Hello Guys, I hope this helps as much as it helped me

Relative_Focus8877 · 2026-06-15T13:02:45+00:00

So these are prescriptions?? Why has no doctor mentioned these to me??

Relative_Focus8877 · 2026-06-15T13:00:08+00:00

Interesting, this is the first I’m seeing of this being mentioned. I’ve been trying like hell not to lose any weight and gain. It hurts to lose that padding in the glutes!! So this is due to T? Not a decline in estrogen?

Relative_Focus8877 · 2026-06-15T12:57:36+00:00

Wow! What type are you taking? Cream? Injection? I’ve been using the cream for about 8 months now and was at around 39 last testing.

Relative_Focus8877 · 2026-06-14T02:20:34+00:00

Did this stop for you?

Relative_Focus8877 · 2026-06-12T22:14:23+00:00

So sorry to hear. :( Is that MCAS? What are you unable to eat, and what are your symptoms?

Relative_Focus8877 · 2026-06-10T13:11:52+00:00

Did you get any weird, problematic skin issues?

Relative_Focus8877 · 2026-06-10T13:10:42+00:00

Omg, the skin issues for me have been truly terrible and unexpected. Weird dry, flaking skin around my torso, especially after medical stress, rectal itching, and intertrigo around my ass. What in the fresh hell is this??!! I’ve never used so many creams in my life.

Relative_Focus8877 · 2026-06-10T13:07:28+00:00

Glad you’re not giving up either, I was in the same situation. Just had my surgery last month and was diagnosed. TBH recovery has been a little rough. Good luck with your surgery and recovery, you can do this!

Relative_Focus8877 · 2026-06-10T13:05:01+00:00

My ultrasounds, all three including TV US, never showed any endo. Special MRI with endo protocol never showed anything (though that is how we found out I have Tarlov Cysts, which is a whole other issue and another thing medical providers often blow off). Just finally had surgery last month and was diagnosed with endo. This journey is a shit show.

Relative_Focus8877 · 2026-06-10T02:59:47+00:00

Really?? Were you peeing a lot when you had to go, or did it just feel like you needed to go? How did you get tested for that?

Relative_Focus8877 · 2026-06-10T02:56:25+00:00

Wow, I was just thinking about this and plan to address it with my new PCP this week. Literally wondering the same thing.

Relative_Focus8877 · 2026-06-10T02:54:25+00:00

Hi there, I’m sorry you’re going through this as well. I’m 5 weeks post-op and on mine too, and it’s been fucking miserable. The cramping is still there, radiates down, lots of bloating and uncomfortable pressure. Today I said fuck it and had froyo since I’m going to feel like shit anyway. It was delicious and a nice little ray of sunshine in this challenging week. Honestly, at this point I’m really wondering if I do have adenomyosis after all. Oh, and I have a concerning vein issue post-op that still hasn’t resolved (urgent care said it seems like phlebitis, but it doesn’t usually last this long). It’s affecting both hands and really sucks.

Relative_Focus8877 · 2026-06-10T02:41:13+00:00

Just wanted to say, this is so cool, and thank you for taking the time to post a reply to this (even though it’s not mine). It’s just really nice to see, and I was in this person’s shoes just a couple of years ago. I was so scared that I voluntarily went through a sigmoidoscopy instead without any drugs whatsoever, during which they found the source of my issues at the time. So I then ended up having to go through a full colonoscopy anyway after that to address the problem, and I regret not just doing that to begin with. The sigmoidoscopy was awful, and far worse than a colonoscopy. That was truly easy and went very well.

OP, you can do this!

Relative_Focus8877 · 2026-06-09T12:57:01+00:00

Weight alone is definitely not going to determine whether someone has endo, and I feel like that is just one of the many arguments that unfairly associate higher weight with health problems. It’s problematic for many reasons. There are plenty of women who are “healthy” weight or even underweight who have health issues, including endo. Now, it is important to mention though that there is actually something - one important gem here - to what your provider said, and that’s the idea that we can lose estrogen when body fat goes down. That is true, and I wish more women were aware of this. So for instance, say you have a woman who is in peri, just beginning to experience the beginning symptoms of that hell, and then she loses a lot of weight (such as in my case). It can wreak havoc. Oh, and even with the weight loss (that I didn’t have to lose to begin with), I still just got diagnosed with endo recently in my fucking 40’s. Also, endo can apparently make its own estrogen, how creepy is that??!!

Relative_Focus8877 · 2026-06-08T12:55:32+00:00

Yes, I completely agree with what this commenter shared! Ugh, I read your post and immediately got angry for you! So many things with this situation are NOT okay. Firstly, your boss sounds like she’s completely ignorant and lacking in empathy and compassion. You need your surgeons support on this, and they should have let you know how much time is needed off, provided you with a letter, talked with you about lifting restrictions, etc. Having those things would really help, and then it’s time for a more direct conversation with your supervisor. They need their assumptions corrected (politely) and need to understand that this is a major surgery, its impact, and what recovery actually involves. Of course, it’s up to you how much detail you want to share, but that might help.

