I really need advise and help, I was diagnosed with stage 3b cervical cancer in 2017. I went through 6 months of full treatment , chemo, Rad and brachytherapy. 6 month after treatment ended I was getting a bad discharge and odour. Ended up finding out I Nicrosis of the cervix. I’ve been on antibiotics for the past 9 months. There seems no let up to the discharge and I lightly bleed every single day. I’m in a lot of pain, so I’m on pain meds around the clock.
I have just had another PET scan, shows activity in my uterus and my cervix is gone! They can’t tell if it cancer or it’s the necrosis as the scan is the same as the last one.
No one has any answers they can’t even tell me anything, they basically have shrugged their shoulders they don’t know what to do. This is all the team of my oncologists, Gynae’s and surgery team. Not one of them have an answer.
I have to wait another 3 months to have A CT scan done to see if any changes.
Does anyone have any answers that may help me?
Thank you you in advance
Hello. I am having the symtoms you mention as well as a lot of pain. I have seen a pelvic therapist once, and she showed me a diaphragmatic breathing exercise that helps the pain. There are other exercises as well. I am pretty much incapacitated right now, as I also have labral tears in my hips that are making it difficult to walk, but am determined to see what can be done about scar tissue or fluid build-up or whatever is causing the pain. I think the pelvic therapy may help.
Question: How did they diagnose your necrosis? What antibiotics are you on?
I hope this was some help.
im sorry to hear your struggling with this as well.
I kept complaining to my oncologists about how much pain I was in. I was getting a lot of discharge and had an infection which smelt bad. I began on antibiotics called Flagyl, I’m still on 9 months later, this is to keep the infection under control. I’m also on Targin and Endone for pain.
I went into theatre under anesetic so the team could go in and have a look. They confirmed it was Necrosis. They did take a biopsy which thankfully came back clear of cancer.
Now I have new pain, my urethra is in overwhelming pain, I constantly needing to pee or have the constant urge to pee. It’s so painful. My current pain meds are not working. I’ve just started Lyrica.
Im not sure what to do and all my doctors don’t know what to do!
Everything is so unsure
I was treated with Hyperbaric oxygen (HBO) in 2017. I was ordered 40 treatments 2 hours a day 5 days a week. After 4 months of severe pain in my right hip and unimaginable abdominal pain, the necrosis was found during a biospy. The mass had been seen on my PetScan, but was never addressed. Sent for an Mri 2 months later where the necrosis was seen. The Dr's thinking it was a tumor sent me to get a biopsy. Tissue samples revealed I had 100% vaginal necrosis. I dont understand how this wasn't seen during my pap smear ( once i was diagnosed with the necrosis, they apparently had no problems seeing it during my paps. This is how i was later routinely checked to see if the HBO treatments were working).
I was not given any pain medication at all to help with the pain before or during the HBO treatments. I was not taken serious about the amount of pain and location of pain. The HBO treatments do cause abdominal pain. The way I rationalized it is my body had to go back through all the pain that lead me to treatment just in reverse. Once the vessels became healthy things got better. The discharge before treatment was bad, i actually thought i had peed my pants several times and that's putting it lightly!!! The smell was horrible, i felt if someone came within arm length of me they could smell me. (After a lot of trial and error, POISE bladder control pads are AMAZING, the only liner that controlled smell). This does get worse about mid way of treatment. The discharge color and thickness changes also (sorry if to graphic). So I would recommend wearing the more protective panty liner while in treatment because you never know when things may happen!!
I hope and pray that you have been treated accordingly! I had searched the forums when I was diagnosed and saw only a few ladies affected by this. Sadly, in just a year or so I've noticed several more ladies dealing with this!!! It's so sad!
If anyone has any questions please feel free to private message me.
Hugs and love to all!!!
thankful to God that He gifted me to live another day!
3A1 CC (2016)
5x brachytherapy (2016)
HBO treatments (2017)
Abnormal pap (2019) Colposcopy (6/6/19)