#surgicalmenopause

[samanthajane1803]

Suffering from 30 of these! #surgicalmenopause #hystersister #hysterectomyrecovery #hrt

[marinafishiie]

Ladies and gentlemen I present to you uterus cake 3.0! This year we ate the cake (And cupcakes) in the order in which they were removed from me. First my uterus and fallopian tubes, then my left ovary, and finally the left. The removal of my ovaries left me in surgical menopause, which is far stronger and a never-ending (or so it seems) version of menopause. Surgical menopause is widely unresearched and thus there is a lot of unknowns. I'm lucky to have joined up with a group of women who are experiencing it as well and can help me navigate my future. Despite all of this, I have never been happier or healthier in my life and I'm so so grateful to my surgeon for helping me through my darkest hour. #uterus #endo #endometriosis #hysterectomy #uteruscake #surgicalmenopause

[christenclifford]

This is what #menopause looks like on the subway. Lucky I got a seat. Because when it comes on hot and fast and bad sometimes I get weak. It's happening less and less, it feels more manageable. At first this was constant, like 2ice an hour. I love that @_zoe.c_ calls it a #powersurge but a #hotflash still usually makes me feel like a #hotmess Coat off sweater off. I read that stoping and meditating and visualizing cold things can help and it does. But I can rarely get in that state of mind. I feel like I'm being attacked from the inside. But when I can slow down, stop, breath and imagine an iceberg or that scene from House of Cards when Robin Wright holds herself in front of the cold fridge in the middle of a dinner party, then I can sometimes cool down. #posttreatment #cancer #ovariancancer #uterinecancer #surgicalmenopause #womenshealthcareasperformanceart #nycsubway #fan

[jozi-ovari]

Let’s talk about it: prognosis v’s diagnosis

A great prognosis doesn't remove the difficulties of living with the associated diagnosis. 

With appropriate treatment, a diagnosis of a borderline ovarian tumour (BOT) has an excellent prognosis. 

BOT - grade zero ovarian cancer (OC) - is normally treated with surgery alone. 

BOTs are slow growing, so chemotherapy is of no use [i.e. it’s not needed].

Surgery, however, is radical, often involving a “full pelvic clearance” and resulting in early onset, surgical menopause - and a bunch of associated challenges.  

Even after surgery, long-term follow-up is needed and the risk of recurrence (no matter how small) doesn’t disappear.  And neither does our fear.

I think we - and our healthcare providers, family, friends, colleagues - need to find a way to describe our diagnosis - and our experiences living with it - that doesn't underplay it. Of course we mustn’t overplay it either: comparatively, it’s a pretty great ovarian cancer diagnosis to own.

But the diagnosis, the treatment, the surgery - and the associated consequences [surgical menopause especially - more on that coming in another post], along with the monitoring, and the accompanying waiting and worrying are often sidelined: by our healthcare providers, by us, and - as a result - by others.  

Collectively, we focus on the "excellent prognosis".

That's ok; we do have an excellent prognosis.

I'm sure I'm not the only one who has celebrated a BOT diagnosis: I was told to prepare myself for 5 year survival after my surgery as it was presumed to be stage 2c typical OC. 

But I was then told WOO-HOO IT'S BORDERLINE (i.e. stage 2c grade zero ovarian cancer).

It's crazy. 

And I feel incredibly grateful. But 2.5 years later I'm realising I'm exhausted. I'm exhausted from always saying "it's only BOT" and for using this to reassure family, friends, colleagues and myself. 

I'm exhausted from telling myself that I shouldn't be worrying - that I don't have a diagnosis that justifies me worrying about every ache or strange sensation.  I’m currently feeling wonky: my hormones are out of whack, menopausal symptoms are flaring, I’m not sleeping, my iron reserves are shot, I’m tired and dizzy and faint.  My brain fog is worse than ever.  

I’m exhausted waiting on my six monthly check up; it’s the first time it’s been six months (initially I had a monitoring visit every 3 months, then every 4).  I’m supposed to be relieved, I think, that I’m doing ok and have been “upgraded” to less regular visits.  But I’m realising that the anxiety about what might be going on inside my body since my last check up is perhaps more exhausting than more regular follow-ups.  Maybe I should ask for a downgrade.

I’m exhausted by the confusing information, the limited research, the conflicting advice about BOTs.  

I’m exhausted by the lack of clarity about what BOTs are, or aren’t.

The challenges of this exhausting diagnosis are shared amongst many other BOT ladies that I’ve engaged with.

I’ve written about this before.

Because we say "it's only BOT", we don't feel we deserve to worry or complain. 

Because we say “it’s only BOT”, our friends and families don't always know that we need support [disclaimer: my friends and family are bloody brilliant]. Because they say “it’s only BOT”, our healthcare providers don't always provide the best support. [disclaimer: my gyane-oncologist is flipping fantastic]

Perhaps - with practice - we do become better at living with our diagnosis. But I’m not sure that we can ever completely master it. The fact is, it’s a challenging diagnosis, in spite of its excellent prognosis.

And it can be really hard to talk about.

Image by Ana Frois

[christenclifford]

Sex object cat object we fetishize our kits. Reading trying to nap this afternoon. Sweats and flushes and suddenly wide awake. And then all over again. And again. Sleeplessness. Finally got a real nap from 5-6:30. The #surgicalmenopause seems to be getting more tolerable. I think it's partly due to the cooler weather. No one really knows who women get hot flashes (or power surges as I am encouraged to think of them as) if it's all hormonal then why do we get them more in hot weather? External body temps can bring them on. One day spent in the ocean cooled me down for days afterwards, the cooler temperatures mean I tend to underdress hot flashes leaving the house, cool down on way to subway, another one the subway etc etc and later in the day I'm freezing. I'm trying to put the heat/energy in a little box in my chest that I can call on later. Visualizing the power as useful instead of fighting it. Valenti's #sexobject was a good read - especially for this campaign - a litany of the suffering of being a woman in public. Being preyed on as a preteen and young teen made me so mad- because I recognized it but also for what it was- older men using naïveté for a power play for their pleasure. She writes that a certain kind of invasive attention stopped as she became an older teen. I think if the 13 yr old girls I see every day, F's classmates, and I wonder what they go through on the subway and whether they talk about it. And the parts about predatory teachers at Stuy HS when F is applying...holy shit. I forget to practice self care- but an afternoon in bed with a good book and kitties while kids are safe with friends and neighbors- thank you. #fuckcancer #selfcare #booksofinstagram #catsofinstagram #feminism

[christenclifford]

Post maternal vaginas need more respect. They are connected to post maternal urethras. (And I don't think that hysterectomy helped.) thisbis the urine that escaped on the bathroom floor at an art opening for Feminism is Politics at Pratt Manhattan Gallery. (I cleaned it up! How dare you assume otherwise!)If I am walking down the street and I sneeze, I have to stop and cross my legs so this doesn't happen. I caught a cold and couldn't cross my legs in time. I was IN A BATHROOM! This doesn't happen to everyone, and in France women get a course of govt sponsored vag therapy but this serious shit! I mean piss. I mean I can't take this "mumble mumble never the same again mumble mumble." Men get old and get a fucking blue pill to help their dicks which insurance pays for while I can't control my bladder! Patriarchy! Adult diapers! Patriarchy! I am somehow dried up AND sweaty and pissing myself AND someone else's hair is growing out of my head! #fuckcancer #bladderproblems #womensheathcareasperformamceart #peeselfie #menopause #surgicalmenopause #holyshitthisismylife #pratt #feministart #feminismispolitics