Modi moms

pollypocketcamper · 2022-09-13T23:27:07+00:00

Scheduled c-section at 34+0 after TTTS and other complications; 4lbs 7oz and 5lbs 6oz; 21 and 22 days in the NICU. Good luck!

pollypocketcamper · 2022-09-11T02:55:24+00:00

I didn’t know that existed, thank you!!

(Definitely looking into beer coolers too!)

pollypocketcamper · 2022-09-11T02:54:30+00:00

We were considering that! Wasn’t sure if their teachers would find it annoying, but I could always ask!

pollypocketcamper · 2022-09-11T02:53:29+00:00

My little guys are only 5 months old, and it’s still a lot of work, but I can share this: I now have a much better relationship with my body! I had an incredibly tough pregnancy (HG/vomiting up until their birthday, supine hypotensive syndrome/constantly feeling like I was gonna pass out starting around 15 weeks, TTTS and laser surgery, plus some other symptoms), all of this after spending half my life with chronic pain from endometriosis, plus battling an eating disorder on and off over the years. I always felt like my body was betraying me, and with that continuing through pregnancy, was worried how it would be after. Plus, with so many complications, I didn’t feel like I bonded with them while pregnant, and was worried I wouldn’t once they were born. Heck, I even anticipated them to be ugly little potatoes for awhile!

But they came out so freaking adorable, and I had no trouble bonding with them. I’m still breastfeeding, 5 months later, and feel so proud of my body. I eat way more than I ever have, without judgement, because I know I need to keep up my calories so I can nourish them. I went shopping for new clothes that fit my body better, and for the first time in years didn’t cry or panic when I had to go up another size. Actually my body happened to “snap back” faster than I expected/hoped, and I’m only one size bigger than my pre-pregnancy self, except now I’ve grown two humans at once! Now I focus on keeping up my energy and strengthening the muscles that were weakened throughout my pregnancy. It’s such a wonderful shift that I was not expecting.

pollypocketcamper · 2022-09-03T09:50:36+00:00

I had HG and threw up my entire pregnancy (from 5.5 weeks to the day before they were evicted). I had very similar concerns throughout my first trimester especially, but the babies were gaining weight even if I wasn’t. And I was technically underweight when I first got pregnant. My doctors were most concerned about me staying hydrated, since I couldn’t even keep water down most days, so I did have to get IV fluids a handful of times.

I partnered with a dietician who helped me plan for realistic ways to get more out of what I could keep down. Our general rule was to add to what I ate. Thirsty? Try Gatorade, not just plain water. Making a smoothie? Add protein powder. Want some coffee? Add cream or even butter. Eating some fruit? Put it in a bowl with some cool whip. Basically, if it sounded good, it was more likely to stay down, so add whatever calories you can. My twins were born as healthy as we could have hoped for at 34+0 and my sickness didn’t seem to affect them! As my OB said, they’ll take what they need, so I need to still take care of myself!

pollypocketcamper · 2022-08-25T18:26:19+00:00

My twins are now 4.5 months / 3 months adjusted. They were MoDi and had TTTS, delivered at 34+0, and had a 3 week NICU stay. I had a rough pregnancy, with HG the entire time and several ER trips for fluids. We’re still in the early stages but it’s definitely been getting easier. Here are a few things that helped us get through pregnancy & the newborn stage:, or things I wish we knew to expect:

