Medically Complicated w/ Questions

Hello!
I'm brand new here and have joined in an effort to do some research on the topic of hysterectomy and talk with others who have gone through it. I went to see my OBGYN last week for continued, chronic lower back pain, pain during intercourse, pain while having a BM, and lots of cramping during my periods. I was diagnosed with endometreosis when I was 13 or 14 and had surgery when I was 16 - which helped for a little while until the problem returned. Even childbirth did not resolve the problem and about a decade and a half later, I have increased in pain again. I resist going to the doctor whenever possible because I have a lot of other medical problems and I just get sick of making appointment after appointment for things but I finally stopped putting this one off and went last week.

My doctor, who I have been seeing for years and knows my history well, thinks I need a hysterectomy. She wanted to take all out except one ovary. She says it sounds like there are patches of endemetreosis on my spine, colon, and possibly bladdar. I am leery about her taking out the other ovary because I am worried about hormone loss. will I still function the same with one ovary? My hormones have always been good to me - one of the only things that my body seems to be with the program on - and instead of getting cranky around that time of the month, I'm always happy, even when i'm in pain, and even when I don't feel well. I get this wonderful emotional high. For that reason and other complications such as allergy to drugs and severe sensitivities to drugs, my doctor doesn't want to go that route and wants to skip right to surgery. We have tried drugs in the past and boy, that could have gone a lot better.

I also have a complicated medical history which includes frequent blood clots in the arms and legs, predisposition to dehydration via a condition called Gilbert's disease, celiac sprue, multiple histories of hemorrhage, Chronic Active Epstien Barr Virus/Post Viral Syndrome (causing: enlarged liver, chronic fatigue, fibromayalgia, & weakened immune system), raynauds, colitis, GERD, chronic anorexia from gastroparesis, abnormal responses to scarring, and multiple food and medication allergies. I'm only in my late twenties and do not expect to live to a ripe old age. Looking at my medical history as a whole - the reproductive issues that I am having seem minor to me, despite the severe pain being caused by those problems. My brain keeps saying - "well at least having miserable periods and a chronic back ache isn't life threatening" - despite having almost lost my life twice to acute reproductive bleeding in the past. Because I have had to be on and off of blood thinners for unpredictable blood clotting, my periods have been uncontrollably heavy also, and that scares me.

I have a few major concerns with this venture. Since I already have a history of severe bleeding (they were post partom), am I at greater risk with this surgery? I know I will have to go on blood thinners after the surgery or else I am sure i'll clot, but that also makes me more prone to bleeding out.

Even if they take my ovary, am I at greater risk of going into menopause now, in my late twenties? Doesn't menopause contribute to osteoparosis? I already struggle with maintaining weight and have lost some bone mass during times when I could not eat well due to gastroparesis. I know because of that condition I am at higher risk for bone loss. Will this be a death sentence to my bones or will the one ovary be enough to get me through my "child baring" years before menopause sets in?

How common is prolapse? Risks seem to follow me when it comes to medical things. I try to be as active as possible, despite my medical problems and have a very fast paced job which involves a lot of bending, some heavy lifting, and a lot of on-your-feet time. I can take some time off to recover...but if lifting things for the rest of my life is going to be a problem....well, that's a problem!

I'm just trying to do some research to decide if my body can really handle this. I like to make informed decisions about my medical care as I know that sometimes doctors are too busy to really think through all of the causes and effects. Thoughts?

Thanks!

-Beautifully Me

Wow!!! Sorry to hear about all your problems. I would make sure that you have an oncology gyn who handles the tough cases. They are so much more experienced with this. Ask them about your questions and get some answers BEFORE you have surgery or plan it. I also have some other medical problems although you top me big time. My doc assured me that they had the pain med issue resolved so I go for surgery and they ask me what to use!!!! I am saying you are the docs figure it out and tell me what you want to try. After a lot of discussion, they come up with an answer of what to use. Waking up I am itching and can't get them to listen. Finally asked for my mom to come in. She was able to understand and go ask doctor for medicine stat. After giving med I was very loopy and sleepy. I knew something wasn't quite right so told mom to ask for nurse to come and look at me. When she comes in, she takes one look and is yelling for docs and help stat. Turns out I was having an anaphyllatic reaction and would have been in real trouble within a few minutes. So make sure that all your questions have been answered and they have a plan. It can be challenging when you have other medical problems so discuss it with doc. Sending lots of hugs and best wishes.It will be ok.

If you have endometriosis, it will be important to find an endometriosis specialist, reproductive expert, GYN oncologist, or similar surgeon who can get all the endo off all those different areas. Otherwise your problens will likely return. I'm sorry you have so many medical issues. It'll be important your Drs work together but I'm sure you know that. If you don't have some complication bending and lifting restrictions only last 6 or 8 wks. In a perfect world life goes back to normal after a hyst----it can take 6 mos or more to totally get there. But in your case it seems possible it could take longer. I think lots of planning and coordinating Drs will be key here in your decision and possible surgery. I hope it all works out for you, whatever you decide.

No doctor, but your gyn problems sound so like mine, is Interstital Cystitis is a possibility? It took me 3 years (with the same doc, whom I LOVE) to get that diagnosis. My pain would flare out of control, and even now (4yrs) I can't always distinguish between endo or bladder pain, or even my IBS. Good Luck to you.

(((hugs))) and prayers that you can find the answers and treatment to bring you the best possible outcome.

Hope you have found some answers and are feeling better. Sending lots of hugs and best wishes.