Supraneeti was diagnosed with Endometriosis about a year ago, and has shared her story with us today.  She lives in London and is finding creative ways of expressing herself, our disease, and it’s effect.  Her story, and music video, follow:

I am a fellow Endo-sufferer or shall we say survivor?! I am also a film director and an actress and after being in practical house arrest for more than 5 months, I decided to make a short film in style of a music video.  The most difficult part of my recovery has been the stigma attached to anything to do with lady parts.

How long have you been in pain/diagnosed with Endo?

I was diagnosed about a year ago, but believe it or not, I did not fully understand what was actually wrong with me. I kept going back and forth between doctors and gynecologists and some ‘suspected’ Endometriosis whilst some said you just have heavy, painful periods. My pains got so severe that I was practically bed bound and the doctor finally referred me for a Laporoscopy. They found and removed endo from a couple of places.

I was also fitted with a Mirena coil before gaining consciousness. I had consented to this, but had not known that it can be a big pain if you have NOT had children yet. I was told it was the best way to manage endometriosis. I returned home, but the pain didn’t leave. It got progressively worse – a constant stabbing pain. I could not even walk to the bathroom.

For four months, it went on when finally in July I returned to the doctors and told them I really had given this coil thing a good shot and was not living my life like this anymore. I got it taken out.

I had never taken the pill before so the doctors warned me a combined pill would give me ‘side effects’ for a good few weeks. I took it in a heart beat. The pain from coil has subsided considerably, but the Endo pain (which is a different sort of pain I can tell) has returned and latest ultrasound has shown new ovarian cysts. I suppose, it never goes away, you only need to learn to manage it. With the pill, however, I have had a lot of sickness, and have had very little sleep as I wake up early mornings wanting to throw up. The mood swings which can be pill related or perhaps just my frustration – or both, have been pretty bad. I get weird thoughts I had never had before.

So, in a nutshell, I am still sort of carrying on with my battle with the condition and haven’t found an end.

Can you go into a little bit more of the other struggles and illnesses you have?  I saw them flash across the screen at the end.  You’ve endured so much.  And you are still strong.  And beautiful!!

Thank you so much! I have had anxiety and mild agoraphobia in the past, but it wasn’t anything this bad. Agoraphobia makes you not want to step out of your home (I also made a film inspired by this subject a while back). I also struggled with diet in the past, until I decided I just wanted to be healthy, and not stick thin.

Soon after the surgery, I was in bed for months, so I was not moving at all. On top of that, I was on Codeine and Tramadol so it was hardcore, and my stomach lining began to deteriorate despite taking things to coat it.

I was told to eat more than a little snack each time before painkiller to avoid further damage, but I was taking painkillers five times a day. I was eating, and eating, and feeling sick and horrible. The fat began to grow all over me, I put on 2 stone in the last 5 months, and well, rest you can tell from the video.

I would be lying if I said between the painkillers and HRT, I haven’t had some messed up thoughts. I have had days of going on a self destruct and gorging things down my throat. My physical strength is very low as we speak, and socially, I sort of just disappeared from people’s lives apart from occasional updates on social media to show I’m still here.

If you are used to working in front of and behind camera, it is just so strange having to drop it all together one day and say, actually, I will spend half a year in bed in pain, put on 2 stone and think about how I can make a return.

No more meeting, films, projects or photoshoots. People would ask me, “oh, what is going on in your life, what project are you working on? What happened to that film of yours?” And I’d want to scream – get off my back!

Do you have any goals and dreams?  Any that were dashed with your diagnosis?

Yes, many! I have just finished my indie feature Perfect Hunch of an Agoraphobe (I use a directorial pseydonym Erwin Jones – long story). The irony is that I play an agoraphobic in it who is in a house arrest for months due to her anxiety. It was like practically living my own script and character…

I intended to put a lot of energy in promoting it, but it never materialised per plan. NOT YET. I have also had another script ready which was a lot bigger project, about which I had been talking to a few producers…all that had to stop. I am now about a year and many pounds behind in my career it seems.

Anything we can do to help?

Please help me spread the word on the hashtag #DONTDOPOP and encourage other women to do so. I am glad you pointed out the lingerie might make some people uncomfortable. Just this morning Facebook issued me a warning on my page saying my video is “inappropriate” because there is some nudity in it? Seriously? Why are pictures of nude healthy athletes or models in bikinis so welcome on social media and someone with illness in lingerie is inappropriate?

I decided to make the video when someone I know told me there was no way in hell I could continue being an actress with my body looking like that.

