Multiple Surgeries on Endometriosis, Then Hysterectomy, Still Pain

Posted , 5 users are following.

Hi, I am new to this page and am praying for some advice. I am 42 years old with a 15 year old son and 14 year old daughter. At 19 years old I began having issues with endometriosis. In seven surgeries the endometriosis caused my appendix to be strangled, another time it caused a hernia, another time an ovary was twisted, etc. 

After having my two children my doctor strongly suggested that I have a partial hysterectomy. About two years later I was in agony again and he went in and removed my remaining ovary because it was full of cysts. I was relatively pain free until roughly 3 or 4 years later when I was experiencing extreme discomfort again. He went in again and said there was a lot of scar tissue that he removed. 

It has not been about 5 years. I have refused to see my gyn because I got the impression from him that the scar tissue could have been handled by someone else and since I can’t pop out anymore babies I am no use to him. 

Again I have been relatively pain free until 3 days ago. I wasn’t doing anything out of the norm. I was simply sitting in a chair drying my hair. Once I was done I stood up and it literally felt as though I had been shot in my lower right side. I sat back down thinking that whatever it was would go away but the only relief I’m getting is that the pain seems to come in waves these past three days. When the “peak” of the wave hits I’m in agony. 

I have always prided myself that I have an extremely high tolerance for pain, but this pain I cannot tolerate. To add to this, I have been getting extremely dizzy when the pain is severe and have to sit down immediately in fear that I might pass out. 

I had promised myself that I would not deal with my gyn again but I figured that since this was in the area of the surgeries he has performed in the past it would make sense to contact him again. I bit the bullet and contacted his office and explained my situation and as soon as the phone nurse heard that I’ve had a hysterectomy she couldn’t get me off the phone fast enough. She said the doctor was busy and none of the others in the practice had an opening anytime soon and I should just contact a general doctor. 

A) does this seem right to you?

B) has anyone else experienced this type of pain after having a hysterectomy so many years ago?

0 likes, 9 replies

9 Replies

  • Posted

    Praying someone has some advice. 
  • Posted

    No it doesn't sound right.  Apologies if I am saying something silly but did you actually have your appendix out when it got strangled with the endometriosis?  I had a burst appendix and it was agony with pains in various places, not even near the appendix at first.  I had to have my appendix out following various gyny opeations and always thought there was a link.  Have you seen your general GP in case this pain is not related to your hysterectomy?  If this was me, I would consider myself an emergency case and get to the hospital without delay.  If you are nearly passing out, this shows the severity of your pain and you can't delay and be fobbed off by your previous medics.  Again, apologies if I am not saying the right thing.

    • Posted

      Thank you so much for your response. It means more then I can ever express. The doctor had told me that when I had my appendix removed by him years ago it was because the endometriosis was strangling it. 

      I’m so disappointed with my gyn because I’ve been seeing him for years and I feel like I am no use to him even though I am in such agony. I think you are right that I need to find a GP. Thank you again for your input. 

    • Posted

      I am disgusted at your gyn on your behalf as well!  So glad you will be seeking out other medics, hoping as soon as you can.  All the best, thinking of you.

       

  • Posted

    Because the pain is that severe, I suggest you go to A & E, rather than wait to see a gp. It's been a while since your surgeries. It could be that you have something going on with your intestines, as well.  Please let me know how you get on.  

    • Posted

      Thank you so much Lynda. I dread going through an emergency room but at this point I think you might be right.  
    • Posted

      I am not in the UK--I can well understand your reluctance to go--but your severe pain indicates to me that time might be of the essence.  If you decide to go, don't let them give you pain pills, tell you to contact your gp "as soon as you can," and send you home.  Don't be fobbed off. xx  

  • Posted

    I think it's the place of a GP to begin assessing what is causing this current pain. It could be completely something non gynae hence I u Set stand the reluctance of Gynae just giving you an appointment on the face of a query as to whether it is even a Gynae problem. Are your bowels working completely normally in the way is your regular routine? GP's do initial investigation and eliminate things it won't be and then refer you to the appropriate specialty once indications are what expertise is required. You haven't got much Gynae parts left for it to be quite remotely possible for it to be another Gynae issue. If you can make it till able to see a GP then do that, or you will have to bite the bullet & present to an emergency room

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