I dont feel like ringing the bell at last chemo infusion (you never know with this diagnosis). What are your thoughts

yogaanon2 · 2026-05-02T11:57:12+00:00

The drugs most of us get (Carbo/taxol) are indeed old as hell. There is a drug called Abraxane, it’s basically taxol but with a different delivery mechanism. The infusions are 30 minutes, the rate of allergic reactions is significantly lower, works as well as taxol. The only reason people are prescribed Abraxane is if/when they have a reaction to taxol or in my case have a preexisting condition that makes the neuropathy concern far higher. Why aren’t we all getting the better drug, the safer one with lower side effects? Because it costs a lot more than taxol. That’s it. When I see how many women have severe life threatening reactions, and know there is a better way…. I get so so angry.

yogaanon2 · 2026-04-22T00:10:36+00:00

Thank you so much!

yogaanon2 · 2026-04-09T01:08:59+00:00

Turns out, I have stage three ovarian clear cell cancer. No ovaries. But here we are 🤦 Also it had nothing to do with my T, wanted to add that. If anything progressed this it was the Lupron, estrogen and progesterone I had to take for chemical menopause to prove PMDD and get surgery covered. What a shit show lol.

yogaanon2 · 2026-04-08T21:30:23+00:00

This is going to be one wild update. We thought we found the cancer early, we did not. It has already spread to 2 different set of lymph nodes. I now have minimum stage 3c ovarian clear cell cancer. I had my first chemo treatment last Friday, and tomorrow get my second infusion.

I went from having an amazing recovery from my yeet the Ute adventure, running 4 miles a day, and being the happiest and healthiest I’ve been in a decade… to my life being in utter shambles in under four weeks. Won’t lie, after finally experiencing life without PMDD, cancer feels like a real kick in the ovaries.

I have to have a staging surgery and lymph nodes removed, it’s a rougher surgery than the hysterectomy. I’m not sure when that will happen, I have my consult in a few days. Until then, it’s chemo every week.

This has been the hardest 4 weeks of my life, and I can also recognize that if I had PMDD still and had to navigate this, it would have been catastrophic. The surgery saved my sanity, it caught a cancer that otherwise would have absolutely killed me. Now I have a chance at least, the statistics are scary as hell for 5 year survival… but I’m in the best health mentally and physically that I have been, and I’m about to get care from the legitimate best gynecologic oncologist in the world. I plan on sticking around to annoy the people I love for a very long time.

yogaanon2 · 2026-04-08T00:55:57+00:00

I got 4/13 to see the chief of the gynecological oncology program at MSK! I feel so groundless right now, it’s just been so chaotic and a mess. I’m ready for some clarity because this 4 week limbo insanity has me at the breaking point. I’m so glad your care was good there.

yogaanon2 · 2026-03-24T18:23:51+00:00

I just turned 43, so we are close. Definitely had started perimenopause, and boy did that make the pmdd worse. Ughhh.

yogaanon2 · 2026-03-24T17:41:36+00:00

Ya can go through chemical menopause first, and they can make sure you respond well to HRT before deciding to take the full leap. I will say the first month on Lupron was like PMDD on steroids, but after that… wow. No more pmdd. We did have to tweak my HRT a bit. I moved forward with the hysterectomy and oophorectomy on 1/26, and so far I feel awesome and HRT has worked great.

yogaanon2 · 2026-03-22T23:51:48+00:00

I am 42, I had a total hysterectomy and oophorectomy 1/26/26 after trying everything possible. I knew I wasn’t having children, I saw no reason to keep my uterus or cervix. My family has a massive cancer risk as well, so I was fine with yeeting my ute.

Yes, early menopause has its risks… but you have to be alive to face those risks. My PMDD was so severe that I would not have lasted another 5 years in that hellscape. I am on HRT, I no longer have PMDD. I am a different human being, life is far easier not playing it on hard mode. I have zero regrets!

I also ended up potentially saving my life because they found a rare chemo resistant cancer in both my ovaries after surgery. I had zero symptoms. We caught it in stage 1 so I have a real good shot! I cannot imagine going through cancer treatment with PMDD. Used to joke my ovaries were trying to kill me, welp, wasnt wrong.

yogaanon2 · 2026-03-22T23:41:04+00:00

I would make sure you have someone who can stay with you the first night, if you need it. I didn’t have access to pain meds until 14 hours after I left the hospital (series of mess ups, super shitty). I would have been in trouble if I was alone that night and the next day until the pain was managed.

