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.

 

 

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9 Comments

  1. I’ve had a hysterectomy 2017 but she left my left ovary now I’m hsving multiple cyst in my left ovary had surgery three wks ago but he wasn’t able to remove cyst just drained it so went to an ultrasound for the 10th time and it shows I still have multiple cyst on that ovary he says I need to see another surgeon because he is suggesting i get surgery and remove the cysts and try to safe ovary. I’m feeling lost and back at square one! I’m worried to even think of another surgery I don’t understand why can’t theh just remove it ? Is it because it’s attachef to wall can I get a treatment to shrink it? What can be done? I’m 36 and feel so sad and worried all the time

    1. It has been a while since I wrote this article. I had another surgery after and a radical hysterectomy. The pain still hurt after this article was written, for some reason it is my left vaginal wall that hurts when having sex. I have not had sex in 3 (Since my hyster) and I don’t know what it would feel like but I also don’t want to know. I don’t think my body is able to have sex in general. It has always hurt even after all these surgeries. The fact that I want to be alone and not have sex with someone feeds into the anxiety I have due to sex and pain. I am so petrified to even try and I am also insecure about my vagina since the hyster as well. Not sure if any of this helped or not. I know PT is good for pelvic floor dysfunction but I don’t have money to do that so it is not an option for me.

  2. Just read your blog. I was meant to have a hysterectomy last Friday but they didn’t do it, due to right ovary and tubes are adhered to by bowel and the lefts one adhered to my pelvic wall. They did obliterated my pouch of Douglas (never heard of that before). I have tried,tablets,the coil, hysteroscopy and the and ablation to ease my heavy constant bleeding and the hysterectomy was my last hope. I’m 49 and after the failed surgery they said they would give me injections to start the early menapause and start hrt,and that was it, NOTHING ELSE AT ALL, NO INFO, JUST COME BACK IN 6 MONTHS !!!!!
    AFTER 4+ YEARS OF HELL, I feel like I’m back to square one again.
    Any ideas would be most welcome..

  3. Vinu- message me on my blog so it comes to my email and I can give you more helpful advice as there is a lot to know when it comes to a first surgery and you want it to count. Let me know if you have any troubles. I will respond tonight when I get home

  4. Hi Angela,

    Hope you are good.

    My Name is Vinu.i am from Bangalore India.
    My wife took Pelvic scan today due to severe pelvic pain for last 6 months followed by UTI and Today, during the scan they have observered her left ovary is under uterus and doctur termed to be entometriosis.

    To know about it more details ,i has gone through ur below blog which u have written about ur treatment on the same condition with different symptoms so can you please help me with best treatment for this .. as per my Gyn first suggestion is to go with hormonal pills (Now she is taking Duphastson)..

    so can you please suggestion which is good method pills or surgery ?

    Your reply would be really helpful for my further proactive moves.

    http://www.hormonesmatter.com/angelas-endometriosis-post-operative-update/ is behind

  5. Thanks for you feed back the both of you 🙂

    Charline I am sorry that this has happened to you and it is so common because of the lack of understanding or lack of Endo specialist. Endometriosis is so underdiagnosed and so many women have it seems almost unbelievable that we are still suffering so much and no one is trying to help us. That is why I am an advocate because we need to be heard not just for us but for generations after us. xoxoxo

  6. Thank you for your testimonial. I had a very similar experience after my 1st adhesiolysis feeling under-informed & overwhelmed. I agreed to a treatment of Lupron–a chemotherapy drug used to induce menopause (I was only 29yrs)–Anyone reading this…DO NOT AGREE TO LUPRON TREATMENT without significant research and consideration. It did not help and made things worse. Also consider avoiding hysterectomy and oopherectomy–major risk of bone degeneration and loss. I am now getting treatment with Chinese medicine and Natural Allergy Elimination Technique (NAET)–seems to be helping. Keep up hope and thanks for your insights.

  7. Thank u for posting I thought I was just crazy at this point no one would listen and help. Been trying to get help for over 10 years and ended up an addict because of everything they gave me just trying to live life today and its really hard ob just gave me answer andometosis thank u for posting

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