My Surgery – Endometriosis

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Part Two of My Story: Surgery for Endometriosis

I think before my surgery I felt I needed validation for my own mind as well as from my family that this pain was real. For some reason I knew I had Stage IV just by the symptoms I had.

As the surgery approached, I had a consult with my surgeon. I was given the rundown of what to expect and what he was going to do. He told me he would remove all of the endo scar tissue and do a presacral neurectomy (remove the nerves that send pain messages to the brain). However, he failed to mention to do a bowel prep. Because I was researching endometriosis and other disease all those years, I knew to do it anyways and thank God I did.

The surgery was 4-5 hours long, but I was told prior that it would only be 2-3 hours. So needless to say, my dad was up-in-arms and in a panic as to why it took so long. I came to find that out once I was in the recovery waiting room. I just told them to tell him that I was fine and not to let him in. It would cause me too much anxiety, as he gets too worked up.

Post Surgery Problems

While I was in the recovery room, I realized that I couldn’t pee. I was in so much pain that finally after an hour they put the catheter back in. I swear I felt like my bladder was going to explode. I was put on a Morphine IV drip, but the pain was so intense I swear I thought I was dying…literally. I wasn’t allowed to leave the hospital until my bladder emptied so I had to explain to them that my bladder never empties ever, so they let me leave the next day.

What the Surgeons Found: The Extent of my Endometriosis

The surgeon’s assistant came in after the surgery and told me that the doctor reviewed the surgery with me. I had to correct her by saying that if he had reviewed it with me, I was not coherent. I felt this was pretty odd – why would you talk to someone when they were not even awake?

She began to tell me I had stage IV Endometriosis and described to me that everything inside of me was wrapped behind my uterus and stuck to my bowels. She said they made 4 incisions due to the prior bowel surgery and they did excision for most of the surgery but used laser lysis for extensive bowel and pelvic adhesions.

The list of procedures was shocking. They did a bilateral salpingolysis, ovariolysis, right ureterolysis, restoration of the cul-de-sac, deep pelvic floor dissection of recto-vaginal septum, laparoscopic resection of colonic intestinal lesion, resection of sigmoid mesenteric endometriosis (which was benign), bilateral ovarian cystectomy, laparoscopic presacral neurectomy and intra-operative sigmoidoscopy. There was extensive scar tissue from my bowel surgery when I was 7 years old, so that took a lot of time to remove.

With all of this surgery, how was it that no one could figure out what was wrong with me for all those years? Wouldn’t it have been obvious if they had looked?

Recovery

Thanks to all my BBBC friends they told me what to bring to the hospital and what to expect for recovery. I was well prepared, however I was a single mother and it was hard for the first week as my daughter was 4 and needed a lot of attention. My mom took her for the week, so that helped out a lot. I made sure to bring mints for after the surgery when your mouth is pasty, a pillow for the ride home for the bumps on the road, lots of movies and magazines for the week as you don’t do anything but lie down for that whole time. One thing no one ever mentioned was passing a blood clot the size of a book!! I was completely freaked right out. It happened once, but never again.

Post-Surgery Hormones

I was put on Lupron right after the surgery as well, with add back therapy. It took about one week for the pain to leave my shoulder from the gas from the surgery, two weeks to go back to work and about a month or two to go back to normal. The Lupron did not sit well with me at all. I had immediate depression, joint and muscle pain, and chronic headaches. I stayed on it for three months because that is all I could tolerate from it. I went back on the Marvelon and have pretty much been on it up until recently. It took a very long time for the Lupron to get out of my system.

Back to Dating

I have been a single mother since my daughter was five weeks old and I didn’t really date.  I didn’t know if it still hurt to have sex or not. Since I lost my virginity, there has always been pain with sex. It has never felt good at all and was almost like torture. In 2010, I met my future husband and we started having sexual intercourse. For the first time in my life, I had absolutely no pain whatsoever. That came to an abrupt end a month or two later, when I started to bleed during and after sex.

To be continued.

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10 Comments

  1. Gosh i cried reading this. The story sounds like everything i’m going through. MY bladder I sleep about an hour a night cause i feel like i have t urinate non stop I swear i have IC but i dont. My bowels another story to embarrassed to talk about. I had a C sec and 2 ectopics and my Appendix removed and it did this to me. I;m so lost i don’t know where to go. every surgeon says they wont operate cause of the risk. I’m 38 yrs old I don’t want to live like this

    1. Where do you live? I can help you find a surgeon that is skilled and could help you in your area. You don’t need to keep living this way and I feel your pain.

  2. Angela I stumbled across your story while researching Endometriosis on Google. I was just told yesterday that my OBGYN wants to do diagnostic laparoscopy surgery because he feels like all my pain is Endometriosis and I possibly have an embedded right ovary. I had an hysterectomy in 2009 and diagnostic laparoscopy surgery in 2013 to try and diagnose where my pain was doing from and found nothing. Can Endometriosis come on in 3 years I wonder. Anyways thanks for sharing you story and I will be reading them all. Hope all is well with you now. Dawn

    1. Dawn,

      Yes it can come on after three years. When you say diagnostic it sounds like they just went in and checked and came back out . Is that the case?

      I can tell you from experience that it’s possible you have Endo and the surgeon is missing it because he might lack the knowledge of different colours and locations of Endo. I was told by an unskilled surgeon that I had superficial Endo only to find out it wasn’t it was actually very deep.

      I would suggest to find a top skilled endometriosis specialist so that you know you are getting the best surgery as well as skill.

  3. Jacqui you made my day. Thank you.

    I wish for you to find someone who will understand what you go through. I am recently separated so I completely understand what you are looking for.

  4. Thank you so much. That was in 2007 that I had that surgery. I am over a year post op radical hysterectomy. Not on HRT or anything and I am happy with how I have no pain anymore however I have Fibro so I am fighting another battle on top of it so that isn’t fun.

  5. Hi Angela
    I dont know whether to be happy or sad. finally there is someone who has been through the same as me. I have sacral endometriosis and on the bladder. Even though i had 8 operations the bladder pain makes it impossible for me ever to be married. I also have to eat very small heloings because i have a lesion in the appendix area.
    After breaking up with Joseph, i am heart broken and cannot ever imagine a man who could withstand my anguish.
    on the bright side i have the cutest cat in all the world called Putdie.
    warmest wishes ever
    Jacqui

  6. I think we live parallel lives…. I’m recovering from literally the same extensive surgery… Even on the same BCP now! Recovery has been really tough … Soooo sore!

    Here is to happy .. Healthy years ahead!

    Christina in Toronto Ontario Canada

  7. This is such a terrible disease that desperately needs a cure!!! I was finally diagnosed with Endo. last August and had a LSH-BSO and later had to go back for my Cervix(They put me on estrogen after my hysterectomy which allowed my Endo to continue to grow). I was diagnosed with Interstitial Cystitis in July of this year(which is the “EVIL-TWIN” of Endo.) I have also recently been having Endo pain once again. Endometriosis can create it’s own estrogen even after a total hysterectomy!!! I am sorry to hear about your recent problems. Both these diseases desperately need a cure!! I will keep you in my prayers!! Sending you HUGS!! Jennifer

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