clovenhooves The Personal Is Political Women's Health Discussion Any endometriosis sufferers here?

Discussion Any endometriosis sufferers here?

Discussion Any endometriosis sufferers here?

 
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komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
357
Feb 26 2025, 2:33 PM
#1
I've got the surgery to both diagnose and treat endo coming up early next month. It's pretty crazy that you can't get endo diagnosed without literally having a camera stuck in your guts, but it is what it is.  :harold: Anyway, was just wondering if anyone else has endo or suspected endo. I'm pretty nervous about the procedure so I'd love to hear from others if you've had it done.
komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
Feb 26 2025, 2:33 PM #1

I've got the surgery to both diagnose and treat endo coming up early next month. It's pretty crazy that you can't get endo diagnosed without literally having a camera stuck in your guts, but it is what it is.  :harold: Anyway, was just wondering if anyone else has endo or suspected endo. I'm pretty nervous about the procedure so I'd love to hear from others if you've had it done.

Feb 26 2025, 11:03 PM
#2
I don't have endo myself (so far... with how specifically awful my periods were before BC I honestly wouldn't be surprised if I do have endo but the tissue was too small to see haha) but as someone who went through the shove-a-camera-up-your-vagina rigamaroll a few times and finally found a solution that helped I can't support you enough that you're seeking treatment. It's an absolute life-changer and my only regret was not doing something about it sooner! :)

Like, I get it, if it's not bone it won't show up on an x-ray, but it's crazy how we have such advanced tech in so many areas but we still have to resort to shoving cameras into people a lot of the time for diagnosis lol. Hope someone somewhere is working on a different method!

Though that's all easy for me to say when my treatment is "just swallow a pill :)" and yours is literal surgery lol, I can't imagine how you must be feeling. If it helps, my boyfriend had surgery for a chronic pain issue done not too long ago, and despite his anxiety leading up to the surgery plus the long recovery and residual pain for months afterward, he's extremely happy he decided to go through with it!

I'm sorry I don't have more to say than that (and I hope me replying here, not having endo and not even having had surgery before, isn't an asshole move OTL) but I'm cheering you on and hoping the surgeries go smoothly for you!!  :meowheart: And if you ever want advice to help cope with and/or need to rant about your painful periods with someone who (somewhat) gets you, I'm here for you!
Edited Feb 26 2025, 11:10 PM by Shroom.
Shroom
Feb 26 2025, 11:03 PM #2

I don't have endo myself (so far... with how specifically awful my periods were before BC I honestly wouldn't be surprised if I do have endo but the tissue was too small to see haha) but as someone who went through the shove-a-camera-up-your-vagina rigamaroll a few times and finally found a solution that helped I can't support you enough that you're seeking treatment. It's an absolute life-changer and my only regret was not doing something about it sooner! :)

Like, I get it, if it's not bone it won't show up on an x-ray, but it's crazy how we have such advanced tech in so many areas but we still have to resort to shoving cameras into people a lot of the time for diagnosis lol. Hope someone somewhere is working on a different method!

Though that's all easy for me to say when my treatment is "just swallow a pill :)" and yours is literal surgery lol, I can't imagine how you must be feeling. If it helps, my boyfriend had surgery for a chronic pain issue done not too long ago, and despite his anxiety leading up to the surgery plus the long recovery and residual pain for months afterward, he's extremely happy he decided to go through with it!

I'm sorry I don't have more to say than that (and I hope me replying here, not having endo and not even having had surgery before, isn't an asshole move OTL) but I'm cheering you on and hoping the surgeries go smoothly for you!!  :meowheart: And if you ever want advice to help cope with and/or need to rant about your painful periods with someone who (somewhat) gets you, I'm here for you!

komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
357
Feb 27 2025, 2:02 PM
#3
Thanks for the kind words, Shroom! :) I've never had any kind of surgery that entailed being cut open before, so I'm low-key freaking out 🥲 I'm glad you found a treatment for your particular ailment. We should swap painful period stories/how we deal with them. Maybe not in this thread specifically, but a new one? 🤔 I'll get around to making one at some point!
komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
Feb 27 2025, 2:02 PM #3

Thanks for the kind words, Shroom! :) I've never had any kind of surgery that entailed being cut open before, so I'm low-key freaking out 🥲 I'm glad you found a treatment for your particular ailment. We should swap painful period stories/how we deal with them. Maybe not in this thread specifically, but a new one? 🤔 I'll get around to making one at some point!

