T1, pending hysterectomy and Lupron

Hi all,

Seeking relatable experiences from any women (T1 or T2) who have undergone a hysterectomy, particularly with some pre-surgical hormonal “prep.”

I’m 43yo, T1 for 31yrs, and not (yet?) in perimenopause. I’ve always had heavy periods but it came to a head in March '22 and I ended up in the ER receiving a blood transfusion because I was quite anemic. Turns out this is due to uterine fibroids.

About 10-15 years ago, once my annual eye checks started revealing some mild retinopathy, I was taken off oral contraceptives due to the risk of blood clots that could get “stuck” or otherwise aggravate the retinopathy… and I was advised not to go back on hormones, EVER, for that same reason. So, hormonal treatment for my fibroids isn’t really on the table, and now they’re too big for hormones (or an IUD) to be effective anyway. I had an endometrial ablation last year to try to reduce my bleeding but it wasn’t really “successful” and I’m still having long/heavy periods, some anemia symptoms, and other, undignified symptoms caused by the “bulk” of the fibroids pressing on other things inside me.

Long story short, I’m planning to have a hysterectomy later this year. My OB/GYN wants to give me a pre-surgical 3-month course of a drug called Lupron that will induce temporary menopause to 1) let me build up some blood stores before the surgery and 2) shrink my uterus and fibroids so that the surgery will be less “intense” – possibly laparoscopic, with shorter recovery time. The kicker though is, he’s also prescribed me daily oral progesterone to take the edge off the sudden menopause symptoms (hot flashes, night sweats, mood swings, etc.). And that’s the part that’s worrying me, because of my previous instructions to not take hormones because of my eyes.

I had a consult with a retinal specialist today who said that my eyes/retinas look very healthy “for a person who’s had diabetes for 30 years” and that he didn’t see anything that would cause him to throw a red flag at the prospect of 3 months of progesterone, even though that would carry a risk of blood clots. “Stuff happens, and it could happen whether you took that drug or not,” was his basic message. On the one hand, I’m glad my eyes are healthy enough that he isn’t overly concerned. On the other hand, I’ve hit a point where I’m struggling to think objectively about this anymore and trying to decide the risk-benefit of the Lupron+progesterone protocol ahead of the surgery is consuming my brain and it’s exhausting.

It’s completely do-able to have the surgery without the Lupron+ progesterone ahead of time, so I could skip the hormonal disruption… but then the surgery would definitely be open-incision and thus riskier/more intensive, I’d have a longer recovery time, and an abdominal scar of who-knows-what-size that would remove some “real estate” for my pump infusion sets. OR, I could take the Lupron without the progesterone, and have 3 months of hormonal rollercoaster hell ahead of the surgery, which could potentially screw with my diabetes management in the short term (as well as my mental health, sleep quality, etc.). On one hand, I’d rather have a larger scar than f*** around with my eyes/vision. On the other hand, I’d rather have a shorter recovery period and get back to “normal diabetes life” ASAP. On the other other hand, I’ve read that my insulin needs/control could get funky during the Lupron course/temporary menopause and that it could also aggravate my chronic depression, so the progesterone give-back could? help with that. Or maybe not. On the other other other hand, none of the docs I’ve talked to thus far (OB/GYN, retina… note that I DON’T have an endo that I regularly see) seem overly concerned about this, so maybe I’m overthinking?

(Regardless, I’ll be keeping my ovaries and doing “natural” menopause on my body’s own schedule at some point in the future, so any hormonal disruption from all this would be temporary.)

I’m feeling really alone with this mental struggle, so I’m looking for any stories/insight from anyone who’s been in a similar boat – have you taken Lupron, and if so, what did it do to your insulin needs? Did you take anything in tandem with it? Were there unexpected, diabetes-relevant side effects? Have you had to go through any pre-surgical protocols that seemed risky, and if so, how did you consider the risk-vs-benefit?

**Please note that I’m not looking to be talked out of the hysterectomy; That decision’s been made.

Thanks in advance,

I’m not on any hormones so can’t help you there but I would be in your boat if not for a few things that changed my life. My grandmother had a hysterectomy in her thirties and I was heading for the same thing myself. Would you be willing to try a few things while you are waiting for your surgery?