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Aug 3, 2021 06:53PM
BrushJanus50T, I went to a gyno this summer because of some bleeding issues. Was told I have a large fibroid causing uterine distortion and adenomyosis, which I already suspected because of super flooding periods. But she suggested there was necrosis in the fibroid which indicated it could be a uterine leiosarcoma (can’t remember if I’m spelling right). So she would have to do a full hysterectomy to prevent its metastasizing, said it was bleak but surgery would save me, gave me literature and studies written to surgeons about treatment. Basically, they can’t tell 100% if it’s cancer until they remove it, but if they don’t take the whole uterus and disturb the tumor, it will immediately metastasize, less than 5 years to live. But the literature also said if you do remove the whole uterus, chances of recurrence are still high. Plus, I could then have all the hormones I wanted. So it was a stupid crapshoot for me. I was angry because if feel like there is a commoditization of gynecological surgeries, there’s data to prove it, and it’s no big deal to remove female organs because, hey, you’re not having anymore kids so you don’t need them. I asked my gyn why they don’t remove a whole enlarged prostate on old men, even if it’s not cancer? He can probably pee better, he’s not having anymore kids, it’s not necessary because he can still have nice dry sex. She didn’t say anything. I had an mri, showing it is a normal necrosing fibroid. But I do have a polyp or hyperplasia. They couldn’t do the hysterscopy because of the distortion. I cancelled my appt for myomectomy and biopsy because I KNEW I would wake up w a hysterectomy. I decided I would take my chances, but scheduled a second opinion for my mom’s sake. Two weeks later I felt the lump.
I wanted hormones the rest of my life for my mental health. I had severe ppd, pms, insomnia since my late 20’s, and suicidal ideation just taking the pill for 3 months. Testosterone actually CURED my 10 year battle with anxiety and OCD. I haven’t been on it for a year, but I haven’t worried about giving people rabies, legionnaire’s disease, or checked the local news to make sure I hadn’t run over a homeless person once. I haven’t gotten into a confrontation with any strangers, lol! I did have disturbing apathy, but that’s nothing compared to what I used to deal with. I guess it rewired my brain. But besides dealing with body shame, the thing I’m most scared of with this dx is the possibility of going back to live in my own personal house of horrors, how I used to be.
I want to tell you it won’t happen, but no one can predict how you will fare. From reading this site in the last week, I’ve seen different therapies effecting women in different ways. There may be a therapy that will be tolerable to you but you won’t know for sure unless you try. Surely the trauma from your surgery and it’s fallout are compounding all the fear that comes with this dx, plus the complete lack of control over what’s happening to your body and mind.
Hormones are really vital to some women’s mental health, it’s no joke or nothing to minimize. I don’t have your exact experience but I think I have your exact fears. You’re not alone.
DX @ 47. IDC 2 cm, Luminal B
7/19/2021, IDC, Left, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH)
9/1/2021 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Stacked DIEP flap
9/20/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)