Parenting is Hard, Even Harder with Endometriosis

From Nancy Petersen, RN retired

Parenting is difficult. Throw in a chronic illness like endometriosis and it about feels impossible. Adding insult to injury, some providers still think that pregnancy is a viable treatment for endometriosis! Little tidbit here: “Available data on the development of endometriosis during and after pregnancy show fewer beneficial effects than previously reported. Therefore, women aiming for pregnancy on the background of endometriosis should not be told that pregnancy may be a strategy for managing symptoms and reducing progression of the disease” (Leeners, Damaso, Ochsenbein-Kölble, & Farquhar, 2018, p. 290). In addition to this, infertility is often present in those with endometriosis- 30% to 50% of women with endometriosis also struggle with infertility (Evans & Decherney, 2017). It seems illogical to tell someone that pregnancy will help their endometriosis when endometriosis can cause infertility. Parenting with symptoms from endometriosis is difficult, and the underlying cause of the illness should be addressed.

Not much research has been done to truly understand the impact of endometriosis on being a parent (Culley et al., 2013). However, an informal survey of the Nancy’s Nook Facebook group reveals that it is a significant struggle for many. At the AAGL meeting in Vancouver Canada in November 2019, I had discussions with several physicians about the issues around child care and bonding. These issues appeared to truly surprise the physicians I was speaking with, as the prominent assumption seemed to be focused on the fact a pregnancy was successfully achieved. The end result of efforts to attain the pregnancy seemed to be the measure of achievement. However, for individuals with persistent pelvic pain/endometriosis, it could easily be called the beginning of a nightmare. This is not just for the occasional or odd case.

In December 2019, I posed the question in Nancy’s Nook on Facebook asking “What are the difficulties in parenting while having endometriosis or unresolved pelvic pain?”. This was designed to have further discussion on a subject first raised several years ago- when I was surprised by a patient’s comment about her failure to bond with her child due to endometriosis and disabling pain. Within a very short time after posing the question, over 300 heartbreaking posts were put up by people.

Out of the responses to that Facebook post, there are specific themes that came out in post after post. You can read them if you want to join our Facebook group Nancy’s Nook (don’t forget to answer the screening questions- those help us keep out trolls, social bots, etc.).

The themes that came out in nearly every post:

• Having to limit family outings/activities, planning vacations around a period or pain flares, canceling plans time after time as they were too sick. Often the financial impact of the disease and repeated reproductive efforts have used up any discretionary funds to use for such activities as well.
• Fear in committing to things the body wouldn’t likely allow, resulting in disappointment for everyone.
• Concern over stymied kids’ social growth (from limitations on activities such as parties or sleepovers, or such things as no homemade cookies for events etc.).
• Guilt from having to turn the child’s requests down, whatever they were.
• Not feeling as bonded as the parent would like, simply too ill or in too much pain to hold the child, to cuddle, to interact.
• Drastically reduced interactions, at least physically with kids- not able to go for a walk or play catch or bake or cook together, not able to go to school programs or parent-teacher meetings.
• Missing kids’ accomplishments in sports, school, social events, PTA meetings, etc.
• Kids’ emotional health impacted by sick parent, kids demonstrating great worry about the parent’s well-being and that it never seems to improve.
• Kids as caregivers- they are taking care of the parent, looking after meals, medication, hot pads, standing by with great anxiety.
• Providers uninvolved in pain management, leaving patients to fend for themselves as no one is believing what the patient is experiencing. Over and over denying the severity of peritoneal quality pain experienced.
• Providers expecting the pregnancy would have improved the disease and being told if the first one did not work, have another child it will get better.
• Providers dismissing symptoms as depression, without addressing the underlying cause, further depressing the patient through lack of support.
• Having to deal with providers’ suggesting that the person have kids now ready or not, or to have a hysterectomy.
• Disrupted relationships with a life partner. The life partner having pick up extra work and/or household roles. Or the life partner not able to deal with the illness and distancing themselves.
• Relationships failing or strained, divorce and separations, often leaving the individual and the children without insurance.

As a parent, know that you are not alone in your struggles. Others also struggle with dealing with their illness and trying to be a good parent. Also know that there is hope!

Just a few of the themes highlighted above should be an indication to help those with endometriosis achieve relief of their disease. Medication, while touted to relieve pain symptoms, is really lacking. Hormonal medication has limited lifespan use due to side effects; and yet we are seeing recommendations for long term use, despite the fact that companies’ own data does not support effectiveness or safety for long term use. Does it serve patients by helping them achieve pregnancies while still sick? Indeed, I suspect not. It can only serve to add to feelings of guilt and shame, loss, inadequacy, and frustration to their already overloaded psyche from pain and poor care for their endometriosis. As well, we now add the demands of a little person 24/7 to someone often so sick they cannot get off the couch or shut off their heating pad. The elation of a successful pregnancy fades quickly as the pain, sleeplessness, and disability rapidly return once nursing is stopped, sometimes even before. We know through the science that pregnancy has no curative or treatment impact on endometriosis. Sorry, folks, that is just old myth.

The end goal should be to treat the cause of the symptoms, so that the individual can be fully present as a parent. Many of those with symptoms from endometriosis will not be able to manage to parent well- not because they’re not a good parent, but because they are being held back by their illness! This then loads the individual with far greater emotional devastation related to a self-described sense of failure, shame, loss, inadequacy, and failure to bond. As bad as endometriosis symptoms can be, for a parent to not feel like they can be there for their kids like they desperately want to be is even more devastating. There are treatment options to help you be able to achieve your goals as parent. There is better care than being told to become pregnant. There is better care so that you can manage to be the parent that you’d like to be. In the meantime, look for and accept the support that you need. This quote speaks volumes about that:

“You are a superhero but not the way that you think…Lego Batman movie spoiler alert: By the end of the movie, Batman has to come to terms with the fact that he cannot work alone and that to truly do good in the world, he must work with others. This was a powerful message for me. I’m accustomed to doing things alone, but it is impossible to do it alone as a parent with a chronic illness” (Dunn, 2019).

References

Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., & Raine-Fenning, N. (2013). The social and psychological impact of endometriosis on women’s lives: a critical narrative review. Human reproduction update, 19(6), 625-639. Retrieved from https://academic.oup.com/humupd/article/19/6/625/839568

Dunn, Y. (2019). Healthy Advice for Parenting Through Chronic Illness. Retrieved from https://www.laparent.com/parenting-through-chronic-illness/

Evans, M. B., & Decherney, A. H. (2017). Fertility and endometriosis. Clinical Obstetrics and Gynecology, 60(3), 497-502. Retrieved from https://journals.lww.com/clinicalobgyn/Abstract/2017/09000/Fertility_and_Endometriosis.6.aspx

Leeners, B., Damaso, F., Ochsenbein-Kölble, N., & Farquhar, C. (2018). The effect of pregnancy on endometriosis—facts or fiction?. Human reproduction update, 24(3), 290-299. Retrieved from https://academic.oup.com/humupd/article/24/3/290/4859612