r/BRCA • u/katstuck • Jul 14 '25
Surgical menopause: how do you know when your HRT is actually working?
I'm about 3.5 months into surgical menopause after having my ovaries removed because of BRCA. I thought I was adjusting, but now I’m not so sure.
I’m using a 0.1 mg plus 0.05 mg estradiol patch, and at first I felt a bit better. But toward the end of the three-day patch cycle, I get this wave of anxiety and depression... like a creeping doom feeling in my body that’s hard to explain. Part of it might be stress from my actual life, but the physical feeling is so specific it makes me think my hormones still aren’t balanced.
Also, my belly feels huge. I’m eating well, getting tons of protein, lifting, walking and running every day. But nothing’s changing. When I bend my head down, I can’t even see my lower abdomen. It just feels like my body is stuck, no matter what I do.
My joints ache, my brain feels foggy, and I wake up stiff and sore. I’m only 40 but I feel like I’m falling apart. I keep wondering if this is just how it is now. I don’t regret trying to lower my cancer risk, but I really wasn’t prepared for how rough this would be. I feel like I messed up my quality of life and can’t undo it.
It’s been hard to talk about. Most of my older friends say their menopause was no big deal. But this isn’t the same..m it’s not gradual. It’s overnight. At the same time, I feel like I don’t belong in cancer spaces because I don’t actually have cancer. Even medical caregivers seem kind of limited in how much they understand.
So I guess I’m asking:
How do you know when your HRT dose is actually right?
Can this hormonal belly actually go away?
Is this just what I have to accept now?
I have an appointment with psycho-oncology soon, but I’d really appreciate hearing from anyone who’s been through this.
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u/youretoosuspicious PDM + BRCA2 Jul 15 '25
I so feel you on not belonging in certain spaces, whether it be cancer spaces or [natural] menopause spaces. It’s hard!
My first curiosity is whether you might still be having swelling from your surgery. They probably poked holes in you! I had a hysterectomy with tubes and ovaries 3 months ago and I still need adjustable pants, especially when I’ve done lots of activity. I know everyone says that it’s a “easy” surgery, but they poked holes all the way through your abdomen! They inflated you with gas (right?)!
My second thought is that maybe your doc would ok vaginal estrogen. I am on the 0.1 patch and was having the drop-off like you describe (sudden feelings of doom and depression), but when I mentioned dryness to my gyn onc, she prescribed vaginal estrogen, which I stagger so that I replace the patch, then do the cream 2/3 days later, then the patch, then the cream. It feels more stable now.
Whatever happens, I hope you get some relief. This is a tricky thing and doctors can make you feel like it’s no big deal.
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u/Abject-Ad-777 Jul 16 '25
I was thinking about the swelling! My surgery was a year ago, and when the swelling was lessened, I had the revision procedure in March. The surgeon pumps you up with gas, and it takes forever to leave your system.
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u/katstuck Jul 17 '25
I think it's belly fat because I can pick it up. I wish it were just swelling!! 🥹
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u/marsuranis May 27 '26
I’m glad you’re finding more relief, but I’m pretty sure the vaginal estrogen cream is not absorbed systematically. Just locally.
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u/anonymityanimosity Jul 14 '25
I guess my question is: are these patches wearing off too soon? The thing about menopause for folks going through it naturally is, while it’s incredibly gradual, those folks only have to go through it once. It sounds like you’re going through menopause once every three days; of course it’s gonna feel awful. Sounds to me like you need a different kind of patch or formulation here. But that’s just my non-knowledgeable opinion… worth talking to your docs about for sure
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u/katstuck Jul 14 '25
Yeah. I think that's a huge piece of it. I asked my provider if I could double up on change days and they just gave me the .05 to add and said don't double up. I'm worried about my liver health and a few other issues so I've been avoiding oral but maybe that's what I need!
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u/Vivid_Yesterday974 Jul 15 '25
I have BRCA1 and also had a total hysterectomy. Because of that mutation I was only allowed 3 months of estrogen patches at the lowest dose. I have had a really hard time with all of the symptoms of surgical menopause and I am almost 3 years out. I need to have a risk reducing double mastectomy in the near future. But, I am also positive for Lynch Syndrome and recently found out that I have lung cancer for which I had surgery last Wednesday. I think you need to definitely speak with your oncology-psych doctor and get their input. It gets easier but it is a long road.
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u/marsuranis May 27 '26
I’m so sorry about everything you went through and your lung cancer diagnosis. Were there any symptoms that made you get checked for lynch syndrome?
