ovaries stuck to apendix and bowel

[ontariocanada]

I have severe endo, had surgery to remove uterus 3 years ago by general surgeon due to lack of family Dr.  He told me this would fix my problems of recurring endometriomas on left ovary.  3 months after surgery I started feeling that all to familiar ache on the left side going down into the left leg.  Then came the pain up my left side during bowel movements.  Saw a gyne last year and she said that my left ovary was stuck to my bowel and that the bowel was wrapped around it and a clump stuck together.  She said that I will need to have ovaries and everything else removed but that she could not do it because of the extensive involvement of the bowel.  She referred me to a dual specialist in Ottawa with a 2 year waiting list.  I started having more pain on the right side, with varicose veins now developed in the right leg and making just walking very painful.  Sent for special ultrasound and found that my right ovary is stuck to my appendix.  I see the specialist in 5 weeks and hopefully he will fix me up and allow me to have some quality of life again.  I am a little scared for the surgery this time.  Anyone have anything similar and advice?  

[ontariocanada]

So I had my surgery on the 26th.  They removed both ovaries because they were so full of disease.  Dr shenassa planned for 2 hours but ended up taking 3.5 because of how full of endo I was.  He took my appendix as well because the right ovary was stuck to it and it took him over an hour to find my left ovary buried in my bowels.  He cleaned me out thoroughly and believes he got everything so now it will be a waiting game to see if the pain returns but I am hopeful for the first time in years.  Anyone in the Ottawa area, I would recommend my doctor to you.  Best bedside manner, he phoned me at home today to see how I am feeling.

[ipurr2]

I am so sorry about the job! This disease takes so much from us! Hang in there!

[ticked]

I have been there. I lost my job after 10 yrs last Feb :(

[ontariocanada]

After everything else I have had to deal with it now looks like I am losing my job.

[ticked]

I can't say 100% that i have fully beat it. Time will tell.  

Usually a colonoscopy is done to rule out bowel disease. In the end they usually say its IBS. Make sure if you do have surgery again they check the rectovaginal area but I am sure they will since you are in one of the best places to have surgery.

[ipurr2]

it is generally not recommended to take anything such a birth control pills or progesterone as this will "calm" the endo making it less visible when you have surgery...granted if you aren't having surgery for a long time definitely do what you must to lessen your pain...I too went the bc pill route for a while,and it did calm things a tiny bit...but the disease was still busy gluing my organs together (frozen pelvis ~ as ticked said is the correct terminology for this) I too had it all over including on my bowels...if it could be there...it was...and yes I had so much pain....down my legs....in my back, tummy...pretty much every where...with all movement and bodily functions...it was a constant...remember endometriosis is an inflammatory process which can cause all sorts of pain issues...So hopefully you can get the disease removed and get your pain taken care of and get on with life...the sooner the better! I too went through the colonoscopy, endoscopy and every test known to God and man...endo is like a grain of sand in your eye..it may be small, but it can and does cause great pain (and damage) for many of us...Hope to see you beat this disease sooner rather then later like ticked and I! We understand the exhaustion that comes with it, and the wanting to give up but you can't....keep going and never give up hope that you will win! You an and You will!

[ontariocanada]

I have a colonoscopy on May 7 because of painful bowel movements, had bleeding and almost like spotting from my rectum and yes I do get rectal pain but it is not constant.  My family Dr set me up for colonoscopy because of my symptoms and a family history of bowel cancer.  She is pretty sure they will find info in there but also wants to be safe that we aren't blaming everything on the endo and then find out there is something else going on.  The specialist will get a report on the results too.

[ticked]

Do you know if your surgeon checked for rectovaginal endo? It is possible you might have that. do you have any rectal pain? I had pain everywhere but bowels and bladder were worse and I had endo all over. I found that ovulation was really painful as well. I was on the continuous BCP for 8 yrs and it did help me but everyone is different.

