Share Your Story: Tharini

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Photo by MESSALA CIULLA on Pexels.com

Tharini is 24 years old and was diagnosed with Endometriosis in 2020 and lives in Epsom in the United Kingdom. She wanted to stress with us the importance of tracking your symptoms.

Tharini’s Journey:   I was diagnosed with endo last year after suspecting for months. My symptoms include lower back pain and foot pain that really is bad. I also have classic endo symptoms like aching stomach and loss of blood each month too. I would sum up this by saying do not lose hope but merely insist on a appointment and then tests to check for symptoms that are indicative of endo.

It also helps to keep a diary of symptoms pertaining to your specific type of endo, what time of the month they occur etc as well. Never give up in other words, find a doctor who is really smart and caring at the same time.

I want to send a special Thank You out to Tharini for being brave enough to share her journey with us today!  And I agree: tracking and sharing symptoms is OH SO IMPORTANT!!    ❤ Yours, Lisa.


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.

Share Your Story: Jazz

text that reads: "don't be afraid to ask for help. Always trust your gut. Don't be afraid to ask stupid questions."

Diagnosed in 2017, Jazz shares her Endometriosis story with us today.

Jazz’s Journey:   I am 23 and was born in Northampton, UK where I continue to live with Cerebral Palsy and Stage 1 Endometriosis. I was born with my disability and I was diagnosed with Endo in November 2017. At 16 I started the pill, Femodette, because my periods were really heavy and really painful. I was given Mefanamic Acid to help relieve the pain and it did nothing. I was taking Paracetamol and Ibruprofen and was even told to stop crying in school because “it sounded like I was giving birth.” I was given another pill to take after Femodette failed to work called Regevidon.

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Share Your Story: Ashlea

Living in Manchester, Ashlea was 21 when she was diagnosed with Endometriosis.  Today she’s 29 years old and shares her Journey with us.  

Ashlea’s Journey: I wish there was a cure out there. It effects lives, effects careers, effects relationships…

The awareness needs to be made so other people wouldn’t have to go through what I have at the age of 29.

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Share Your Story: Melanie

Melanie standing in front of a cart of fresh baked artisan breads

Melanie Rossiter is writing a book about Endometriosis (which is available on Amazon) and wanted to share her Endo journey with us today.

Melanie’s Journey:

This story is taken from the introduction of my book ‘Reclaiming Feminine Wisdom: An Empowering Journey With Endometriosis’.

My struggle back to health began two weeks after the birth of my second child. I had to have postnatal emergency surgery for a retained placenta, which was followed by pain, adhesions (scar tissue sticking tissues or organs together), and endometriosis.

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2019 Endo Events Around the Globe

2019 Events with a yellow ribbon

Hopefully you can find an event near you; just click on the title of the event and it will bring you to more information.  I’ll add to this as I find new events! If YOU have an event you’d like me to add, please email me.

United Kingdom:

Birmingham – May 25, 2019 – EndoBall 2019

Brighton – April 14, 2019 – Brighton Marathon 2019

London – March 23, 2019 – Worldwide EndoMarch UK – London

United States:

California; Los Angeles – March 30, 2019 – LA EndoMarch 2019

California; San Diego – March 30, 2019 – Bloomin’ Uterus Endometriosis Awareness & Support Walk

New Jersey; Saddle Brook – March 23, 2019 – 3rd Annual Our Journey 5K for Endometriosis

New Jersey; Saddle Brook – March 23, 2019 – Our Journey Endo Walk

New Jersey; Rochelle Park – March 30, 2019 – 3rd Annual Our Journey Endometriosis Awareness 5K

An Endo Study in the UK is Looking for Participants

A fountain pen resting on a page containing the definition of research

Are you a South Asian Muslim woman living in the UK and have you been diagnosed with Endometriosis?  This one is for you!

Shabnam Jheengoor is a student at the University of Derby and she is working on her a research study for her Master’s in Psychology thesis.  Her work is being supervised by Dr. Sophie Williams.

She will be exploring the experiences of endometriosis of South Asian Muslim women in the UK.  Why?  Research suggests that culture/faith can influence one’s experience of living with endometriosis. Little is known about the challenges, concerns, needs, and experiences of South Asian Muslim women in the UK with endometriosis.   Shabman wishes to shed some light on that subject.  And offer these women a voice.

