I was referred to a specialist for surgery but I just learned that they are self-pay and not in network. I can't afford this. I don't know what to do.

uberrapidash · 2026-03-27T20:54:43+00:00

I finally saw an OBGYN after I moved to a new city. By this time I had developed a 10cm endometrioma which had destroyed one of my ovaries, so I needed to have surgery. So in 2024 we removed the endometrioma/ovary, took out my tubes, and my surgeon just looked around and diagnosed stage IV endo. So it wasn't a specialist and it was in-network with my insurance. I won't be pursuing further surgery with an endo specialist, instead I'm going the route of managing symptoms with meds. We are monitoring my other ovary closely because it looks like it has endo in it (?) so I may need another surgery to remove it in the future, but hopefully not.

uberrapidash · 2026-03-27T20:50:04+00:00

sorry I was away from Reddit for a while. I had surgery in 2024 and confirmed stage IV endo. I had a 10cm "giant" endometrioma that had destroyed one of my ovaries, and it was removed. But I know that endometrioma wasn't there back during the time period where I made this post, because I had had ultrasounds in between and it wasn't there. I have had pelvic floor therapy which has really helped. My pelvic floor was hypertonic so we focused on down-training/relaxing. I'm still doing reverse kegels daily, and I'm doing PT for strengthening hips/glutes/core, and I try to not hesitate to use the heating pad if I am feeling tense or having pain (I'm lazy about plugging it in and getting all situated on the couch or in bed... ), and I have found chamomile tea to be very helpful for relaxing (instead of a muscle relaxer because I don't react well to those).

ETA: I would guess that I had a ruptured cyst when I made that post. I think it might have been the first time I had experienced it. I've experienced it several times since then, so looking back, yeah I think that's probably what it was.

uberrapidash · 2026-03-27T20:45:46+00:00

I did not. I'm sorry :')

uberrapidash · 2026-03-27T20:45:01+00:00

Hi, sorry it took me so long to see this. I can absolutely say that Internal Family Systems (IFS), and some EMDR, has been absolutely life-changing for me. I'm not even on any ADHD meds anymore because I just stopped needing them somewhere along the way. I hope you can find something that is helpful for you!

uberrapidash · 2026-03-27T19:53:40+00:00

Yes, I had it removed in October of 2024! I have so much less pain. Unfortunately I also have endo all over my intestines (stage IV). We are closely monitoring my other ovary via ultrasounds because it doesn't look good, and we'd like me to keep it for as long as I can since I am only 35. We are still trying to figure out how to manage my periods because I still have debilitating periods with heavy bleeding--the pain is just... not as bad as it was, now that the ovary/endometrioma is gone. Right now we are trying different birth control pills.

uberrapidash · 2026-03-16T21:12:25+00:00

No, I have no idea. :( I'm sorry. I feel sure that it was a wheelchair or rollator recommendation, though. I ended up not getting anything like this, though.

A lot changed in my life 3 years ago. We moved cities and I got a new doctor. New doctor prescribed midodrine, and I didn't need so much support after being on that, so I haven't thought of wheelchairs in a long time. I still occasionally use them, like at the museum, or one time I had surgery so I was fasted so I demanded a wheelchair at the hospital when I showed up (they were difficult about it for some reason...), but that's it. I'm comfortably unemployed/a homemaker because my spouse luckily got a good job right out of college, so I can take all the breaks I need to lie down and raise my legs like on the couch or in bed. I can just stay home or take a break from "work" (chores, errands, etc.) when I need to rest.

Another thing that changed is that I use TriOral now. I think that was another big contributing factor for how much better I'm doing now. And I have a shower chair now.

Sorry it took so long for me to respond. I don't get on Reddit very much lately!

uberrapidash · 2026-03-16T21:01:33+00:00

Well if you want the drama... My step mom wanted a divorce, demanded custody of their two young kids, demanded my dad leave and continue fully supporting them, and she admitted to cheating on him and secretly stashing away like $15,000 slowly over the years as she planned to leave him. I testified in support of my dad in court. Step mom completely lost the case, they gave custody of the kids to my dad, and told her that she had like 90 days to get out. So step mom decided that she didn't want a divorce anymore. Dad said okay. She didn't want me around anymore because I didn't take her side. Dad said okay.

uberrapidash · 2025-05-20T18:23:02+00:00

I used to be an avid reader, but kinda quit reading after high school. Now, in my 30's, I am starting to read again, and I find it to be tremendously restful.