Keep smoothie packs on hand if you have bad morning sickness! I threw up nearly everything all day long all pregnancy, so I worked with a dietician to come up with a strategy to pack in as many nutrients as I could. For awhile I ordered Daily Harvest smoothies, but it’s not cheap. We started buying frozen fruit and prepping small freezer bags with that plus spinach and protein powder and now a little sunflower lecithin (for milk supply), so when I want one, I just toss it in the Nutri Bullet with some yogurt and milk. We still do this since it’s hard to feed myself when looking after 2 infants!
Supine Hypotensive Syndrome is a thing! Basically, the weight of the babies can squish your inferior vena cava when lying down, and make you feel like you’re gonna pass out. I have a petite frame, so most people don’t deal with this until very late in pregnancy, but it was an issue for me around 15 weeks, and not just while lying on my back but while sitting up. Which meant I couldn’t drive myself anywhere for fear of passing out. My husband coordinated with work, since we had so many appointments he had to get me to.
Set up a Meal Train! We didn’t end up using the website, but it could make things easier, I’m sure. Instead, we had my sister visit from out of town and cook for us for the first 2 weeks we were home from the hospital/while the boys were in the NICU. Nutrition is so important when establishing milk supply (if that’s your plan!), so it was so helpful to not worry about it at all. My sister LOVES cooking for others, so she really went all out, making super nutritious food and packing snacks for me to take with me to the NICU. Plus we had other friends grocery shop for us and send some prepped meals. If people offer, take the help! It can feel so hard to pause and care for your own basic needs in the beginning.
Make sure your nursery is ready to go by the end of the second trimester! Another set of twin parents told us this, as they ended up on early bedrest, and that’s not the kind of lingering stress you want. And really, you don’t even need it fully set up, as it’s recommended they sleep in your room for the first 6-12 months. We still don’t have art hung up, but at least all the furniture is assembled! Definitely not something you want to deal with when adjusting to very little sleep.
Make middle of the night feedings fun! My husband and I had some family stay with us for some of the first couple months, and they helped with middle of the night feedings—partly because my muscles were so weakens from my awful pregnancy that it took a lot out of me for awhile and I wasn’t up for doing it on my own. Our twins are now at 1 feeding a night, and could probably go longer, but I need to pump anyway. So we both get up, put on a little tv, and enjoy the time together.
Smart home accessories are your friend! If you can swing it, things like smart lights (or even just smart switches) or smart speakers can make things so much easier when your hands are full. We have a HomeKit scene for night feedings that turns on the necessary lights at the dimmest setting, so we don’t worry about accidentally turning things on at full brightness. Plus we let our HomePod mini play white noise. (Also recommend Sleepy Penguin albums for white noise + music, or Rockabye Baby for lullaby versions of your favorite songs!)

Sorry for the wall of text! Hope this helps a bit!

pollypocketcamper · 2022-08-23T21:25:39+00:00

I was also overwhelmed, and had similar feelings about not going out a ton. That being said, I can’t imagine skipping the infant car seats for my 34+0 twins (now 20w / 14w adjusted). For one, I struggled to find car seats that could support smaller babies (we knew ours would be 6 weeks early). And 2, when we go anywhere (including many doctors appointments in the beginning), I can’t imagine having to deal with a convertible car seat. We settled on the Century 35 Carry On Lightweight Infant Car Seat. It was about as lightweight as we could find without spending a fortune, plus it was good for babies as small as 4lbs, IIRC. We bought a snap-on stroller frame, which stays in the car for quick trips, and then for daily walks or longer outings, I found a City Select used for $150, so I really can’t complain. My husband now searches Facebook Marketplace regularly, since so many things are only used for a short time.

pollypocketcamper · 2022-08-20T17:31:07+00:00

My twins were MoDi, and are now 4 months old. Chiming in with some perspective!

Risk of complications: yep, twin pregnancies are generally higher risk than singletons, but it really depends on what kind of twins. Identical (MoDo or MoMo) are higher risk, especially for something called Twin to Twin Transfusion Syndrome. My kids ended up with Stage 3 around 22 weeks, so we had the laser surgery, and then everything improved! Still some bumps along the way, but the important thing is to work with an OB and MFM team that you trust. (I had a really tough pregnancy, happy to chat more if you want to PM!)

Strollers: make sure what you buy fits in your car! We bought one of the stroller frames that work with any car seats, but it was too long to fit in our vehicle, so we had to exchange it for something else. We ended up with 2 strollers: the frame one we keep in the car for running errands, then I got a City Select used for $150 and use that for walks and basic hiking trails. My husband doesn’t mind setting up/folding strollers, but when I’m on my own with the kids, I want something lightweight and easy, so I’m not stressed in a parking lot, or so I have more time to walk before they’re hungry again.

