This was an article originally posted at Epinions.com on September 30, 2000. As it is not an “income generating” article I decided to delete it there so as to move it here instead with the belief that it would add interest to THIS blog.
Please be advised that much of this no longer applies to my current health as I had a hysterectomy 5 years ago.
Endometriosis and Its Effect on My Family
I suffer from a disease called endometriosis. It is a disease where the cells which normally line the uterus are found elsewhere in the body. These implants fill with and shed blood according to the menstrual cycle. This causes inflammation, swelling, and eventually scar tissue (adhesions) which distort normal organ placement and function.
Many people consider endometriosis as a synonym for “bad periods”. And while having a more difficult time during ones menses is a warning sign pointing to endometriosis – it is much much more than that.This is a disease which effects every day of my life. It impacts not only myself but my husband and my children.Some of the ways in which this disease impacts my family is :
Difficult Menses
3 days of which are associated with particularly heavy bleeding, clots, debilitating cramps, vaginal pain, and diarrhea
This makes it difficult to be out of the house for any length of time. Going to the Mall, out for a walk, out to dinner – all of this is out of the question. Making love is simply not possible. I am miserable and all in all not fun to be around. I have to plan my life around these 3 days.
Difficult Pregnancies
I have been pregnant 4 times, 2 of which ended in miscarriage. In order to conceive my youngest I required surgery. During my pregnancies, I dealt with pain (as the uterine ligaments which have scarring and implants of endo stretch) and digestive woes from the adhesions, made worse by the hormones of pregnancy.
We face a situation where, though we are young, we know that this disease is robbing my fertility. That while we are still deciding whether or not to try again, my body may make that decision for us. That next time, surgery might not be enough and the knowledge that I am at higher risk for yet another miscarriage even if we can conceive again.
This is something I carry guilt about. As illogical as it seems in my heart I feel that it is “my fault”, all of it.
Chronic Pain
I also suffer from ongoing pelvic and abdominal pain throughout the month. This is due to the implants of “endo” themselves and resulting adhesions.
Due to adhesions on my bowel I live with pain on my right. This pain ranges from an awareness of pressure on a good day, to feeling like someone has run me through with a pipe. It goes from my front through to my back.
On a bad day it also radiates down into my leg and can make walking difficult. At its worst it makes me limp.
In short I hurt more days than I don’t. The days that I am painfree are brief and transient blessings.
I no longer can physically lift my older child. Carrying my youngest for any length of time it something I pay for afterwards.
Painful Intercourse
The endo on my uterus causes pain during intercourse. This is not an occassional twinge.
This is pain during the gentlest of love making. From start to finish. This is something which turns what used to be an act of love and pleasure into something I have to grit my teeth to get through and leaves me in tears.
This is sharp stabbing pain which takes my breath away with deep penetration.
This is pain that leaves me stiff, sore, and aching for 24-48 hours after lovemaking.
While my husband and I try and find time for intimacy, lovemaking is a rare occurance and has lost its spontanaeity. Every day I am grateful that my marriage is strong enough to survive this hurdle.
Irritable Bowel Symptoms
Again, due to the adhesions on my bowel – my toilet habits seem to be “all or nothing”. I tend to not “go” for days at a time, and then when I finally find relief it is by way of multiple trips to the restroom over the period of a couple of hours.
As time goes by since I’ve last “gone” I deal with nausea, bloating, and again more pain.
I have to be constantly aware of my bowel habits as adhesions on my bowel puts me at risk for an obstruction (a blockage in the intestines).
I have to make sure that if I’m not “going” I am at least passing gas.
I have to watch what and when I eat. I have to spend way too much time thinking about what goes in and what and when comes out.
I have to know when I am due for attacks of diarrhea. When they hit I am incapacitated. I must have full access to a bathroom, I get intestinal cramps, sweats, in short every time it happens it’s like having an intestinal virus!
Fatigue
87% of endometriosis patients report fatigue. This is not needing a nap (though they help). This is being tired all the time. This is going to bed exhausted and waking up tired. It is not having the energy to play with your kids. It is being made bone-weary by doing light housework. It is a tired that you can never escape.
Fear
Endometriosis is a progressive disease. Meaning that it gets worse over time. As time goes by I will probably deal with ever increasing symptoms. Odds are I will get worse. And this petrifies me.
There is no cure. There are treatments which can help pain, which can slow down the progression of this disease. But none of them work for everybody. All of them have side effects. And even menopause or a hysterectomy does not guarantee me relief. It is easy to get caught up in feeling overwhelmed and hopeless.
It is thought to be hereditary. Meaning my 2 daughters are at risk, and I have done this to them!! I may have cursed them with a life of pain and suffering and infertility.
It is thought to be associated with increased risks for various auto-immune diseases and cancer.
In short it effects every aspect of my life.
I am not the wife I wanted to be. I wanted to be a wife who had the energy to keep my hosue perfect. I wanted to be able to enjoy my sex life. I wanted to be a wife who could be there to fully and completely support my husband. Instead I am a wife who can barely keep up with the household tasks, who doesn’t want to make love, who is tired and moody and grumpy more often than not.
I am not the mom I wanted to be. I wanted to be a mom who played with her kids, who had everlasting patience, who ran around and planned lots of outings. Instead I am a mom who too often says “not right now hun, mommy doesn’t feel well”, who is short on patience, who just isn’t a whole lot of fun. Instead my children are learning way too young about chronic illness, about chronic pain.
I am not the person I wanted to be. I don’t even remember myself before endo. I know that I had more energy, I know that I had more joy in life, I know that I could do more. I never wanted to live this life – in pain and sick more days than not.
But, it is my lot. And so I make the best of it.
I make love with my husband when I can, and when I can’t we please each other in different ways.
I spend quality time with my kids with lots of hugs and cuddles. With days where we sit on the couch together and read and color and watch movies.
And most of all, when I do feel good we make the most of it. We get out, we do things, we enjoy the activities that on other times I would not be able to take part in. And I am grateful that I do still get good days.
Blessings
Mama Kelly
Related reading:
Endometriosis : The Complete Reference for Taking Charge of Your Health
Endometriosis For Dummies
The Endometriosis Sourcebook
Endometriosis: One Woman’s Journey
Through the Land of Hyster: The Hyster Sisters Guide
Written by Mama KellyTags:adhesions, endometriosis, health