Real Stories: Jill

Interviewed by Kayleigh & Sophie via Zoom, February 2021

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. They assumed Jill was pregnant and having a miscarriage. She knew she wasn’t and told them so and was taken down to theatre where they stitched up the laceration.

The next day a lady came to see her. This same lady was to become Jill’s consultant for the next 20 years. She informed her of the double cervix and, at a follow up appointment, Jill discussed how her periods had always been very painful and horrific from the age of 13 but that the GPs just prescribed painkillers.
The consultant did a laparoscopy and discovered what she described as the worst case of endometriosis she had seen in someone who was only 18 years of age.

Jill then went on to have 6 months of Sustanon steroids “which did nothing” followed by 6 months without any treatment before being given Zoladex for 6 months – which started working straight away. After her 6th injection, Jill said she felt it wasn’t working like it had been. A few weeks went by and she didn’t feel very well. Her husband bought a pregnancy test which came back positive. Jill went to see her consultant the next day and a scan revealed she was 5 weeks pregnant but she was told she would not carry the baby full term as her uterus was full of adhesions. She had many hospital visits and a couple of bleeds but had her first child delivered by caesarean at 37 weeks. 3 years later, she had her second child.
“I always feel really sorry for people when their Endo has caused them to be infertile, as I risked getting pregnant twice after being told I’d never get pregnant and it happened both times. I feel truly blessed having been able to get pregnant.”

Jill believed her symptoms were at their best for around 5 years after having her children, however she was then back and forth to her consultant for years trying to manage the pain and had ovarian cysts removed. In March 2020, Jill experienced terrible pain in her left side but due to COVID she couldn’t get a scan to see if it was another cyst. When she eventually got a scan in July 2020 it revealed an 8cm mass on her left ovary. At that point, she was sent for a blood test to check her CA125.
“I got a text message the next morning – you have a raised CA125 reading – I have referred you urgently to Gynae.” The 2-week rule to be seen urgently was now 4 weeks due to COVID so Jill paid to see a Gynaecology surgeon where scans revealed it looked like both ovaries were covered in endometriosis and both were enlarged with a big cyst on the left one.
It took a lot of battling with herself and talking to a lot of people before her husband said “you’re struggling to keep something that’s not healthy you might as well have it all out” so she asked for a full hysterectomy. The surgeon suggested only removing her left ovary but it was Jill who pushed for the hysterectomy and oophorectomy – “I felt very unsupported making this decision”.
Jill was transferred into NHS care for her surgery. The surgery took 5 hours due to the endometriosis. When Jill was in hospital for her hysterectomy and oophorectomy, no one mentioned HRT to her. It was only because of her profession and access to information that Jill was able to educate herself before surgery and had made a choice to take HRT. However, when she asked her surgeon about this she was simply told: “let’s see how you get on and get in touch with your GP in 6 weeks!”
Jill insisted she would not leave until she had some HRT and waited until 8pm on her day of discharge to get this. She recalls that she was sent home with no information “it is no wonder so many women struggle when so many obstacles are put in front of them.”
Jill is taking HRT because she insisted on it and she is adamant that her recovery would not have gone so well without it!
She recognises that her energy levels aren’t so good, so she intends to ask for some testosterone. With the histology of her left ovary being inconclusive, she feels that no doctor seems to know if it is safe or not for her to take HRT – “I know it makes me feel better but there is a small risk of it causing issues but again I’ve had to take that risk on myself”.

When asked about how her quality of life before and after surgery compared, Jill responded that before she could never plan any trips as her periods were so disruptive. Since her hysterectomy she realises how bad her pain was and that she had just been putting up with it.

We asked what advice she has for other women going through a hysterectomy due to endometriosis: “Research research research everything before making your decision. In terms of HRT look at benefit over risk. The scaremongering around HRT is awful – it’s not right! Don’t be pushed around by any medics they don’t always know what is best for you and your lifestyle.
I was given a sick note for 6 weeks … there’s no way I could have gone back to work after 6 weeks! Emotionally, you’re not ready for it - people don’t realise how personal the surgery is to you. Finally, I think it would be really good if you could hook somebody up with somebody else that’s been through it, like a hysterectomy buddy to talk through your worries”