March 31, 2023
7 Minutes

Living with Endometriosis: The Harsh Reality Women Face Today

Living with Endometriosis: The Harsh Reality Women Face Today
Written by
Dr Fatema Mustansir Dawoodbhoy
Amilis makes fertility digestible, accessible, and affordable to help you take charge of your reproductive health and live on your own timeline.

In an eggshell...

As we reach the end of endometriosis awareness month, we’re sharing Ayesha’s brave journey with endometriosis, the difficulties she’s faced trying to get a diagnosis, the medical gaslighting she’s experienced from a young age, and how her employee benefits finally resulted in her getting some real help.

Aeysha came to Amilis wanting to learn more about preserving her fertility through egg freezing after discovering she has endometriosis. Like many others, she had no idea where to start or how to find the right doctor. After hearing her story, we just had to share it to raise awareness about the shocking amount of time it can take to get a diagnosis, and how employers can have a big impact by providing the right benefits.

Let’s start from the top, shall we?

Ayesha’s been struggling with her period from the age of 11, and it was heavy from the get-go. She regularly bled through her clothes, despite adequate period pads, and experienced painful cramping. After 2 years of suffering in silence, she turned to her GP for some help.

As a young girl, Ayesha’s symptoms were dismissed because her periods were “probably just settling” and that it will "balance itself out over the next few years". As those years passed by and nothing changed, she decided to go back to the GP for some real help only to be offered contraceptives as the solution. She didn’t feel comfortable taking hormones to stop her period, so Ayesha was sent packing with no real diagnosis or solution, yet again.

As the years went by, her periods started exhibiting more extreme symptoms: diarrhoea, excruciating abdominal pain, vomiting and bloating, to the point where she felt like she was going to pop! With these new symptoms, the doctors were adamant it was an issue of the bowel and conducted a colonoscopy. Surprise surprise… it flagged nothing. As a last-ditch resort to help her improve her quality of life, she gave in and started on a combined oral contraceptive pill.

You might think this is where things got better for Ayesha, but sadly, the pill caused her to experience intense headaches, weight gain and severe mood changes. After trying different options, she settled on the progesterone-only pill. It did succeed in stopping her periods, but in return, she began losing big clumps of her hair. Ayesha powered through for 2 years on the pill, but to no avail, her menstrual cycle began to change and all her awful periods symptoms restarted.

How private medical insurance changed everything

This brings us to 2022, when Ayesha was working in a company that provided her with private medical insurance. With her evolving symptoms, she wanted to take advantage of this benefit and booked in an appointment to see a private doctor. She had suspicions that she might be struggling with polycystic ovarian syndrome (PCOS) and so had a trans-vaginal ultrasound to investigate. Alas, no signs of fertility conditions were found and instead of conducting further investigations, she was told to lose 10kgs (despite being of a health weight) and to try the intrauterine system (a progesterone coil inserted and left in the uterus). Neither a good solution for her.

In 2023, Ayesha’s symptoms now started to present outside of her period window. She found fresh red blood in her stool and an urgency to go to the toilet. After a stint in A&E for what she described as her worst period ever, she finally went back to the GP and demanded a private endometriosis specialist referral. Two months later, she had an MRI scan with contrast (MRI’s have a higher accuracy rate in picking up endometriosis lesions in the body).

Finally, after 14 years of struggling, she received a diagnosis of infiltrating endometriosis of the vagina and bowel, along with endometriosis cysts in her ovaries. This diagnosis changed her life and gave her some clarity that she was not being “hysterical”. To make things even worse, the doctors were aware all this time that Ayesha’s mum has an endometriosis diagnosis herself, making Ayesha at an increased likelihood of having endometriosis too.

Did you know hysterical comes from the greek work to describe the uterus? Pfft...

If it had not been for Ayesha’s sheer drive to fight for a diagnosis, she would have continued to struggle with these excruciating symptoms for even longer. She’s also incredibly grateful for the private medical insurance provided by her company that led to her getting more support and help from the right specialists. She is now working closely with her endometriosis specialist to plan her excision surgery to remove the extra endometriosis tissue and cysts in her body. She is learning how to navigate living and working with a chronic condition that has a significant impact on her life.

How endometriosis affects Ayesha’s everyday life and work

Ayesha has always lived in fear of her periods as they dictated her life - planning dates, hangouts, and getaways all around her cycle. Whenever she did make plans, there was always an underlying anxiety about cancelling her commitments in case her periods got in the way. Her life before the diagnosis felt isolating as people had misconceptions about what she was actually experiencing.

Since receiving her diagnosis, Ayesha feels empowered to educate and explain to others how her symptoms are related to endometriosis and how it is affecting her life. When starting work, she was thankful for the covid work-from-home policy as it allowed her a safe place to adjust her schedule to accommodate her debilitating symptoms. However, at the back of her mind, she has a nagging worry about her career progression. How is she going to be able to keep up with this face-paced lifestyle? Does she leave her job? Pick a new career? Questions that others without endometriosis would never have to consider .

Fortunately for Ayesha, she has an understanding and supportive manager who gave her the courage to speak up and voice her struggles.

How endometriosis affects Ayesha's fertility

In Ayesha's case, since she has endometrial cysts in both her ovaries (endometriomas), the surgery to remove the endometrial tissue will also involve removing the cysts from her ovaries. The implication of cysts removal is a potential reduction in her ovarian reserve (number of eggs in the ovaries) which can affect her future fertility. In some cases, removing cysts from both ovaries can trigger early menopause. Her doctor suggested Ayesha consider egg freezing before the surgery.

Ayesha's mother struggled with her fertility and only conceived her through IVF, so Ayesha didn't take this suggestion lightly. The cost was initially a big deterrent for Ayesha, but over time, she understood that egg freezing would offer her security for future motherhood. But this was a whole new world to navigate. There are so many fertility clinics in a sea of fertility specialists. On a regular workday evening, during Ayesha's google dive into eggs freezing, she came across Amilis!

How Amilis has helped Ayesha

When I found Amilis on google, my first thought was, this is too good to be true. Without the platform, I would have really struggled to find the right doctor and clinic without spending thousands of pounds. The personal approach Amilis offered me made such a difference to my experience.

Amilis’s clinic platform popped up whilst Ayesha was researching about egg freezing. Not long after, one of the Amilis founders, Yasmin, got in touch with Ayesha and guided her to the right clinics based on her preferences. Yasmin recommended specialist doctors based on what would best fit Ayesha’s needs for egg freezing while having endometriosis. Ayesha was able to chat with different fertility consultants, all for free, via the Amilis platform and finally decide on a clinic!

It was such a privilege to interview Ayesha and get a first-hand understanding of the difficulties endometriosis survivors face on a daily basis. We hope her story sheds more light on this under-researched and under-advocated chronic condition. For other endometriosis survivors out there - know you are not alone! Endometriosis diagnosis and treatment have been moving at a snail's pace for years and this calls for an urgent need to treat the disease with more seriousness.

Amilis - who are we?

Here at Amilis, we are looking to break down the barriers to information women struggle to find on fertility - we are talking stats, costs and everything else the internet hides from us. You can find a clinic we have partnered with on our website and through us secure a free initial consultation with them.

Written by
Dr Fatema Mustansir Dawoodbhoy

Academic Foundation Doctor at Barts Health NHS Trust