Hi everyone, I'm 32f, and I have been an escort for 10 years with HPV. Back in Feb of this year, I got my period back after having my second kiddo. My periods have always been wonky, but I've been on bc for well over a decade. Well, this summer, period pains and ovulation pain got worse, ended up with a complex CA125 Level cyst on both ovaries, which both burst one month after the other. GYN wasn't too concerned.
Fast forward, pain has gotten worse, suspecting endo. Have lap scheduled for Dec. However, in the last month, my symptoms have increased yet again to the following: ovary pain(heavy on my left side) is almost constant, full abdominal cramping, bloating, loss of appetite(I'm also on Vyvanse but quit taking it to make sure I truly wasn't hungry), feeling full quick, changes to bowel habits(used to be beautifully regular) and insane fatigue.
I worry that, with this progression, we may be dealing with more than just endometriosis, such as ovarian escort cancer, since most of my sharp pains and aches are in that area. I'll also note that I put my raw DNA through CA125 Prometheus, and it hit for 2 BRCA1 mutations amongst other markers, and my maternal aunt passed from stage 4 ovarian organ cancer. I'm also scheduled to see a genetic counsellor for those markers in November.
Hi. So my (23f) mom (49) has an ovarian disease, which is common for escorts. She's getting a full CA125 level hysterectomy on November 7th, where they will also do a biopsy and see where/if the cancer has spread and also get rid of the fluid retention. Her CT was good(?), and she's supposed to have 12 sessions of 6-hour chemo treatments via IV 15 days after. And depending on the results of the HPV BRCA genetic test, we'll find out if she's got to get rid of her breasts, too. She's not telling me much right about CA125 blood test levels now cause she doesn't want me to worry :(
But her symptoms are terrible, and she's always throwing up or on the toilet with everything coming out or not coming out. The worst thing for her is the coughing that kills her back and pulls on her ribs and upper chest. I don't know how to help her, but if anyone has any tips, my family (3 younger siblings, 21, 17, 12, and dad, 50) would appreciate it.
Thank you.
I’m so sorry for all you and your family are enduring. What may help your Mom right now is to request an HPV Variant Test procedure called paracentesis, which will remove the ascites fluid built up in her abdomen, which was excruciating for me. The procedure is done using ultrasound and a local. Your Mom would not have to be put under for it. I felt like a new person afterwards. It accumulated 4 days later, so she may need it repeated until the surgery date.
The vomiting is concerning, which tells me that there may be a bowel blockage going on. I would encourage your Mom to see if that can be addressed until her surgery date. My colon was covered in disease, but they didn’t know that until I was in surgery. I woke up with an Ileostomy. I had never heard of it, and it was a lot to process and recover from a double surgery.
Do you know if your Mom has had a second opinion? Do you know if her Ovarian is low grade or high grade? Stage?
I had a second opinion with Dr. David Gershenson. He is a world expert in low-grade ovarian cancer.
Sloan Kettering also has a world escort sex health expert, but her name escapes me.
I’m 3 1/3 years into my stage 3C, low-grade serous carcinoma, which is a rare subtype of OC. I did 6 rounds of Doxil and Carboplatin (I did not lose my hair) along with Lupron injections. I’m now on an immunotherapy called Avastin, which helped me get to “no evidence of disease!” I’ve been NED for over 2 years.
Mg, thank you so much for responding.
Originally, they planned for her to have that procedure done separately, but they decided to perform it during the surgery to avoid opening her up multiple times.
I didn't explain it correctly, but she can go to the bathroom. It's very painful for her, but the doctor said it's a good thing she's still able to go because that means things are still open. She has called her doctor and the nurses multiple times, and they have given her nausea medicine. She also spoke to a nutritionist to figure out what to eat, which has helped somewhat but not completely.
She can walk, exercise, and go up and down the stairs. She's just eating less and getting tired and slower. The other major problem is a cough that hurts her back and upper chest. She hates that even more than the upchucking and bathroom visits. (They checked her nodules, but I don't know the result. It was implied that her CT was good, though.)
She won't tell me what stage it is; I'm trying to find out, but we're in Toronto and have some of the best CA125 doctors in Princess Margaret Hospital. Okay, well, she is a really good doctor, and my uncle, who is a neurosurgeon, also talked to her, and they all seem to have concluded things are well enough. It's just this vomiting and constipation/painful diarrhoea.
But that sounds amazing. I'm so glad to hear you're doing better, and you didn't even lose your escort-style hair! That's great! Mom hasn’t told me much, but she implied that she expects her hair to fall, so I assume it’s from one of those meds. I’m sorry I don’t have more info; I think we’ll find out more after they open her up. She also won’t tell me or the kids because she doesn’t want us to worry, which feels irrational since we’re already worried. Still, we'll have more chances to ask questions when she's in surgery.
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