My biggest hurdle has been not just the pain and Endo, but the stigma around it. When the gynae first mentioned its name, I went ‘what?’ because I never knew such thing existed. When I came back from the hospital, a close friend of mine told me she had it.

I nearly dropped my phone. She never told me because of embarrassment. Can you believe it?

I was doing the same thing, for a long time, lying to people to say it was appendicitis related. I think it is a lot more difficult if you are in the film industry, where you have to look glamorous and healthy. I mean, periods, pads, stretch marks and scars – ew?

So I decided I couldn’t get rid of these things overnight. But I can prevent other women making the mistake I made. If your periods are painful, chase your doctor and get them to check you out. Don’t wait for the day when everything in your life starts crumbling down. I decided to keep the clothing to minimum so people can see what we wear on our bodies all the time – pads, scars, stretchmarks. This is everyday life!

But most importantly, don’t let anyone judge how you look. Endo can change the way you look and feel about yourself. It can change your behaviour, and relationships. There is no need to pretend being someone you are not. So let us just stop caring if people get grossed out by you talking about your periods. Just talk about it.

I spent all of last night awake before making the video public. I worked on this thing for two weeks. But to myself, I was thinking, once it’s out there on the internet, that’s it – it’s there forever. With a name like mine, good luck not finding it! In the end I did decide to upload it.

This is how embarrassed I STILL am as the creator of the video and having uploaded it. There is no shame in it, yet we have that strange fear because of the weird things people might think.

How long have you been singing? Beautiful voice!

Thank you! I am not a professional singer, but I did study music theatre here in my hometown some years ago and do enjoy singing occasionally 🙂

Do you have lyrics I can post?

Lyrics are below. I wanted to write about pop culture and our standards about beauty. I ended up using music as a representation of what Pop is. It is just a dialogue between the singer and another person, about the singer wanting to sing pop songs. Hope the lyrics make sense, they did when they were in my head!

And did you want to explain any personal part of the song or video?

Shot at my home. I have also shot some behind the scenes footage I will be posting in a few days. Everything about the video is personal. This has been my life for a long time. The ending of the video is most important to me. Let’s not make this a taboo subject, and let’s focus on our health, than the sizes dictated by pop culture and media. As long as you are taking good care of your body, nothing else matters. There is ALWAYS a positive end to a story. We just have to get to it.

No recovery can take place until you feel happy within. And the anxiety that comes from not being perfect is a far bigger enemy than Endometriosis itself. #DONTDOPOP

I hope more women can join us in the discussion – I invite everyone to share their experiences on the hashtag, of not just being in pain, but also how their social lives changed after Endo took over.

Video:

Lyrics:

When I got the mail
Things went off the rail
Didn’t know what I would doLike a paper plane, I know
Your joy, my pain
Blew on and on
You said I’m insane

Lo, I’m here, here now
Don’t know why
Don’t know what to do
So let’s put these
notes together
Together,
Not hard
Not hard at all
Easy
Easy slow
Slow, easy
Not hard at all

And you beg and beseech me
I could care less
Cliched – it might be so

From underground to indie
From Tool to Eminem
Metallica to Debussy
Now that’s all aside
It’s only for the crowd now , so..

And you say, you’ve lost the plot
Oh, baby, don’t,
Baby don’t,
Baby don’t do
Oh baby don’t do

Baby, don’t
Baby don’t
Baby don’t
Baby don’t do Pop

I do it anyway

Baby don’t do Pop

Baby don’t
Baby don’t
Baby don’t do
Baby don’t do

Baby don’t
Baby don’t
Baby don
Baby don’t do Pop

Baby don’t
Baby don’t do pop

Now you see I cannot sing much
But I sing anyway
Like nobody’s listening,
How crass might it be

People throw no cans at pop
I got our style down to pop
People throw no cans at pop
I got our style down to pop

The long evenings oh
They remember those summer nights and
young kisses to dead dead tracks
Never do they give up the same old crap, no never

And you screech with anger
Tunes I’m making in the bedroom
You say, got you taste not?
I run away, run away
Long, long strides, run away
run away, in a haste

And sing, while you beg me not to
It’s not funny I’m laughing anyway

It’s my lucky day
It’s our lucky day
Baby our lucky day
Our lucky day

You say:
Baby don’t do pop
Baby don’t do pop
Baby don’t do pop
Baby don’t do pop
Hey baby, don’t do pop!

I want to send a special Thank You out to Supraneeti for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you for creating this piece and sharing it with the rest of us, and the world.  Continue to do great things. Thank you!!! Yours, Lisa.

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And if YOU would like to share your story, please let me know.  The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.

Yours, Lisa.