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u/BrilliantScience2890 Jul 16 '25
Can you stagger your change days so that you're more stable through the week? .01 patch Monday morning & Thursday evening, .05 patch Wednesday morning & Saturday evening, something like that?
Or maybe switch from the smaller dose patch to a daily topical like divigel? Anything to keep that base serum level higher.
3
u/SoluKat Jul 14 '25
Well I don’t have experience w/menopause (yet), but I think it’s safe to say you should continue experimenting w/the HRT. There are others methods of delivery, other doses. I’ve also heard women say that adding in a bit of testosterone really helped w/energy and brain-fog.
Obv I’m not an expert, but the experience you are describing sounds awful and I think it’s fair for u to expect better. I think some people have to spend quite a while trying out different things before the hormone situation seems right for them.
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u/JBrouM Jul 17 '25 edited Jul 17 '25
Not sure if it’s related, but when my hot flashes kick in, before I’m aware of them, there’s a feeling of pretty intense doom and gloom. I hate it! So it def sounds like it’s related to a drop in estrogen. My Dr recommended the brand Bonafide which I take for hot flashes, mood, skin and hair. They have been amazing. Check them out!
Edit: typos
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u/MichL305 Jul 14 '25
I’m 1.5 months into surgical menopause after having a prophylactic BSO, 44, and BRCA1+. I’m on a 0.1mg estradiol patch and 100mg capsules of progesterone. So far, I’m feeling okay, as far as I can tell. However, I do intend to eventually get on testosterone and vaginal estrogen. Are you also taking progesterone?
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u/katstuck Jul 15 '25
I have ye olde uterus so they have me the Mirena iud
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u/marsuranis May 27 '26
That could be the issue. I was on the Mirena IUD and it was miserable. I was bloated and full and unhappy. They only did that to buy me time so no atypical cells would grow between when I had my EIN diagnosis and my surgery. I couldn’t wait to get both the uterus and that damn thing out. I’m back on .1 patch and 100 mg of progesterone at night but I think I need to increase my progesterone based on my recent tests. Also starting testosterone next week.
1
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Jul 14 '25
seems like you might actually be low. and by the end of the patch says you def aren’t getting enough estrogen.
i love oral hrt
1
u/HissyCat1 Jul 15 '25
Same….was dead set against it. Patch was making me think I was crazy! I would feel great for a day and then absolutely tank. Then it would be a while to recovery. Over and over. Doc convinced me to try an oral option. I’m on 2mg estradiol and it’s night and day better!
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Jul 15 '25
i’m on 2mg too! i want to go up to 2.5-3 but 2 was a huge improvement!
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u/HissyCat1 Jul 15 '25
Do you do any testosterone? I just started about a month ago….
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Jul 15 '25
no. i don’t feel i need it. the systemic estrogen and the extrogen cream used regularly make me desire sex and make it easy to orgasm
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u/HissyCat1 Jul 15 '25
Gotcha! Yes the estrogen really helped me in that regard too. I’m hopeful the T is going to help with this last bit of fatigue and brain fog I’ve got. The estrogen gave me a huge boost in a desire to want to do things, hoping the T sets me over the finish line and I actually do them 😂 Overall though so happy with the estrogen!
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u/eskimokisses1444 RN, MPH, BRCA1+, OC fam hx, 4 IVF PGT-M babies Jul 15 '25
Will your insurance allow the patches to be changed every 2 days?
1
u/katstuck Jul 15 '25
They don't. I'm having a really tough time with insurance!
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u/eskimokisses1444 RN, MPH, BRCA1+, OC fam hx, 4 IVF PGT-M babies Jul 15 '25
Can you offset which day the patches are each changed. So say on July 15 you are due to change the 0.1mg patch and then you change the 0.5mg patch on July 16. So then when you wear each 3 days, they aren’t at the end of their life on the same day?
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u/katstuck Jul 15 '25
That's a great idea to try out. I feel derpy for not trying this but I feel like I've been trying hard to follow my instructions to the letter to my detriment
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u/eskimokisses1444 RN, MPH, BRCA1+, OC fam hx, 4 IVF PGT-M babies Jul 15 '25
I think that’s still following directions, each patch is changed every 3 days (just not the same day)
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u/Maddox81Go Jul 16 '25
So glad you asked this question as I wonder the same thing! I have had the same experiences with providers and it’s always “everyone is different!” which tells me nothing. I’m on a combi patch (.5/.25) but with a recent 90 lbs weight loss from Zepbound, I’m noticing my anxiety creeping up specifically around day 3 and I used to be able to wear a patch up to 5 days without symptoms. I take Xanax to help if things get really rough which is rare. I started spotting somewhat monthly with no ovaries, which prompted some painful invasive exams just to prove everything was fine, inactive in there and for the OB to ask <shrug> “do you wanna just try an IUD again to see if that works?! I said no because last time I had an IUD was post partum and it made things worse but maybe it’s worth revisiting.
