We recently spoke to four very lovely and inspirational women over Zoom; Jill (UK), Rachel (UK), Rebekah (USA) and Vicki (UK). All kindly and bravely shared their personal experience in great detail of living with endometriosis, and how having a hysterectomy has worked out for them. One thing these women all have in common is their desire to raise awareness and pass on what they have learnt to help others. We have written up each of their stories in detail which you can find below.

Lots of women got in touch with us via our instagram page. We therefore emailed a short Q&A document to four other women which have been filled in and returned to us. You can read these below. Thank you to Amanda, Emma, Karen and Sarah for taking the time to be a part of our Endometriosis Real Stories section and helping us to raise awareness.

Tap on the names below to read the full interviews/Q&A's.

Jill had her hysterectomy at age 44 in November 2020, but her story began when she was just 18.
A trip to see her GP to enquire about going onto the pill resulted in a routine smear test being offered. Unbeknown to Jill and the GP, Jill actually had a double uterus, double cervix and a septum from the top of her uterus to the entrance of her vagina and, whilst carrying out the smear, the GP lacerated the septum with the speculum. Jill was sent home and told the bleeding should stop.
Jill went home and had a haemorrhage in the house before then being admitted to hospital...

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Rachel first started to experience Endometriosis symptoms when she was around 18 years old. For around 4 years, she was back and forth to her GP and misdiagnosed with IBS amongst many other things. “I lost all of my twenties to being in bed for most of the weekend as I spent the weekdays fighting the pain to get through my work and holding down a job but by the evenings and weekends I had nothing left to give.”

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For Rebekah, things happened extremely quickly from the onset of her Endometriosis symptoms and she was scheduled for surgery within 12 weeks. She described her initial pain as being like labour contraction pain and with that came abdominal bloating. It was a couple of months later before one particular episode made her reach out to her Gynaecologist. “I had this sharp stabbing sensation that was intensely painful about where my right ovary was, and I almost passed out from the pain. I couldn’t walk - it was crazy intense!”

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Vicki started off our chat by recalling that she had started her periods when still at primary school and only 10 years old. She recalls needing time off school due to the severity of the bleeding and pain.
At the age of 14, Vicki went onto the pill to try and help with these symptoms, but recounts how her pain became unbearable in her early twenties – “I was in a serious relationship. The pain was really bad both during and after sex and I would bleed with sex”.

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Please could you tell us a little about your experience with endometriosis and also surgical menopause?
I’ve always had a bad relationship with my reproductive system or ‘baby-making machine’ as I called it. My mom had issues when I was younger, so it may have been in my genes.
My lower abdominal pains, chronic fatigue, low mood, low libido, aching muscles, and all the other wonderful endo symptoms started whilst I was in the British Army (my early 20s). Not a great place to get colleagues and superiors to understand ‘women’s problems’ that were invisible. The doctor just kept saying I’d pulled a muscle and gave me ibuprofen. The trouble was I knew it was more than that it was too deep, but I got nowhere.

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Please could you tell us a little about your experience with endometriosis and also surgical menopause?
I was only diagnosed with endometriosis at 35 after thinking I was in early menopause. I had an ultrasound in the October, and an urgent referral for complex cysts. Consultant repeated ultrasound himself at my first appointment (turns out he was working at getting onto the BSGE list).
He highly suspected endo and sent me for an MRI. Results came in end of December, it turns out I had multiple endometriomas, severe endometriosis and adenomyosis. I was offered an TLH+BSO immediately! I should add that I had 3 children, husband had already had a vasectomy and I had been suffering with chronic fatigue for 5 years previous to this. My consultant was confident the fatigue was caused by the endometriosis. Up until all of this, I had suffered painful periods, IBS since my periods began, and since having my youngest, horrendous bleeding. However, I was under the impression, everyone had pain! I had even mentioned at the CFS/ME clinic that the fatigue had been worse around my period. Still, no one put 2 and 2 together. To be offered a way out of all of this with one operation felt like a blessing!

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Please could you tell us a little about your experience with endometriosis and also surgical menopause?
I had stage 4 endo so bad it included disease in every pelvic organ as well as diaphragm. I had unsuccessful surgery that left me worse off than I was. Endo debilitated me to the point I was bedridden. I finally found an endo specialist across the country who took my case. I had a 7.5-hour surgery with him (one of the worst cases he had seen.) My organs were in such bad shape, I had to get uterus cervix, fallopian tubes, appendix, right ovary and 1/4th of left ovary removed. All that in one surgery plus excision of the endometriosis. The 3/4 ovary that was left had to be dissected and reconstructed. He told me there was most likely some cells left over. 2 years later, I had that ovary removed due to very painful recurring cysts. I have not had pain since! Balancing hormones is tough, but it beats any day with endo.

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Please could you tell us a little about your experience with endometriosis and also surgical menopause?
I was diagnosed when I was 19 with Endometriosis. I then had 2 large Ovarian cysts removed when I was 22. I had a further 4 operations to remove cysts from my ovaries over the next 15 years. When I was in my late 30’s I had my ovaries removed. This put me into the menopause. I was given HRT and sent home to get on with it. Had no idea of the impact it would have on my life.

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