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  1. Yesterday, December 13, 2019, I posed the question in Nancy's Nook asking what were the difficulties in parenting while having endometriosis or unresolved pelvic pain. This was designed to have further discussion on a subject I first raised several years ago when I was surprised by a patient's comment on her failure to bond with her child due to endometriosis and disabling pain.
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  3. I was tempted to revisit the subject in a Nook discussion after being at the AAGL meeting in Vancouver Canada last month, following 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 achieve the pregnancy seemed to be the measure of achievement. However, for women 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. Within a very short time after posing the question, over 300 heartbreaking posts were put up by patients. Are we serving patients by helping them achieve pregnancies while still sick? Indeed, I suspect not. We are adding feelings of guilt and shame, loss, inadequacy, 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.
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  7. Suppressing pain long enough to achieve a pregnancy does what for parenting? From Twitter yesterday: You can't imagine the immense pain of being so ill that you can't care for your 2 toddlers at home, while the ob-gyn across from you causally suggests maybe another pregnancy might help my endometriosis.
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  9. As compared to: I am 23, and was diagnosed laparoscopically in 2018. I’ve had problems since I have been in high school with heavy periods, painful periods etc. I don’t have a son biologically but through marriage. And it’s been very rough raising him. He’s the sweetest, but most energetic little boy ever. And most days I was couch-bound, hot baths every day. ER trips every other week, naps every day. I was drained, I couldn’t keep up with him. And I felt horrible, what mother doesn’t when you so badly want to be out there running, playing, hiking, giving your child the longest piggyback ride in history! I just couldn’t do it, I felt like every single day.. I was crawling to every destination. I recently had gotten surgery at Northwestern specialty hospital by a nook approved doctor. And look at me now, last weekend.. I SPRINTED with my four years old.. he is the one who stopped first. I am the one who instigates games first now. I am now the one in control. I feel like I have NEVER felt before. And that’s the truth, my body has never felt this way, it’s always been use to endo. My husband and I plan on having a child in the near future due to my specialist wanting me to get a hysterectomy cause of some issue. I’m hoping from here on out, it is going to be a wonderful life.
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  13. We know through the science that pregnancy has no curative or treatment impact on endometriosis. Sorry folks, that is just old myth. It is no more effective than drugs that do not work, than castration that leaves active estrogen producing disease behind, than removing the uterus to stop reflux that has little if ANY role in endometriosis.
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  17. There are specific themes that came out in post after post. You can read them yourselves if you want to join Nook. Please answer the screening questions so that moderators will know you have a legitimate interest in being there as a group with 85, 000 women/transgender can attract those who should not be present.
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  19. https://www.facebook.com/groups/NancysNookEndoEd/
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  21. If you are passionate about helping women with endometriosis and helping them to become parents, exposing your approach to the dark side of being sick while trying to parent could be truly eye-opening as well as practice-changing. Getting a baby should not be the end goal, being able to care for a child should guide us.
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  25. The themes that came out in nearly every post:
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  27. * kids as caregivers, they are taking care of the parent, looking after meals, medication, hot pads, standing by with great anxiety
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  29. *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
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  31. *limiting 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 now used up any discretionary funds.
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  33. *guilt from having to turn the child's requests down, whatever they are,
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  35. *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
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  37. *Kids emotional health impacted by sick parent, kids demonstrating great worry about the parents well being and that it never seems to improve.
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  39. *caregivers 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
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  41. *caregivers dismissing symptoms as depression RX offered to treat that has no impact on pain, further depressing the patient thru lack of support
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  43. *caregivers 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.
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  45. *Spouses either picking up or distancing. Spouses working full time now trying to take on more of the household or simply leaving or working long hours to stay out of the house and not have to face the illness.
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  47. *relationships failing or strained, divorce and separations common, often leaving the patient and the children without insurance
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  49. *missing kids accomplishments in sports, school, social events, PTA meetings,
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  51. *have kids now ready or not, or just have a hyst
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  53. *fear in committing to things the body wouldn't likely allow, resulting in disappointment for everyone.
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  55. *kids expressing disappointment that you are not the mom they want or need.
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  57. *stymied kids social growth, no parties, sleepovers, no cookies for events etc.
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  61. Just a few of the themes highlighted above should give us pause to help patients achieve relief of their disease. Medication while touted to relieve pain, is really lacking. The published paper recently claiming relief of significant pain, turned out to leave their own data out that showed it does not work as claimed. Medication has limited lifespan use due to side effects, yet we are seeing recommendations for long term use, despite the fact the company's own data does not support effectiveness.
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  63. So we help women achieve a pregnancy that most in pain from endometriosis will not be able to manage to parent well. This then loads the patient with far greater emotional devastation related to a self-described sense of failure, shame, loss, inadequacy, failure to bond. Likewise, we pass on kids who struggle to find support, intimacy, other connection to friends and society. In the very time frame, they should be developing social skills, they are isolating themselves, providing care to their parent, in fact parenting the parent.