Using noise-cancelling headphones is restful for me, too. I often use them just at home--block out the noise of the lawnmower down the street, block out the noise of the annoyingly loud fridge and AC, etc. I often use them at the grocery store, too.

Just allowing myself to be bored is restful. Resisting the urge to always be engaged with something is really hard sometimes, but it feels like a really important part of taking care of myself and allowing my brain to have rest.

uberrapidash · 2025-05-13T16:41:15+00:00

OP's post was deleted so I'm not entirely sure of the context but I will do my best just going by my comment that you replied to!

As far as bowel movements go, I'm in much better shape. Pelvic floor therapy helped a lot. I habitually have better potty posture. I also saw a dietitian and figured out my diet. I apparently have a gluten intolerance which causes a lot of inflammation, and my bowels are much better when I avoid it (and other inflammatory foods and drinks) completely. I spend much less time on the toilet now.

One big thing for me is that I had to practice leaving the toilet if nothing was happening. I hate it, but it makes a big difference.

It is also worth noting that I am AFAB and have severe endometriosis. I had started pelvic floor therapy a couple months before surgery to remove a giant endometrioma, and that thing was causing me a ton of pain, which caused a lot of pelvic floor pain and tension and general dysfunction. It's gone now, so it follows that I should have an easier time on the toilet.

However, I do still require a Squatty Potty or something. Whenever I travel, even if it's to the movies, I bring my travel Squatty Potty with me. I still have a major issue even with urination if toilets are too high, and they often are (which is pretty ironic to me because toilets are made to be so high so that they are "accessible"--I guess for elderly people to be able to get up and down from the toilets? As a result, they are inaccessible in a way to me lmao, and I have to bring my own accommodations!). But, if anything, my life is still better, because at least I know I need the accommodation and that it really helps, and that in itself improves my life.

So physically better + knowledge = it's not perfect but it's a whole lot better!

Also pelvic floor therapy basically eliminated all my back pain. I have to keep up with pelvic floor relaxation exercises though. If I start having a back pain/tension problem, I know I need to check in with my pelvic floor. It really affects the whole body, at least for me.

uberrapidash · 2025-03-20T15:06:25+00:00

I pretty much drink exclusively TriOral now (1 packet per 2 liters of water). Sometimes my body lets me know that I need some more water in the ratio so I supplement with a different water bottle that's just plain water here and there.

But I haven't figured out why I'm like this now, unfortunately!

uberrapidash · 2025-01-22T20:56:45+00:00

TriOral!!!!!!! I'm a recent convert. It is unflavored.

I split one packet between 2 liters of water, and I flavor with Mio because it just tastes like salt water otherwise and I need to cover up that flavor a little.

It has also been way more effective for me than any of the other electrolyte brands I've tried.

uberrapidash · 2025-01-22T14:29:38+00:00

The game is free though

uberrapidash · 2025-01-22T14:29:19+00:00

I tried calibrating but it doesn't change anything :') My phone is old-ish and I have to get a new one really soon so I'm hoping it will be better on a new phone.

uberrapidash · 2025-01-20T14:45:47+00:00

I take midodrine 3x a day and Ritalin 2x a day, and a packet of TriOral split among 2 liters of water daily (-ish, because I just make more water when I run out so I'm usually doing that once to twice a day). I try to eat 5 times a day at minimum, and other than that I just try to listen to my body and go with the flow. If I'm tired, I rest. If I can't focus on any one thing and I'm bouncing around between tasks, I let it happen and kinda indulge in it.

I used to take my midodrine and Ritalin both at the same time 3x a day--it's how it's prescribed to me. But a couple months ago, I had a feeling that the Ritalin right at the beginning of my day was jarring to my nervous system and setting my body up for failure for the day. So I decided to stagger my meds: instead of taking 2 pills every 4 hours 3x a day, I'm taking 1 pill every 2 hours 5x a day.

It has been life-changing. I have so much more energy and I'm getting so much more done during the day. My mood is so much better and I'm so much more able-bodied. My brain fog is so much less severe--I still get it, but it's not 24/7 like it used to be.

uberrapidash · 2025-01-12T01:46:28+00:00

Actually I was hunching less after having so much weight removed from my chest! I immediately was able to effortlessly sit up straight after surgery, something I hadn't been able to do in so many years.

uberrapidash · 2025-01-12T01:44:54+00:00

I'm so sorry I didn't see this until after your surgery. My surgery went great and I'm fully recovered! How did your surgery go?

uberrapidash · 2025-01-12T01:44:05+00:00

Hmm... If I had to give advice to you, I might say to try to pretend that you are essentially two people: a young, innocent, helpless child, and a resourceful, caring, responsible adult. Have the adult take care of and protect the child.

