endometriosis and hysterectomy

Angela’s Endometriosis Post Operative Update

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It has been two weeks since my endometriosis surgery and I feel better mentally, physically and emotionally. The surgeon was supposed to remove my left ovary and both tubes and a possible hysterectomy if there were complications. Remember, in my last post I begged for a hysterectomy to stop the pain. She didn’t do the hysterectomy, remove the ovary or tubes. Here is what happened.

 

In Post Op

When I woke up, I was curious as to what they found. I wanted to know if the hormone pills worked for the last seven years; if they had kept my endometriosis at bay. I also wanted to know if there was a bowel obstruction because then I wouldn’t feel crazy. I was doing enemas three times a week for the last three years because I couldn’t go. I wanted to know if there were adhesions on my bladder and ureters as I was having serious issues in that department including peeing myself because I had no sensation to go. I pretty much knew that bowel was stuck to my ovary on the left side and the ovary was also stuck to the uterus causing sex to be so painful.

There were complications. I didn’t have the hysterectomy as intended. The doctor didn’t take my tubes or left ovary. My right ovary was embedded into the pelvic floor which she did not detach as she told me it was “really, really, really stuck”.  I had a lot of adhesions which were causing the bowel obstruction just like I suspected. I also had adhesions on both my ureters and bladder. My left ovary was stuck to uterus and bowels and the uterus was stuck to the colon. That was set free. She found only superficial endometriosis. This means that either all the injections and various pills I had been taking all this time somehow worked or it was the adhesions from the previous surgeries that were causing all of the pain.

As I lay in post op, as I have before many times, I asked the surgeon’s assistant for the details of my surgery; what to expect over the next couple of weeks. The surgeon was too busy to bother.  Her assistant wasn’t very helpful either. I thought about all the women that have surgery for endometriosis and how helpless they feel afterwards. The doctors really don’t tell the patient anything – mine didn’t. (I’ll be posting an article about doctor etiquette next week). So I asked “Do I keep taking the pill continuously?”, “Why wasn’t the ovary detached?” Why was nothing taken as we discussed?”  I learned nothing. Even with the phone call to the surgeon a week later. I guess I have to wait until our follow up appointment on April 15.

Recovery

Right now my bowels have been somewhat great. I am going every day or every other day. It did take a while after surgery. That made me nervous, but I seem to be doing okay now. I have random bowel pains but I suppose that could be the healing process.

With my bladder there was a 60% change. I am no longer peeing myself. I no longer have the urethral pain I was having or spasms and I am not nearly going as much as I was prior to surgery. However I am still going at least 15-20 times a day not 40+. I am still happy with this.  It was really controlling my life and I couldn’t go anywhere. It was frustrating. Now at least it’s a little better.

I still have to wait to have sex so I am not sure how that is going to feel and in a way I am anticipating it. I am also nervous and scared that it won’t change a thing.

The healing process itself was very quick. My first surgery was extensive with deep pelvic floor dissection and had some complications with my bladder, but this time I was good. I could pee right away which was a great sign. The pain was not nearly intense as the last time. I was pretty much ready to go back to work in three days, whereas last time I wasn’t even okay after two weeks.

All in all, my recovery is going well. I am anxious to learn what the doctor found and what my prognosis is. I will keep you posted.

 

 

Hysterectomy or Not – Angela’s Endometriosis Update

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Well the time has come and I will be undergoing my second surgery for Endometriosis and PID damage February 28th – a hysterectomy.

My health has been alright, all things considering. My husband and I haven’t been intimate for a while as it’s extremely painful to have sex and the medication I am currently on (Cymbalta) has lowered my sex drive almost to nothing. If we do have sex it takes extremely long to orgasm and sometimes I just can’t at all. That is very frustrating.

I haven’t had too much pain lately in my pelvic area and that is making me nervous.  It makes me think that I should hold off on the surgery. However my bladder and bowels are bad and I need that looked at for sure. I feel a lot of scar tissue up near my liver and diaphragm where the endometriosis was before, so I am pretty sure the scar tissue is just all over the place.

The surgeon is making me extremely nervous. Her last words to me were “I am going to take your tubes and your left ovary, if there are complications I will open you up and take it all out.”  When she said that, I just sat there. I couldn’t get any words out. I have asked for a hysterectomy so many times before, but have been refused. Now I am not prepared if she does one. I am more confused than ever.

I have researched hysterectomies and endometriosis for five years. I told myself that when I turned 35, if my endometriosis and all of the other issues were still here, I would have a hysterectomy. Well, I am 36 in June and no matter how much I have researched having a hysterectomy, I am still on the fence. Should I have a hysterectomy or not? There are so many complications and I wonder if a majority of my endometriosis is on my bladder and bowels what good would the hysterectomy do?

I had high grade cells removed from my cervix last year. Were these endometriosis lesions? Has anyone ever heard of this?  All in all, I want my uterus and cervix out. I am not planning on having another baby and at this point it is safe to say I am infertile due to the shape of my uterus and the damage done to my tubes from PID.

I get depressed thinking about how long it will be for me to go into menopause naturally and what if that doesn’t even help then? Yes, at 36 I want to go into menopause. I want the pain to stop.

This disease is terrible. I wonder what would have happened if they caught it when I first started to have symptoms. Would I have this many complications? Would I have the excessive damage of the deep infiltrating endometriosis that they removed with my last surgery? Would I have the nerve damage that I have now? Would my bowels and bladder be in better condition? There are so many questions, but I will never have the answers to them.

I think that if my bowel and bladder symptoms were not as bad, I wouldn’t be in so much pain. I wonder if the excision surgery removed all the endo and if the pain I have is from endometriosis or something else. I will soon find out. I think there is huge damage from the PID along with massive scar tissue that has obstructed or intertwined with my bowels, ureter and bladder. As for now, I can only sit and wait to see what happens. I go for my pre-op on February 20th so I can ask more questions then.

What do you guys think? What would you do if you were in my shoes? Hysterectomy or not?