TWO woman from Basingstoke have shared their endometriosis stories, after the results of a survey by MPs found that care for those with the condition is in desperate need of improvement.
Endometriosis is an often debilitating condition which affects one in 10 women in the UK.
Symptoms can include severe pain, heavy periods and infertility.
An All-Party Political Group inquiry with more than 10,000 participants found that 58 per cent of people visited their GP more than 10 times before diagnosis and 53 per cent attended an A&E unit with symptoms prior to diagnosis.
The majority of respondents also reference several shared knock-on effects of the condition, including negative impact on their their mental health, education and careers, with 35 per cent experiencing reduced income due to endometriosis.
Furthermore, approximately 90 per cent said they would have liked access to psychological support but were never offered it.
Diana Murungi, 35, from Basingstoke experienced painful periods from the age of 14 and it took seven years for her to finally be diagnosed with endometriosis. Each time she made a GP appointment, she was issued with antibiotics to address her complaints of stomach pain and high temperatures.
Diana realised that there may be a problem when she and husband Moses decided they wanted to start a family and she stopped taking the contraceptive pill - only to be faced with a sever worsening in period pain.
Diana said: "I went back to the doctors and they started to investigate why I was experiencing so much pain.
“We started trying for a family and I conceived naturally at the end of 2011 but had a miscarriage. I fell pregnant again at the start of 2012 but had another miscarriage. I continued to suffer with the pain and the doctor sent me to a gynaecologist and I was diagnosed with endometriosis, cysts on my ovaries and fibroids, which are common in black women," said Diana.
“We continued trying but we weren’t successful. Our doctor referred us for fertility treatment. I was naive and thought I’d have fertility treatment and I’d get a baby and it would be all done. I had no idea that it would be an emotional and painful journey."
After doing some research, Diana met with doctors at Wessex Fertility Clinic in Southampton, where she began IVF treatment. She was excited to fall pregnant, but sadly lost this baby too.
"I felt very alone; I was in a lonely and dark place. I had to book time off work. It was a very, very painful time. All my hopes and dreams of having a baby had crashed.
“I didn’t know what to do. I didn’t know if we’d ever have the baby we longed and dreamed of. I wasn’t sure I could do it again."
However, after taking time to recover, the couple decided to try again, as they still had embryos in storage at the clinic.
Unfortunately, Diana experienced a further miscarriage. After so many obstacles, Diana's hope of starting a family felt completely lost.
“My endometriosis was also getting worse," she said.
"Whilst I’d been seeing the fertility consultant I was also seeing a consultant to treat my fibroids and endometriosis.
"He sensitively explained that the only way I would have relief would be if I stopped ovulating and to have my ovaries and uterus removed. It felt like such a big decision."
Despite undergoing surgery and a number of further health complications, at the start of 2019 Diana was ready for another embryo transfer, and this time it was successful.
"At the five week scan we saw the heartbeat and I knew this was our baby," recalls Diana.
On November 1 2019, Diana gave birth to a baby girl who they called Siima, meaning thankful.
“My advice to anyone starting IVF or considering fertility treatment is read and research, and make sure you have people close by to support and encourage you as IVF can be a very painful journey. Find a clinic that communicates well with you. Even after the losses, Wessex Fertility was there, helping me come to terms with it," said Diana.
24-year-old NHS administrator Fionnula Finan, also from Basingstoke, met partner Jack Voller six years ago, and fell pregnant while on the contraceptive pill.
Unfortunately, the pregnancy resulted in miscarriage, but left the couple keen to start a family.
“After I miscarried, it left Jack and I wondering what it would have been like to have a baby, so in 2015 we decided that I would stop taking the contraceptive pill and try for a family," said Fionnula.
“After a year of trying we visited our GP who referred me to a gynaecologist. I was then referred to a fertility consultant who provided treatment to help me ovulate, but it was unsuccessful.
"Following four years of lots of tests, I was eventually diagnosed with polycystic ovaries and endometriosis."
“In December 2019, I was referred for IVF by my GP. We qualified for NHS funded IVF and decided that Wessex Fertility was the best clinic for us.
“On 20th March, just before the clinic closed, my eggs were collected. I was one of the last patients to have my eggs taken and frozen.
“I felt really sad for us but also guilty that I was feeling sad at such an uncertain time when there was a pandemic and people were dying. I really felt like I was grieving as we were so close to becoming parents. I experienced panic attacks as working at the hospital and being on the frontline was really overwhelming at times.
“But I focused on the fact that we had embryos frozen and some were really good quality. It really was a bittersweet time.
“As soon as the clinic reopened I was very honoured to be the first patient to have my embryos transferred and our baby is due on 10 February 2021.”
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