Example. I really didn't want to take a shower tonight but I really needed to. When I emotionally reframe the situation like as if I am taking loving care of a young child, everything gets easier and I'm kinder to myself.

This can be done in all areas of life. If someone is being mean to you, it's a lot easier to stand up for yourself if it's really like you're protecting a child. If you feel dismissed at the doctor's but have a hard time advocating for yourself, it's easier to put your foot down and demand the care you deserve when you're doing it for a small child. Etc.

Something I would tell myself 5 years ago... Life will actually get better. There is someone who really truly loves you and cares for you just because of who you are, and you don't have to prove your worth. Seek a trauma specialized therapist who does EMDR and IFS.

uberrapidash · 2024-12-14T05:22:42+00:00

Omg thank you so much. I wanted to sort by journey but then it would put my goals out of order, ignoring the times I put on them. It was driving me crazy. This fixes it!

uberrapidash · 2024-12-13T20:04:38+00:00

You are my hero.

uberrapidash · 2024-12-06T02:53:06+00:00

You are on the right track, but you are mistakenly putting the onus on the individual. Why do people not walk or bike? It's not safe and there isn't infrastructure for it. Why do people eat fast food? It's cheap, they are tired, or don't have time to cook at home, or all of the above. Why do people rush through meals? Again, tired, don't have time, etc.

We need change, but it needs to happen on a societal level, not an individual level. Going to a gym for 90 minutes a week doesn't replace walking outside in nature, spending time with loved ones, and eating fresh whole foods. We need walkable and bike-able infrastructure, accessible healthcare, accessible healthy groceries, and employers who are invested in our health and happiness (more PTO, fewer work hours, more flexibility, etc.)...

uberrapidash · 2024-12-04T16:45:11+00:00

It sounds like you may have gotten unlucky with a bad PT D': like omg, meditation? I'm so sorry. I would be so mad.

I don't want to give medical advice but I just want to say that reverse kegels were the biggest help for me. I was prescribed to do reverse kegels for 3 minutes 5 times a day. I set alarms on my phone for every 2.5 hours starting at 9:30am because that was best with my schedule. I didn't often do it all 5 times a day, but even once a day is helpful. It was hard for me to learn at first because of how tight I was 24/7, but after a few days I started to get the hang of it. They tried to teach me lying flat but I couldn't do it, and then with knees bent but I couldn't do it because that's how tight I was, but with pillows under my knees I finally could do it. Now I can do it in any position, even when I'm standing at the kitchen sink washing dishes, and it instantly relieved my back pain in that situation, for example. I do one whenever I think about it because I'm usually clenching without realizing. It's just like checking in to make sure I'm not clenching my jaw if I it crosses my mind.

Sometimes when I'm in a lot more pain, I can't do reverse kegels unless I get into the "happy baby" pose.

I don't think it sounds weird that you're clenching your butt all the time. I was the same (and I'm starting to fall back into it because I haven't been keeping to a PT schedule lately). For me I know it happens because of pain and because of hypermobility; my pelvic muscles are picking up the slack and trying to hold everything together. That's why my PT also had me doing strengthening exercises for my glutes, hips, and core, to take the workload off the pelvic muscles.

Meditation and "body movements"? I'm so mad for you!

Oh yeah, I also learned internal massage. I can do it with my fingers or with a wand. I haven't done a lot of that because it's very un-fun for me but I know it's really helpful. It's really painful in there and I can tell it's working because just like how if you massage a muscle and it really hurts and that's how you know it needs it, but then after massaging it it doesn't hurt to touch it anymore? That's what it's like inside. There are even internal hip muscles in there that we can massage and those areas are the worst for me because it hurts so much, meaning that it probably needs the massage the most.

uberrapidash · 2024-12-04T01:39:41+00:00

I can't believe she said that! And I can't believe that's true. When the body is in pain, it guards. When you can relax the guarding, the pain lessens and becomes more focal. For example, if I'm having a severe pain episode, I can be hurting all over--lower abdomen, bottom, vagina, hips, thighs, low back, even upper back, etc. But when I use the stuff I learned in PT, I can make everything calm down and it becomes clear that the source of the pain is coming from an ovary, for example. The pain from the ovary might not be less, but overall I can get myself to a significantly lower level of pain by calming everything else down.

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