This month is Endometriosis Awareness Month. This is not a condition that my sister or suffer from, but it is one that we have become of aware due to friends suffering from this condition. Because we are hearing about it more and more is why we wanted to do a topic on it…….
Please see Endometriosis Awareness Month 2022 with special guest features which covers:
- Endometriosis Awareness Month (with illustrative examples)
- ME Mel Story
- Gemski Dignum story
- Our Final thoughts/YouTube video
© Copyright 2019 Grief Probate Journey Blog *PLEASE NOTE THIS INFORMATION IS SOURCED FROM UK and AMERICAN WEBSITES* It is also based on our own experience. *We are not experts in this field, we are speaking purely on our own experience with information sought from the internet to give further examples. *
This month is Endometriosis Awareness Month. This is not a condition that my sister or I suffer from, but it is one that we have become of aware due to friends suffering from this condition. Because we are hearing about it more and more is why we wanted to do a topic on it.
We approached some of our friends who are suffering from this condition asking if they would like to feature on the topic. We are so happy thankful and grateful they said yes.
We feel it is good to get the perspective on something through people who are actually living through it.
Both of the ladies were happy to share their stories in the hope of creating further awareness and letting other women know they are not alone. They also remain hopeful a cure will one day be found for this condition.
Please see Endometriosis Awareness Month:
2. Endometriosis Awareness Month (with illustrative examples)
“March is Endometriosis Awareness Month. Endometriosis is an inflammatory condition where endometrial tissue (tissue similar to the lining of the uterus) grows outside of the uterus”.
“Endometriosis is classified into one of four stages (I-minimal, II-mild, III-moderate, and IV-severe) depending on location, extent, and depth of endometriosis implants; presence and severity of adhesions; and presence and size of ovarian endometriomas (Figure 2)”.
“Endometriosis causes endometrial tissue, which usually lines the uterus, to develop outside of the uterus. It can cause chronic pain, heavy or irregular periods, and infertility. Some people also report weight gain and bloating”.
“An individual who has endometriosis will not automatically be deemed disabled. Individuals wishing to access disability benefits will be assessed against the criteria outlined by the Department for Work and Pensions. Applicants will be independently assessed to see if they qualify for disability benefits”. (17 Jul 2017).
“Endometriosis UK Endometriosis Action Month Northern Ireland Assembly event … Secure your place in the London Landmarks Half Marathon 2022 in support of ”…
“Endometriosis Awareness takes place across the globe during the month of March with a mission to raise awareness of a disease. According to Endometriosis.com”, …
“Endometriosis affects an estimated 1 in 10 women – that’s about 200 … Congratulations to the recipients of the 2022 EndoMarch Hero of the Year Award”:
3. ME Mel Story
Hey, My name is Mel, I’m 31 years old and I’ve been fighting for my health and for answers since I was 15 years old! In the beginning, I knew something was different, I would often compare myself to my friends and their periods, I spent most of my school years petrified when it was the time of the month! My main symptoms at the time were chronic pain, irregular bleeding, spotting, painful heavy periods.
After seeking help from my GP I was put on the pill. I stayed on it despite the ongoing symptoms for 8 years before I began trying for a family. During this time I spent numerous years back and forth to the GP and to the hospital to have tests and over the years I had several misdiagnoses- IBS, appendicitis, pelvic inflammatory disease, an ovarian syndrome to name a few. After having my first son, within a few months the symptoms began to creep back up, I decided not to go back onto the pill to allow my body to have a rest from the hormones. And I have not been back on it since.
I later went on to have my second son but definitely struggled more and the symptoms and pain came back stronger and quicker! I feel very blessed to have my boys! I began doing research after a few hospital stays where I was admitted due to excruciating pain, I had heard the doctors mention “Endometriosis” and “She may have this” but nothing was ever investigated. Until I went for private surgery in June 2021, I had endometriosis confirmed and removed. When I received the news it was a bittersweet moment, I felt relieved that I had an answer but devastated that I was facing life with a chronic illness.
Since the surgery, unfortunately, I have not had any relief and I am having to continue on this uphill battle to get the help I need. I think the hardest part has been battling with medical professionals to be heard- medical gaslighting is real! The one bit of advice I would give to anyone who may be facing similar is to Trust Your Gut, you know your body best! Don’t give up and fight for the answers you deserve! Do your research, get a good support network around you and do what feels right for you.
Sending love and strength to all You can follow my endometriosis journey @memyselfand_endo
4. Gemski Dignum’s story
My Endo journey probably started as soon as my periods started at the age of 12, they were really heavy and painful, clots etc. But my mum suffered bad too so I thought this was normal.
Skip ahead a few years still heavy and painful periods continued. I met my then-husband and we tried to get pregnant, I had a laparoscopy done and they found I had specs of Endo (again nothing more was mentioned about this) and that I had polycystic ovaries which can cause fertility problems. (PCOS is small cysts on the ovaries stops the egg release).
In March 2002, I found I was pregnant (naturally against all odds) we tried again when our son was 2 years old but again failed to become pregnant.
Skip a few more years in 2019 my partner and I became pregnant only for me to miscarry. Oct 2020 I had severe abdominal pain and throwing up it wasn’t my period as I’d just finished it, I spent 4 days in hospital having scan after scan blood tests, only for me to be discharged and having to wait to see a gynaecologist who specialises in endo. I was given so much pain medication I ended up with gout in my foot so I couldn’t walk.
I saw the gynaecologist and he was so good he knew exactly what was going on and booked me in for an operation for Feb 2021 which was cancelled due to covid. Still struggling with pain I was in and out of work, then we were working from home which really helped as I could sit with my hot water bottle.
My next op was scheduled for March 2021 that was then cancelled as the surgeon was unavailable. So this was twice cancelled by now feeling depressed, angry and in pain, I pleaded and asked if there was anyone else, I said I don’t care if it’s a trained chimp.
They rescheduled for a third time on 16th April 2021, I was diagnosed with endo that day. I had a hysteroscopy and endometrial biopsy, I had adhesiolysis, treatment of endo and drainage of left ovarian endometrioma (chocolate cyst), my left ovary was stuck to the large part of the bowel and cut free.
They found endo in their words multiple deposits of endo on the posterior visceral peritoneum (inner layer which lines the abdominal organs) and the pelvic peritoneum in the pouch of Douglas (area between the uterus and rectum).
My periods after the op were a little better, I wasn’t getting out of bed to get in a warm bath and breathe through the pain, they were still heavy and painful though.
Moving on my periods have become heavier than normal and large clots the size of bars of soap are part of my monthly cycle. The pain is back to what it was before and it’s continuous it’s a dull ache, which often affects my inner thigh and can sometimes stop me whatever I am doing, I am back to using a hot water bottle and tens machine.
I have an appointment to see my gynaecologist again in April 2022 as my right ovary has shown to be stuck to my uterus.
Living with this every day affects me most days, it has huge impact on my weight, the way I feel and I’m lucky to have an understanding partner, most would have run a mile.
The pain it causes and disruption to someone’s life is awful.
Not enough research is done, and prescribing hormones and medications should not be the answer.
A lot of women are far worse than me, some have no children, no womb, or bowel, yet they still smile like me, hoping one day they will find something to cure this.
5. Final thoughts/YouTube video
We feel honoured that our friends shared their stories with us. We wanted to present an aspect of what it is like living with such a condition. The ladies who shared with us wanted to spread further awareness and let other people who live with this condition they are not alone.