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  65. And the impact is not just during their early lives:
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  67. "I'm 53 my only son is 31. Endometriosis and Adenomyosis were very difficult for him growing up. I didn't understand what was going on with me for most of his childhood. Seemed like one day I was fine and the next I was in debilitating pain. Eventually, I became bedridden as I was in pain most days. The pain would come while on vacation, camping, during special occasions and all the wrong times. It made it difficult to keep and maintain jobs. That affected our income, available choices and stability dramatically. I was underweight, exhausted and felt like a failure as a mom, adult, employee, and woman. I was unable to be reliable and show up because I was so sick so often. It was hard for him to watch his mom be in pain and be sick; powerless to improve things. It was disappointing to say the least. It was hard on other relationships too. It caused family problems. I am divorced. It definitely made me look like a failure. Imagine growing up with an unreliable mom. I was constantly told by doctors, it was in my head despite repeated surgeries with confirmed pathologies. That made me look like and feel like I was crazy. As my son grew into his teenage years my condition got worse until I could no longer work or participate in life. That put a rift between us that is still healing today. I look at my two beautiful young granddaughters and wonder if they will go through it too. It was so much more than pain. It was being unavailable and unreliable too and for my son. It was being poor. It was failing countless times in so many ways. It made me a burden, not a resource. Most of it would not have occurred if adequate medical care would have been given. And it didn't go away. I am still having problems to date. The cost of endometriosis is great. So much more than chronic pain. Honestly, just thinking about it to write this post is making me cry. We need medical care to step up and help us so we can be productive members of society and raise strong families."
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  69. And adopting does not add easier alternatives, either physically or financially:
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  71. "What idiot thinks pregnancy is the end of endometriosis problems? Some of us are parents without the blessing of being able to get pregnant. Our children were adopted as older children from another country. They both have special needs and we homeschool because of them. I have to set up my entire curriculum and teaching program to be able to be flexible around bad days. If it’s really bad, or post-surgery it has to be passed off to my husband. I’ve had to tailor our days around making food for a specialized endo/anti-inflammatory diet, not being able to get out of bed, dealing with fatigue or mood issues, and having very limited mobility. I HAVE to have time to myself to survive because I easily get overwhelmed due to the hormonal balances I’m desperately trying to get corrected. It’s made so many years so hard and stolen a lot of time from my kids. It’s made bonding with them extraordinarily difficult. It makes everything difficult.
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  75. I would have loved to have a biological child or even to have adopted a newborn. But endometriosis is expensive. IVF is even more expensive. Adopting a newborn is even more expensive. Adopting older children, especially internationally is super hard for life. But it was the only way we could have kids. Thanks endometriosis. I love them to death, but it has made every aspect of life 1000s of times harder and more lonely than it is for most people."
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  79. Inadequate care for endometriosis that does not last, or is not fully supported by caregivers when pain returns perpetuates the difficulty of parenting as well.
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  81. "3 kids - almost 11, 8 & 7 years old. I wasn't diagnosed until April 2018 but had been suffering for almost 2 decades by then. By the time of my diagnosis I was mostly housebound, struggled to go anywhere or do anything because my pain was so debilitating. My kids had an angry, sad, upset, not happy mother who was grieving for her old active life (in 12 months I went from being able to run & jog and walking 4km in less than an hour to barely being able to walk 100 meters down the street before the pain was so bad I had to stop and sit down).
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  83. My pregnancies weren't nice either - multiple unexplained miscarriages between my 3 successful pregnancies, constant pain in my pelvis, a large burst ovarian cyst (which I've since found out was likely an endometrioma because it grew on the same ovary that had a deeply infiltrating lesion inside it) that sent my BP skyrocketing, hyperemesis gravidarum through all 3 successful pregnancies (not related to endo but made everything else worse), torn scar tissue... I could go on and on.
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  85. I'm 19 months post lap now, the pain has been creeping back since 11.5 months post lap but it's not bad yet (I have noticed that I'm losing my patience much more often than normal when I am in pain though), likely going to need another lap in a year or so."
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  87. The quotes above are just a small sample of the 300+ posts that came pouring in when the opportunity to discuss parenting in the presence of endometriosis was opened up. If you are caring for patients with endometriosis, consider their future, the future of their children and the child's ability too integrate into society from skilled, present parenting. The parents want to be there for their children, their angst is palpable thru reading their stories. I shut the post down or we would likely have thousands of stories by now, as they kept coming in through my PM option on Facebook.
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  91. Are we serving our patients and their children well? Possibly not.
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  95. Addendum : I expected backlash on this and I am getting it. People miss the point, I am not against assisted reproduction or having a baby, I am allowing patients to tell us there is a problem when they are not well enough to parent. It should be part of an OB/GYN discussion, are you well enough, is your pain too great to cope, has your pain been getting worse (so you have some idea if it will continue to worsen), prior to conceiving? If these are issues, patients deserve relief before starting a family. Just read the posts in Nook, when you open the thread, the overwhelming grief at not being able to be the parent they want to be, and the grief expressed by the children silently or otherwise are messages we should heed. In addition to the 300+ posts here, my inbox was flooded when I closed the post after leaving it open all day. As always with endometriosis, patients and their children are trying to tell us something and we should be listening for everyone's benefit.
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