Mar 5 2025, 3:22 PM
#4
(Feb 26 2025, 2:33 PM)komorebi I've got the surgery to both diagnose and treat endo coming up early next month. It's pretty crazy that you can't get endo diagnosed without literally having a camera stuck in your guts, but it is what it is.  :harold: Anyway, was just wondering if anyone else has endo or suspected endo. I'm pretty nervous about the procedure so I'd love to hear from others if you've had it done.

I've had surgery which confirmed and removed. It took me 13 years and I had to go to another country as doctors in the place where I lived did not take me seriously.

The surgery itself wasn't bad. Recovery was as expected. It didn't improve my symptoms unfortunately but at least now I have proof. 

I wish you the best of luck and I hope you find relief!
ExitStageLeft
Mar 5 2025, 3:22 PM #4

(Feb 26 2025, 2:33 PM)komorebi I've got the surgery to both diagnose and treat endo coming up early next month. It's pretty crazy that you can't get endo diagnosed without literally having a camera stuck in your guts, but it is what it is.  :harold: Anyway, was just wondering if anyone else has endo or suspected endo. I'm pretty nervous about the procedure so I'd love to hear from others if you've had it done.

I've had surgery which confirmed and removed. It took me 13 years and I had to go to another country as doctors in the place where I lived did not take me seriously.

The surgery itself wasn't bad. Recovery was as expected. It didn't improve my symptoms unfortunately but at least now I have proof. 

I wish you the best of luck and I hope you find relief!

komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
357
Mar 5 2025, 9:05 PM
#5
(Mar 5 2025, 3:22 PM)ExitStageLeft I've had surgery which confirmed and removed. It took me 13 years and I had to go to another country as doctors in the place where I lived did not take me seriously.

The surgery itself wasn't bad. Recovery was as expected. It didn't improve my symptoms unfortunately but at least now I have proof. 

I wish you the best of luck and I hope you find relief!

Thank you so much for the info! I'm sorry your symptoms didn't improve. What bothers you the most? For me, it's the fatigue and brain fog. It's the absolute worst not even being able to think clearly. Feels like I'm a prisoner in my own mind, lol.

I actually just had the surgery this morning. Super groggy right now. They found some and removed it, so we'll see if it actually helps. Per your experience and stuff I read online, it seems like results can be a mixed bag, unfortunately. :( Fingers crossed.
komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
Mar 5 2025, 9:05 PM #5

(Mar 5 2025, 3:22 PM)ExitStageLeft I've had surgery which confirmed and removed. It took me 13 years and I had to go to another country as doctors in the place where I lived did not take me seriously.

The surgery itself wasn't bad. Recovery was as expected. It didn't improve my symptoms unfortunately but at least now I have proof. 

I wish you the best of luck and I hope you find relief!

Thank you so much for the info! I'm sorry your symptoms didn't improve. What bothers you the most? For me, it's the fatigue and brain fog. It's the absolute worst not even being able to think clearly. Feels like I'm a prisoner in my own mind, lol.

I actually just had the surgery this morning. Super groggy right now. They found some and removed it, so we'll see if it actually helps. Per your experience and stuff I read online, it seems like results can be a mixed bag, unfortunately. :( Fingers crossed.

Clover
Kozlik's regular account 🍀🐐
862
Mar 5 2025, 9:21 PM
#6
Yay, you did it! I hope you recover quickly, komorebi! ❤️‍🩹🙏
Clover
Kozlik's regular account 🍀🐐
Mar 5 2025, 9:21 PM #6

Yay, you did it! I hope you recover quickly, komorebi! ❤️‍🩹🙏

komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
357
Mar 6 2025, 9:50 AM
#7
(Mar 5 2025, 9:21 PM)Clover Yay, you did it! I hope you recover quickly, komorebi! ❤️‍🩹🙏

Aww, thanks, Clover 🥹 I'm working on it! In the meantime, anyone want to see photos of my guts? /j 🤣
komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
Mar 6 2025, 9:50 AM #7

(Mar 5 2025, 9:21 PM)Clover Yay, you did it! I hope you recover quickly, komorebi! ❤️‍🩹🙏

Aww, thanks, Clover 🥹 I'm working on it! In the meantime, anyone want to see photos of my guts? /j 🤣

Mar 7 2025, 8:44 AM
#8
(Mar 5 2025, 9:05 PM)komorebi
(Mar 5 2025, 3:22 PM)ExitStageLeft I've had surgery which confirmed and removed. It took me 13 years and I had to go to another country as doctors in the place where I lived did not take me seriously.

