My Wandering Womb

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My Wandering Womb

Endometriosis advocate, lawyer, scientist, policy analyst. Endometriosis advocate, lawyer, scientist, and public policy analyst.

Correcting - and stopping the spread of - misinformation about endometriosis. Providing advice to endo sufferers about their disease, based on science and my 30 years of lived experience.

27/03/2024

Welcome to !
My name is Diane and I'm the face behind . I was born and live in Canberra, Australia, and grew up in Melbourne.
I have degrees in law, pharmacology, and communications, and work mainly in public policy.
I first experienced endo symptoms at 8, which got worse with my first period at 11. Like many of us, I was put on the pill very young (14), and by the time I was 15, I was taking a box of panadeine forte (paracetamol/codeine) every period. I was diagnosed with endo when I was 29.
The intervening time was filled with pain, GI issues, and, memorably, an emergent oophorectomy due to torsion (caused by a massive endometrioma).
I had my first laparoscopic surgery at 29, where the (general obgyn) surgeon ablated endo on my left uterosacral ligament and implanted the mirena coll.
I did NOT respond well and have suffered from constant severe pain ever since. I had a hysterectomy at 30 for adenomyosis and had amazing pain relief for four years
...until I started randomly bleeding, went to the GP and found out I had approx five endo lesions in my vaginal vault (around the scar from my hyst, which was a laparoscopic assisted vaginal hysterectomy)
I was told not to do anything about the disease
"until my quality of life was unbearable" bc I would need a bowel resection and probably a stoma.
This was stupid advice, but I took it because I didn't know any better and I trusted my surgeon. So my disease was left untreated for several years, until I wound up with three ED presentations in one year for pain management. (Contd. in comments)

05/11/2023

My bestest furbaby, Lenny.
16 September 2002 - 2023

22/07/2023

I realised today I don’t have any photos with - so I took advantage of us wearing matching outfits and I’m posting this. An excellent pre-Barbie sleepover (complete with pink burgers from ), a pamper , and then premium lounge for the actual movie - and it could not have been better! 🩷🦩👛🧞‍♀️🎀💝🌸💞

09/05/2023

A diagnosis of CS does not justify withholding pain relief!

Central sensitization is a condition where the nervous system becomes persistently active, leading to an increase in the firing of action potentials in response to limited input from the peripheral nervous system. This leads to a decrease in sensitivity to pain and an increase in the body's response to painful stimuli, often resulting in chronic pain.

While a diagnosis of central sensitization may be made, it does not justify withholding pain relief. Pain is a complex experience that can have a significant negative impact on a person's quality of life, and everyone deserves adequate pain management. In fact, it is important to treat central sensitization effectively because persistent pain can cause further changes in the nervous system, leading to a chronic pain cycle.

Therefore, a diagnosis of central sensitization calls for proper pain management rather than withholding pain relief. It is essential to have an individualized treatment plan that includes both pharmacological and non-pharmacological interventions to manage chronic pain effectively. These interventions may include physical therapy, cognitive-behavioral therapy, and other complementary therapies such as acupuncture and massage.

It is also important to note that pain relief is not synonymous with addiction or substance abuse, and healthcare providers can work with individuals to develop safe and effective pain management strategies.

Sources:
1. https://www.ncbi.nlm.nih.gov/books/NBK553027
2. https://www.medicalnewstoday.com/articles/central-sensitization-syndrome
3. https://pubmed.ncbi.nlm.nih.gov/36237158

10/04/2023

Who’d a thunk two neurospicy white girls trying to rap would reach 20,000 people?! Me and Invisible Iconic doing our adorable, dorky thing 😍

09/04/2023

Chronic pain brings with it overwhelming misery. Exhaustion, defeat, helplessness…and desperation for even the SLIGHTEST relief.
But it’s really important to try not to let these feelings impair your decision-making - because having bad surgery will leave you in a worse position than if you don’t have surgery at all.

