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Endometriosis and Hysterectomy Part III

Aug 21, 2014 - 0 comments

A week later, I was so happy the day I was told the catheter would come out. My nurse saw me there and let me come in before any patients showed up. She hugged me. She knew how much she meant to me. Like I said before, she was my angel. As for the catheter, I knew that all my Endosisters and friends were chanting “Free the pee!” and I did, not a lot, but enough for me not to have to keep it in.

What the Surgery Revealed – The Endometriosis had Spread

After surgery, I was only told that my pelvic wall was removed, stents put in to free the ureters and I had recurring rectovaginal endometriosis. I was shocked to be honest, because I didn’t expect to have the endometriosis recur, let alone rectovaginal endo again. The previous doctors had denied the existence of my endometriosis for so long; I had come to believe them. Time ticked on and I was anticipating my follow up because I wanted to know if I had adenomyosis or not.

The surgeon came in and began to tell me further what he had done as well as gave me a copy of my surgery report.

There were multiple small fibroids, a cervical polyp (benign), rectovaginal endometriosis, right ureteosacral ligament nodule, deep infiltrating endometriosis of the sigmoid colon, deep bladder endometriosis and massive scar tissue on the right side. I had to have my pelvic lining removed, I assume because of the deep infiltrating endometriosis as well as the ureters that were embedded into the pelvic wall. When I asked him if it was because of the ureters, he said, yes. I also had an upper vaginectomy to remove the rectovaginal nodule. I had focal endometriosis in left fallopian tube, left ovary as well as the cervix. I had a modified radical hysterectomy but I am not quite sure what modified means unless it has to do with the vaginectomy that was done.

He had put stents in so that my ureters wouldn’t be damaged and that is most likely why I was bleeding blood for that long. Another cystoscopy was done to rule out IC (interstitial cystitis). He also did a enterolysis to make sure there wasn’t a bowel obstruction, as I have massive scar tissue that always sticks to my 3-inch laparotomy scar from when I had a bowel resection when I was seven years old.

In a way, I was happy because I knew it wasn’t all in my head, but it was not what I expected since I was told I only had superficial endometriosis a year prior by a surgeon whom he trained. What happens if I actually have aggressive endometriosis? Was the hysterectomy a mistake now? I am going to say no, because I definitely feel I have mental closure on this.  We’ll have to see how the physical symptoms of endometriosis change over time.

11 Week Post Hysterectomy – Bring on the Hormones

The first week after surgery, the hormone hot flashes were not too bad. I had a few, and to be honest, I expected them to be a lot worse. Over the next couple of weeks, the cold flashes began. These were not fun. Hot flashes I could handle, but no matter what I did I could not get warm, especially when they happened in the middle of the night.

After a month or so, both the hot flashes and the cold flashes died down to the point that I felt actually good. I now knew what was uterine pain and what was bowel pain too, so that made a huge difference for me.  Urination was still difficult, but I have been seeing a urologist for that, and hopefully, it will get better.  My bowels are better. I no longer have rectal pain, although I do still have some constipation.

Post hysterectomy, I noticed huge black bags under my eyes and new wrinkles. Maybe I just didn’t notice the wrinkles before because I was so run down but where did the bags come from? Wow. I did not expect those changes. Eyeliner and mascara help a lot. Also, something I did not expect, my nose is so dry that I have multiple sores in there. I have to keep lubricated and at times use hydrocortisone because it is so painful.

Sex….. Well, it still hurts. I am not sure if it still hurts because I am drier down there or that part of my vagina was removed because of the endometriosis. For now, sex is just not happening. I will wait a little longer to see if it just needs to heal some more.

Post Hysterectomy Mental Health

I have to say it was the mental health issues that really kicked me right down. Prior to having surgery, I was diagnosed with complex PTSD, generalized anxiety and major depression and so I was expecting some of what was going on now.  I had been on Prozac for three months prior to surgery.  I still do not know if it was menopause or the Prozac that sent me right over the edge but something did. Post hysterectomy, I began having vivid visions of slashing my wrist, and also cutting, but looking for places to hide the cuts so my husband and daughter couldn’t see. I went back to my general practitioner several times to tell her what was going on but she just wanted to keep upping the dosage of Prozac.

About three weeks ago, the vivid visions started to again. Only this time I could see myself opening a wine bottle and drinking right out of it. I was outside my daughter’s day camp, in the parking lot.  I could not sleep. I didn’t feel like it was the hormones, because even now I rarely get hot flashes. I was mentally breaking down and it was only getting worse by the day. In my mind, I know that I wouldn’t kill myself because I could never do that to my daughter, however, the thoughts were so intense I drove myself to the ER to be assessed. At this point, I was thinking I was bipolar because I was on a manic ride that showed no sign of stopping any time soon. I didn’t feel like anyone understood what I was saying and at times I was even stuttering my words trying as I tried explain. It was like my mind went blank.

Eight hours later, I was released with pamphlets, a script for Seroquel and an appointment to follow up with the psychiatrist. Right away the Seroquel helped and it was good because it didn’t give me the wine-like relaxed effect. I hoped it wasn’t as addictive like lorazapam. I started to gradually lower my Prozac to 20 mg then finally just came right off them because I really felt the problem was with the Prozac.

I have been off of the Prozac for one week. I am almost three months post op and I am starting to feel better. I am no longer having the visions of killing myself.  The psychiatric symptoms were frightening.  I hope that this never happens again. I think the symptoms were from the Prozac because when I came off of the medication, they disappeared.  I hope it wasn’t the hormones. I am not sure what I would do if those visions come back.

As far as my health and endo pain are concerned, it has been a slow recovery. I am still not sure whether this will stop the spread of endometriosis in my body, but I know this was the right decision for me. I am tired of the pain and suffering this disease has given me. I want it to be over.

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