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Total hysterectomy with possible lymph node dissection in just 3 days
A couple years ago, I began having heavy periods, and a chronic left side pelvic pain. I’m now 38/F so my doctors initially just tried hormonal pills. It didn’t work. My issues continued progressing, heavy bleeding, mid cycle spotting, urinary Tract infection symptoms with bleeding, but no evidence of active infection on urinalysis.
I was told I had a couple benign abnormalities on U/S and CT, and continued to not be taken seriously. Then about 3 weeks after the last set of imaging I underwent a pelvic exam for a papsmear. The doctor was not able to get a sample because my cervix is now retracted superiorly above my pubic bone. No hysteroscopy is possible either as my cervix is now inaccessible. The change occurred rapidly over a couple of weeks.
I have been seriously ill for the better part of a year. I’m in bed with pelvic pain, fatigue, and joint aches most of the time. But this anatomical finding finally fast forwarded me to GYN Oncology and they scheduled me for surgery in under two weeks from the day I visited them.
The doctor said they are treating this as a potential malignancy until ruled otherwise. Now I am facing this major hysterectomy and lymph node dissection Thursday and have no idea what to expect.
I’m really looking for others to tell me their surgery experiences and outcomes and if there are any similarities that can be shared. Obviously myself and family are all worried. Thank you.
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@phoenix444 Welcome to Mayo Clinic Connect and to our support group.
Living with pain. There are many others, including women in our support group, who have lived with the kind of pain you described. As women, I feel that our pain is often minimized. And yet, everyone’s tolerance for pain is different as well are all individuals.
The recommendation for surgery from the gyn/oncologist must be incredibly frightening for you and your family. When I was scheduled for a radical hysterectomy it was because endometrial cancer had been diagnosed with a D&C. While I did not know the extent of the cancer (it was localized to the uterus so was Stage 1a) I was shocked at the diagnosis and very frightened going into the surgery.
Fortunately, when I arrived at the surgical center I had empathic and informative nursing and medical staff. I have a rather long prep in pre-surgery - at least I thought it was long as it was a few hours. I went back to my hotel later that same day. My surgery was robotic and laporoscopic. Still, my surgeon told me that the internal healing would be the same as if I’d had an open abdominal surgical procedure. I followed all of the cautions and instructions from the medical staff and I’d say that I was back to 100% in about 3 weeks. For the first week after surgery I was fatigued and somewhat foggy. I took it slow and didn’t lift anything heavier than a light grocery bag. I also didn’t drive my car for about one week.
Your description what has led you to the surgery is different than mine. I imagine that you and your family will be very anxious awaiting the surgery and then the outcome of the surgery and wondering what the pathology report will show.
You mention family. Do you have a partner/spouse? Children? Who is supporting you through this? Will you have other appointments prior to surgery?
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1 Reaction@naturegirl5 Thank you for the response. I have I assume what might be a unique set of circumstances leading me into this surgery because I’ve had a difficult time finding others that have had the same thing lead to an oncology ref.
If I had been able to get the biopsy done before the surgery like typically happens I think I might not be as anxious.
Thankfully my sister is flying in, and I have 3 children ages 16-8. So luckily I have a lot of people who are rallying around me at this time.
I have to go for an ekg and labs tomorrow. I’m getting some kind of blood draw that requires me to wear a bracelet until after surgery is over. They will be giving me an antibacterial soap and have requested I shower the night before and the day of surgery. Trying to be as diligent as I can so things go smoothly
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2 Reactions@phoenix444
I am sorry to hear about the delays and complications you have experienced. Hopefully you have found a trustworthy oncologist who will communicate well.
I was in my late 60s when I had my hysterectomy. It was my first surgery ever and I was petrified. But my doctor and the nurses were wonderful and having the robotic surgery enabled me to be home by the end of the day. I was sore, but not in pain and I was instructed to move, to walk around the house, to get my muscles and bowels moving. Sending best wishes for good results.
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3 ReactionsSurgery Update:
Just a preliminary update until final pathology comes in. My uterus was large, bulky, and full of tumors. Rapid pathology also found Adenomyosis diffuse through the muscle wall. It had also created large scar bands and fused to the peritoneal wall (abdomen). The same was found with my ovaries that were fused to my bowel and other organs. No malignancy found in lymph nodes (yay).
The other good news is, since having the adhesiolysis and hysterectomy, I notice an immediate improvement on my cardiovascular health. Blood pressure is down, I can walk around without getting winded. It’s amazing the impact my reproductive health was having on my entire body.
Now i am hopeful when i go home I will slowly strengthen myself and begin to do the things I love again.
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4 Reactions@phoenix444 This is wonderful news! From what you shared in the pathology report there is no malignancy and the adhesions were numerous. I'm so pleased for you that you now have less pain, your BP is down and you can move around without feeling winded.
Thank you for sharing this. You have some surgical recovery ahead and I hope you will feel more energy each day. Hoping you can go for those walks that will help you to regain strength.
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4 Reactions@naturegirl5 yes! It’s nearly sure there is no malignancy! The last part is just seeing what pathology says about the tumors. But we remain hopeful it is either benign fibroid or adenomyosis tissue! Great results today. And thank you all for being so compassionate during this scare and providing me a place to share. My heart and love is with you all who are facing malignancy and uncertainty.
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2 Reactions@phoenix444 Sure, you have to wait for the final pathology to be sure however these initial results are very encouraging.
Thank you for your kind wishes.
When is your next appointment with the surgeon or your doctor?
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2 ReactionsI see the surgeon again on September 21 and then again after another 3 weeks. I am really happy with how it’s gone and grateful for this surgeon most definitely
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1 Reaction@phoenix444
Thank you for the updates. What a surprise this surgery was; and preliminary results are leaning in a good direction. We never really know what’s going on inside of us…..
I wish you full healing and good health moving forward. It would be great if this was the end of your medical story.
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3 Reactions@phoenix444 Presumably you'll see your final pathology report when you have your appointment on September 21 and can discuss the findings. I'm so relieved for you that the surgery went well and you are already feeling better.
Isn't it amazing how a hysterectomy is performed? My hysterectomy was robotic laporoscopic and I was discharged the same day. Did you have same-day surgery?