Industry Insights: Women’s health – Why more research and awareness is needed for Adenomyosis

In this latest article, Medical Affairs Senior Consultant, Kerry Harris highlights the need for more research and raising awareness of adenomyosis. She also discusses her own experiences with the condition after being diagnosed with it.

 Introduction

Many people will have heard of endometriosis and have some idea of the symptoms of the condition, but the same cannot be said for adenomyosis. This article / report is from the personal perspective of Medical Affairs Senior Consultant Kerry Harris due to her own experiences with the condition, as well as highlighting the need of why more research is needed into this condition and the importance of raising awareness.

 How does adenomyosis differ from endometriosis?

In endometriosis, endometrial-type tissue grows outside the uterus. In adenomyosis, abnormal tissue grows into the uterine muscle. They are different conditions but can both cause pelvic pain, unusual menstrual bleeding, and heavy periods. While endometriosis causes the tissue to grow outside the uterus, adenomyosis causes it to grow into the uterine muscle. A person can have both conditions at once.[1]

Kerry’s personal experience with adenomyosis and recent media highlights of the condition

Many women have never heard of adenomyosis before, and can often, if symptomatic have investigative tests for IBS, Crohn’s and in some cases bowel cancer due to similarities with some symptoms. I was first made aware of Adenomyosis following a diagnostic laparoscopy for endometriosis back in 2019 when my consultant informed me that she suspected that Adenomyosis was the cause of my symptoms.

I recently came across the Radio 5 Live Show of Naga Munchetty’s broadcast on Monday 22nd May 2023.[2] Listening to her story and stories of other women was an extremely emotional experience for me as the words they used to describe their pain and symptoms, along with the impact it has had on their lives very much resonated with my own story. My symptoms have been obvious to me for well over eight years now, however by listening to the stories of others and the information shared by specialists, I have now realised that my journey started long before.

Specialists in the area, Dr Elise Dallas (a women’s health GP) and Miss Elizabeth (Liza) Ball (a consultant gynecologist) spoke further about the symptoms and lack of awareness that Adenomyosis has amongst both HCPs and patients during the radio show with Naga.

What do adenomyosis symptoms look like?

Symptoms may include:

• Irregular Periods and heavy bleeding for prolonged durations (30 days or more with some women bleeding for a month at a time)
• Extreme Pain within the pelvis, back, hips and legs comparable to that of contractions in labour or sharp stabbing-like pains
• Pressure and swelling of the abdomen
• Tenderness of the stomach
• Anemia
• Pain during and or after intercourse
• Migraines

The importance of why the condition needs to be more widely medically known

If you are a doctor who has a reduced amount of knowledge and understanding of Adenomyosis, I urge you to listen to the broadcast to learn more about the common symptoms. Hear how it affects women’s lives, including those around them, and make this an area that you prioritise learning more about.

It is incredibly difficult for anyone to describe their pain, and most women (myself included here), are pushed to emotional breaking point, to convey that this is something that cannot be handled with paracetamol or ibuprofen.

If you are someone whose symptoms match those mentioned, who has been told for years that you are ‘just unlucky’, that ‘the pain and blood loss is normal’ that you should ‘just deal with it’ please don’t go unheard. Listen to other women’s stories and go to your doctor and request that you are referred to an appropriate specialist.

With no agreed guidance for doctors on diagnosis and management, it is clear that there is a massive gap in knowledge within this area of women’s health. Funding is needed to further research into this debilitating condition and alternative treatments to the coil for example, so that women are not made to feel that they are weak, that they have a low pain threshold or that it is in their heads. There is nothing normal about not being able to hug your children because you are frightened it will exacerbate the pain, being medicated each day to be able to just get through it, being floored physically when the contraction like pains occur, being constantly worried about leaking in public, having daily ongoing pain or being told that the symptoms are part of the female experience!

What my role as a Medical Affairs Recruitment Consultant has taught me

My role as a recruiter in medical affairs has enabled me to be aware of the responsibilities that MSLs, Medical Advisor and the wider medical team have within pharmaceutical companies to educate HCPs on specific illnesses. I value the work they do across all therapeutic areas to improve knowledge and awareness and respect the passion and motivation they have for improving patient care however the public.

Sometimes there are gaps in knowledge with the healthcare profession, this is one of them. The focus of building awareness should not just be to the health care professionals but also with the patients so that they can advocate for themselves. Educational activities to build awareness to both HCPs and women, needs to be improved.

Women need to be listened to and research needs to be invested in as currently the only way to 100% confirm diagnosis is after a woman has had a hysterectomy – this should not be the case. Methods of diagnosis need to be more accessible.

Conclusion

With the MHRA launching the Women’s Health Strategy last year, it aims to boost health and wellbeing for women and girls across the country.[3] I really hope that the strategy which is being implemented makes a difference and positively impacts change, so that girls and women in the future can be supported in the correct way. That they do not have to go through the same distress, frustration and anger as they do now to get their diagnosis and treatment, and that in time with new research, new methods will be discovered that don’t result in a woman having to have a hysterectomy.

I hope that by highlighting this condition, people (even if it is just one person) are now aware of Adenomyosis and that in some way this can help build awareness.

Sources

[1] Villines, Z., (2022), What is the difference between adenomyosis and endometriosis?, Medical News Today, URL: https://www.medicalnewstoday.com/articles/adenomyosis-vs-endometriosis

[2] Munchetty, N., (2023), Adenomyosis, BBC Radio 5 Live, URL: https://www.bbc.co.uk/programmes/m001m3vk

[3]Department of Health & Social Care, (2022), Policy paper – Women’s Health Strategy for England, GOV.UK, URL: https://www.gov.uk/government/publications/womens-health-strategy-for-england/womens-health-strategy-for-england#:~:text=This%20is%20a%2010%2Dyear,female%20participation%20in%20vital%20research.