An Uncommon Cause:Adenomyosis

The causes of infertility are varied and can also be missed or mildly diagnosed. 

Before our 3rd IVF treatment I was not particularly diagnosed as infertile but was classed as unknown cause and prescribed clomid, an hormone stimulating drug to stimulate my ovaries to produce more eggs. 

This  did not work and so the process of fertility treatment started with no specific diagnosis.

I was diagnosed with Rheumatoid Arthritis, and always felt this may have an impact on why we were not getting pregnant. We were fortunate enough to find a clinic that looked after our particular circumstances. 

Some women may not have a specific diagnosis but will have to go through the IVF process and be successful. While others may have several attempts without success. 

This was the experience Gabrielle Union had,  in an interview with the stylist she  talked about how she went undiagnosed through multiple rounds of IVF, with different leading doctors.

She suffered from a condition called adenomyosis

According to the NHS, this is a condition where the cells of the lining of the womb are found in the muscles wall of the womb (myometrium). The condition affects 1 in 10 women.

The most common symptoms are 

Heavy or painful periods,

Premenstrual pelvic pain. 

Feeling of heavy/discomfort in the pelvic.

Less common symptoms are:

Painful sexual intercross.

Pain related to bowel movement.

It can occur in women who still have periods but are common in women aged 40-50 and in women who have had children.

The cause of adenomyosis is unknown but It is believed that it may be related to genes, hormones and the immune system. 

Adenomyosis will not present itself as other causes of Infertility and about a third of women will not have any symptoms. 

It is not routinely diagnosed and may be found during a routine scan. Hence the reason lots of women may go undiagnosed. 

Like other causes of infertility, this is a condition which affects several areas of a woman’s life, their emotional well-being, relationships, and daily routines. It is disheartening to know that this is only coincidentally found during a routine scan.

Reason for delay in diagnosis is due to the fact that some women have no symptoms at all, hence a routine scan may be the first indication of a problem. 

Women have different symptoms and these symptoms may be due to other illnesses as well,  such as (pelvic inflammatory disease or irritable bowel syndrome).

The similarities to this illness and other diseases means that many women suffer infertility for years without being diagnosed, and diagnosis may be late in coming at a time when many have given up hope or are in menopause.

For Ms Union, her doctor delves into her past as a young woman asking lots of questions about her menstrual cycle, which led to her diagnosis. 

What to do if you suspect or have any of the symptoms above.

Speak to your doctor about your experiences with your periods, request for an MRI scan (magnetic resonance imaging (MRI), this will produce a picture of the inside of your body

Available treatments 

Get the details about the available treatment before making a decision. 

The delay in diagnosis unfortunately has led to lack of treatment specific to the illness. the symptoms rather than causes can be treated with prescription for heavy or painful periods. 

  • If you suffer from  heavy or painful periods, you may be prescribed non hormonal medicines like tranexamic acid and mefanamic acid).

  • Contraceptive pills to stop bleeding.

  • Induce false menopause by injection, causing her lining of three women to shrink.( No usually for long term use).

  • Uterine artery embolisation – injecting tiny particles into the blood vessels, the aim is to cut off the blood supply to the adenomyosis. This is less invasive and may help to prevent infertility. But symptoms may return in future.

In Gabieller’s experience, she was diagnosed after several failed IVFs and only a change of doctor and detailed investigation led to the correct diagnosis. 

Her doctor was honest and after explaining the difficulty she’s faced, prescribed Lupron.

Although Lupron gives a 30% chance of pregnancy, . they decided against it in favour of surrogacy and are now the happy parent to a beautiful baby girl.

Next Step.

Remain persistent with your doctor, you need to be responsible for your health and well being so do not settle for a simple explanation if you have failed after several attempts. 

Do not be discouraged if your doctor dismissed your concerns. Ask for  a second opinion.

The party parliamentary group on women’s health revealed a lack of awareness on what is considered a ‘normal menstruation’ may that indicates a more serious issue.

  • Explore other options earlier on in your fertility journey and avoid delays which may lead to difficulties later on. 

Do all that is within your capabilities to get pregnant and hope for a successful end. 

I hope you have been better informed by this and inspired by the story of Gabrielle Union not to give up.

 If you suspect your symptoms are those described above you can find more from the adenomyosis association’s website at www.adenomysisassociation.org

For more help and advice contact the NHS choice at www.nhs.uk

Your partner in hope

D’Ebi

Related content 

https://faithfulwait.com/2020/03/10/surrogacy-finding-a-surrogate/

https://faithfulwait.com/2020/02/29/surrogacy-i-call-it-a-helping-hand/

https://faithfulwait.com/2019/06/13/causes-of-infertility-in-men/

https://faithfulwait.com/2019/01/20/whatever-you-do-dont-stop-trying/

https://faithfulwait.com/2018/08/13/single-women-and-ivf/