The surgery itself wasn't bad. Recovery was as expected. It didn't improve my symptoms unfortunately but at least now I have proof. 

I wish you the best of luck and I hope you find relief!

Thank you so much for the info! I'm sorry your symptoms didn't improve. What bothers you the most? For me, it's the fatigue and brain fog. It's the absolute worst not even being able to think clearly. Feels like I'm a prisoner in my own mind, lol.

I actually just had the surgery this morning. Super groggy right now. They found some and removed it, so we'll see if it actually helps. Per your experience and stuff I read online, it seems like results can be a mixed bag, unfortunately. :( Fingers crossed.

I hope you start to feel better soon!

Just having it confirmed is very important, so I'm glad that yours waa successful! Make sure to have a heating pad handy during your next period, as the first one or two after surgery can be more uncomfortable/painful than expected (though I'm sure you're used to that!). That doesn't mean the surgery wasn't successful, it can take up to 6 months before you really feel like it made a difference, and I really hope you're one of the women who does have long-term relief following it. I'm rooting for you!
ExitStageLeft
Mar 7 2025, 8:44 AM #8

(Mar 5 2025, 9:05 PM)komorebi
(Mar 5 2025, 3:22 PM)ExitStageLeft I've had surgery which confirmed and removed. It took me 13 years and I had to go to another country as doctors in the place where I lived did not take me seriously.

The surgery itself wasn't bad. Recovery was as expected. It didn't improve my symptoms unfortunately but at least now I have proof. 

I wish you the best of luck and I hope you find relief!

Thank you so much for the info! I'm sorry your symptoms didn't improve. What bothers you the most? For me, it's the fatigue and brain fog. It's the absolute worst not even being able to think clearly. Feels like I'm a prisoner in my own mind, lol.

I actually just had the surgery this morning. Super groggy right now. They found some and removed it, so we'll see if it actually helps. Per your experience and stuff I read online, it seems like results can be a mixed bag, unfortunately. :( Fingers crossed.

I hope you start to feel better soon!

Just having it confirmed is very important, so I'm glad that yours waa successful! Make sure to have a heating pad handy during your next period, as the first one or two after surgery can be more uncomfortable/painful than expected (though I'm sure you're used to that!). That doesn't mean the surgery wasn't successful, it can take up to 6 months before you really feel like it made a difference, and I really hope you're one of the women who does have long-term relief following it. I'm rooting for you!

komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
357
Mar 11 2025, 11:57 AM
#9
@ExitStageLeft: 💜💜 Thank you for the useful advice! I'll make sure to keep the heating pad handy. And yeah, it's kinda crazy that it might take that long before I start feeling results (if any), but I guess that's what happens when your whole body is wracked with chronic pain from constant low-grade inflammation... 🥲

Post-surgery update, for anyone who might find it useful in the future! The biopsy came back and they did confirm it was endometriosis. Doc said my case is comparatively mild, so it wasn't plastered all over my organs or anything. She did also find that my small intestines were stuck to my pelvis, so they separated those. Apparently that sort of thing is common after abdominal surgery, but since I've never had surgery before, it was probably a past infection or maybe also because of the endo.

In terms of recovery, it's been pretty okay. Very sore and tired for the first five days, but I'm starting to come out the other side of that. They warned me about back and shoulder pain due to the gas they use during the operation working its way up and out of your body, and they weren't kidding. Worst shoulder and back ache I've ever had; it was literally worse than the incision pain LOL. I also sometimes felt gas working its way up through my chest...? It felt like other parts of me were burping. Very weird and kind of disturbing. 😂

Two side effects they didn't talk about before the surgery:

  1. I struggled with terrible bloating—on Sunday, my whole lower body down to my ankles was so swollen I looked five months pregnant. If that tends to happen to you, ask your doctor if you can take an OTC diuretic; that helped me a ton. Lying down with legs elevated also helped, though be careful about doing this (make sure the swelling is even; if it's uneven you might have a clot or something, in which case do NOT lie down with your legs elevated).

