I saw my new gynaecologist this morning and she was wonderful. Kind, funny, caring. She made me feel completely comfortable, didn’t rush me and was very chatty. She also has a son on the spectrum, and we exchanged funny Aspie stories, in the nicest possible way. We also realised that I had seen her before, and she actually confirmed my PCOS diagnosis, about 17 years ago.
She took a thorough history, reviewed my ultrasounds and previous records, and gave me a physical exam.
She ordered a CA-125, which is a cancer marker, which will help indicate whether the cyst is cancerous or not. However, she explained in early disease there are often false negatives, so a negative result doesn’t rule cancer out. There are also false positives, so it’s only really helpful if the number is very high, that’s a pretty good indicator of cancer. But a low number or a negative result is very encouraging that it’s benign, but not conclusive. The only way to know for sure is to take it out and test it. The good thing is the cyst is small, and even if it is malignant, a hysterectomy will be completely curative.
And it’s much more likely that it’s NOT cancerous, but there’s no way she wants to leave it there and wait and see.
Given the complex cyst, pelvic pain, heavy bleeding, PCOS diagnosis, cyclic mood swings that get more severe by the month and previous (now failed) endometrial ablation, she recommended a hysterectomy and oophorectomy as soon as possible, and her next surgery date is the 6th of June. Only three weeks.
The only decision I have to make is whether to have a total (remove the cervix as well) or subtotal (leave the cervix behind) hysterectomy. The ovaries are going no matter what, and I will go into sudden surgical menopause after the operation. To relieve those symptoms, I will have a combination of estrogen and testosterone, in the form of pellets inserted beneath the skin.
She told me it can take a while to get the hormone balance right after the hysterectomy, but over time, I’ll be feeling way better than I am right now. No more PMS/PMDD ever.
I was diagnosed with PMDD years ago, but it was a consequence of PCOS, and metformin took care of the worst of it. I considered it PMS, like most women get (whether they realise it or not).
Over the last few months, my moods have been getting steadily more unstable each month, and the prednisone taper certainly didn’t help with that. I don’t get the anger and rage that most people associate with severe PMS/PMDD. I get overly emotional, sad, and self-destructive, I cry a lot and I drink a lot. I take on the troubles of the whole world and feel somehow they are all my fault. I want lots of hugs and lots of sex and I make very poor choices. It’s not a good look.
Exercise is the best thing to combat it, but obviously I haven’t been able to exercise at any intensity for months now, and intense exercise is what’s required to combat that degree of mood instability. And, as I said previously, prednisone just intensifies everything.
The ultrasound showed that my endometrium has grown back, which is shouldn’t have, especially in under two years. Which the adenomyosis is back and will only continue to get worse. Even without the cyst on the ovary, I’d be a candidate for hysterectomy now.
It’s a big operation, particularly if I elect to keep my cervix, because I will need a large abdominal incision. Alternatively I can have a laparoscopically assisted vaginal hysterectomy, which has a shorter recovery time (supposedly not much shorter though) but then they have to remove the cervix as well.
There are other pros and cons, and she has given me a lot of literature to read, and told me to make a decision and then book in for my surgery of choice. She couldn’t advise one over the other, she said it was entirely my choice.
It’s a relief to me that I have no choice about whether to or not to keep my ovaries, they have to go. It’s often a huge decision women have to make when they need a hysterectomy for pelvic pain and heavy bleeding, whether to keep the ovaries or not. Generally it’s better to keep your natural hormones if you can, but the ovarian cyst takes that one out of my hands, and I’m actually happy about that. It makes it simpler right now.
I started writing this hours ago, and was interrupted. I’ve decided to have the total hysterectomy. The correct term is a total hysterectomy with bilateral salpingo-oophorectomy, which includes the complete removal of the cervix, uterus, ovaries and fallopian tubes. It means I will never need another Pap smear, never have any more bleeding (people who retain their cervix can still have some monthly bleeding) and I will never have to worry about any gynaecological cancers again.
It’s also more likely that it will be able to be done vaginally, which means a shorter recovery time and no large incision to heal. It’s still a major surgery however, and the recovery will be long and uncomfortable. But its far easier this time around, because I have no choice. It has to be done, and therefore there’s no second guessing whether I am making the right decision. The decision, or most of it, has been made for me, out of necessity.
She’s going to send me more information, but I’m booked in for the 6th of June. Plenty of time to prepare the kids. They’ll be fine on their own, with support from their father. I’d already warned them that I was probably going to need surgery. They will cope just fine.
It’s a shame though, I’ve just started getting back into my exercise routine. In three weeks, that will all stop again. Huge upside though, I am no longer worried. Everything is now under control. It’s fast – cyst found on Friday, gynaecologist on Wednesday, surgery in just under three weeks. But that’s good. I have a great doctor and a good plan. And I’m feeling much calmer and ready to deal with what’s ahead.