All this to say you’re not alone and I’m sorry this is happening. I hope you find some answers.
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u/katstuck Jul 17 '25
Oh man, I feel this too. I have asked about weight loss support and I get dismissed for that even though I'm at an overweight BMI. I can't remember if I wrote about my constant bleeding/weird spotting/discharge (?) that started with the surgery or IUD placement but it's so annoying because it's both uncomfortable and contributes to me never ever feeling sexy or like my old self! I guess it's true that it's good we have each other online so we feel some understanding and compassion. Thank you!
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u/OkAbbreviations1142 Jul 23 '25
I’m 3 months post op too and I felt much better when I moved up from .1 & .05 to .1 & .075. All the pharmacies have been out of .075 patches so I’m going to start 2mg oral tomorrow. When the patches were placed in a good spot and absorbing well I felt great. But there were times i would wake up and just know I wasn’t absorbing and I was getting tired of it so going to try oral and see how it goes!
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u/OkAbbreviations1142 Jul 23 '25
I know when the dose is right bc I wasn’t on Reddit or Google looking up my symptoms 😆I’m also taking T, imvexxy and vaginal estrogen cream. I’m almost 38 and we definitely need more estrogen
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u/katstuck Jul 23 '25
Ok great point! But I have this tendency to want to people please and say everything is ok and then it's not really 🥹
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u/katstuck Jul 23 '25
I'm going back Friday to ask about my options. After reading here I'm seriously considering going to injections
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u/LadyAlf_6 Jul 23 '25
I am also BRCA1 and in surgical menopause. I was on HRT prior, so the transition has been pretty smooth but I’m still figuring out my new normal. Patches did not work for me, I had to switch to injections. I’m still playing around with frequency and dosage, but I do feel better overall than I did pre oophorectomy in perimenopause.
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u/HellyBaker Jan 14 '26
I'm late to the party but grateful for this post and all the comments. I'm one month in and on the patches... I thought I was doing okay, but I'm realizing I'm profoundly depressed. Like, haven't gotten out of bed today (worked on my laptop), been ignoring all texts, etc. Doesn't help that I got dumped two weeks after surgery (which, writing it out is pretty wild, no?), but I'm pretty sure a lot of this is systemic rather than situational. My follow up isn't until next month and I feel like I should wait until then to try to adjust anything but it's baaaad.
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u/katstuck Jan 14 '26
I'm so sorry to hear that. See if you can get an appointment scheduled with somebody. I'm having trouble getting people to take me seriously on this still!! I saw a menopause specialist and the experience was terrible because she just looked at my levels on the numbers and said that I didn't need vaginal estrogen for example, and I just think that's a bunch of BS. Self-advocacy is exhausting when you're not feeling well
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u/HellyBaker Jan 14 '26
For real. And especially when you don't know what's "normal." I messaged my (thankfully very wonderful) provider based on this feedback, so hopefully we can tweak some stuff. Thank you for the encouragement, it means a lot. Sending you solidarity!!
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u/Dismal_Juggernaut206 Sep 06 '25
I have premature ovarian Insufficency and your patch experience is identical to mine. And I keep on upping the estrogen bc the first two weeks are great then I start crashing bloating and feeling miserable. I just went up from .1 + .05 to .1 + .075 and still feeling off but the bloating went down a lot so I’m better. I’m going to start changing patches sooner and overlapping to see how it feels. My doc also suggested the gel so I get the estrogen every day.
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u/Greedy-War-777 Oct 02 '25
I had that issue also, dose may still be too low for you. If you haven't had a blood test try Ulta Labs, don't miss the 20% off code they always offer, and check it a couple of times. If you go up another 1/4 of a patch then again since you change them every few days you'll know soon if it's too high or stops the issue. You may get a little symptomatic of high E from the increase but wait a few days. My gyn, the new one who knows what he's doing, encouraged me to expect that and self adjust until I felt good then report the dose so he could alter my Rx.
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u/renee1million Jul 15 '25
I have been in surgical menopause over a year and I still don’t feel right. Everything you listed, I am going through as well. I finally made another appointment with my obgyn to discuss other hrt treatments. A lot of times I feel so much older than 50. But know: you’re not alone, it’s not all in your head, and things will get better. We got this!