[ontariocanada]

Also saw my family Dr today and she just went to woman's health seminar run by Dr Shenassa and I was put on a new bc pill Lolo wwhich apparently is supposed to be more effective for women with endo because of the lower estrogen.  I also got my fitted support stockings today for the varicose veins.  Hoping at least my legs will start feeling better.  
For yous that had bowels stuck to ovary and parts of the bowel clumped together, did you have the severe pain up the left side with bowel movements?  And did you find anything to help with that pain?  I am mentally in breakdown mode right now.  I have been going through this for so many years now and I am just tired of having pain every day!!  I get asked the question" does the pain cycle" and I always say,if it ddoes it is a long cycle that I am waiting to have end.  I feel when I ovulate which is obviously more painful but a few days off from pain would be great.  It would be nice to be able to have intercourse with my husband again too.  

[ontariocanada]

I am actually seeing Dr Shenassa which is partnered with Dr Singh.  I was told that Dr Shenassa is doing the surgery because of the bowel involvement and that is his specialty.  I was also told that Dr Singh consults/assists with severe endo cases

[ticked]

I should also say that I had frozen pelvis which it sounds like what you have. With a good surgeon this can be done without removing any organs. Please don't accept that as the answer.

[ticked]

Dr. Singh is the best in Ottawa I am wondering if it is him that you are seeing. I live around the toronto area and I can contact Dr. Singh and find out who else you can see but he is the best one out there. Let me know as he is worth the wait.

[ipurr2]

I had varicose veins develop in my left leg only...it was funny too because I had mentioned to Dr.'s through the years (before diagnosis) that I felt it was al connected and they looked at me like I had a 3rd eyeball on my head....but then when I went to see the specialists she had mentioned it being seen often in us endo gals...so that was enough confirmation for me...now the pt's are actually saying it too...lol...things I figured out long ago...on my own...;)
I am glad you are seeing a TRUE endometriosis specialist...
the list of TRUE specialists I have for Canada are only 3...and 2 do not do bowel endo...so to me...I would be leery because if disease is left behind, problems will continue...

Alberta:
Dr. Liane Belland (Calgary)
[phone] Did a fellowship in New Zealand studying endometriosis and excision and has a colorectal surgeon to assist with cases involving the bowel.

Dr. Terry Unger (St. Albert) but does not do cases involving the bowels

Dr. Christine Williams - British Columbia (Vancouver)

no contact info...just on a list from a VERY reliable sourcing...;)

So I do hope yours is Truly a specialist...ask ALOT of hard questions...without trying to make him feel like he has not clue...
ask questions like:
do your cut or burn the lesions?
can you explain to me the different colors and what they mean in regards to managing them...
will you put me on lupron (or any drug such as that one) if the answer is yes...this is NOT a good sign...
will removing my female organs kill the disease? Again...if he says it will...RUN...

Anyway...hope this is all helpful...and if you have questions...let me know...I will do my best to help you get well! :)

[ontariocanada]

I am seeing an end specialist actually, referred to him by obgyn who says he is number 2 in Canada.  I have not met him yet, was told by obgyn that he would remove everything but I obviously don't know if that is true or not.  Did you ever get varicose veins in your leg from this?  I have developed it in my right leg and most days I would love to cut it off

[ipurr2]

yes ~ I have had my organs glued together 3 times thanks to endometriosis...I would NOT let them remove everything (ovaries, uterus and so on) I allowed this and still had endo...so the second to times of my organs gluing together was after they removed my female organs...I have now lost all my female organs, appendix, 1/2 my colon, my gallbladder, part of an adrenal..it's been on my ureters, diaphragm, bladder, bowels....and all this AFTER they removed my female organs...the only way to get rid of endometriosis is to have excision surgery with an endometriosis specialist as they are the only ones with advanced training to see all the different types, colors, forms of endometriosis...to the untrained eye chances are HUGE that disease will be left behind and you will continue to have pain and endometriosis...so insist on an endometriosis specialist so you don't have to spend half your life trying to "fix" yourself like I have had to do! With a true specialist you can feel good again...without...it's doubtful and removing your female organs will NOT cure endo...it didn't for me...although that is what I was told too!