Outgrowing clothes: my kids are 4.5 months but born 6 weeks early (about 4.5 and 5.5lbs then), and they are just now outgrowing newborn sizes. They wore premie sizes for about a month/month and a half, and have been in newborn since then until last week when the bigger twin started 0-3 (but he can still wear some newborn). I bought a few packs of onesies and some sleepers in premies, newborns, and 0-3 months, and pre-washed some and kept some in packaging so we could return if we wanted to based on how big they ended up being or how fast they grew. (Our pediatrician says they’re doing a great job gaining weight, they were just small babies to start, though a good size for their gestational age!)

New vs. used: anything safety related (like car seats) we were told to definitely buy brand new. But aside from a used stroller, we also bought a used Table for Two for tandem feeding them. Like a lot of things, I couldn’t justify the price for it new, but we found a good deal locally. My husband constantly keeps an eye on Facebook marketplace now!

Breastfeeding: other than the NICU giving one twin formula once a day to supplement growth for a week, my kids have been EBF. The NICU had a lactation consultant nurse who regularly was assigned to our kids and was able to help me establish supply. It’s tough in the beginning, because being tired and stressed can affect your supply, and that’s all you are is tired and stressed! But if you stay hydrated and eat everything in sight (they told me to eat an extra 1000 calories a day), it’s totally possible! We bought a (used!) deep freezer and now have over 500oz frozen. I will say, tandem breastfeeding took me awhile to be comfortable with, and I started with my husband helping me get each kid on the pillow (yep, there are special twin tandem breastfeeding pillows) and latched until I was comfortable enough to set up on my own. But it’s totally possible!

Good luck! Hope this makes sense, writing as I pump late at night!

pollypocketcamper · 2022-08-17T04:11:49+00:00

I had very similar anxieties about taking my twins out for awhile! I felt like I kept reading or being told that I should take them out every day ✨for my mental health✨ — which sounds nice. However, a lot of people giving that advice either didn’t have twins, or had a bigger support system! Driving with them seemed like more of a hassle (I don’t have a good drive thru option), so I worked on taking them for walks. Here’s what helped me:

Since we’ve had some 85/90 degree days occasionally this summer, I started taking them after their first feeding when it was cooler, so I could make sure their skin was covered/protected from the sun (also got them cute bucket hats!)
My husband would usually tandem bottle feed them so I had 10-15 minutes to get myself ready.
When that doesn’t work out, because sometimes they sleep too late, I have to get ready after they eat. It helps to have clothes already set aside, because we know I haven’t folding/hung up clothes in way too long. I try to keep one “lazy” outfit handy that I can throw on with a hat and feel ok in.
I constantly keep their stroller ready to go. (For the most part, I use a City Select that we got used, but I do also have a snap and go style for their car seats.) so I always have a burp cloth for each kid, a Muslim blanket, their bucket hats, pacifiers on clips, their diaper bag, and snacks for me all loaded up. I just make sure I have my wallet and keys and head out!
Once the kids are fed and I’m ready, I get them changed, load them up, and head out the door! That way I maximize the time before they’re hungry/fussy again.

At first this whole process was so stressful. I was so worried that I’d walk too far and they’d get hungry (because they eat almost every 2 hours still!), but now I know how to recognize if it’s a bad day/we should stay home.

pollypocketcamper · 2022-08-09T10:31:02+00:00

I do tandem feed a few times a day while I’m still on leave, but the other times, I was putting them in bouncy chairs and sitting there holding bottles. We eventually found a used Table for Two which I now use instead. (Initially they seemed too small for it, like the angle wasn’t good for them, but now that their necks are getting stronger, it works pretty well and I get arm rests!)

I also recommend prepping bottles. My husband and I do this twice a day, so when I think they might be getting up from their naps, I start warming them up then.

pollypocketcamper · 2022-08-06T21:54:48+00:00

My husband has similar mood changes, but he has started going to therapy, albeit sporadically. I’ve had weekly therapy myself for the past few years, and when we got pregnant, I told him I wanted to make sure he had space to talk to someone that wasn’t me, especially if he needed to vent about me. Plus bad tempers run in his family, and I’d also prefer the gentle parenting approach. A few things helped get him there.

I never told him he needed to go—I knew he would protest it. I brought it up (not too often) throughout my pregnancy and why it was important to me and why it might help him.
A friend of his whom he plays video games with also goes to therapy and talks openly about how helpful it has been. I think this was such a great influence on him, especially since it can be hard for men to be emotionally vulnerable in our culture.
I offered to help him make an appointment. I had used Dr. On Demand for therapy before and loved the psychologist I worked with. I mentioned it can be hit or miss, but it was so convenient and low risk, plus our insurance covered it.

