I was diagnosed with Endometriosis when I was 19. I have dealt with pain all of my adult life. For over 4 months, I have had pain every single day of my life. The pain is in my lower pelvic area but also I have a lot of pain on my sides. Particularly on my right side under my ribs and around my belly button.
I went to the Doctor to discuss a laparoscopy and he thought the pain was something more than endo.
Multiple blood and urine tests, 3 ultrasounds, a CT scan, an Endoscopy and Colonoscopy later....they found NOTHING and all roads lead back to my endometriosis. I am going to finally get the much needed laparoscopy.
Are there are any endo patients out there that have had pain all the way up on their sides? Would love to know that I am not the only one.
Okay so this still could be endo but it sounds like it also could be Adhesions. They will not show up on any scan either.
I had the same tests done and everything was negative. I just had surgery and had massive Scar tissue up to my liver on the right side as well as my ovary is embedded into the pelvic floor along with my ureter.
For some reason for me the scar tissue is now the bigger problem then the Endo is. Also I just found out as well by Dr. Redwine a renown surgeon of this disease who is recently retired, not sure if you have heard of him or not.
I asked him this question as it was on my surgery report and I found his answer so interesting and it totally makes sense.
Can you define in layman terms what " Fibroadipose tissue with focal foreign body type giant cell reaction to birefringment material" on the bladder flap means?
" It means you had some form of 'ablation' done there in a previous surgery. Typically this would be laser vaporization, which leaves carbon behind in many women. The carbon is like charcoal and irritates the surrounding tissue, which reacts by producing a foreign body giant cell reaction, which can be a cause of pain all by itself. It would be like walking around with a small splinter in your finger all the time. Thank you, laser."
I am not sure if this helps. If I was you I would have the surgery. The adhesions started to obstruct my bowels and I couldn't have a bm without using an emema for 3 yrs. No one would listen to me.
I wanted to let you know how my surgery went. They found extensive endo everywhere, all the way to my back. There were lesions on my colon and 3 fibroids. He was able to get 2 of the 3 fibroids. The 3rd one was too large and he needed to make another incision to remove it. He chose not to bc most of the time fibroids do not create pain.
I am 3 weeks post op and still in pain. I can't wait for the day I wake up pain free, I fear that it will never happen. Some of my pain is in my lower pelvis area and feels like it could be healing pain. The worst pain is all too familiar. It shoots up my right side from my lower pelvis area all the way up to my ribs. The Dr said that there was no endo all the way up there and the fibroid is on my right side but in my uterus which is lower. The only explanation he has is that I am getting "referred" pain....truth is he does not know why I am still having this pain on my sides. He scheduled another surgery for September to remove the fibroid and any endo he may have missed, with the hope that I feel better and can cancel the appointment.
I am in search for an endo specialist in Cleveland. I really want to find a Dr that does the excision surgery that they do at the CEC in Atlanta. I really think that he only got the surface of the disease and could not get all of the endo. I had 3 ultrasounds, a CT Scan, a Colononscopy and Endoscopy before the Lap. They found nothing to explain the pain on my right side. I feel so lost.
I am really surprised that he didnt just take the last fibroid. Wierd! however similar happened to me and my ovary. It is embedded into the pelvic wall with my ureter and my surgeon left it as she didnt have the skill to do it laparscopically just laparotomy.
I would find an Endo specialist as Endo needs to be excised or you will just continue to be in pain surgery after surgery. It is a must!!
The right side pain could be adhesions forming, healing etc. It has only been 3 weeks I would give it time.
i definitely know how u feel i been in constant pain for a year and i have been diagnosed with endo when i was 17 but since then they haven't been able to find anything. but i had a scan oct last yr which showed my ovary was stuck to my uterus and few other things in laproscopy before that they saw nothing so its a constant battle to find the right answers and be pain free for a day
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