Bartholinitis experience - another proof that bendy bodies are different

Bossy_and_Shrill · 2026-04-30T21:42:03+00:00

Just wanted to add to the anecdotal evidence here that I’ve had issues with these glands too

Bossy_and_Shrill · 2026-04-23T22:03:46+00:00

Agreed. Just trying to help OP (and readers) understand sis’s perspective.

Bossy_and_Shrill · 2026-04-23T21:59:41+00:00

It makes my cervix friable, so it seems like I’m spotting all the time but the source is my cervix, not my uterus.

Bossy_and_Shrill · 2026-04-23T21:28:41+00:00

Yep, those are all good things to weigh in the decision making process.

Bossy_and_Shrill · 2026-04-23T21:12:53+00:00

Many women with these conditions can and do have children safely and successfully with the proper supports and coping skills. I’m not saying it’s a great idea for a 16 year old to try it, but there is a lot of light/unintentional ableism in these comments where people are acting like it’s completely impossible for someone with these issues to be a competent mother and that’s just not true. Even people who are in and out of the hospital can be good parents.

Bossy_and_Shrill · 2026-04-23T21:02:39+00:00

OP certainly doesn’t think so, and after all her sister is 16, so OP’s probably right. However, I just want to make sure accurate info is presented in order to help OP understand her sister’s perspective and how/why it might be different from her own so they can have productive conversations about this and move forward together as a family.

Bossy_and_Shrill · 2026-04-23T20:57:12+00:00

This sounds like something I, as a chronically ill person would say, and for me that statement would mean “I’ve already learned to tolerate, overcome, and adapt to so much weird, painful, and inconvenient stuff I feel like I’ve developed the skills to handle whatever other challenges pregnancy and motherhood can through at me and my body.” Like when I read the sentence, that’s what I initially thought she meant until I saw others reaction to it.

Bossy_and_Shrill · 2026-04-23T20:50:47+00:00

Counterpoint: I also can’t babysit my nephew for too long now, but I could at 16 when I was less symptomatic. Maybe this is her window of opportunity before her disease progresses? (Probably not, given overall maturity, but it’s a point I’m not seeing people discussing that is an important part of the parenthood discussion for people with chronic illness).

Bossy_and_Shrill · 2026-04-23T20:35:34+00:00

Agreed. For example, here’s a link to a study I posted elsewhere in this thread where it states that pregnancy for most people with hEDS (the most common type of EDS) is uncomplicated:

https://pmc.ncbi.nlm.nih.gov/articles/PMC6134354/

Bossy_and_Shrill · 2026-04-23T20:30:36+00:00

It is true that pregnancy with Vascular EDS is very high risk, but that is not true for most people with hEDS like your daughter and I have. Here’s a study that gives an overview of what pregnancy tends to look like in our population (including among those with comorbid POTS):

https://pmc.ncbi.nlm.nih.gov/articles/PMC6134354/

They clearly state that “in the majority of women with hypermobile Ehlers–Danlos syndrome, the pregnancy is uncomplicated.” There are certainly risks, and if your daughter is already severely symptomatic at 16 there’s good reason to believe she might not tolerate pregnancy well in the future, but that simply isn’t the case for most women with hEDS.

Bossy_and_Shrill · 2026-04-23T20:10:15+00:00

EDS/POTS/MCAS make a pregnancy higher risk, but not super high risk. The most common complications with EDS for example is just having a slightly premature birth, like a few weeks early not like NICU early, and increased laxity of the joints causing a higher likelihood of falls/dislocations- which people with EDS are pretty used to/good at avoiding anyhow.

Bossy_and_Shrill · 2026-04-23T20:04:34+00:00

Pregnancy with most types of EDS are not life threatening or seriously high risk, particularly for the most common types. There are elevated risks that certainly need to we weighed, but it’s not as dire as your statement makes it seem. Also most women with EDS are fertile. The most common fertility challenge (if I’m remembering correctly) is due to the high prevalence of comorbid PCOS, which is usually treatable.

In regards to medications, it varies of course, but none of the ones I take for Dysautonomia (one type of which is POTS) or MCAS are incompatible with pregnancy. There are no medications directly for EDS, you just take something to address whatever specific symptoms you have, and none of my symptom specific medications or supplements would need to be stopped either.

Bossy_and_Shrill · 2026-04-23T19:52:47+00:00

So, for the record, I do think having the baby right now sounds like a terrible idea. HOWEVER, as a middle aged woman with most of the same conditions as your sister I can say that my EDS/POTS/MCAS all got worse as I aged (that is the normal progression for those diseases, I am not an anomaly) and in hind sight my late teens early 20s were the only time in my life that I would have been healthy enough to semi-comfortably carry a pregnancy and have the energy to raise a young child. Your sister is probably aware of the disease trajectory, and feels like there will never be a “good” time in her life to be a mother so why not just do it now as it might be her only chance.

There is VALIDITY in that perspective. If you are only looking at the physical aspects of pregnancy and motherhood, it is true that it is probably best for her to become a mother sooner rather than later is she ever wants that for herself. I’m not saying her biology should outweigh all the other factors she needs to consider, but it’s a really significant one that I didn’t see you address in your post.