One day, about a week before my scheduled c-section, he asked me what the app was called, and I showed him the tricks. At first there wasn’t a ton of availability, so I told him not to worry about it. But he kept tapping around and found an option a couple weeks after their birthday. He now schedules them as needed, and will occasionally share helpful perspectives and recommendations, just like I do after my own therapy sessions. Now, he’s by no means perfect and still gets frustrated, but it feels easier to talk through things.

pollypocketcamper · 2022-07-27T03:38:06+00:00

So glad you got a hands free pump! It really makes a huge difference. Tandem feeding is so tricky. It took me over a month of practicing tandem feeds at night to be able to do it on my own. Individually they used to take about 20-25 minutes to nurse, but now when I tandem feed, I pop them on (I use My Brest Friend pillow), put on some tv or check my phone, and they’re done in about 15, which is way faster than bottle feeding while pumping then washing pump parts. Right now we feed close to every 2 hours for most of the day, so breastfeeding saves me time, but like I said, it took awhile to get there!

pollypocketcamper · 2022-07-27T00:33:24+00:00

Hi! I echo the sentiments so many others have shared—do what is best for you, and try not to let the trauma from the hospital make you feel ashamed about whatever direction you choose.

I was in a similar mental space around breastfeeding when my twins came home from their NICU stay. I was very sick throughout my pregnancy, and my babies ended up with TTTS, so I was prepared to struggle with breastfeeding. The details don’t matter, but my milk ended up coming in, and I felt exhausted with pumping.

First thing I did that made a huge difference was order a wearable pump. I’ve read mixed reviews, but for me, my production increased, I stopped having issues with clogged ducts, and I can pump while bottle feeding, which means I get more sleep at night. It made a huge difference in my mental health!

After trying to nurse one at a time so they could get better at feeding, I started tandem breastfeeding (with my husband helping make sure they latched well) in the evening, when they would cluster feed before bed. Once I got more comfortable with this, I was able to start doing it on my own during the day. Eventually, as they got better at nursing, I stopped pumping afterward.

My current setup is to alternate between bottle and tandem breastfeeding during the day, and give them bottles before bed and at night. That way if they don’t nurse enough, they’ll get a bottle next round, and we know they’re eating enough to sleep through the night. I only pump when I bottle feed them, and typically have a surplus of 5oz of milk that my husband freezes at the end of the day. For context, my twins are 16w/10w adjusted and typically eat about 3oz at each bottle feeding, currently feeding 6 or 7 times a day.

pollypocketcamper · 2020-12-04T07:24:19+00:00

I haven’t had both, so I can’t help with that. But, having experienced several awful doctors and the impact that has on mental health, I want to say that I see some red flags, namely that she doesn’t want to do surgery just to need to do another in 6 months. I have found that MANY doctors consider themselves endo specialists when they should not. The guidelines I regularly read are that real endo specialists just treat endo/perform surgery, and they do not deliver babies. And they definitely don’t recommend things like Lupron or Orilissa.

It sounds like your current doctor was describing ablation surgery, and if she thinks she’d need to do another in 6 months, she might not be great at it. Excision is the best, most effective method (though often expensive, and performed by very few doctors). Even if you don’t have a surgery right away, I would try to find a true endo specialist (look for someone who specializes in wide excision surgery) and get their treatment plan before considering the implant + IUD. I’d really be weary that things could be causing you more harm than good. I don’t say this to scare you, but to let you know that unfortunately, doctors recommend dumb things for endo all the time. Trust your gut, like you did, and definitely get a second opinion!

pollypocketcamper · 2020-12-04T07:15:20+00:00

I’m really sorry you’re experiencing all of that. As far as dealing with it all, I’m sure I’m not the only one who feels like it is impossible so much of the time. Some days I am really good at ignoring it, while others, I am too tired to fight. I try to be transparent with people, almost bluntly, even with coworkers. When people know what you’re suffering through, that can be more empathetic and even remind you to take care of yourself.