Qualified participants will be expected to take photographs of their daily life of living with endometriosis. The participants will be given 2 weeks to take photographs and the choice of photographs is theirs, following ethical photography guidelines of course.

Their participation will remain confidential and anonymous and is completely voluntary. Participants may also withdraw from the research before, during and after participation.

For more information on the study, please check out the participant form or you may contact Shabnam directly by email.  The recruitment period will close at the end of August 2018.  So, if you are able and interested, please get in touch with Ms. Jheengoor.

Recruitment flyer for endometriosis study

Share Your Story: Devon

Photo of Devon

Devon was 25 when she was diagnosed with Endometriosis.  She lives in Yorkshire, UK.  Now a year after her diagnosis, she tells her story…

Devon’s Journey:   Honestly, I couldn’t tell you if my journey started at 14 or 24. Many women have a long and traumatic timeline of events, knowing something was wrong and battling for an answer. Me? I had a life of this or that bothering me, visiting the GP, being told I’m normal or a hypochondriac (dependent on the GP I saw that day). I am the sort of person who somehow gets through life but no one, not even myself, really understands how I’m managing it so I never really pieced together that various symptoms may be linked. I just carried on and when something anomalous occurred (severe heavy bleeding out of nowhere, the kind of tiredness I just couldn’t shake, pain that just wouldn’t go). I’d sort of absent-mindedly visit my Dr, apologise for taking up their time and take whatever they said as gospel, fully trusting that they would know if something was wrong.

So it was that two years ago I popped into my GP’s office: “I’m sorry for visiting but I have a pain in the right hand side of my stomach. It’s been there for a few weeks and it’s getting worse. At first I thought maybe I just needed a poo…but I’ve pooed since then…” The Dr felt my tummy, tested me for pregnancy and sent me straight to hospital where a bed was waiting with advice that I probably had appendicitis. 3 days, 3 blood tests, 3 further pregnancy tests and an Internal Ultrasound later I was in Theater about to have an 6cm Ovarian Cyst removed. I woke up an hour or so later and was cheerfully informed by the surgeon that the Cyst was in fact bigger than expected at 8.5cm but he had removed it and didn’t spot anything such as Endometriosis whilst inside.

That is why I don’t know if my journey started 2 years ago or 12.

2 years ago a surgeon didn’t see any Endometriosis yet now I am armed with a diagnosis and extensive knowledge of the condition, I know that for years I showed signs, subtle signs, but signs. I spent my 15th Birthday in Hospital with unexplained stomach pain that was eventually dismissed as “probably an infection.” I remember periods always being heavy, very heavy and I remember them always hurting. At 16 I remember them being so bad one month I struggled to get out of bed. My boyfriend at the time wanted to go somewhere so I manned up and we went to Costa, I ordered my favourite drink, a hot chocolate – I tried to ignore my cramps and sip my drink but felt too nauseous through pain, eventually I had to admit defeat and beg to go home.

This level of period pain was fairly normal but it seemed to ease around the time I went onto the implant for contraception at 16/17 – I never put two and two together. From there I just continued as I was, my periods were heavy and long but the pain was okay, it wasn’t so bad as I couldn’t get out of bed anymore, so I figured it was all okay.

At 19 I had started a new relationship and was noticing Intercourse was painful. I visited my GP and then a specialist, I had a number of tests, swabs and internal exams carried out until I was finally sent away with: “Just try to relax more during intercourse” Excellent advice – why on Earth hadn’t I thought of that before?!

A year later I had the Mother of all periods – I don’t know why that month my womb decided to suddenly put her all into the “spring clean” but man I got a shock. So off I went to my GP, still a little traumatized that last time I went I had effectively been told not to be so frigid by a Dr and still at an age I was grossed out talking periods and stuff. I will never forget what this GP told me: “Some women have heavy periods, some don’t. This is just your lot I’m afraid, it’s certainly heavier than most but that is just your normal” At this point I had bled through tampons and pads within the space of an hour at a time, I felt dizzy and I was in pain, I had really thought this was abnormal but the GP delivered the statement so bluntly, I felt stupid for visiting.

