Endometriosis is a condition whereby tissue, similar to the lining of the womb, starts to grow in other places of the body such as the ovaries, fallopian tubes or even the bladder and bowels. It is a long-term condition which affects 1 in 10 women in the UK.
Endometriosis can cause infertility through a distorted or inflamed pelvis, adhesions, altered immune system, scarred fallopian tubes, changes in the hormonal environment of the eggs, impaired implantation of a pregnancy, and altered egg quality.
It is estimated that women with Endometriosis have a 30-50% chance of being infertile.
The NICE ‘Clinical Guideline: Fertility problems: Assessment and Treatment [CG156]’ states that the NHS should “offer an earlier referral for specialist consultation to discuss the options for attempting conception, further assessment and appropriate treatment where: the woman is aged 36 years or over; there is a known clinical cause of infertility [such as endometriosis] or a history of predisposing factors for infertility”.
Each treatment, or need for treatment, is then decided on an individual basis.
In 2020, the All Party Parliamentary Group (APPG) surveyed 10,000+ people with Endometriosis and found that: 58% of respondents would have liked access to fertility treatment, but were not offered it. Also, only 45% of those who had accessed or tried to access fertility services got an appointment within 6 months and 20% of those who had used fertility services had paid privately because they were not offered NHS treatment.
This is the story of three women and their fertility journeys with Endometriosis.
Michaela Abenson
Michaela Abenson, 28, has suffered from Endometriosis since age 12. However it wasn’t until her first a laparoscopy and an MRI and at age 18, that she was finally diagnosed with Endometriosis in her bladder, bowel and peritoneum. Since then, Abenson has had 8 excision surgeries, been prescribed multiple pain medication and had the menopause induced twice.
When it comes to fertility, Abenson said: “I always knew I wanted a big family. I began trying to get pregnant straight after my wedding at age 19, my husband and knew we had to try now or it may never happen.”
However, Abenson is now a mother-of-two. “I Conceived my first child after my 4th excision surgery, I couldn’t get pregnant due to the endo and luckily once they removed it I fell pregnant," said Abenson. "Sadly, the endo grew back (or wasn’t removed properly in the first place) I stopped ovulating and had to have fertility treatment. By some miracle I fell pregnant 5 and a half years later.”
“My first pregnancy was great up until the last trimester when I had to take pain medication and be monitored. My second pregnancy I had hyperemsis and awful pain, I spent a lot of time in hospital. I gave birth at 32 weeks due to placenta abruption, both myself and the baby ended upon high dependency unit. After this I was told I wouldn’t survive another birth", Abenson explained.
At the beginning of 2021, Abenson had a full hysterectomy removing her uterus, ovaries, cervix and fallopian tubes.This was an emergency procedure due to her uterus being badly damaged from surgery, pregnancy, Endometriosis, Adeno-associated viruses and adhesions. Abenson was not offered egg freezing before this surgery.
“I fully believe I should have been offered to freeze my eggs," said Abenson The physiological pain of a hysterectomy is extremely tough because it is so final. I dreamed of having a sister and told myself when I was older I’d make sure my daughter had a sister and my sons had brothers. I had to let go of this dream however had I frozen my eggs I could still follow this dream.”
Abenson concluded: “I know how lucky I am to have my two miracles. However, I had to have them at a young age because I knew it was thinly chance I had. I feel like the option of egg freezing would have allowed me to have kids In my own time.”
“I looked into freezing my eggs privately, as that was the only option, and it was too expensive. Sadly we couldn’t afford to go ahead with it", she said.
Abenson's blog: PrettyInPain
Abenson's Twitter: https://twitter.com/MichaelaAbens0n
Stacey Davies
Stacey Davies, 35, was diagnosed with Endometriosis at aged 34. She has stage 4, deep infiltrating, Endometriosis in the bowel, ovary, diaphragm, abdomen wall and recto-vaginal. Davies also has a tilted uterus as a result of lesions.
After her diagnosis, Davies said her NHS Endometriosis Consultant asked what her priorities were. “He said I had to choose between treating the disease or prioritising fertility. I opted for fertility which means my Endometriosis has been left and my symptoms are not under control. I am currently putting my own health at risk because fertility is my priority", Davies said.
