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Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference? Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

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  #1  
Unread 02-28-2021, 08:59 AM
Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

Hi there,

day 5 post op and I'm eating and feeling better but very very tired.

I had a total removal of everything. I have had regular period with no complications all my life, at 47 started hot flashes every 45 minutes. Went on hormones and this helped. Started experiencing pelvic pain 2 year ago. Had ultrasound and mri and found nothing drastic. Felt bloated and still pain...2 months ago started spotting and then bleeding. Repeated ultrasound - thickened uterine lining to 12 mm. Did a Uterine biopsy - no cancer...3 abnormal paps and decided to do hysterectomy. After hyst. they found endometriosis on top of bladder. Was not severe but enough to cause all the pain. Has anyone here had endometriosis discovered during surgery and do you feel better now that everything is out? Did it affect your energy levels? I stopped the estrogen prior to surgery and felt better - now I'm off all hormones buy may have to recheck.

Thank you all,
Barbara
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  #2  
Unread 02-28-2021, 10:10 AM
Re: Compression Underwear and other questions

I knew I had endometriosis. I had a complicated surgery, as my uterus and bladder and parts of my intestines were all fused together with endometrial tissue. I listened carefully to my body, went slowly, and now, at 45, 6 years later, I’m in the (almost! Plus 10 pounds due to Covid baking and eating!) best shape of my life, and I feel awesome.
  #3  
Unread 03-02-2021, 05:32 PM
Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

  Quote:
Originally Posted by Ciaobarbara View Post
Hi there,

day 5 post op and I'm eating and feeling better but very very tired.

I had a total removal of everything. I have had regular period with no complications all my life, at 47 started hot flashes every 45 minutes. Went on hormones and this helped. Started experiencing pelvic pain 2 year ago. Had ultrasound and mri and found nothing drastic. Felt bloated and still pain...2 months ago started spotting and then bleeding. Repeated ultrasound - thickened uterine lining to 12 mm. Did a Uterine biopsy - no cancer...3 abnormal paps and decided to do hysterectomy. After hyst. they found endometriosis on top of bladder. Was not severe but enough to cause all the pain. Has anyone here had endometriosis discovered during surgery and do you feel better now that everything is out? Did it affect your energy levels? I stopped the estrogen prior to surgery and felt better - now I'm off all hormones buy may have to recheck.

Thank you all,
Barbara
Hi Barbara,
I had surprise endo to go with my fibroids. Clearing it out seems to have helped me a great deal. No more grinding pain in my lower back and down my legs! I’m almost 5 months p0st op. Hang in there!!!!
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  #4  
Unread 03-02-2021, 06:58 PM
Re: Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

Hello! I had endometriosis discovered during my hysterectomy.

I hadn't been diagnosed with endo previously, but I've been having hellaciously awful and painful periods the whole time I've been menstruating. I got the surgery because I wanted it and was sooo tired of being in all this pain all the time. The endometriosis was discovered during the surgery, which makes me feel so validated to know that there was an actual cause for all this pain.

I'm still in the recovery stage (my surgery was 3 weeks ago), but I'm stoked to be free of my periods and the attendant pain!
  #5  
Unread 03-03-2021, 12:40 PM
Re: Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

I've had suspected endo. all my life because my cycles were horrid, but it was not discovered for many years. Even though it is supposed to be very common in women, doctors seem to know next to nothing about it.
I had a total hysterectomy six years ago, and while it has relieved me of the horrid pain, not all pain is gone. In part because not all of it was removed, and also because adhesions are forming.
Hysterctomy is not a cure. I thought it was because no one told me. If all implants are removed it would probably be a cure. However, I think hysterectomy is the best treatment available.
  #6  
Unread 05-25-2021, 03:31 PM
Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

My endo was obvious during an ultrasound! It was so bad it was like tar creating a web of goo sticking all my organs together and my ovaries were so enlarged with endo cysts they were glued together! It was bad! Yes! After it was all removed I have been sooooooo happy and pain free! Literally pain free! Be gone endo! Be gone!
  #7  
Unread 10-22-2021, 08:10 PM
Re: Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

I had endometriosis excision but retained my uterus. The excision was a success in that it removed two obvious spots of pain and reduced my bladder urgency. I used to have pain upon initial sitting, during bowel movements, and during sex. The excision neutralized those three areas of pain. Unfortunately, visual inspection with the laparoscope indicates adenomyosis. So my painful periods and extreme bleeding continue.

Following with a hysterectomy just 8 weeks after the excision. Adenomyosis in combo is common for my age group: perimenopausal. So in my experience, the endometrial excision is effective at neutralizing pain provoked by the endometrial implants. But if you have other brewing problems within the uterus, the excision will only help with a minority of your pain sources.
  #8  
Unread 10-29-2021, 06:31 PM
Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

So glad you posted this!! I'm two weeks out of surgery ~ removed uterus, cervix and tubes but not ovaries. But same as you - they found endometriosis all over outside of everything - uterus, ovaries, peritoneum, fallopian tubes, bowel, bladder. I had been experiencing horrible periods and discomfort for years and they all blamed fibroids - and never looked outside of the uterus for endometriosis! This is my 4th Gyno who did the surgery and she found endo everywhere and had to remove adhesions all over as well. WHY can't they diagnose this stuff properly? She thinks I may have had it for at least 10 years. I'm 52. I will keep you all posted on my post-op, but I hope to be pain free!!

CK



  Quote:
Originally Posted by Ciaobarbara View Post
Hi there,

day 5 post op and I'm eating and feeling better but very very tired.

I had a total removal of everything. I have had regular period with no complications all my life, at 47 started hot flashes every 45 minutes. Went on hormones and this helped. Started experiencing pelvic pain 2 year ago. Had ultrasound and mri and found nothing drastic. Felt bloated and still pain...2 months ago started spotting and then bleeding. Repeated ultrasound - thickened uterine lining to 12 mm. Did a Uterine biopsy - no cancer...3 abnormal paps and decided to do hysterectomy. After hyst. they found endometriosis on top of bladder. Was not severe but enough to cause all the pain. Has anyone here had endometriosis discovered during surgery and do you feel better now that everything is out? Did it affect your energy levels? I stopped the estrogen prior to surgery and felt better - now I'm off all hormones buy may have to recheck.

Thank you all,
Barbara
  #9  
Unread 11-10-2021, 06:33 AM
Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

When I woke up in recovery, which was an hour later than I expected, I knew something was wrong. Turns out I had surprise endometriosis so the surgery took longer. It wasn't a total shock because my sister had had it, though she knew about it prior to her hysterectomy. I had known I had fibroids... Why can doctors not see endometriosis prior to surgery?
  #10  
Unread 11-10-2021, 07:41 AM
Endo discovered during surgery didn't know it was there - anybody else? Did removing it make a difference?

Yes - same they discovered endo everywhere with adhesions and lesions and I had never had the diagnosis of endo prior to surgery. But it explains everything. I had to urinate frequently, also had discomfort during sex. I used to get inexplicable terrible pain in my hips and lower back during periods and random other times. Also, pain on the right side of my abdomen. I went to 3 different gynos and none of them diagnosed me with endo. My gyno who found it during surgery said it had to be there at least 10 years to be this extensive. I am almost a month out of surgery and feel great!! No more hip and low back pain. The puffiness in my abdomen is gone. What a gift!!
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