Bowel attached to Uterus -- endometriosis (children mentioned)

Hi, I was diagnosed with endo 5 years ago(at 33). had painful periods since I was 18. Had 3 big (9lb) babies no trouble.
Had a lap and endo burnt off again in november 07. was then told my bowel was attached to my uterus (no wonder I was having trouble there for the last 12 mths!) and the only option was a hysterectomy.
Even though I was finished with my family now I wonder if I should have another because my choice will be taken from me.
Emotions makes no sense!!!!
Has anyone had this problem and is there any other options?
I was told 5 years ago that eventually I would need one but am really struggling emotionally.
As I am in advanced stages of endo the pain and the flooding are really bad. But still I hesitate. The time frame I have been given is 2 years, before the endo starts eating through the walls and enter the bowel. So far it is all contained to the uterus...thank God!
So one part of me says do it now before it gets worse and the other part om says don't do it.
Thanks in advance or any help you can offer.
Helen

Hi Helen,
I have had endometriosis for years and have had my bladder separated from my uterus a couple of times during laps for endo pain...most of the time I would get relief for a while but right before my 11/07 hysterectomy the diagnostic lap showed endo sticking everything together AND THERE WAS ACTUALLY ADHESIONS ON MY UTERUS...I hate to tell you this hon, but I think your uterus will continue to re-adhese itself to your bladder if you just have the endo cut out and separate the organs. If you are done having kids, surgery sounds like the answer. I know it's scary. I tried to put my hysterectomy off as long as possible but eventually my quality of life was suffering as I was either always in pain, recovering from some sort of medical procedures or awaiting the pain that came with periods and/or sex. While my hysterectomy experience was not the greatest (lots of RARE complications), I really think it was the best idea for me at the time as I was really starting to miss out on life (just the every day things like going grocery shopping, etc..) I send prayers for your health and hope you can make an informed decision that you are comfortable with. Hang in there Helen, we know you have the strength to conquer anything this old world sends your way!

Welcome to HysterSisters! I hope we can offer you some support and information to help you as our make your decision regarding a hysterectomy!

First, since you do have endometriosis and it sounds like some complicated issues involving endometriosis, have you consluted with an endometriosis specialist? An endometriosis specialist should know the latest and best treatment options as well as possess superior surgical skills to remove and excise endometriosis including what is on your bowel walls. An endometriosis specialist should use a method other than cauterization (burning) to remove the endometriosis. Cauterization on the bowel is not recommened. You are going to need a surgeon who is capable of working with the bowel in order to have your bowel safely seperated from your uterus.

We have several Endometriosis Resources you may want to read through to learn all you can about endometriosis before making your final decision. A hysterectomy is a major, irreversible surgery and it is not a cure for endometriosis. In fact, there is no cure for endometriosis, only treatment options. The more skilled your surgery, the more endometriosis that can be excised, the less chance of recurrence. However, endometriosis can be microscopic and it likes to hide so endmetriosis can be missed during a surgery and then rear its head down the road.

You also need to consider your hormone issues. If you retain your ovaries as I did, then your body will hopefully be supplied with all the hormones you need for your overall health. However, the same estrogen that benefits our heart, bones, skin, eyes, etc. also feeds endometriosis. Some doctors feel it is best to remove the ovaries of women with endometrisois and avoid all hormone replacement therapy (HRT) as the risk of future endometriosis is too great. Others feel that either the ovaries or HRT benefiting the overall body is a greater pro than the risk of future endometriosis. So you need to talk to a doctor who is knowledgeable regarding both endometriosis and hormones to decide what might be best in your specific case.

We do have an Endometriosis Support where there are both pre op and post op ladies discussing their situations and how endometriosis has and is affecting them. You may find some support there from those women who are also dealing with this nasty disease.

As you are struggling with the decision regarding your loss of fertility, I would suggest asking your doctor, pastor, etc. for a referral to a counselor who could help you work through your feelings so you can decide what the next best step for you might be. One thing to consider is that if you choose to have another child, there is no guarantee you would be able to conceive again. I know in my case, I had two children prior to my hysterctomy. When my doctor did my laparoscopy a few weeks before my hysterectomy he told me I was blessed to have my children. From what he saw inside I shouldn't have had them. Further more, had I tried to have another child (which we did not due to the continuous bleeding that cropped up and led to the laparoscopy), I probably would not have been able to conceive. For me it would have been harder to have tried and failed than to have not tried. But that is me, I can't tell you how you will be affected. Emotions can be very fickle and hit us when we least expect them!

I wish you all the best as you do your research, seek at least a second medical opinon, and try to decide what is best for you. The decision to have a hysterectomy should not be made lightly so you are doing the right thing asking quiestions!

Sending many S your way!

Raven,

Hi, I underwent my SAH/BSO on February 4th (little over two weeks ago) It all started in 2004 when thru a lap I was diagnosed with endo... mild. Time passes and pain slowly comes back, go to another doctor (out of my control) and he suggests I have an ultrasound. Found out that my left ovary was 11.7 x 7.9 x 13.2cm.. completley consumed, right ovary had two cysts on it as well... fibroids on my uterus. Plan of action was to remove my left ovary for sure and inspect the cysts on my right ovary etc. I woke up and was informed I had what I had. I had adhesions from uterus to my bowel so bad I almost walked out with a colostomy bag. The mass that became my left ovary was endometrioma, along with the two cysts on my right ovary (a.k.a chocolate cysts). He drained my left ovary of 500 CCs. He told me on a mess scale of 1-10 I was an 11 and that in his 20 yrs if I wasn't the worst case, I was at least the top 3.

I'm still recovering from surgery but I can tell you I felt better from the time I woke up in my room. I am not trying to sway you one way or another. My emotions feel in check.. hadn't had any menopausal symptoms, but dr put my on synthetic estrogen 6 days ago.

Well, that's my story, hope you don't feel as alone now. Do the research, but don't let me be at the cost of your health and livlihood

I just had a Hysterectomy on 2/14/2008 due to severe endo pain, and found out that my Bowels, Uters (tubes coming from the kidney) were all fused to my uterus. In addition, I was diagnosed with Andometriosis which my Doctor described as endometriosis INSIDE the Uterus. I was in extremem pain and welcomed the surgery....but I wished I had visited a site like this one to know all the POST-OP circumstances.....at least them I would have felt more empowered about my decision.

I say go ahead and have another child if you can stand the pain of endo, and then educate yourself and then have the surgery.