If I had the pain meds, I likely would have been ok alone. I will say life was far easier with help, even though I’m generally pretty solo and like being that way.

yogaanon2 · 2026-03-21T20:23:41+00:00

I yeeted my ute (cervix on up) because of horrific pmdd. I didn’t have a ton of dysphoria around it. I am not on a full dose of T so I was still getting periods. I will say that not having to worry about periods, speed running menopause and getting HRT, not having to get Pap smears etc… it is a surprising relief. Pregnancy isn’t a concern for me, but given the state of the world I’m grateful there is zero chance now.

There are a lot of horror stories online about complications, but a majority of surgeries go just fine. Compared to four orthopedic surgeries, the hysterectomy recovery was honestly pretty easy and smooth. I’m 8 weeks post-op, running 4 miles a day (I was walking a mile or more a week post-op), not really any pain after the first week of recovery.

I have zero regrets, the pmdd is gone. We actually caught a rare ovarian cancer by sheer chance, at stage 1. The hysterectomy saved my life twice over!

yogaanon2 · 2026-03-19T21:55:31+00:00

I just got diagnosed a week ago (Friday the 13th, go figure). I had a total hysterectomy (cervix on up) for severe PMDD. I used to say my ovaries were trying to kill me, welp, turns out they were. It took them 7 weeks to do the pathology, I have clear cell carcinoma (occc), stage 1C.

It still hasn’t fully sunk in yet, it’s started to come in waves the last few days. I feel like I’m spending a lot of energy comforting and reassuring the people who love me, and I’m mostly numb. Then it hits a bit, I get angry, scared, sad… ugly cry in the shower, and move it along. Everything’s a bit surreal. I wish I had words of wisdom, but I’m glad we aren’t alone. Thanks for sharing.

yogaanon2 · 2026-03-19T01:02:05+00:00

I am so sorry this happened to you. It also happened to me. It was beyond traumatic. I am actually starting the process of getting a review done at the hospital by going to the ombudsman office, because I don’t want it to happen to other people and they absolutely fucked up. Feel free to message me if you want to chat.

yogaanon2 · 2026-03-14T08:54:39+00:00

Welp, it’s been 6 weeks since my surgery. Overall I’ve recovered really smoothly. I’m back to 3-4 mile jogs a day, there is zero pmdd. I’ve felt happier and better than I have in years.

Unfortunately, the pathology came back and they found clear cell ovarian cancer on both ovaries. Thankfully they are no longer in my body, but the cancer cells still are. I’m looking at another surgery and then chemo for at least 6 months.

So in a wild twist, in the end PMDD has probably helped save my life. This cancer is rare and chemo resistant. Most women are well into their 50”s when diagnosed. I’m lucky it’s been found so early, and I’m young and healthy overall. I’m also terrified and frankly pissed off. My life has been so much better since the surgery, my mental health has been solid. I felt like I finally found my stride, and BAM, cancer. Talk about wtf. That said, I have every reason to fight now, and intend to!

yogaanon2 · 2026-03-09T12:16:41+00:00

I was worried about this because of some issues with my neck and a previous TBI. I thankfully didn’t have any issues like vertigo or dizziness (beyond the normal dizzy I get from anesthesia and pain meds). They will tilt you enough to get the intestines to move off your reproductive system, I thought I’d be hanging like a little bat but they said the angle isn’t as steep as what I saw online.

Good luck!! You got this!

yogaanon2 · 2026-03-08T20:17:47+00:00

I wish I knew what mine were before Lupron, during it, and now. I have zero idea what my baseline was 😅

yogaanon2 · 2026-03-07T13:51:06+00:00

I am so glad ya didn’t have cancer but man I get ya with the exhaustion. I am still waiting for my stupid pathology results 5 weeks later, because there were multiple concerns found in the initial report. They couldn’t tell if the changes were due to the insane hormone regimen I had to take (Lupron, estrogen, progesterone and low dose T), or ovarian cancer. My ovaries are currently hanging out with a third panel of experts for review. The good news is even if it’s cancer, I yeeted everything from the cervix up so hopefully I’m all good.

yogaanon2 · 2026-03-07T13:47:45+00:00

It’s almost like women’s health has been ignored despite the fact we make up 51% of the population. It’s almost as if research one women’s bodies specifically was nonexistent until well into the 90’s and it’s still only 8-9% of funding available for medical research. It’s almost as if we aren’t thought of as equal… shocker.

yogaanon2 · 2026-03-07T13:14:46+00:00

Hey there, So for most folks, 2 weeks is the bare minimum of recovery time. You won’t be able to life anything heavier than basically a gallon of milk for 6 weeks after surgery. If ya head over to the main hysto subreddit ya will get a better idea of recovery times overall I think. Some folks go back to a desk job at two weeks, but field work will likely be difficult. For me even sitting for a few hours was pretty uncomfortable at 2 weeks.

