I have been diagnosed with stage 4 endo have leg,hip and back pain surgeon said if I have hysterectomy could end up having colosotomy

Hi I,m 57 and recently had a lap to remove ovarian cyst but was diagnosed with endo stage 4 and cyst couldn't be removed I was told I would end up with a colostomy without any clear explanation I have back leg and hip pain resulting in a limp for the past few months has any one had similar experience . Asked for second opinion

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  • A friend of mine had a very similar situation and she did end up with a stoma bag after having a hysterectomy but everyone is different, good luck xx

  • Thanks I am looking for a second surgical opinion before making any decisions

  • As far as I know there is always a risk with Hysterectomy and even Laparotomy of needing a colostomy afterwards if there is damage to the bowel. In some cases I do believe this may be able to be reversed at some point. Get definite details from your doctor. Good Luck xxx

  • I know some women have had their cysts drained rather than removed if removal was too tricky. Others have had complex surgery involving a bowel resection by a bowel surgeon, which is a two part op. First they remove the icky stuff nd fit you with a colostomy temporarily while the bowel is healing up then later the colostomy is removed and your bowels can then take over doing their job again.

    It is definitely a case for specialist endo surgeons and specialist bowel surgeons to tackle together.

    It counds like the cyst has developed and fallen down the back of the uterus in what's called the POD (pouch of douglas) and become firmly stuck to the bowel and the uterus in that POD gap. The pod is one of the most common sites for endo cysts and endo blood to accumulate as it cannot escape. We women have design faults.

    Have they left your ovaries intact or taken them out?

    If you still have periods, then removing the ovaries would at least stop your periods, and ovarian cysts from forming, though it doesn't cure endo or stop endo cysts.

    Another option is to have the lining of the uterus lasered out.

    But as your main symptoms seem to stem from the location of that troublesome cyst, it does sound like major surgery is the only viable option.

    Try and get yourself refered to one of the Endo specialist centres around the country for a 2nd opinion, as they will regularly work with specialist bowel surgeons on tackling this very issue.

    Having a colostomy bag fitted is not that unusual for cases where endo is embedded in the bowel and causing problems. I've read on many cases where the bag is not a permanent feature but a temporary respite while you recover from a bowel resection, then a few weeks later the colostomy bag is removed so you can start using your bowel again. It does of course depend on each individual case.

    It is not the end of all options when one surgeon says he won't do that kind of operation. It does require the right expertise from gynae and from bowel surgical teams.

  • Hi Mollie, I am sorry to read that you are under so much stress at the moment. I am 34 and have recently had a colostomy reversed. My situation is complicated. However in summary, my lap went wrong and my bowel ruptured a few days later. As result I had a colostomy. I thought it was the end of my world. I was embarrassed, ashamed and terrified of how much my life would have to change. However, I was so wrong. Although it was not an easy ride, a period of adjustment and learning new routines and there were actually times I forgot I had it! I went swimming, I ate and drank more or less what I wanted, I went to work and did everything I did before the bag. I was then changed to an ileostomy which I found harder but doable before being returned to 'normal' last December. What I guess I am trying to say is I have been there and a colostomy does not have to ruin your life. The stoma nurses are the best in the world and provide advice on everything, from diet advice to sexy outfit companies that specialise in ostomy wear. If you do need a colostomy, you will not be alone. I really hope your treatment goes well and that you don't have to have a colostomy, temporary or otherwise but of it does come to it, you can do it :-) good luck hun x

  • Hello there Mollie, I hope I will be in time to answer your question.

    In 2008 I had a Total Abdominal Hysterectomy and because of the damage endometriosis did with dense adhesions and multiple cysts, I had to have partial bladder rescetion, and partial bowel resection. The bowel resection resulted in me having a 'temporary' ileostomy that was to be reversed six months later.

    I was heavily sedated for 12 days because I had to have another operation almost immediately after the Hysterectomy when they realised my ureter tubes were failing (the tubes that connect the bladder to the kidneys).

    In 2009 the Hospital attempted to reverse the process, but unknow to them I had a cyst behand the wall of the area the operated on and it ruptured and went septic.

    They had to perform a permenant ileostomy in an emergency operation. I was left with a permenant ileostomy on the left side flank of my navel.

    I must press on the issue that all women are very different in all outcomes of every operation, and what happens to one woman doesn't neessarily happen to another women.

    I just happen to have a lot of bad luck after every operation- it must be my immune system.

    (Or rather the lack of!)

    Please do not be put off from having what could be an essential operation.

    Your consultant wouldnt suggest surgery on your bowels unless he thought it was very necessary to do so.

    If I didn't have the surgery I had, regardless of the disasters I experienced, I wouldn't be alive today.

    I had such horrible dense adhesions and cysts obliterating the bladder and bowel area I was lucky to be alive.

    Having a stoma is not as horrible as it sounds, and if you are experiencing severe problems with your bowels that they suggest surgery, trust me, having a stoma is more of a blessing than a curse.

    Stomas do not hurt, they do not have any sensation whatsoever. Not all stomas are permenant, they prefer to try to attempt to reverse the process so that you can use your normal bowels again after your bowel has healed. They do a series of investigations to make sure you have healed internally before they operate.

    Another benefit of having a stoma is that you don't have to pay for prescriptions for medicines, because stoma patients have to receieve prescribed equipment on a regular basis to manage their continence of the bowels.

    You also may qualify for a low rate care component whilst the Disability Living Allowance is still in force, as you would need to have constant care responsibility needs regarding the stoma continence.

    This all will become clear if you do have a stoma as a stoma nurse helps with everything in the first week.

    I hope this information is helpful xx

  • PS just another info thought has occured in my brain that you may be able to suggest to your gynae that I recently found out from mine.

    My gynae is a consultant expert in the endo field and is a professor.

    He recently did an internal examination and suspected what I felt I already knew, as all MRIs regarding the spine came back normal - he said that he suspected there was endometriosis nodules wrapped around my sacrum, which is the bottom of the spine.

    He remarked that the left side of the sacrum was more sensitive and inflamed than anywhere else, which made sense as I suffer with excruciating low back pain, leg pain and pain that reaches from the sacrum to the hip level.

    I am to have another MRI, this time concentrating on that area, and I am hoping he will see something on the MRI scan as endo doesnt always show up on scans.

    This he told me himself. So if they dont show up, I am thinking he may want to do a Laparoscope or something to see if there is endo in that area.

    The thought of another operation scares me something rotten as I always end up having an infection for some reason afterwards!

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