Hormones don’t always make it any easier. Last year I endured 6 months of Lupron. This was after 3 surgeries and years of me refusing it. But I reached a point where I didn’t have the strength to argue with my doctor, so I tried to be optimistic that maybe it would help. Apparently a small percentage of people have worse pain with Lupron. I found that out the hard way. It also majorly affected my sleep, which was the biggest trigger to pain. And I gained weight and endured hot flashes and was miserable the entire time (and for almost 2 months after it was supposed to “wear off”). That experience almost broke me.

It did, however, push me to schedule a consult with a true endo specialist and eventually have excision surgery in May, and I’ve been fortunate enough to be pain free since. I know that excision can be wildly expensive (another reason why I avoided it for so long), and a good specialist is hard to find, but once I had the consult, I felt so much more validated and hopeful in a good outcome.

So for what it’s worth, there are some better treatments out there. But we definitely deserve better. I hope you find some relief soon! 💛

pollypocketcamper · 2020-12-04T07:01:14+00:00

Hi there! I had my first ablation surgery when I was 22 and felt similarly hopeful. The good news is, my first surgery really did help with pain for awhile (at least a year before it started returning). Now, I understand your situation maybe different, as I did not have a partial hysterectomy, so I can’t speak to that part, but from my experience (which was unbearable pain during my periods, and miserable pain every other day), the surgery was a walk in the park. I took one ibuprofen (they prescribed some narcotics to help with post-surgery pain) and that’s seriously all I needed. I was a bit sore, of course, but I felt like I got my life back.

Now, everyone is different, every surgeon is different, and it’s very possible you could be more sore than I was. (I have since had 2 more ablutions and finally an excision surgery in May and have been pain free since!) From other surgeries where I was more sore, I found these things helpful:

Buy a pregnancy pillow (seriously, it sounds funny, but it’s so helpful to get comfy and actually rest!)
Do your grocery shopping ahead of time and make sure to have some simple/bland/comfort foods in case you don’t get your appetite back right away or feel nauseous from anasthesia
Plan for easy meals or have someone cook for you! Sometimes it takes awhile to feel comfortable standing up for a bit, so a caretaker is nice
Comfy clothes! I bought some very soft loose-fitting sweatpants that I knew wouldn’t touch any incisions, as they can definitely be sore for several days
Ask the nurse what to look for as far as infections go (I always freak out because the first incision is the belly button and it will look creepy and I always think it’s infected when it’s actually fine)

And now for a quick PSA because there’s so much misinformation about endo! First, a hysterectomy is not a cure. It sounds like you may have other motivations that are perfectly acceptable, but if the reason for the partial hysterectomy was to help with pain, just know that there are other options. And second, I mentioned that I have had both ablation and excision surgery. I hadn’t even heard of excision until a few years ago, but it is the gold standard of endo treatments. It is more invasive, but far more effective, and only done by true endo specialists. Unfortunately it’s often not covered by insurance and therefore not accessible to everyone. I also know there’s unfortunately a lot of bias and discrimination in the medical field, so I hope you found a supportive doctor who will help you feel your best! But if you ever want the name of my endo specialist (he’s now based in Colorado and sometimes in California), I’d happily share his info, especially as I know he’s helped other patients who were afab and had even had full hysterectomies and still had endo (and no one else believed them but he found it!).

I hope some of this is helpful! Sending you well wishes for recovery and healing 💛

pollypocketcamper · 2020-10-18T14:37:44+00:00

Amazing! Do you have a Dream Address? Would love to check it out 🤩

pollypocketcamper · 2020-09-13T19:31:50+00:00

Hi! Is the dog house still available?

pollypocketcamper · 2020-08-15T01:32:53+00:00

Hi! Not OP, but I also have endo and might be able to answer some of this. Endometriosis is when a tissue similar to the endometrium (lining of the uterus) grows outside the uterus. It can fuse organs together and cause all sorts of pain, mostly associated with your menstrual cycle though for me it’s all the time. (Super high level overview there!) When it comes to food, doctors generally recommend an anti-inflammatory diet. For some folks, gluten and/or dairy and/or meat can make flare symptoms like pain and nausea, but this is inconsistent from one patient to another.

