Frozen Pelvis

What a difficult situation, . My heart goes out to you. Unfortunately, I do not know of any tool or application for finding a specialist, but here is an article that might help: https://endometriosis.net/clinical/find-specialist. Do you have a good relationship with your primary care doctor? If so, maybe you could get some advice from your doctor and, possibly, a recommendation for a second opinion. Is the tumor cancerous and/or growing? Have the told you what might happen if you don't have the surgery? I wish I could be of more help. Maybe if you share the general geographical area where you live, someone might chime in with a recommendation. Please keep me posted. Gentle hugs. - Lori (Team Member)

Lori,
Thank you for the support , I truly appreciate any and all comments. The tumor I have is growing according to the 2 CT scans ( Sept.2023/May 2024). Not a lot but stil concerning as it is large and has encompassed part of my colon. My Primary care Dr, who I have been going to or over 20yrs, will not help and said its beyond his expertise. The surgeon I have for my colon, is excellent as is the gyn oncologist, as if it was not for him being very cautious, I would not have had the colostomy that
was absolutely necessary after reviewing the pictures of the CT scan. He originally was going to do a hysterectomy in early December but after seeing the pictures said no it was imperative that I get this colon fixed. Hence he referred me to the colon surgeon. That was a blessing as I was months every three day in bed with excruciating pain after this GI dr, had me on every laxative known. That original gi dr almost killed me. He sent me to hospital and said I had to have my gallbladder removed. I dont think he every bothered to review those findings. That hospital gave me a list of doctors that I should be seeing I saw my regular ob gyn and she had the ultr sound done and at that point sent me to the oncologist I have and the rest is what happened to date. I weigh 101 lbs from132 that I use to be. So my reason for cancelling my july surgery and the fact that as good s this oncologist is I dont think he ever did this type of surgery, and every thing I read from all over states that it is a gyn's worst nightmare and the success of this, is dependent on finding a dr. who is skilled at this proceedure as it takes a specialist for every organ involved to be on hand. when I saw my oncologist few weeks ago I had already had pre admission testing but felt my body would not survive this 5 hour operation.He did not say what would happen if I did not have the operation only that either way was a risk.I truly thank you for sending me that link and will let you know if anything materializes . I am in New Jersey but will travel if necessary.
Sincerely
Betsy

Hi Lori,
My weight loss was from the first gi doctor who in August or 2023 prescribed laxative. Then another and another and I kept telling him that my pain is so severe with trying to go it cripples me up for days, That is where the majority of that weight loss cam from . As I said I cant believe he did not see the same blockage to my sigmoid colon that truly needed a colon Surgeon. Yjroncplogist thought for sure after he opened me up in January that I was in stage 4 colon cancer.f That was not the case as the olon surgeon sent me to a gi dr he knew for a sigmoidoscopy and did get some good biopsy but it ws all negative. the oncologist did not get anything in January and he did a Dand C last month in hopes to get some biopsy tissue but he sad the little bit he did got was not significant tor an accurate reading.
So at this point I have no definitive answer if its cancer or not. I will see what I can find in the research area. Thank you again you have been most helpful.
Betsy