Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
i dont have endometrisois but my wife does.i am trying to understand all this and to put myself in her shoes. i accidentally stumbled uppon this group while looking for something else.
a bit about my wife's case:
she is 50 years old.her gyno is saying she has one of the worst cases she has ever seen.there are these almost lesion like things that form from the uterus to your insides from what i understand from the doc.my wife has so many of these that they are starting to attatch to her organs. she has a cyst that started from the endo but progressed and is not literally size of peach. it is attatched to the uterus and spine.
thiscyst is pushing own on the nerves in the right side making her whole right side numb and walking very difficult.
we have been refered to a specialist out of town.already though they are saying because this big one is attached to spine there is 85% she wont walk again.also they are saying that even after they remove the uterus and ovaries she still may have pain depending on how much scar tissue has built up over 50 years with the endo.
she is currently taking lyrica for her fibro and arthritis so there is no other meds they want to put her on.they had her on cymbalat to start but that literally made her crazy.
so my purpose here:
i am trying to understand this disease i guess you would call it and the things that i can do to help her. i know i have issues with my own uterus but it seems nothing in comparison to the endo.
a bit about my wife's case:
she is 50 years old.her gyno is saying she has one of the worst cases she has ever seen.there are these almost lesion like things that form from the uterus to your insides from what i understand from the doc.my wife has so many of these that they are starting to attatch to her organs. she has a cyst that started from the endo but progressed and is not literally size of peach. it is attatched to the uterus and spine.
thiscyst is pushing own on the nerves in the right side making her whole right side numb and walking very difficult.
we have been refered to a specialist out of town.already though they are saying because this big one is attached to spine there is 85% she wont walk again.also they are saying that even after they remove the uterus and ovaries she still may have pain depending on how much scar tissue has built up over 50 years with the endo.
she is currently taking lyrica for her fibro and arthritis so there is no other meds they want to put her on.they had her on cymbalat to start but that literally made her crazy.
so my purpose here:
i am trying to understand this disease i guess you would call it and the things that i can do to help her. i know i have issues with my own uterus but it seems nothing in comparison to the endo.
I'm not sure who the specialist is your wife has been referred to but I highly recommend this person has extensive experience with endometriosis. I can't speak for other's experience's but I can only imagine the pain, fear, and concern you both must be going through.
I have been through several surgeries and should have immediately gone to an endo specialist. I have recently contacted a surgeon in Los Gatos, CA. and am reading the book, "Stop Endometriosis and Pelvic Pain" and am in shock at how much my journey can relate to what Dr. Cook writes in this book.
My experience tells me that we truly do need to be treated by someone who specializes in this field. Please keep posting and let me know how you and your wife are doing.
I wanted to add that I also tried lyrica and cymbalata and neither worked for me. Currently the only relief I get from my pain is through narcotic pain meds. I also do my best to eat right, stretch, rest and exercise when I can. Diet is not a cure, but I do notice when I eat poorly I feel even worse. It took time to find a doctor that took my pain seriously but now I have a pain mgmt doctor who agrees, he doesn't know much about endo and together we are working on finding other options than the narcotics..(but for now this is my only option for relief)...thus the trip to a specialists within the next year.
Please, go to a surgeon who specializes in excision of endo. Go to get questions answered and options for removal. I'm so glad I read your post and I hope and pray things work out okay for you both.
The doctor sounds good. I would also research surgeons from endometriosis sites to see if his/her name is recommended. Please keep us posted how things are going. You're both in my thoughts.
It might take a few doctors to find the right one.
I had actually looked at getting a referral to this doctor. He has great ratings and if you search the webpage for the keyword "endometriosis" you will see good reviews with those patients.
https://www.ratemds.com/doctor-ratings/62543/Dr-Nicholas-Leyland-Hamilton-ON.html
I would say your wife is in good hands...
Good luck.
Things you can do to help her:
- COMPASSION is number one. Know what is going on. Look it up, and let her know that you "get it" and be empathetic about it.
- Understanding. I think most of our posts are about looking for a sense of "okay I am not alone" from others here because we all know what it is like. Usually the people in our lives don't fully know what is going on so it is hard to have compassion. Unless you go through it you will never fully understand but admitting that and just believing her pain is real and likely causing her emotional and physical stress.
- Also, understand it will be a constant battle for her and the only way to make it through is to stay positive.
- back rubs when the pain is the worst always helps me because I know my partner wants to do anything to make it better. Especially when I don't have to ask.
I am sure the other ladies here have some input as well but that is it from my end.
Stay strong for her!
ks
HUGS and kudos to you for reaching out in order to help understand this disease for your wife. I wish that all spouses, bf's, gf's, friends and family etc...would do the same as it's so difficult for everyone around us to understand. I'll hope that your wife gets relief from this surgery and a well deserved break from all of her suffering. ~ Jenny