From that day on, whenever asked “And do you have heavy periods?” I would reply “Oh, kind of, but I know that’s sometimes just normal, it’s normal for me”. From that appointment I kind of just coped – I had felt so stupid and embarrassed in her office I never wanted to go back. So I just battled on with my 10-14 day heavy and irregular periods and the ensuing pain. I had my implant replaced when needed and that was that – until my Cyst 2 years ago.

Following the surgery to remove my Cyst I had my implant removed, I wanted a break from the hormones I had been on for around 8 years. In the months following it’s removal I was a frequent visitor in A&E, unable to manage the pain of ovulating and menstruating, both of which had suddenly started intensifying. I saw a Gynae and was placed on a list for investigatory Laparoscopic surgery, the date of this surgery was moved forwards as I became less and less able to manage the pain.  In May 2017 I had a Laparoscopy in which they found and removed Endometriosis whilst inserting a Marina Coil to treat and prevent it.

To this date I am not entirely sure where it was found or how much, all I know is that they only had 45 mins free to carry out the surgery – so they treated what they saw and no more. Laparoscopy’s should provide roughly 1-2 years of relief, I received 4 weeks before the familiar aches and pains started again. One year on and I am no better off than I was before the surgery. Currently I am awaiting a referral to a new specialist, I am doing my best and learning to live as a chronic pain sufferer.

Most of all, I am educating myself.

Throughout my journey it has felt like The Blind leading The Blind, Dr’s know so little about the condition, it is hard to have faith in them when they have so little confidence in what they are advising. They don’t always spot the clear indications, the textbook symptoms and then once you are diagnosed, they know there is no easy answer, no magic pill. So yeah, that’s pretty much my story. There is so much more to it than a Timeline of events but I have tried to keep it as brief as possible whilst including all the important bits… I hope today is a good day for anybody reading!

Words of Advice: Be your own advocate – you have to go home and live your life. Push for a diagnosis, do research, ask your Dr any questions you have, find the treatment plans YOU want to explore. Seek support from the Endo community, find ladies to talk to for advice or just comfort. You will feel alone and overwhelmed at times but so many women understand. Mostly, be kind to yourself. Accept your limits, with them, remind yourself this is not a choice you made but an unfortunate part of your life. You can still choose how you live it.

If you would like to e-mail Devon, shed love to hear from you or you can follow her blog.

I want to send a special Thank You out to Devon for being brave enough to share her journey with us today!  While reading this, I went through a gambit of emotions: I related to a lot of what you were saying, then I was furious at the dismissal by your physicians, then I was elated at your strength, then sad that your pain has returned.  Your story captures such a large gambit of what we endure daily.  Thank you.    ❤ Yours, Lisa.

paper with "tell your story" written on it

And if YOU would like to share your story,  I’d love to share it.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Share Your Story: C

text that reads "I just wish there was a cure."

C. was 23 when she was diagnosed with Endometriosis.  Today she’s 29 and living in Staffordshire in the United Kingdom and she wants to share her story with us.

C’s Journey: I suffer with endometriosis, every day is a struggle with all the pain I have and feeling tired all the time. I also have a lot of hip and leg pain especially at night lying down its like having pressure in my thighs and hips and start getting sharp pains so I have keep moving all night from the left to the right side. And I have sciatica in my back sometimes. I’m not able to do much exercise either because I’m always feeling tired so I’m putting on weight.

The Last Word: I just wish there was a cure for this horrible disease, to be pain free and enjoy life and enjoy being a mum.

If you would like to contact C., you can email her here.  I’m sure she’d love to receive some encouragement and hope.

I want to send a special Thank You out to C. for sharing her story with us today.  May today be a better day than yesterday.


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.

Share Your Story : Kelly

text that reads "Life with Endometriosis"

Kelly was 23 years old when she was diagnosed with Endometriosis.  Two years later and living in England, she’s started her own blog to help spread awareness about this illness.  But today Kelly tells us her story…

Kelly’s Journey: My name is Kelly and I’m a 25 year old woman who has been living with endometriosis since roughly 2003. I was diagnosed in January 2015 after laparoscopic surgery at the age of 23, fifteen days before I turned 24 years old. I have endo on my bladder, bowels and peritoneum (as far as I know – it has been over a year since I had a laparoscopy).

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