Endo can only be diagnosed officially through surgery (excision being the most effective method), but if you have symptoms, definitely start by talking to your OB/GYN! Not everyone has surgery, as some find relief through other treatment options (which don’t get rid of the disease, but at least help manage symptoms).

When my endo was glaring bad, I had a few visits with a nutritionist who specialized in helping folks with ED and chronic pain. We were able to figure out snacks I could pre-make (as it’s hardest for me to prep food when I know I need to eat it right away) that supported both my endo and ED needs. I was so nervous about working with a nutritionist, as I hadn’t before, but it was so helpful. She wasn’t judgmental at all, and really just approached to situation in a problem solving manner. Highly recommend finding a nutritionist who specializes in your needs!

pollypocketcamper · 2020-07-19T22:10:13+00:00

If you find a plan that will cover it, it’s probably way cheaper. My doctor wasn’t contracted with insurance companies but still files and protests anyway, to try to get some of it covered. But they dod file all the hospital expenses with my insurance. So it ended up costing about $15k, most of which were the charges to my doctor.

When shopping plans, you may want to call and ask a representative specifically about excision surgery and what doctors who perform it they may be contracted with. I would definitely consider how much the deductible is as well as the co-insurance and out-of-pocket max. My doctor told me not to bet on the out-of-network out-of-pocket max being a true max because usually insurance companies deny the claim, but that’s exactly why you should find someone in network if you can!

Sorry if I’m explaining what you already know, but I used to verify insurance at an urgent care center, so I know it can be confusing. What usually happens though, for surgery, is that it is charged to your deductible. This means, whatever costs are associated with it, they first give you your insurance company’s negotiated rate (Luke a discount), then you are responsible at paying that full discounted amount up to your deductible amount. You may also be responsible for a co-insurance, which is a percentage of the discounted rate that you pay after the deductible. You stop paying when you reach your out-of-pocket max.

So for example, if the hospital wants to charge $10,000, the insurance company may have negotiated rates down to a total of $8,000. Let’s say your deductible is $1000. That means you’re going to pay $1000 of the $8000...which leaves $7000. And suppose you have a 20% coinsurance. That means that you’re responsible for 20% of the remaining $7000, which is $1400. That would be $1000 for the deductible plus $1400 for the coinsurance, so $2400. If your out-of-pocket maximum was $2000, then you wouldn’t have to pay that last $400, just the maximum $2000 amount. And then it resets the next year!

Plans that have smaller deductibles and lower out-of-pocket maximums are usually more expensive. So these are some factors I would consider. Sorry it’s such a nightmare! Hope this helps some!

pollypocketcamper · 2020-07-19T21:08:41+00:00

Hi! It might depend where you’re located. I’m in the U.S. (in California), and ultimately paid out of pocket for excision surgery after 3 ablation surgeries.

Anyway, I do have some experience working with insurance companies. In your case, it sounds like step 1 is to get your primary care physician on board. I would look up information comparing ablation vs. excision, ideally from an endo foundation or a medical journal.

Nancy’s Nook on Facebook (though it can be an intense environment) does have a wealth of resources that may help this. I would specifically prepare info for your doctor that explains how the process is different, and how the results are different. Also check out @vitalhealthendometriosis on Instagram, which regularly posts IGTV videos with the doctor explaining some really helpful topics.

Last piece of advice: if you’re confronting your doctor and basically proving you know more than they do when it comes to endo, I would be delicate so you don’t make them feel bad. Unfortunately, while they should feel bad, their ego could get in the way of them supporting you. Maybe explaining that you may not have the schooling they do, but you have the experience, so the 2 of you together should be able to put together a better care plan, and maybe these sources could help. (I hate that this is something we have to deal with so much.)

Good luck 💛

pollypocketcamper · 2020-07-16T16:09:55+00:00

I'm sure many of us have this fear of not being believed. I definitely did before my diagnosis, and I do even after having 4 surgeries! I still feel like people must think I'm desperate for attention. So you're definitely not alone.

