My Endometriosis Story | How I was diagnosed with Endometriosis

After everything I’ve written about endometriosis, I realised that I haven’t shared my own story! How I was diagnosed, what I went through – in fact what many of us go through… It’s all here, well the first 10 years of it!

I share all this in the hope that it will help someone out there – whether you suffer from endometriosis yourself or whether you’re the family, friend or colleague of someone who does.

Disclaimer: please remember that everything I share here is my personal experience. I am not providing any form of medical advice as I am not a medical professional. Please seek a doctor for your personal case.

If you would like to watch a video version of this blog post, then you can right here. If not, then just scroll on to read:

Age 10

During a special class in school, I got the gist of what periods are, why they happen and what to expect whenever they do begin – ummm, I kind of expected it to begin around the age of 13.

Little did I know, it was my last year of freedom.

Last year of being able to play sports and feel energetic.

Age 11

A month before the start of secondary school, my periods began.

When you’re taught the theory of it all and the experience is almost nothing like it, it feels like quite the surprise. Actually, you almost feel cheated.

You’re told that you bleed around a tablespoon a day – really?! It didn’t seem so. I felt I was bleeding far more with large clots and severe pain.

The cramping was obviously new to me, the back pain was new, the pain going down my leg was new, the weakness I felt was new, the nausea, the throwing up, the diarrhoea were all new to me and another odd thing for me at the time was – during my periods, I felt a lot colder. I guess that came from the weakness.

I thought periods were just about the bleeding, but it was so much more than that.

I bled for 8-9 days every month, wearing thick night-time pads during the day – I’d even double them up – wear two but even then I’d have occasions where my tights and skirt would get soaked in blood.

This made me paranoid. Constantly checking and taking every opportunity possible to go to the bathroom while in school.

I look back and I really wonder how I did it. How did I get through so much – how I still get through so much.

Relevant read:

• Tips: How to Manage School Work, Bullying and Endometriosis

Going to school was important, then working was important, trying to build a life was important – we don’t have a choice do we?!

We do.

What I should have been educated in that periods or menstrual education class was that period pain is not normal. Luckily for me, my mother saw and understood my plight.

How so?!

Because she went through it all too.

She told me that she suffered too. She told me that period pain isn’t normal. She told me that seeing a doctor is important.

Our first stop, the GP.

My mum accompanied the 11 year old me to the GP who told us that initially, the menstrual cycle takes a few months to settle and that I should wait it out. If I felt too much pain, then I could take a pain killer.

Soon the painkiller and the hot water bottle became my best friends. But the pain killer didn’t do much – it was more a mental thing that I’d taken one. And guess what, my periods didn’t “settle”.

I was living in London at the time, and under the NHS, you couldn’t just see a gynaecologist because you wanted to – you had to be referred through your GP.

After really pushing my GP, he gave in. I was referred to a gynaecologist.

Me at age 12:

 

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Age 12

After a long wait and a few more period cycles, I finally got to see the gynaecologist.

I explained my symptoms – the heavy bleeding, the abdomen, back and leg pain, the diarrhea, nausea, constipation, the hirsutism, the weakness and feeling cold.

I also had to explain the type of bleeding I was experiencing. The form, the colour and the regularity in which I had to change my sanitary pad.

For me, the bleeding was dark, thick, heavy and had clots too. I needed to change my sanitary pad every 1 to 2 hours.

I was asked about my family’s medical history.

My mother had endometriosis, PCOS, adenomyosis and fibroids. She had to have a complete hysterectomy to help her with some of these conditions.

It was now, at the early age of 12, I was beginning to understand what all my mum had gone through. I was amazed. I was in awe of her. And over the years I’ve come to respect the struggles many with a uterus go through.

The gynaecologist explained that I may have PCOS and endometriosis.

I was ordered a regular whole abdomen ultrasound and hormonal blood tests.

To cut this long story a bit, the ultrasound showed bulky ovaries and chocolate cysts which reaffirmed the gynaecologist’s suspicion of endometriosis.

My blood tests showed my hormones to be all over the place – especially my testosterone which was very high explaining the hirsutism and also indicating the PCOS – polycystic ovarian syndrome.

If you would like to know more about PCOS and hirsutism, the causes and how I help myself through it, I have done blog posts and videos of it.

• Causes: Why do I have Hirsutism?
• How to Handle Hirsutism & Acne if You Have PCOS

Ooo very importantly, I wish to share two things.

The first, chocolate cysts are, and I quote MedicalNewsToday.com:

“A chocolate cyst is an ovarian cyst filled with old blood. These cysts, which doctors call endometriomas, are not cancerous, though they usually mean that a person’s endometriosis is severe enough to complicate their fertility. Between 20 and 40 percent of people with endometriosis develop chocolate cysts.”

And secondly, despite having a clear indication through my symptoms, blood results and ultrasound results that I have endometriosis – the endometriosis could not be confirmed.

The only way to confirm endometriosis was through a laparoscopy. A surgical procedure in which they remove the suspected area of endometriosis and have it lab tested.

The gynaecologist felt I was too young to go through this procedure and believed that the other evidence was enough for us to create a treatment plan keeping endometriosis in mind.

And what was this treatment plan?!

