Hemmoratic Cyst High risk for surgery

[sarag123]

Please Help! Grab a cup of coffee because this is gonna be a long posting. I am 40 years old and had a hysterectomy 2 years ago. The hysterectomy was because of Stage 4 endometriosis.  I have had endometriosis since I was 19 years old, have had 2 laporatomies and 7 laparoscopies. When I had my hysterectomy, they were able to leave my right ovary.
Two weeks ago I had acute pain in right lower abdomen and went to ER thinking appendicitis. US revealed a mass over 8 CM.  Initially, the ER doctors said that it would have to be removed immediately, (within hours), they said it looked like torsion, then the OB/GYN Dr. said that due to my extensive surgical  history and based on the reports from the specialist that did my hysterectomy, that it was "too risky" to remove the cyst. The concern is that unless it is "life threatening", the risk of the surgery is to great They said it was likely a hemmoratic cyst, called it a "complex mass", possible endometrioma, and debated whether it was torsed or not. They kept me two days on morphine, discharged me with hydrocodone (which is apparently a narcotic) for pain and also Ibuprofen.  They scheduled a repeat US to take place 8 weeks later.  After getting out of the hospital, I stayed home from work for 1 week, and then returned. I was taking the Hydrocodone and Ibuprofen every 4 hours at first, then tapered off as the pain lessened.  Then 2 days ago, the pain started to increase.  So it's been 13 days since I was admitted.  Last night it woke me up and the medication isn't controlling it.  I don't know why the pain is suddenly increasing, and I don't know why they are leaving this mass inside me!  Has anyone been through this?  Does anyone know why the pain is worse and what I should do?  I don't know what risks could be keeping them from taking it out.  Has anyone had a mass/cyst this large and had it simply go away?  Any help would be greatly appreciated.  

[MarieMichele]

It's a long story!  I documented it in the "about me" section of my profile.

I understand the loneliness and the fear.  That's another reason why I'm here.

There are other great surgeons to be found.  My gyn found my problem and referred me to the same gyn/onc she sent her own mother.  A "doctor's doctor" in other words.  What you want is the surgeon a doctor would go to if having the same issues.

[sarag123]

I am thinking I should get another opinion.  My dr. is at University of Michigan, which is a good hospital, but maybe I need to go elsewhere to see.  The original surgeon was very good, as he specialize in robotic surgery.  The surgery actually took 8 hours because apparently the endometriosis and scar tissue had actually "glued" organs and abdominal cavity together, and he had to spend hours seperating everything, as well as re-section the bowel and vagina.  So, I understand the surgeons hesitation, however, I am only 40 years old, so it scares me to think that I am so high risk!  I don't want to have surgery of course, but I don't know when and how this will resolve....
I just retrieved my discharge paperwork and the abnormal results stated: "large (8 cm x 3 cm) right ovarian cystic lesion, most likely hemorrhagic cyst," with principal diagnosis: "right adnexal mass".  
Thanks for writing back and forth with me today.  It's very lonely to be laying in bed, in pain, and frustrated, and scared, and angry, and on and on and on....
Tell me what has happened to you that lead you to this board.

[MarieMichele]

One thought.  I think you may need a more skillful doctor at this point.  Can you get referred to gynecologist/oncologist?  Don't let the fact these are cancer doctors scare you.  They have more years of education, and are far superior surgeons.  They can often do the harder gyn surgeries well.

It's a shame the ovary had to act up on you. There are great reasons for keeping them but nobody can ever predict how well they will behave.

[sarag123]

Thanks for the reply. My personal opinion about the nature of the cyst is that it is not hemmorytic but more likely an endometrioma because of my history of endometriosis and because my hysterectomy was due in large part to the discovery of a endometrioma that had grown to 3 cm or more (can't remember) and had grown and lodged into an area of both my bowel and vaginal wall.  In fact, the doctor had to re-section the areas after removing it.  Sadly, the surgeon has moved and I am being "followed" by one of his young partners.  So, if it is an endometrioma, I wouldn't think it would break down on it's own.  My husband really wants to take me back to the hospital today, but my fear is that they won't do anything...maybe admit me and give me morphine, but not fix it.  The only benefit would be to get another ultrasound, but still...then what?  Should I go? Should I stay home? Yikes.....
I am taking the medications and have the heating pad.  Staying off my feet is helping a bit too, but I work in a clinic and am on my feet all day, so it's not easy to work with this pain.  I am home today though!  I really regret leaving that ovary in me.  I wonder if I should have just had them take it out.  I am also concerned that in two years I could develop such a big cyst.  (or complex mass or endometrioma, or hemmerytic cyst...LOL)
I have two children (11 and 12) and I feel badly for them because they are so worried about me and know that it is likely I will have to go back in the hospital.
I

[MarieMichele]

That is an upsetting dilemma.  I don't know enough about what so many surgeries can do to a person, but it seems the doctors' main concern is how many past surgeries you had to generally the same part of the body and not wanting to risk yet another surgery.  Probably because of scar tissue which makes future surgeries more difficult.

Then you have doctors not agreeing on what should be done or what the cyst is doing.  Sounds like kids fighting over a bad call by a referee at a ball game.

Whether this can be resolved without surgery depends much on the type of cyst and on the doctors correctly characterizing its nature.  

If it is a hemorraghic cyst it might be already breaking down (which explains the pain) and just has to be watched. Whether it is leaking blood or fluid, the body has to reabsorb it, and these fluids are in an area where they don't normally belong, creating pain.  Heating pads may help with the pain where the meds are not helping.

Honestly, I'm only guessing at explanations to your questions based on what I've heard from others' experiences.

Do you have access to the doctor that did the hysterectomy or to a regular gynecologist that you know and trust or are you limited to the ER hospital doctors?

I hope you get a safe non-surgical resolution.  You've been through enough already.