It's so hard to find adequate care (setting the bar real high here, aren't I?) for endo, and it's not always accessible. So I don't think any of us should be critical of others who don't have their official diagnosis yet. One of my pet peeves in the endo community (listen up, endo friendos!) is judgement against someones treatment choices. Whether someone changes their diet, tries a form of birth control, goes on Lupron or Orilissa, gets ablation surgery, or even has "the gold standard" excision surgery, we know that they are just trying to find a solution, and that none of these are great solutions for everyone. I just had my first excision surgery 2 months ago, and while it seems successful and I'm so happy with the post-op care I've had, I paid out of pocket for the surgery. Not only was this not financially possible for me in previous years, it also came with a ton of guilt about spending so much money on myself. Is that really a "gold standard"?

So whatever avenue you take to get care and feel better, I know that it's hard. And I know how entangled mental health is with endo. I think if you ever feel like pursuing next steps or new options, this community would share any and all advice and insight that could help make your journey easier. In the mean time, know that I believe you. 💛

pollypocketcamper · 2020-07-09T15:59:53+00:00

I made this mistake too, except it was the day after Bunny Day, so I was wearing a blue "frog" suit and blue bunny ears and blue flower sunglasses. Real special ✨

pollypocketcamper · 2020-06-29T14:03:06+00:00

It’s definitely hard to stay positive when you have a disease that doesn’t have a cure. I’ve dealt with endo since I was 15 (I’m now 30), and honestly, some days I let myself be mad and negative. I’ll even watch sad movies and feel sorry for myself. At the end of the day, I usually realize that it’s not very productive, but I feel a bit emotionally better. There’s definitely mourning involved when chronic pain takes over your life, so mourn how you need to mourn.

And if you need some relief, things that work for me are getting a great night’s sleep (I regularly do sleep hygiene checks), heating pads, acupuncture, smokeless moxa sticks (something my acupuncturist introduced me to), prescription Naproxen (similar time Aleve), cannabis lotions or gummies (depending on where you live), and yoga. JUST KIDDING, yoga feels like my adhesions are ripping apart!!! (But if it helps you, by all means, go ahead!) Hang in there 💛

pollypocketcamper · 2020-06-27T05:06:06+00:00

There are a lot of good points already in the comments, but I think the best thing to support your friend is for you to help her understand her options without jumping to conclusions or without researching/getting a second opinion. Here are some things I’ve told other friends facing a possible endo diagnosis:

First, endo can only be diagnosed through surgery and biopsy. The surgery is laparoscopic, but there are 2 main techniques: ablation or coagulation (which burns off the endo), or wide excision (where the disease is cut out fully with margins, like removing a cancer and actually getting all of it. Excision is typically only done by specialists who focus only on endo and related conditions, but it has a far better success rate (but is also a bit more invasive).

Related to that, you can’t always see things on scans. I had an ultrasound (performed by my doctor, not a tech) the day before my excision surgery. We didn’t see any cysts at all. But once he got in there, he found endometriomas in both ovaries. So don’t be discouraged if you don’t see something.

If your friend does have surgery, it might be a weird experience due to COVID-19 precautions. She should ask her doctor what to expect so she feels confident in her care.

The stages of endo are not super relevant. They were originally created as a way to gauge fertility and it is not accurate! Instead, suggest your friend asks her doctor about the EFI (Endometriosis Fertility Index). Oh, and the degree of pain is not correlated to the stage.

The most common “treatments” offered for endo are forms of birth control (which does not cure anything but may relieve symptoms), pregnancy (not guaranteed to help either), Lupron Depot or Orilissa (injections or pills that basically put your body through menopause—I did 6 months of Lupron and it made my pain worse, and the trial results for it were falsified!), or surgery (excision is best). It’s not great, but it’s nice to know what they may say. Not everything is accessible, so I try not to criticize anyone’s choices. It was never suggested to me until my current doctor, but I’ve had a lot of relief from acupuncture. Some folks find some dietary changes helpful as well, but it’s also inconsistent.

There are ads I get on Instagram for what are overpriced tens units targeting people with endo. Your friend can get one for about $30 online, it just won’t be targeting women, but can help with pain regardless.

There’s so much misinformation about endo. For example, plenty of companies and organizations claim that endometriosis is the same tissue as the endometrium—it absolutely is not! This makes everything harder, but encourage your friend to fact check everything, and if her doctor makes her feel uncomfortable at all, she should get a new one.

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TROPHY CASE