  2. The vaginal bleeding. Like...apparently it's just normal to bleed from the vagina. A lot. They told me to call them if it was soaking through one pad an hour. Meaning anything less than that was apparently not cause for concern...? 🙃 I was bleeding through one pad every couple of hours, which was quite alarming. Monitoring my blood pressure every couple of hours reassured me that I wasn't like bleeding out or something, lol.

Overall, the first week of recovery wasn't fun, but I'm glad I did it just to finally have an answer. I hope someone finds this information useful in the future!
komorebi
“I am not free while any woman is unfree, even when her shackles are very different from my own.” – Audre Lorde
Mar 11 2025, 11:57 AM #9

@ExitStageLeft: 💜💜 Thank you for the useful advice! I'll make sure to keep the heating pad handy. And yeah, it's kinda crazy that it might take that long before I start feeling results (if any), but I guess that's what happens when your whole body is wracked with chronic pain from constant low-grade inflammation... 🥲

Post-surgery update, for anyone who might find it useful in the future! The biopsy came back and they did confirm it was endometriosis. Doc said my case is comparatively mild, so it wasn't plastered all over my organs or anything. She did also find that my small intestines were stuck to my pelvis, so they separated those. Apparently that sort of thing is common after abdominal surgery, but since I've never had surgery before, it was probably a past infection or maybe also because of the endo.

In terms of recovery, it's been pretty okay. Very sore and tired for the first five days, but I'm starting to come out the other side of that. They warned me about back and shoulder pain due to the gas they use during the operation working its way up and out of your body, and they weren't kidding. Worst shoulder and back ache I've ever had; it was literally worse than the incision pain LOL. I also sometimes felt gas working its way up through my chest...? It felt like other parts of me were burping. Very weird and kind of disturbing. 😂

Two side effects they didn't talk about before the surgery:

  1. I struggled with terrible bloating—on Sunday, my whole lower body down to my ankles was so swollen I looked five months pregnant. If that tends to happen to you, ask your doctor if you can take an OTC diuretic; that helped me a ton. Lying down with legs elevated also helped, though be careful about doing this (make sure the swelling is even; if it's uneven you might have a clot or something, in which case do NOT lie down with your legs elevated).

  2. The vaginal bleeding. Like...apparently it's just normal to bleed from the vagina. A lot. They told me to call them if it was soaking through one pad an hour. Meaning anything less than that was apparently not cause for concern...? 🙃 I was bleeding through one pad every couple of hours, which was quite alarming. Monitoring my blood pressure every couple of hours reassured me that I wasn't like bleeding out or something, lol.

Overall, the first week of recovery wasn't fun, but I'm glad I did it just to finally have an answer. I hope someone finds this information useful in the future!

Mar 11 2025, 9:13 PM
#10
(Feb 26 2025, 2:33 PM)komorebi I've got the surgery to both diagnose and treat endo coming up early next month. It's pretty crazy that you can't get endo diagnosed without literally having a camera stuck in your guts, but it is what it is.  :harold: Anyway, was just wondering if anyone else has endo or suspected endo. I'm pretty nervous about the procedure so I'd love to hear from others if you've had it done.

Yes, I have endometriosis & PCOS. The surgery didn’t take as long to recover from as I had expected. I was mostly good after about a week. I just couldn’t pick my cat up for a while because I was worried he’d scratch where the incision was.
flytraps_
Mar 11 2025, 9:13 PM #10

(Feb 26 2025, 2:33 PM)komorebi I've got the surgery to both diagnose and treat endo coming up early next month. It's pretty crazy that you can't get endo diagnosed without literally having a camera stuck in your guts, but it is what it is.  :harold: Anyway, was just wondering if anyone else has endo or suspected endo. I'm pretty nervous about the procedure so I'd love to hear from others if you've had it done.

Yes, I have endometriosis & PCOS. The surgery didn’t take as long to recover from as I had expected. I was mostly good after about a week. I just couldn’t pick my cat up for a while because I was worried he’d scratch where the incision was.

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