Okay now at that time I didn’t understand the difference between a treatment and a cure. I thought this plan would help cure me.

The plan was to put me on the pill, which would hopefully control the pain and the heavy bleeding. Again, the gynaecologist felt I was still too young to be on the pill.

Age 15

I was put on a high-estrogen pill which caused severe breast tenderness making it painful to wear my clothes. In fact every breath was painful.

My gynaecologist put me on a low estrogen pill and prescribed the supplement, evening primrose oil.

Even now (despite not being on the pill and my estrogen increases), when breast tenderness occurs, I go back to taking this supplement and it really helps me.

Age 16

The pills weren’t working, neither were the painkillers helping me out the way I would hope they would.

I was now off the pill and living with all my issues without any pain killers.

I was struggling but I had also taken on a job. I was working weekends at Accessorize and going to school on the weekdays.

My period days would be spent in the stockroom where I could sit and sort through the stock. This worked well for me because it meant I could take breaks. My managers were kind and understood my needs. They accommodated me as much as possible.

I remember many such days crying in that stock room while working through the pain. There was nothing I could do. I couldn’t keep taking sick days  – this was my first job and I needed the experience.

Thankfully I managed to stay on at Accessorize for three years but it took a toll on me. My legs were giving in and my period pain kept getting more intense.

Age 18

The gynaecologist felt I had endured enough and it was time for me to have a laparoscopy. An ablation procedure in which they burn the endometriosis and they also test the tissue sample to confirm whether this is actually endo or not.

Relevant read:

• Endometriosis Surgery: Ablation v Excision – Which is Better?

In hindsight, ablation is a terrible route to go down. As we now know, ablation surgery removes the endometriosis for the surface while the root of the issue is left behind.

We now know that excision surgery is the gold standard – a surgery that I was able to get done at the age of 35.

I’ve documented this experience in more detail, so check out the links here:

• How Much Does Laparoscopic Endometriosis Excision Surgery Cost?
• My Guide: How To Prepare For Endometriosis Laparoscopic Excision Surgery
• My Guide: What To Expect After Endometriosis Excision Surgery
• Six Months On: Endometriosis Laparoscopic Excision Surgery – Am I Better?
• One Year on from Endometriosis Excision Surgery – Was it Worth it?

Now the ablation surgery was done, it was painful as hell but it did confirm my endometriosis.

I now had an actual, confirmed diagnosis. Not that it mattered to me much because I was already being treated as an endo patient. This just sealed it. It was on paper – I was now not a ‘suspected’ case, I was a confirmed case. And yes, for me too it took the average of 7.5 years to be that confirmed case, but unlike others, I had doctors who were proactive since I was 12.

My periods post surgery was painful to levels I had never experienced, but the bleeding was better – things were more in control there.

But this only lasted 3-4 months, after which it all went terribly south. I had a period that lasted over 44 days – unending heavy bleeding.

Despite getting into a really good design university in New York, I couldn’t pursue it – my pain and bleeding was more a problem now than it was before.

I deferred entry twice and eventually I couldn’t go.

Financial constraints and poor health were major deciding factors. I could have even managed the financial part somehow but poor health created some serious doubts on me being able to manage the demands of higher education and then getting a job in a field which clearly would have long hours.

I had to take a gap year to get myself in a better mental and physical state of mind.

Did it work? Nope.

Age 19.5

I joined a private college in London and did my foundation year diploma in art – I had gotten a scholarship so thankfully I didn’t have that pressure on my mind. I also started working at the art and stationery department of Selfridges on the weekends.

I was back to the same struggles of trying to study and hold up a job.

Age 20.5

Somehow I managed to complete my foundation year, got a distinction and then made a decision.

I was not going to pursue higher education.

I didn’t really know what I was going to do, but I knew my body wasn’t going to be able to manage this life.

My legs were struggling and my periods were draining me of my life.

Age 21

It had now been 10 years since I had been unofficially diagnosed with endometriosis and nothing had changed in my quality of life. It was probably worse now.

I had more knowledge about the condition. I was more confident – school counselling and being more accepting of my life and who I was, helped.

But – I had no educational or professional goals that I could realistically pursue.

Plus to top it all off, I moved to Mumbai, India. A new city, a new life and utter confusion with severely deteriorating health.

Relevant Read:

• Living in Mumbai With a Disability [Including London & NYC]

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That’s it, those were my first 10 years with endometriosis and PCOS.

They weren’t the most inspiring but I guess that wasn’t the point – well actually it was inspiring – I got through it and I still don’t know how I did, but I guess that’s the beauty of time – it’s always passing.

Before I really end, I wish to thank all the doctors who helped me, my teachers and friends who were always so encouraging and supportive, my employers who understood my constraints, my family who believed me – especially my mum who did what she could for me – and still does. Thank you everyone.

I hope my story helps someone out there. I hope this blog helps someone out there.

If you have any questions then please do leave it in the comments section below.

Thank you for taking the time to read.

Just a FYI – I do also have a page where I have linked all my endometriosis relevant blog posts for easier access. So do check that out here.

If you’re a social media person, then you can follow me on Instagram, Twitter, Facebook, Pinterest or YouTube.

I have a podcast too. You can check them out here along with their transcripts or if you don’t wanna read them then they’re available on Spotify and Apple Podcasts too.