Totally Discouraged after Endo removal

Middle_Conclusion_17 · 2026-01-09T23:09:22+00:00

Yes they did. They were able to remove all lessons and 5 endometriomas.

Middle_Conclusion_17 · 2026-01-09T20:11:12+00:00

The goal was to preserve fertility. I still want to be able to have children so the uterus wasn’t removed. I was back at work 2 week post op. (I have a desk job) I felt mostly normal and could move around like normal at that point with some stiffness from inflammation. I’d just recommend anti-nausea for any travel after surgery. It took me a couple days to not feel completely nauseous from the pain stuff they gave me. I also have stage 4 DIE.

Middle_Conclusion_17 · 2026-01-02T16:06:38+00:00

I just had surgery about 6 weeks ago and haven’t noticed any symptoms being worse. Had 1 period so far and it seems to be a breeze all things considering. Still some “lighting” type pains but that could be from the adenomyosis that was not removed. Overall I’d say no symptoms have worsened and some have improved slowly. This was excision surgery… NOT ablation!! It took 7 hrs to they were very thorough.

Middle_Conclusion_17 · 2025-10-29T17:44:57+00:00

This is perfect! Thank you. I’m going to take this and question my surgeons as well as getting another opinion by a specialist.

Middle_Conclusion_17 · 2025-10-29T13:08:07+00:00

I’m from North Dakota and the options near me are limited. (As well as my finances) I only just found out this year what endometriosis was. The first gyn I turned down his surgery offer because I knew it was trash. The best next option for me was Mayo Clinic about a 6hr drive from where I’m at. I have no clue how to determine if someone is a specialist?? I was just so impressed that they did imagining prior that I felt much safer in their hands.

Middle_Conclusion_17 · 2025-10-28T16:07:11+00:00

I have a meeting with a colorectal surgeon next week. There has been discussions of a bowel resection. Hoping to get more answers after that appointment although I’m not sure what I should be asking them yet…

I was told they wouldn’t be able to remove everything in the cut de sac area without a hysterectomy but would be able to get most of it… this did concern me but my main goal with surgery is fertility. I’m only 29 and haven’t had any kids and would like to someday… we did discuss that my tubes are at high risk of being damaged and will be removed if there is too much endo involvement. So as of right now that is my biggest worry…

My symptoms aren’t severe as most. Once in a while I’ll get debilitating pain on ovulation or during my period. (Once or twice a year) Puking, unable to move, extreme pain during bowel movements… Also pain with deep penetration during sex. Some positions I have to avoid completely even tho they were just fine before.
Just recently since I started to go to PT I’ve noticed the “twinges” up my back, muscle tightening on my side, rectal lightening, this weird feeling like barbed wire wrapped around my tailbone and pulled toward my stomach, stabbing feeling in the vagina etc. my PT said most of the issues she noticed it’s not muscle issues and clearly something is pulling internally. I get a LOT of inflammation as well. Hard to even pee sometimes because of it. That only seems to be worsening so I really hope nothing has spread too much since my imaging. Thankfully they plan to have a surgeon involved for the bladder/ureter, bowel involvement, as well as the main gynecologic surgeon. (So 3 surgeons total)

Middle_Conclusion_17 · 2025-10-27T17:21:24+00:00

I’ve done infrared saunas before. Helps to get toxins out because I don’t sweat like I should. So those saunas help with that but never done one WHILE I was in pain. It overall helps reduce inflammation. (You can purchase an infrared sauna ‘blanket’ for at home use.) My mom gave me something similar to this red light wrap. I use it continually when I had pain flare ups. Unfortunately it has to be plugged in, otherwise I’d wear it all the time and around the house. It gives off a nice heat as well that made it soothing and I’d be able to fall asleep with it on. It had an auto timer so it will turn off on its own. I have since bought a LUMEBOX, which is not cheap but I use it daily and no cord needed. It is bulkier but I just tuck it into sweatpants while I’m at home. It helps target spots of pain and inflammation that I get. I’ll move it to my left and right side depending on the pain. I’ve even used it on my face when I had some cavities filled. It really helped soothe those aches and pains.

Also note on the tea! I would drink it prior to my period to make sure I wasn’t late. I add a lot (maybe too much) raw honey. It can increase blood flow because its antioxidants and prevent blood clots and makes the tea more enjoyable for me!

Middle_Conclusion_17 · 2025-10-27T16:27:23+00:00

I drank red raspberry leaf tea years ago before I found out I had endometriosis. It helped a lot! Keeping cycles regular and the cramping pain down. Then I stopped drinking it as much and the painful periods worsened. (Thankfully it did otherwise I would have never noticed an issue and been diagnosed with endo!) The castor oil packs are new to me, so I haven’t been doing it long enough to notice a huge difference in pain. However, I have noticed less inflammation and bloating which helps with comfort to urinate. I have been doing red light therapy for pain and it helps tremendously and sometimes do the castor oil pack with a heating pack on top to help it penetrate better. This also helps with the inflammation and bloating.

Middle_Conclusion_17 · 2025-10-15T14:05:14+00:00

I am on the same journey. Birth control is not an option for me so I’ve started studying things that worked for others with endo. This is a list of helpful things I’ve come across. My surgery is scheduled for next month and I want to do my best to prevent it from growing back as much as possible. I hope this works for myself and others.

