Making the Difficult Decision to Step Away From Fertility Treatment

A columnist with RRMS and PCOS decides to focus on pain management

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by Beth Ullah |

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Ten years ago, my husband and I lost our twin girls during my 18th week of pregnancy.

In some ways, it feels as though this decade has flown by in the blink of an eye, but in others, it feels as though an eternity has passed.

Several years before I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2016, I was diagnosed with polycystic ovary syndrome (PCOS), a chronic hormonal disorder.

I remember my general practitioner telling me that I was unlikely to ever get pregnant naturally, but the twins disproved that theory.

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Since then, I’ve known that starting a family wouldn’t be simple for my husband and me. I’ve always been aware that life is rarely simple, but prior to my MS diagnosis, I significantly underestimated how complex our road to parenthood would be.

My time of the month has always been painful at best and pure agony at worst. Medical management has ranged from doctors saying, “Well, periods do hurt; just take over-the-counter painkillers,” to them prescribing heavier pain medication. MS added fuel to the fire. My period pain would exacerbate my worst MS symptoms, including body-wide nerve pain and limited mobility, sometimes preventing me from walking.

A close-up photo shows one large candle with two wicks and three smaller candles with one wick each. All five flames are lit, and the room is dark.

Five flames for babies lost too soon. (Photo by Beth Shorthouse-Ullah)

Something else

After experiencing three early miscarriages following the loss of our twins, I was referred to specialists for fertility help. When I met the consultant in 2019, I was faced with the question of whether I wanted to focus on fertility or period and pain management, as they were opposite paths.

This was when a dark horse arrived in the form of potential endometriosis. PCOS and endometriosis have some overlapping symptoms, but the severity of my pain and the heaviness of my period suggested that something else was going on.

Since I was adamant about trying everything I could to get pregnant, despite the agony I experienced monthly, there was no need to investigate potential endometriosis. A proper diagnosis would require surgery, and my doctors explained that pregnancy can sometimes alleviate endo symptoms.

When I wrote about the conflicts I faced due to fertility issues and MS last November, I’d been on fertility treatment for a year, to no avail. My husband and I were referred to an in vitro fertilization (IVF) specialist, but then had to grapple with the potential impact of IVF on my body.

Another aspect of our decision was the monthly torture I was experiencing, as my periods sometimes lasted 10 days or more. This had a significant impact on my mental health and was wearing me down, along with my MS symptoms.

We slowly came to the heart-wrenching decision that the hormonal changes and the effect of medications on my body would be too great, so we decided to pursue other routes to parenthood. Living with so much pain wasn’t sustainable for me. Although it was a difficult decision, stepping back from fertility treatment gave us clarity.

Pressing pause on pain and periods

This past April, I had the Mirena hormonal intrauterine device fitted. The coil was supposed to regulate my periods, make them easier and less painful, and mitigate any PCOS and endometriosis symptoms. However, because it’s a form of birth control, I also had to come to terms with the fact that I am no longer able to conceive a child, at least not in the short term.

I was skeptical about the Mirena, as I’ve never had any success with hormonal management. Yet, magically, for the first time in 20 years, I’m not only pain-free, but also period-free. I feel a lightness I never expected.

I was scheduled to have exploratory surgery to confirm the endometriosis diagnosis. While the scientist in me would very much like confirmation, given my newfound relief, I couldn’t help but wonder, is it worth putting myself through the pain of surgery for an answer to a problem that’s now been solved? It didn’t take much thought to answer with a resounding “No.” So, at least for now, I’m leaving it be.

Taking a step back from fertility treatment has been the blessing in disguise I didn’t know I needed. The truth is that it wasn’t possible for me to make rational decisions while living with so much pain. I don’t know what my future holds when it comes to children, but for now, I’m at peace with that.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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