Real Stories: Vicki

Interviewed by Kayleigh via Phone, February 2021

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”. She described her pain at this time as being a deep pelvic pain and every day she would feel like she had cystitis with a constant burning pain in her bladder.

It wasn’t until Vicki was 22 – after years of suffering with unbearable pain and horrendous periods – that she was finally diagnosed with Endometriosis and it was lasered via laparoscopy.
The next ten years were very up and down for Vicki. She had times of feeling ok but always had really bad periods. She had further surgeries, including excision surgery in 2008 but the heavy bleeding, pain and extreme fatigue continued.

In 2014, Vicki had another laparoscopy by a well-known endometriosis specialist. During her laparoscopy, he found endometriosis, adenomyosis and fibroids. It was at this time that Vicki was put on injections to induce a temporary medical menopause to stop the endometriosis tissue from growing and to help reduce the symptoms.

The injections didn’t really help and made Vicki feel depressed and she suffered with terrible insomnia. She’d already explored all other options including the pill and coil so in 2018, at 35 years of age, Vicki had a hysterectomy but kept her ovaries. Her consultant felt this was the right choice and described her as having a ‘toxic uterus’.

Vicki experienced menopausal type symptoms following her hysterectomy despite still having her ovaries. Blood tests revealed that her oestrogen levels were on the lower side. I asked if anyone had ever talked to her about the possibility of an early menopause due to the blood supply being affected following the removal of her uterus: “I was told that my ovaries would probably shut down in 5 years – that’s it”. She recalls suffering with body aches, fatigue, brain fog, insomnia and hot flushes.
Vicki went to the Newson Health clinic and was prescribed oestrogen gel to help with her symptoms.

However, Vicki’s pain got increasingly worse over the next few years despite her hysterectomy. When asked how this impacted her mental health, she said “at times I was made to feel like the pain and my symptoms were all in my head. I have really suffered with depression and anxiety and at times even felt suicidal”.
With the support of her family, she eventually chose to go private and, in October 2020, she had an appointment with a Consultant Gynaecologist in the West Midlands who specialises in laparoscopic surgery and endometriosis.
It was at this appointment that Vicki felt like she was really being listened to for the first time when describing her pain and other symptoms: “it was so nice to feel that my mental health was not questioned” Vicki had an MRI which revealed that she had deep infiltrating endometriosis and surgery was booked in for January 2021.

The surgery revealed deep infiltrating endometriosis on her utero sacral ligaments, vaginal vault, pelvic wall, pouch of douglas and left inguinal ring. Her bowel was attached to her pelvic wall and her left ovary was tangled up in her bowel.
Although the severity of the findings was truly shocking, with it came some form of relief: after so long worrying and fighting, none of this was in her head as she’d be made to feel or believe in the many years of fighting to be heard.
I ended our chat by asking Vicki what advice she would like to pass on to other women considering a hysterectomy for endometriosis.
“Do your own research, think carefully about children too – are you sure you don’t want them, are you sure you don’t want anymore? Make sure that any surgery is done under a BSGE accredited surgeon.
With regards to having a hysterectomy, ask questions beforehand about menopause and what to expect even if your ovaries are being left, and ask for follow up care following surgery – don’t expect it to be automatically provided.”

Vicki is very passionate about raising awareness and using her own experience to help others. You can find her on instagram @chronic_pain_unfiltered