The Changing Role of Endometriosis in a Relationship as Pain and Symptoms Are Managed

Jessica has endometriosis, and Chris is her partner. Together, they battle endometriosis as a team. Jessica and Chris discuss the changing nature of managing endometriosis, and how their knowledge, hopes, and roles change over time. Recently, Jessica has gotten a lot of her endometriosis symptoms under control through diet and lifestyle changes.

How has this affected the role of endometriosis in your life and what do you now see as your priorities regarding the condition?

From Jessica: Previously, endometriosis caused me excruciating pain around my periods and some level of pelvic pain at other points of the month, but my day-to-day life was affected by the fatigue and brain fog more than anything. Now my endometriosis pain is gone, unless I’m not managing it well, and my brain fog and fatigue have alleviated.

However, I now have daily chronic pain from interstitial cystitis, worsening SIBO symptoms, and HPA axis dysregulation, plus nutritional deficiencies as a result of the SIBO, and I feel like I’m unwell in some form almost every day from the mix of these. In a way, it’s easier to live with because at least I’m not living in fear of my periods, but now I’m living with constant bladder pain. Instead of having these acute moments of struggle that were sprinkled across the month, I’m now having less intense struggles (though they for sure peak at points), but they’re every day.

It’s burning me out pretty quickly and I know that I need to prioritize my SIBO treatment in order to heal the rest, as so much of it is rooted in my gut health problems.

Has this evolution in Jessica’s endometriosis changed your role in its management?

From Chris: Now that the focus of Jess’ healing journey has changed – from endometriosis pain to other related conditions – there’s a lot more to remember! I’d become pretty well versed in endometriosis, but now considering IC triggers and foods that feed SIBO whilst also avoiding inflammatory foods makes suggesting meals a challenge! As Jess becomes more and more educated about this issues, there’s a lot of information to keep up with to remain helpful and understanding.

It has also enhanced my kind of advocacy role. Before I would tell everyone about endometriosis and spread awareness as best I could, I can now go further and speak from a more informed place about a host of other bacterial and hormonal issues that are often associated with endo, offering a more complicated but more complete view of largely undiscussed women’s health issues.

Have your discussions/hopes/fears around endometriosis changed?

From Jessica: The changes I needed to make for endometriosis were relatively small in comparison to what I now have to do for my SIBO treatment and what I’ve done for my histamine intolerance and bladder pain. I’m having to really plan out months’ worth of treatment and specialist diets, whereas eating for endometriosis had become normal to me.

I really hope that treating the SIBO will lessen my problems with histamine and my bladder pain, and allow my body to at least start to recover from HPA axis dysfunction. I am admittedly fearful of it being a long journey with SIBO and the likeliness of relapse makes it harder for me to predict how my healing will go, but it’s all part of it. I can’t change the fact that I have these, there’s no magic pill, so this is the road I have to travel down and I know I will feel better at the end of it. Yes, some of them may be chronic, but that doesn’t mean I can’t feel well.

From Chris: It’s definitely reassuring not having the looming fear of a bad menstrual pain each month, as Jess has largely been able to manage this. This is a hope I used to have that seems to have been achieved!

But there’s also a new worry that as she goes deeper in her journey of understanding her body and symptoms, and more and more potential conditions and potential treatments and complications appear, we’ll be overwhelmed with the complexity of it all. Luckily Jess is intelligent and dedicated and basically the best advocate for herself she could hope for – I’ve just got to try and be the second best.