What is ‘bad’ surgery? Ablation surgery and incomplete/inexpert excision surgery. These (ablation specifically but the problems with inexpert excision are similar) generally deliver very little relief and instead can cause massive, debilitating damage and permanent disablement.
How? To start, you’re unlikely to get any pain/symptom relief at all; if you do, it is unlikely last longer than 3-12 months (18 months if you’re lucky!). But it’s worse than just short-lived relief; you're likely to be in a worse position than you were before surgery.
Because here's the thing: bad surgeries duck you up, leaving dense, painful adhesions which make future surgery more complex by disguising or concealing endo from the next surgeon.
And, once you've had multiple bad surgeries, even the best, most expert surgeon in the world doing their best won't be able to "fix" you, or bring you back to "normal". They will do their best - and their best is significantly better than the best of other surgeons - but those previous surgeries will have done more damage than the surgeon can undo. Continued in comments…

09/04/2023

Alex at Invisible Iconic has put together a great podcast about the experiences of , and the lingering perception of , in pts with . It’s incredibly sad that between us - with an age difference spanning 26 years - Jorja’s experiences as a 16yo are no different than mine as a 42yo, despite almost three intervening decades of supposed medical advances.
Save this post, go save it from Alex’s account (), or watch as well as listen on YouTube here: https://youtu.be/eXTEeHPwgm0

09/04/2023

And here is part 2!

09/04/2023

I’m kinda surprised - but very grateful - that so many people asked me to give my stories on this topic a permanent place on the grid. So, with a LOT of gratitude to my frendo Nathali , here y’all are!
Part 2 to follow 🎗️💛🌻

09/04/2023

In my opinion, the new pelvic pain clinics will do more harm than good. Here’s why (caption text from slides):
1) you'll be told your pain isn't as bad as you think, and you'll be asked patronisingly about your mental health history
2) you'll be referred for self-gaslighting therapy (CBT) and prescribed a tricyclic antidepressant
3) if you're not already taking hormone suppression therapy, you'll be forced to do that before you receive any other treatment
4) when (3) above inevitably fails, and you're still in pain and ask for painkillers, you'll be
"diagnosed" with "central sensitisation"
5) you'll be referred for a pelvic ultrasound, which will "prove" you don't have endometriosis
6) the doctors will use this to deny you painkillers, but you will be referred for their special form of white lady yoga and pelvic floor physiotherapy
7) if chemical menopause, self-gaslighting, antidepressants, pelvic physio, and yoga don't help, you'll be "prescribed" a low FODMAP diet - but nobody will tell you it's an elimination diet, and neither safe nor sustainable as a longterm way of eating
8) if the low FODMAP diet doesn't work, you'll be sent for a colonoscopy which will also
"prove" you don't have endo
9) If 1-8 don't work, you'll be told to do acupuncture and buy expensive medicinal c4n4b1s products
10) if acupuncture doesn't help, you'll be offered lyrica (pregabalin), but nobody will tell you that it carries a black box warning for s*icidal behaviour and ideation, dependence, addiction, respiratory depression, cognitive impairment, etc
11) if lyrica doesn't work, there are two possibilities: (a) you'll be back at step 1 (you're just anxious/negative/catastrophising, it's CeNtRaL SenSItIsaTiON, do a yoga) or (b) you might, maybe, be offered a very low dose of sustained release tapentadol (palexia); or a ketamine infusion once every 6 months; or if you're REALLY lucky, you'll be given the lowest possible dose buprenorphine transdermal patch
**if you don't do all of those things, you'll be kicked out/have your care withdrawn, with no continuity of care**

09/04/2023

So my toes and fingers sometimes do the Raynaud’s thing (see how one is super white compared to the others). It’s pretty much a non issue for me in terms of quality of life, but I noticed it’s been worse since my last surgery. And, as I was taking the pics, I realised that I’ve ever met an endo sufferer who didn’t also have a trail of other little quirks or conditions, all collected along the way.
Just from chatting with friends in the endo community, it seems like the most common comorbidities are POTS, MCAS, hypermobile EDS, and/or PTSD (or are neurodiverse - for example, autism or adhd).
What other little quirks, conditions, diagnoses - in addition to endo - have you gathered, that you’d always thought were just ‘normal’, rather than a new dx to collect?

09/04/2023

Erythema ab igne - toasted skin syndrome. Caused by chronic exposure to heat, and it used to be found mainly on the legs of people with open fireplaces, then it was on the (literal) laps of laptop users, and now, wheat bags/heat packs/electric heating pads used to treat pain. I’ve blistered, bled, had infections, and been accused of self-harm, just from trying to relieve some of my endometriosis-associated pain. Nobody would choose this.

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