Living with endometriosis and chronic pelvic pain conditions (I have bladder and bowel endometriosis tethering my organs together, pudendal neuralgia and myofascial pelvic pain syndrome) it is not something you can “just handle” on your own no matter how strong you are. This comes from years of living with chronic pelvic pain going through the motions, pain, gaslighting and surviving to name a few.
And for a long time, I tried to just survive it. I was confused and my symptoms were foreign, I didn’t think it was permeant it seemed (in my mind) temporary running each which way to find a cure or a way to relieve the pain. No cure but support to help guide me and understand my conditions. I never thought in my wildest dreams Id go from loving my pilates, long walks and physically busy life to this slipping through my fingers in a matter of years… Six years later Im doing it tough and I have recognised support where I can find it professionally and through social media groups, community’s and reaching out.
I had never experienced pain like I did when it started after my last child in 2021 and the only thing I could compare my pelvic pain to was labour pain or severe period pain, unbeknownst to me “adenomyosis” (diagnosed seven months after the birth of my third and last baby) ended up resulting in two major surgery’s tubes removed first and diagnosis of adenomyosis and then partial hysterectomy to remove my uterus (adenomyosis) ovaries left.
I told myself to push through. To stay productive. To keep up with everything life, family, responsibilities even on the days where my body felt like it was shutting down from the inside out.
From the outside, it can look manageable, people dont see the inner chronic pelvic pain such diseases can cause. What people don’t see is the constant negotiation happening underneath:
How much pain can I tolerate right now?
Can I sit through this?
Do I cancel my plans or push through?
What will this cost me later?
Will this ever end.
That kind of mental and physical load isn’t something you’re meant to carry alone it affects you deeply its exhausting, the toll it takes? Well I find it hard to compare it to anything Id ever experienced so this made me feel very vulnerable and confused.
Chronic Pain Is Not Just Physical.
Endometriosis isn’t just about pelvic pain.
It’s the fatigue.
The nerve pain.
The bloating.
The unpredictability.
It means many things to each individual living with chronic pelvic pain, disease and illness.
It’s waking up not knowing what your body will allow that day. Or if you can find the inner strength to face the day (literally upon waking)
And over time, that unpredictability wears you down not just physically, but emotionally.
You start to feel isolated.
Because unless someone has lived it, it’s hard for them to truly understand what “chronic pelvic pain” actually feels like on a daily basis.
That’s where support becomes more than helpful, it becomes essential to your well being and progress with chronic pelvic pain diagnosis’s and conditions.
The Difference Support Makes
Having the right support doesn’t magically take the pain away, but it changes how you carry it.
Support can look like:
A partner, friend or family member who understands when you need to rest instead of push through pain.
A friend who doesn’t question you when you cancel plans or need an ear to listen.
A healthcare provider who actually listens and takes your symptoms seriously and can manage your pain affectively, not gaslight you or play your pain and symptoms down.
A community of people who get it without needing explanation like social media you can find groups to join and a community of people going through what you are its as simple as add and follow make a connection to other queens/warriors fighting your fight.
Phycologist, physio therapist, pain specialist.
For me, the difference is this:
Without support, everything feels heavier.
With support, I still have pain but I don’t feel as alone in it.
And that matters more than people realise.
When You Don’t Feel Supported.
This is the harder side and it’s real.
A lot of people with endometriosis or chronic pain conditions have experienced:
Being dismissed/gaslit by doctors.
Being given useless and other verbal nonsense and advice (after a while you learn quickly what a doctor is made of when you feel shelved or thrown bandaids.
Feeling judged for taking pain medication to stop the pain or mislead into believing you’re drug seeking.
Not being believed about the severity of symptoms.
That lack of support can actually make the condition harder to cope with. You will need to advocate and advocate hard for yourself. Because now you’re not just managing pain you’re also carrying frustration, doubt, and sometimes even shame. And that’s not something you should have to prove or defend.
Learning to Ask for (and Accept) Support
This didn’t come naturally to me. I was used to handling things on my own. But chronic illness has a way of forcing you to rethink and reshape your world, that in a really messed up way is now what you will need to do for sometime.
Learning to ask for support looked like:
Being honest about how bad things actually are.
Saying “I can’t do this today” “I need to rest or sit” without over-explaining.
Letting people help, even when it felt uncomfortable.
Accepting that needing support doesn’t make us weak.
Because the truth is this isn’t something you’re meant to carry alone. Support Is Part of Management, Not a Luxury. We talk a lot about medications, treatments, and surgery when it comes to endometriosis and chronic pelvic pain conditions.
But support? That’s part of management too.
Because when you feel supported:
You’re more likely to rest when you need to.
You’re less likely to push yourself into worse flares.
You have space to cope emotionally, not just physically.
Support doesn’t fix chronic pelvic pain or endometriosis. But it makes living with it more manageable.
If You’re Feeling Alone in This?
If you don’t have the support you need right now, I want to say this clearly:
That doesn’t mean you don’t deserve it. It doesn’t mean your pain isn’t real.
Sometimes it takes time to find the right people the ones who listen, understand, and don’t minimise what you’re going through.
But they are out there.
And in the meantime, even finding small pockets of support online, through shared experiences, through people who understand can make a difference.
Living with endometriosis and chronic pelvic pain is hard enough. You shouldn’t have to do it unsupported.
And you don’t have to prove how much you’re struggling to be worthy of care, understanding, and help.
Support isn’t a weakness. For people living with chronic pain it’s a lifeline.
Cassie x
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