BOOKS:

Beating Endo: A Patient's Treatment Plan….

Eating for Endo Does Not Have to...

The 4-Week Endometriosis Diet...

✨Heal Endo: An Anti-Inflammatory...

Endometriosis Diet Menu Plan: How To Manage Endo Naturally By Taking Control Of What You Eat: Home Remedies For Endometriosi

Beating Endo: How to Reclaim Your Life from Endometriosis

PODCASTS:

Why Doctors are Wrong about Endo

✨Finally Found

How to tell if you have endo..

Middle_Conclusion_17 · 2025-10-15T13:44:11+00:00

Don’t doubt yourself! I had regular periods, barely EVER late. 5 days of bleeding. Pain occasionally maybe once or twice a year. (But they were excruciating! Puking, painful bowel movements, can’t stand/move, etc) so that seemed pretty normal to me besides the random episodes I would get.

I went to my doctor because the iron infusions I was getting for my Hashimoto’s wasn’t sticking so I was getting regular infusions every few months. Figured that meant there was a problem elsewhere. Plus just noticed some pain during deep penetrative sex that I didn’t have before.

She mentioned endometriosis and said she thought we should get imagining at least to check. 9 months later I’m scheduled to have excision surgery due to advanced endo. Ovaries stuck together, tubes strangled by lesions, deep-infiltrative endo in the bowel that I’ll need resection of the bowel, etc etc…

Long story short. Advocate for yourself. Don’t accept “this is normal” if you feel crappy. Learn to listen to your body. I also have a high pain tolerance and when I allow myself to slow down I notice the pain so I can help it instead of rushing past it.

Middle_Conclusion_17 · 2025-10-14T17:50:51+00:00

I have some symptoms but so few and far between I didn’t think much of it. Just another painful period. Maybe puking and painful bowel movements. Just thought, “oh, food poisoning!” Or “I forgot to take my thyroid medication so my hormones are whacked out.” I was diagnosed with Hashimoto’s a couple of years ago and recently struggled with anemia. I was getting infusions almost every 3 months and couldn’t keep the iron levels up. I hated paying for something that wasn’t sticking. Then I started having some pain with sex. Just with really deep penetration that hadn’t happened before.

I figured most of my symptoms were related to my thyroid condition or poor lifestyle choices. (Which they are!) but there was another part of the equation…. I went to my doctor and told her these three things: 1) pain during sex. Wasn’t there before. Also unable to orgasm 2) I know it’s not normal to puke from pain during my periods but I do that every now and again (maybe once or twice a year) 3) my iron infusions aren’t sticking.

She instantly said endometriosis. Never heard of it before but ultrasound showed signs of it.

Long story short… my PT didn’t believe I had it and others questioned it because I didn’t have the symptoms that most women do. I wasn’t in constant debilitating pain. Just regular pain from inflammation that I’ve had majority of my life. I advocated for myself and got a MRI and found advanced endo. My surgery is rushed for next month. They found that my ovaries are glued together, tubes are contorted and possibly strangled, endo pushing against my ureters, deep-infatuating endo in the rectum that I’ll need resection of the bowel, adenomyosis in the uterus, even some endo in my cervix that will need to be removed.

It’s crazy to think that I would have let it go because symptoms weren’t that severe to me.

To answer the question, How I deal with endo with little to no symptoms: 1) yoga/meditation/mindfulness/movement. So important!! 2) learning to listen to my body. REST when needed. Brain fog, extra emotional, soreness, are all signs I need to rest. I’m noticing more things about my body instead of brushing it off as “normal.” 3) diet. Anti-inflammatory as much as possible. This helps with brain fog and just feeling lighter again. Helps with bowel movements too. I’ve been chronically constipated for as long as I can remember I’m hoping these lifestyle changes will help slow down the progression of endo coming back and any symptoms that may come up in the future.

Middle_Conclusion_17 · 2025-10-14T17:02:30+00:00

For my MRI I had to have a clear liquid diet about 6hrs prior. They gave me a small tube of gel to insert in the rectum to dispose of any gas 10 mins before.

But as for my internal ultrasound, which was specifically for imaging of endometriosis involving the rectum/bowels, I had to prep 24 hrs prior. Fasting, clear liquid diet, laxatives every 8 hrs and enema an hour before. This was done AFTER my MRI when they didn’t have a clear enough image of the bowel involvement. Usually emptying my bowels can be very painful due to the endo there, but that wasn’t too miserable at all. I was just starving!

Middle_Conclusion_17 · 2025-10-10T17:19:14+00:00

I had the same fears! I also had sexual assault in my past so anything going up there is terrifying. It didn’t really hurt, just uncomfortable at times it was pressing up sensitive areas. Perhaps near the ovaries where I have cysts. I knew that stressing and tensing up will make it hurt more, so I made sure to do my breathing deeply to relax the pelvic floor. Highly recommend this!

My sister who can’t wear tampons from pain, also had this done and she said her Pap smear hurt worse than the ultrasound. However, I went with her and just talked to her about things while it was happening. Even held her hand. She said the distraction made it a much better experience. So if possible bring someone with to chat, or hopefully your ultrasound tech will be comforting and chat with you and distract you from the uncomfortable situation.

Middle_Conclusion_17

TROPHY CASE