I can’t believe it’s been a year since the major surgery that removed the endometriosis and my uterus. So where is my health at now? Here’s my one year health update.
Spoiler alert: This operation has helped me to reconnect with my body, reduced the load on my nervous system and improved the fibromyalgia. I share all about the reason for the operation, what it was like and the one year health update below.
This is a long and very personal update but I really feel like the lessons I learnt will help you too. Grab a cuppa and join me.
Pre Operation
I had heavy, painful periods for a long time. My doctors could only say that people with fibromyalgia tend to get painful periods. Essentially it was chalked up to “fibromyalgia” as all else has tended to be for me.
When the periods were getting worse and stopping me from functioning, it took A LOT of back and forth with my doctor just to receive a referral to a gynecologist. Our system here is weird. They made me try birth control pills despite a history of me reacting badly to them. The second one they put me on resulted in an alert being put on my account, officially declared allergic to birth control pills. They tried to talk me into getting a Mirena, despite a doctor agreeing years ago that it wouldn’t suit me, there’s no way my body would accept a foreign body sitting up there.
Finally my doctor advised paying to see a private endometriosis specialist to get their advice, hoping that would speed up the gynecologist referral. It didn’t. So I asked if that specialist would do the operation out of pocket for me. She would not.
After a couple of months I went to see another endometriosis specialist and paid out of pocket again. He’s the one who did my surgery. All through this time I was barely surviving. Each month was worse and worse. More of the month was taken over by period pain. The periods themselves were brutal.
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The operation
I was very lucky because by the time I had surgery scheduled, my body was over it. I looked like a walking zombie, I’d lost too much weight and each period was traumatic. If I’d waited on the public system here, I’d likely still be waiting and wouldn’t be confident of the outcome.
In our first meeting the specialist validated my 20 plus year struggle. Since the beginning of my menstruation career, something hadn’t been right. And it had only gotten worse. He told me that if ibuprofen doesn’t allow you to carry on with your day, then the pain is not “normal”. Living with constant low iron levels, falling into and out of anemia and losing clothing and sheets to blood loss is also not normal. My biggest learning for you – keep asking, keep fighting, if you feel it’s not right.
The initial months
As I said in initial updates, the operation and immediate recovery was hard but not unexpected. My incisions healed well. It was my energy that took the biggest hit.
The first weeks I was weak. But slowly my strength came back. It was such a relief to no longer have to worry and plan for my periods. But managing four small children at this time was very, very difficult. I struggled.
There was a minor issue with my bladder when I was still in the hospital. I went into urinary retention at first and needed the catheter an additional day and night. This seemed to sort itself out. I was curious to see how much of my bladder issues were due to the endometriosis and how much would resolve. For the first few months my bladder was a bit mad. But this eventually settled down. Now, unless I consume something that upsets it (fake sweeteners or MSG) then my bladder is fairly calm compared to any other point in my life. I still go to the bathroom more regularly than most. But it’s much less. And the feelings of urgency only occur during a flare.
There was one flare so bad that I had to go to the doctor. She gave me a specific muscle relaxant for the bladder. I hadn’t realised how much pain I was in until that medication soothed it. Unfortunately the side effects were so bad that I will only take it now in an urgent flare. It caused headaches, very dry mouth/thirst and a general feeling of being unwell.
Starting chiropractic
In October, when I began seeing a chiropractor, I was still very fragile. But I was forced to try and figure out what was happening with my lower back. I was in high levels of pain that even strong anti-inflammatories couldn’t control. I couldn’t sit or stand without a lot of pain. Our overburdened public system again led me to alternative measures.
The chiropractor found that my sacroiliac joints were out. My nervous system was in quite a state. She used the gentlest methods she had and had to go slowly with my treatments. Spoiler alert: it’s going quite well. I’m posting an update soon.
- Adapting With Long-Term Chronic Pain
- What is the Self-Care Model for Fibromyalgia?
- How I’m Following the Nutrivore Approach with Fibromyalgia and ME/CFS
- How to Treat Patients with Fibromyalgia: For Medical Professionals From a Patient
- Fibromyalgia Is Made Worse By Undertreatment and Delayed Diagnosis
My heart rate
From the time I returned home from the hospital, I had been having trouble regulating my heart rate.