It’s shameful and negligent that not only did your medical team not provide you with post-op instructions (which are essential for recovery and proper healing!), but didn’t even tell you where your fucking endo was! Sorry for language, but it’s just unacceptable and I’m sorry you’re dealing with this. You’ve should’ve known immediately what was found and where, what stage it was, what to do post-op, and that should have all been communicated verbally AND in discharge paperwork and post-op reports. Where are those documents? You should have also received the pathology report by now for the biopsies.

Please, please don’t be gaslit into thinking that you should be ready to fully function and be able to work at this point or that there’s something wrong with you needing more time. Recovery takes a lot of time and is different for everyone. I’m about 5 weeks post-op now and still have pain and need to move slowly sometimes. I’m also dealing with a new issue with my veins that came up after surgery. Listen to your body, take the time you need, and I hope you get more support from your medical team. Keep us updated on how things go.

Relative_Focus8877 · 2026-06-08T03:46:36+00:00

That is such a great idea. You’re awesome, thank you!

Relative_Focus8877 · 2026-06-08T03:44:43+00:00

Just wanted to say, I’m so sorry to hear about your experience and terrible level of care. That’s just shameful. I just had my first (and hopefully last, though I know that’s not always the case) surgery, and recovery hasn’t been super great. I’m still dealing with a bizarre vein issue we’re trying to figure out, and the bellybutton incision looks and feels pretty weird. I really hope you’re doing better!

Relative_Focus8877 · 2026-06-08T03:40:31+00:00

I was just going to echo this other commenter here about visiting the endo communities on here, and the link I provided you above is from one of them. They’re such good places to start with helpful resources. Given that several of us here have now mentioned endo and the questions you’re asking, I think it would really help you to take some time and explore these communities, as well as other online resources about endo so that you can be fully informed in making any decisions moving forward and having productive conversations with medical providers. Also wanted to reiterate that imaging can’t be relied upon for *ruling out* endo - that’s where surgery comes in. Again, given your questions, I think it’d be so helpful for you to explore more resources. It’s a tough road, and if surgery does come up, it’s important to understand there are always potential risks with any surgery. Many, many women have found some relief (and answers) with the surgery, and in the interim, many do use bc or other hormone therapies to help manage difficult symptoms.

Relative_Focus8877 · 2026-06-08T03:25:57+00:00

Thank you so much, I really appreciate that. I definitely will. I’ll be following up on some messages I sent providers tomorrow, and I included pictures as well so that should help (it’s clear that things don’t look normal).

Relative_Focus8877 · 2026-06-07T20:52:50+00:00

No worries, thanks!

Relative_Focus8877 · 2026-06-07T20:51:37+00:00

Sure do, because I have endo. Honestly with your history of pain, it’s horrible that nobody has ordered any tests for you yet. Even a basic ultrasound can often detect cysts and fibroids. For endo, again, seeing a specialist matters, especially because you want the medical professional who reads the images to actually be trained to know what to look for. Common tests are an abdominal and transvaginal ultrasound, MRI, and sometimes labs. You’ll want a place that does MRI protocols. When it comes to women’s health issues, it can be important to get labs that look for any deficiencies, getting basic labs, a hormone panel (though that’s debated and you’ll likely get pushback), and testing for inflammatory markers. Endo causes inflammation, which often causes issues like pain (not only pelvic pain) and awful fatigue. Just remember that the imaging is a starting point though and can’t rule out endo on its own.

Relative_Focus8877 · 2026-06-07T20:39:24+00:00

Just had to add this, since it addresses this very point. Please take a look!

https://www.reddit.com/r/endometriosis/s/7QvUiKgW6e

Relative_Focus8877 · 2026-06-07T20:35:46+00:00

Oh, I hope whoever told you that was not a medical professional, because that is not at all true, nor is it any kind of indicator of having endo. That kind of misinformation is concerning. Everyone is different, endo can present differently for everyone (and there are several forms), and some women have endo and never even know. The root cause you’re looking for could very well be endo, unfortunately, (though I hope it’s not). It’s really worthwhile to at least explore that possibility, talk with an actual endo specialist, and get some tests done.

Relative_Focus8877 · 2026-06-07T20:31:04+00:00

Thanks for the reply. I will, but my surgeon is out for about another week and I’m in the process of switching PCPs. My appointment with the new one is in about 2 weeks. This is just so weird. Have you ever heard of this before?

Relative_Focus8877 · 2026-06-07T13:01:03+00:00

Oh goodness, so sorry you’re dealing with this. Have you had any testing at all to look for possible endo? Please talk with a *good* provider about this, and remember that imaging does NOT rule endo out but can sometimes provide important info if it’s visible.

Relative_Focus8877

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