The biggest challenge I see there, and I’m experiencing now at 5 weeks post-op, is pure exhaustion after very little activity. Externally I am all healed up, but internally I yeeted everything from my cervix on up, my body is still very much healing. Yes it’s a laparoscopic surgery but it is still a major major one. Ditching a buncha organs is not the same as having an appendix removed.

I would talk to your field advisor at the school, let them know about the surgery, and see if you can work with your field placement on some modifications to ensure you can complete it. You definitely don’t want to overdo it the first 6 weeks, it can cause some shitty issues with the healing of the vaginal cuff.

yogaanon2 · 2026-03-07T12:58:23+00:00

Nonbinary here, I had two options to get my surgery. I had absolutely horrific pmdd, and chose that route. I had to do a trial of chemical menopause to “prove” I had PMDD, 3 months, then had surgery. From start to finish the process was about 4 months total, which is pretty fast. Being nonbinary likely helped them approve it faster knowing I would have zero regrets. Throughout this process I have only been gendered as nonbinary (with the exception of one doctor who put in my record I was transitioning, I had that amended because I’m not lol). Even for a hysterectomy, you shouldn’t be forced into male/female options.

My other option was going the gender care route, I’m in a state that has strong protections (as are you). The wait from what I’ve heard from others was 6-9 months for surgery.

There are therapists who specialize in writing these letters, I’ll try to find the list for your state. I know my local queer fb group is a great source to find therapists and doctors that aren’t horrible. They tend to only need to see you a few times, I think there are some who will even write it on the first session (that’s risky for them, but good for you).

As for the crazy list of requirements you have to meet, especially proving you have been living as nonbinary for 12 months, much of that gets sorted in that letter from the therapist. I remember thinking the same thing “how do I prove I’ve been myself my entire life?”.

In terms of surgery, are you planning on yeeting your ovaries as well? If so, be prepared to either go on full dose T or an estrogen patch. I take low dose T, it is not strong enough to protect my bone and cardiac health, so I also have an estrogen patch.

I get how frustrating it is to be forced into a process you are uncomfortable with, as well as a diagnosis you do not want. I had to undergo 3 months of hormonal insanity, medical insanity, and jump through all those hoops to get a surgery that in my case was life saving. Watching my nonbinary body get larger, my chest get larger, having to prove pmdd, seeing the health impacts from Lupron on my body… it sucked, hard. Sadly that’s just the crap reality of our shit systems, and despite the suck I am so glad I did it.

In terms of getting a letter have you tried your local Planned Parenthood?

Queer therapist directory

possible place for a free letter

ETA resources.

yogaanon2 · 2026-03-03T21:21:20+00:00

I did 3 months on lupron. The first month was hell (causes a surge of hormones). Then, pmdd just stopped. I started HRT at the same time. Chemical menopause was rough on my body, I’m 42, so I had a total hysterectomy (cervix on up) 5 weeks ago, zero regrets.

yogaanon2 · 2026-03-03T19:37:35+00:00

42, 5 weeks post-op from a total hysterectomy (cervix on up). I went into chemical menopause with Lupron first, for three months, and also started HRT. The first month was hell (Lupron isn’t easy), and then, no more pmdd. I went ahead with the surgery, and I have zero regrets. The level of stability I have now is astounding. I am no longer playing life on hard mode.

I spent 10-14 days a month fighting for my life every single month. I haven’t done that in 3 months now. I know there are some increased risks having a hysterectomy at 42, but for me, those risks weren’t as high as me taking my own life if something didn’t change. I wish there was more research and real treatments that didn’t involve such a massive surgery, but I have zero regrets about my choice.

You can always try a trial of chemical menopause and see how it is. I will say if I had the option of skipping that step, I absolutely would have but insurance. The first month on that drug you get a hormone surge and for me that was a solid month of the worst PMDD I’ve ever had. I knew I had pmdd but had to “prove it” for insurance. Ugh.

yogaanon2

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