kissing ovaries

Endometriosis and Adhesions

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In 2007 when I was finally Diagnosed with Stage IV Endometriosis I wasn’t expecting anything but “a diagnosis”.

When I spoke to the attendee after my surgery she said that there was massive scar tissue from a previous bowel surgery I had when I was seven years old. It had worked its way all the way up to under my ribcage. It took an hour to just cut that all down and that was just part of my Endo surgery.

My entire pelvis was frozen solid with adhesions. Everything was wrapped around my uterus including both of my ovaries (kissing ovaries). To this day I always find it funny that through the 10 or so ultrasounds and transvaginal ultrasounds they kept saying they saw my ovaries with “certainty,” even though each time I watched them struggle to find them.

From 2010-2012, I spent the years protesting adhesions on my bowels and bladder causing painful sex, bowel movements and urination. I went back to my surgeon at least three times. My surgeon told me I was fine and there was no endometriosis. Then on the next visit he said there was fluid in the cul-de-sac and told me to take Lupron. He said, if it goes away its Endo, if not then it’s not Endo. I went back a month later with no change in the pain but he didn’t do another ultrasound to see if the fluid was still there. He just said “It’s not Endo, its Neuropathic Pain Syndrome.” Needless to say I told him off and got an appointment with the Wasser Pain Management Clinic in Toronto. The doctor wanted to try me on different meds. (I was on Visanne which made me suicidal, gave me chest, neck and back acne and severe abdominal pain and Amitriptyline which made me really groggy, crave carbs and gain weight). She wanted to switch me to Gabapentin to see if it would make a difference. None of the medications help. If anything, the meds they gave me made my symptoms worse.

By the time I made it to the pain clinic, I was doing three enemas a week just to have a bowel movement and to not be in pain. I had a another colonoscopy and as usual it showed no signs of anything. They told me my pain was IBS and Endo. I had all the signs of interstitial cysititis (IC) but the cystoscopy showed no signs of inflammation in the bladder. So again the wait continued. I was peeing in my pants because I had no sensation to pee at times, then other times the pain was so intense I would vomit and when I made it to the toilet I couldn’t pee. The pain was out of this world.  It was interfering with my life and job in a big way because I couldn’t go anywhere if I wasn’t near a toilet in seconds. I was peeing 60+ times a day at this point.

December 2012 the Gyne at the Wasser Clinic finally agreed to do the surgery. I was told she would remove my left ovary and both tubes. Since I was no longer looking to have children, if things went wrong she would open me up and remove it all.  I was OK with that. I signed off on that.

When I woke up I wasn’t in a lot of pain like my last surgery and I got very little details from my attendee. I had to wait six weeks to see my surgeon and to get my results.  I was told there was Endo in the cul-de sac, adhesions on my right side on the bowels causing a partial bowel obstruction and my right ovary was embedded in the pelvic wall and she left it there. On the other side the ovary was attached to the uterus by adhesions and the uterus stuck to the sigmoid colon by adhesions. Nothing was removed like I was told, so I was extremely confused.

At my six week appointment she said she ran into difficulties with the density of the adhesions covering the ureter and ovary that was embedded into the pelvic wall and said it was too dangerous to remove unless she opened me up…Umm did I not agree to that before I went in? rrrrr. She said my uterus was nicked with a tool and I was bleeding out but they managed to stop the bleed.

Later, after not being happy with what she told me, I took to Facebook and asked Dr. Redwine some things about my results. He mentioned that the giant cell found on my bladder flap that was biopsied was carbon residue from the laser used in 2007. He said it acts as a splinter so that might explain the painful peeing and all the other issues I had with my bladder.

Right now, after undergoing two endometriosis surgeries, I feel the major battle moving forward will always be the adhesions that seem to grow like wildfire in me. A hysterectomy would not stop the adhesions, so it is something that I still have in the back of my mind but don’t think I will pursue unless 100% necessary.

There are many therapies for adhesions, infertility and endometriosis. One of them is Clear Passage Therapy, however, I don’t live in the US and I can’t afford the treatments but I understand that they have very high success rates.

My only other option right now is Yamuna body rolling. You roll on the ball slowly to break up adhesions. I know many women who have had surgeries and swear by this technique. This is why I have considered it. I am a work in progress and I don’t know what is next. It’s a watch and wait game for now.

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.