“Egg freezing hasn't been mentioned to me yet but we are exploring IVF options," she explained. "It's not straight forward as the hormones you need to take for IVF really exacerbate Endo which is a real risk as mine is deep infiltrating so could result in bowel perforation which is life threatening. We are exploring natural IVF currently to try and balance my health with trying to conceive but this is all privately as the NHS have declined to fund me because I've technically been pregnant with the Ectopic last year.”
Davies was offered IVF on the NHS however, due to Endometriosis, Davies experienced an ectopic pregnancy, in which a fertilised egg implants itself outside of the womb; usually in the fallopian tubes. “I was advised to wait the standard 1 year before inventions started but when we fell pregnant with the ectopic they've said the clock needs to start again. With all the waiting, by the time they speak to me again, I’ll be almost 40", Davies said.
She further explained: “The NHS Fertility Consultant has challenged this and raised it with the GMC as the clock doesn’t restart for a miscarriage before 12weeks so seems unbalanced to happen for an ectopic.”
Davies says that whilst the treatments the NHS offer are good, “the criteria which the NHS currently works to is actually quite dangerous to people's mental health”. She also said the trauma caused her to be diagnosed with “PTSD and a very serious bout of depression”.
When asked what different fertility options should have been available to her, Davies felt she should have been offered egg freezing: “If my eggs had been frozen this would have reduced my stress levels and anxiety hugely whilst letting me focus on healing and treating my body before the disease spread any further.”
Davies' Instagram: @steppingwithendo
Rhiannon Hurll
Rhiannnon Hurll firsts started getting Endometriosis symptoms at age 11. She had laparoscopy surgery that year, then at age 13 she had an IUD inserted. She then had another laparoscopy surgery at age 14, at age 16 she had a cystoscopy, a hydro distension and a catheter fitted. At age 18, after a third laparoscopy surgery, she was finally diagnosed with Endometriosis.
For Hurll the focus has never been on fertility: “My treatments have been about trying to get rid of the pain, that’s been the main focus for me because the daily pain was excruciating.”
But with the diagnosis came new information on her fertility. “I never really thought about having children,” said Hurll. “But suddenly I was being told I would have to start trying soon or I might not be able to have them and when that choice was taken from me I wanted to have options.”
“IVF is great if you want to get pregnant now but I don’t, but at the same time I do worry about what my fertility might be like later,” Hurll said. “There is stress around the ideas of ‘what if I don’t find someone in time?’ and ‘I need to start getting pregnant soon.’ It’s about the time pressure. Which is also unfair to put on a partner.”
Hurll recently started a petition to ‘fund an NHS scheme to offer egg freezing to women diagnosed with Endometriosis.’ The petition gained over 41,000 signatures. After starting the petition she gained a lot of knowledge about fertility and Endometriosis so she decided to look into the process of egg freezing herself and has been vlogging the experience on her Youtube channel.
The first appointment was to assess her Endometriosis and see what her options were. “So first one, which I thought was the most common, is freezing your eggs,” she said. “However she said she’s had a lot of evidence of woman that freeze their eggs, they may not freeze enough eggs so once they’re unfrozen they don’t work and they’re not getting pregnant.”
Hurll was told the safest option is to freeze embryos: “But that involves sperm, which means I’d have to find a sperm donor and that scares me so much. It’s a scary thought and I don’t think I’m mentally mature enough for that right now”
“They only keep them for 10 years, so if I froze them now they would only keep them until I was 31. But it all depends on how many eggs I have left… If I did freeze them now and I did get to 31 and I didn’t have a partner yet, I could then make embryos with a sperm donor and freeze them again", she explained.
This is only the first step of a long and intricate process for Hurll. The process also depends on her egg count which is determined through screening blood tests. “I came off the call and just cried," she said. "Because it’s so much to think about, when you’re in a relationship and you’re going through it you’ve got each other and yes I have my friends and family but it’s talking about having a baby and I’m alone.”
Hurll estimates that the process of freezing her eggs could cost between £8,000 and £10,000. “It’s made me realise there are a lot of options, it’s just quite overwhelming", Hurll said.
Davies, Abenson and Hurll have all expressed a preference to have their eggs frozen however the NHS does not offer women who are diagnosed with Endometriosis egg freezing. Hurll feels this is “100% about lack of awareness and research” for Endometriosis.
Hurll's Instagram: @rhiannonhurll
Hurll's youtube channel: https://www.youtube.com/@Rhiannonhurll
For information and support on Endometriosis: https://www.endometriosis-uk.org
Follow @Femi.Listen on Instagram for more!
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