Progress Isn’t Always a Straight Line: Struggles with Managing Endometriosis Symptoms

Jessica has endometriosis, and Chris is her partner. Together, they battle endometriosis as a team. But that battle isn’t always straightforward, and sometimes symptoms can flare-up and life is put back on hold. Below they discuss a recent difficult time in Jessica’s endometriosis journey.

Jessica, can you describe your recent struggle with your endo symptoms?

From Jessica: These symptoms, to a degree, have always been with me, and I’ve kept them at bay for most of my life, but recently, I seem to have hit quite a low point. I’m experiencing extreme fatigue, fatigue that makes even the smallest conversation feel exhausting and I’m crawling into bed as soon as I finish work. On top of that, I’m having symptoms like hair loss on my eyebrows and frequent, worsening dizziness.

I have SIBO, which causes fatigue and nutrient deficiencies, so it’s likely the hair loss and dizziness is down to low iron, B12, and/or protein, which are common problems with SIBO. Coupling that with endometriosis means my body is just overwhelmed. There are some signs it may be down to low thyroid too, which is associated with SIBO, so I’m testing for this as well.

Chris, how does it feel seeing Jessica unwell and struggling with symptoms?

From Chris: It almost feels like déjà vu of when Jess first started having recurring endometriosis symptoms, feeling powerless to help in any meaningful way and having to watch someone you love suffer. It’s especially hard, as I know how hard she worked to cure her endometriosis symptoms.

I can help in small ways like cooking more, cleaning more, generally trying to look after her, but I know that the real work has to be done by her and I just have to make sure I’m there for support. However, I know how strong she is and that she will overcome these challenges just like she has before.

What advice can you give to couples who experience setbacks or slow progress in managing endometriosis?

From Jessica: It’s difficult to offer advice in the midst of it. I really, really struggle to take breaks and rest, so I’m trying to learn to do that. That means leaning on Chris to take on more roles in our house, and it’s difficult to do without feeling guilty, but I try to show my gratitude as often as possible. I’m also becoming a bit clearer with what I can and cannot do, letting Chris know that I need to change the way we do weekends for example. We’ve stopped going food shopping and are now ordering online and are no longer going on hour-long walks like we once were. Even just a 10-minute walk now feels tiring! We’re also trying to save some money so I can take a month off in the autumn to really treat my SIBO and recover, so that’s quite a big decision for us both.

From Chris: For the partner of someone experiencing setbacks or slow progress, I’d just say to try and be an anchor of stability and support that they can use if need be. There’s also a balance that needs to be struck between telling your partner when you think they should slow down and rest, and not putting limitations on what you think they can do. It can be difficult to get right, so have open and honest conversations about it.