were not only the hardest 7 weeks of our lives, its now seems so surreal... watching it unfold around the world. It was crazy.

During that time before winter set in we were getting outdoors a lot and really feel like pain was one of the things i was worrying about the least... that is until my tendonitis in my thumb started to get worse. You know i've always battled with De Quervain's tenosynovitis, carpal tunnel and other nerve issues, well this ended up being Trigger Thumb and yes another referral to a specialist. This time a hand surgeon. While waiting I attended a few appointments with a Hand Therapist and we started to talk about my tendonitis and chronic pain, taping, splinting all the things and he agreed the chronic side of my day-to-day pain was just something I would have to learn to live with and medicate and plan better for times I really need it, like gardening, lifting and cleaning.

I finally got to see the Hand & Wrist Surgeon in September 2021. Her consultation was very thorough. She was very quick to say "you have a very complex family history.. here I was thinking you would be a very quick 30 min Trigger Thumb, but it doesnt even trigger the right way, everything about you is complex". Yes, not a surprise to me, not even that the bone in my right thumb is larger than the other. Just add it to the list of right-sided anomalies. I was what she said next that threw me for a six... "has anyone every assessed you for a connective tissue disorder". I just about laughed. I told her that I was under many specialists that have never found links to my long list of ailments. She gave me a good look over and said "your appearance is very alike Marfans Syndrome and EDS (Ehlers-Danlos Syndrome), clearly you are hypermobile so you should look into that. I bet you can press your thumb to your wrist, bend your pinky 90 degrees and touch the floor without bending your knees? Ummm yes, among a few other weird and wonderful tricks I had performed as a child. It turns out my feet and hands are very hypermobile, hence my early-onset basal thumb arthritis which I have been able to sort splints out for. She prompted me to see a Rheumatologist for tissue biopsy and to see my fathers one if possible, if not I had a private option also. I was booked in for surgery 2 weeks after that, in the private hospital just incase due to my low blood pressure and complex nature. 

I went home and google Marfans and EDS, these are both terms I had looked into before, having known a few people with the conditions, I went straight to the source to ask advice. My friend whos daughters both had EDS, straight away said "dont take this the wrong way but you do have the look about you". Then my google search began, which I knew I shouldnt do. DH and I printed out the criteria for a condition called Hypermobile Ehlers-Danlos Syndrome also known as hEDS (this is one of 14 subtypes, and the most common of the rare conditions and the only one without a gene to type)... before my husband could get back from the printer, he had read it, looked at me and said "omg this is you." I read through the criteria and it was then my stomach dropped... all these years, all these specialists... is this even real? I promply joined the FB group my friend was in and started asking questions. First one, where next for diagnosis? They suggested a lady who specialises here in Christchurch in these conditions and had recently opened her own Specialist Clinic. It turns out not many specialise in NZ due to it being a rare syndrome and our low population numbers. 

My call to teh specialist physio was the best decision I ever made. I told her my story and its one she had obviously heard a thousand times before. Come on in as soon as we hit Level 2 (we were staging out of our second lockdown at this point)... and I did. Little did I know that it was just the beginning of a journey that would change everything.

It turns out I fit the criteria for hEDS like a glove. I got 5/9 on the Beighton Score and 8/12 on the Brighton Criteria.  I dont have hypermobile knees or elbows but I do have hypermobility in my hands, feet, shoulders, neck and hips. She could only however give me a provisional diagnosis. I still had to meet with a Rheumatologist to confirm the diagnosis by ruling out that my symptoms and list of ailments werent being caused by an auto immune disorder. We tried public with a pretty sound referral letter from my GP, my specialist physio and my hand surgeon. They declined me instantly. I have since learnt from the EDS Society and through a lot of research that some countries do not have specialist clinics to diagnose and treat, so finding a medical professional here in NZ that believes in it, let alone specialise, is very hard. I went to a private Rheumatologist as suggested by her and managed to get an appt 2 weeks after I called.

The appointment with the Rheumatologist was very indepth, going through my family history once again. My list of 'what is wrong with me' I think surprised her, the journey I had been on thus far and that there was 3 rounds of IVF in there too! We finally got to the physical exam part after a bit of standing, bending measuring... there was not much discussion and just answered the 'is this tender' questions with, well yes, everywhere hurts all the time! 

We sat back down and went to summarise the discussion and exam we just completed. She gave me a diagnosis of Fibromyalgia! 

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.

OMG what? It was a bit surreal. I had been researching Fibromyalgia for many years as myself and my father believed it could co-exist with other disorders or diseases and we were right. Once I recovered from the initial shock, I asked what does that mean for the confirmation of the EDS diagnosis...? She said "well i agree with Anita, so today you get two for the price of one!". There was a tense moment when I asked how to explain the lack of familial links for these disorders and syndromes and she asked my why I wanted to know? I didnt have children so what did it matter? It turns out a paper is being written at the moment as I may end up being able to test for the hEDS defunct collagen gene at some point, but for now its possible I am what they call a spontaneous gene mutation. Typical!

I left the office for DH's office which happened to be next door to tell him how it went. Shocked still I tried to explain to his workmates i had just been diagnosed with a connective tissue and a central nervous system disorder and finally gone full circle to be prescribed Amitriptyline (a tricyclic). That is the one I had been I had been avoiding for some time. 

So, what has been happening since? Well my specialist physio and I have talked more as there are co-morbitities that come with both conditions, I'm yet to find out if I do infact have two of the main ones, MCAS (Mast Cell Activation Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). I do fit the criteria for some of these, or dysautonomia in general, but definitely not on the severe side, now I can give my symptoms a name! I had heard of MCAS before as my gynecologist was the first to suggest it. I have since found that Tourettes tics and muscle spasm's are also part of the autonomic system dysfunction. Who knew? all this time? 

Next was a visit to my GP to talk about the medicine before taking it. I asked why it was prescribed and not others, why a natural approach wouldnt work and we ended up coming to the same conclusion as the Rheumatologist and I had, im so fatigued and battling a sleep disorder caused by my chronic pain that I dont have the energy to exercise to meet my increased cardio requirements to get me fitter and doing better. So reluctantly I started the meds on 1.12.21. Its time to look at the over all picture, connect the dots and plan for the future.

What needs to be addressed from a care plan point of view will be my next blog post, as lots has been happening in the time i have been away.

Im parenting two traumatised children, working full time, studying and my father died this year in the most terrible way and I have a sick brother. Some how in all of that I remain calm, mostly collected and still manage to get things where they need to be, no matter the cost. Not only do I need to treat the body, but check on my mind... so im awaiting a reply for a psychological assessment as part of my future care plan. Hunted high and low and for a someone who specialises in Chronic Fatigue / Pain syndromes... so the journey is really only just beginning!

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!