One day I had the clothes rack set up in the lounge, the laundry basket on a table and I was slowly putting clothes on it. I felt terrible. So I checked my heart rate. It was 150. I immediately reclined in my chair, but it took a while for it to return to normal.
I learnt to manage it, avoid crouching down and lifting up. Moving slowly. Getting up carefully. Utilising my breath. But still it would go all over the place.
That summer was, unfortunately for me, the hottest we’ve had on record. Which added to the stress on my heart rate issues. In the hottest part of summer, even inside with the air conditioning on, there were days where I couldn’t’ function. One day I couldn’t’ get off the bed.
When I went to my doctor about it, she did the in office test for POTS (postural orthostatic tachycardia syndrome), said it wasn’t that and proceeded to ask if I had any other anxiety than health anxiety. I wasn’t in the right space, I was so shocked, so I didn’t say: No, I don’t have health anxiety. I have real and genuine health issues for which I have been undertreated. So I haven’t been back to her about it.
My heart rate had calmed down in March and April 2024 if I was careful. But my Fitbit still thought I was doing 1-2 hours per day of intense exercise. And then I got some kind of virus and that flared the heart rate issues again for a good two weeks.
Health Update: Now
I am so grateful that I’ve had my surgery and no longer have to face those traumatizing periods. The three tiny incisions are but small scars, proof of the hard won battle I’ve been through.
There is no doubt that I’m doing better overall without that stressor on my nervous system. But the fatigue and the heart rate issues are really holding me back. When the heart rate goes high, it makes me feel totally wiped out. I don’t think these are new. They were simply things occurring that I couldn’t differentiate amongst the bigger problems.
My chiropractor believes that what I’m experiencing is my dysregulated nervous system. And that everything I’ve done so far, operation included, has reduced the load. So I’m hoping that by staying the course with my holistic management plans, it will all reduce.
My holistic management plans are
- LDN
- Yoga Nidra guided meditation
- Breathwork
- Gentle movement
- Chiropractic treatment
- Better sleep, quetiapine
- Working on good brain health – hydration, good food etc.
More specifically having this operation has…
Helped me to reconnect with my body – it was so hard being friends with a body that attacked me routinely but increasingly without warning. Each month was worse than the last for the last 18 months or so. And that was hard. I was able to tease out more of the strands, untangling what was previous the “giant ball of fibro”. It was actually fibromyalgia plus endometriosis plus interstitial cystitis plus ME/CFS plus hypermobility/unstable pelvis. There’s definitely something happening with my bowel too, but we haven’t got there yet. Having teased out the strands it’s much easier to be targeted and catch those symptoms. My quality of life is much higher now.
Calmed my nervous system – without a doubt my nervous system is calmer without that pressure on it. It was always something. Ovulation, pre-period pain, period pain, post-period pain.
Helped the fibromyalgia – it was a perpetuating factor. Without removing the endometriosis/heavy, painful periods, I was never getting the fibromyalgia in hand.
Having teased out the strands it’s much easier to be targeted and catch those symptoms. My quality of life is much higher now.
The thing I need you to know
Not everything is fibromyalgia. If something is not right, seek second and third and fourth opinions. I shouldn’t have been left so long waiting for diagnosis or treatment. And you shouldn’t either. I know it’s easier said than done. But please don’t let them attribute everything to fibromyalgia. We can’t get the fibromyalgia under control until we conquer the perpetuating factors. And the longer these big stressors sit on our systems, the harder it is to reverse the damage.
What’s next for me
With a stable management plan that follows best available practice for my diagnoses, I’m focusing on simply healthy human habits to allow my nervous system time and space to heal. I continue all of the above holistic management plans. And take a step back from aggressively researching and trying new things.
I’m waiting for Dr Jarred Younger and team to do their research into dextro-naltrexone (a chemical hypothesized to work better and for more people than LDN). And for any other big research break throughs.
My curious mind (because I don’t think I’ll ever stop researching or learning) is focused on the other aspects associated with neuroinflammation, brain health, and general wellbeing. On simple things like enough water, morning sunlight, gentle movement, Epsom salt baths, working on my bucket list and loving these children I have.
I look forward to my next updates.