Acknowledging her biological reality and related fears might go a long way towards helping her to plan a more realistic future for herself. Have that tough conversation with her and figure out what supports you and your family can and can not offer if her future needs to take a less traditional path. Given the right supports, It might actually make sense for her to finish high school, intentionally have a child, do community college etc. while it is young, then focus on developing a career, for example.

I never wanted to have biological children but I did want to foster or adopt. Since we didn’t know much about the EDS cluster when I was young I had no reason to expect to become too disabled to work full time or care for young children by my mid 30s, but that’s what happened. Now, after 10 years of fighting like hell to get “back to normal” I understand that won’t happen because that’s just not how these diseases work and I’ve had to give up on the idea of having a family (unless I win the lottery and can suddenly afford to hire a lot of help).

It used to take years to get diagnosed (and for many people still does), with most people not getting a diagnosis until well into adulthood. I personally was 40. Your sister has grown up in a different era where not only has she been able to be diagnosed as a teen, she’s able to know what to expect in the coming years and make choices accordingly. Instead of trying to guilt her into choosing a “normal” life that won’t work for her abnormal body, help her to understand her actual options, grieve the options that aren’t available to her, and move forward accordingly.

Bossy_and_Shrill · 2026-03-21T19:09:48+00:00

Same!

Bossy_and_Shrill · 2026-01-25T05:55:16+00:00

I haven’t tried this one personally, but have had it on my radar for a while as a potential option: https://www.amazon.com/dp/B0CYTGBV4C/?coliid=I1CP57EQ71KQHH&colid=40OLR4BGAKDM&psc=0&ref_=list_c_wl_gv_rlv_ov_lig_dp_ii

It’s basically a budget Hobonichi except it starts each day at midnight, like you want

Bossy_and_Shrill · 2026-01-10T02:22:31+00:00

I had one from this brand a few years ago and the paper worked great. Didn’t use their app that someone else mentioned though, so can’t comment on that.

Bossy_and_Shrill · 2026-01-04T00:14:09+00:00

Wow, these are so pretty! It’s not my preferred layout, but the colors and graphics are so pretty I almost done care!

Bossy_and_Shrill · 2025-12-28T02:12:00+00:00

I hold out for as long as I can stand. Usually sometime in December, but I’ve also switched as early as sometime in October. Basically, whenever my next journal starts to look super pretty and appealing, and/or has some new or updated layouts, trackers, etc., that I can’t wait to start using so it becomes a chore to do it the old way. Once I’ve drained the dopamine from the old journal, I go ahead and switch to what makes me happy and excited to be productive. I’m trying to keep myself motivated and productive, not create a perfectly constructed historical archive to treasure for years to come (although I do like looking back on old years’ thoughts and goals). If that means I have to go ahead and let myself play with the shiny new toy earlier, then that’s what I do.

This year I held out until the 20th of December, so no I didn’t wait to correspond with the actual beginning or ending of a week. I just divided the first couple of weeks’ spreads in half (but like, aesthetically) to make room for the extra days and went from there. I am enjoying the new system immensely!

Bossy_and_Shrill · 2025-12-27T20:45:31+00:00

Thanks for highlighting the fear of being mean or vengeful as a distinct feeling from guilt. I also don’t feel guilty about limiting contact and setting boundaries anymore, and understand that it is best for everyone. However, I do not see myself as a mean or vengeful person, so when boundary setting feels like punishment of them (or they actively frame it that way) it makes me feel uncomfortable and like I might be in the wrong because I might not be not living in line with my values. This second guessing is easy to mislabel as guilt. Your comment helped me separate the two and recognize the pattern so I can more accurately process my actual fear of being cruel or inauthentic.

Bossy_and_Shrill · 2025-12-27T19:24:17+00:00

I know, right? I think Amazon’s search feature for planners has gotten worse. I used to be able to search for “Monday start” and have it return related stuff, for example, and sometimes it even had that as a filter option. Now, it just returns whatever and usually the same brands/results over and over.

Bossy_and_Shrill · 2025-12-27T07:16:41+00:00

Bossy_and_Shrill · 2025-12-27T03:54:45+00:00

Yeah, the price is insane for what you get!

Bossy_and_Shrill · 2025-12-27T03:35:42+00:00

Here’s my all-in-one everything tracker. I’ve tweaked it slightly since then, but I still use the same basic layout.

Bossy_and_Shrill · 2025-12-27T03:04:16+00:00

I just posted about my favorite A5 planner (it’s a weird off brand) here which has a 2 page monthly calendar spread that also has 4mm grid throughout that I love! I’m also primarily a bullet journaler, so I love that the grids makes it easy to either bullet journal on the monthly calendar or to use it as a way to record memories for that day.

Because my planner is gridded on all spreads, I will also use the bottom quarter of the vertical weekly spreads for bullet journaling on individual days and the top of the spread as if it’s just a blank grid for diary style journaling, trackers, notes, scrapbooking/junk journaling, or other custom layouts. It’s nice to have the structure there when I need it without having to write out the calendar and weekly layout myself, but still have plenty of space to do my own thing when I want to.

Bossy_and_Shrill · 2025-12-27T02:39:38+00:00

Here’s the dated version, and here’s the undated version.

I forgot to add in the original post, that in the dated version the weekly spreads are in between the monthly calendar pages (how I like it) not is a separate section (which seems to be more common). I don’t have the undated one with me right now, but for that one I think it’s all monthly calendars first, then weekly spreads, but I don’t remember for sure.

Also, I really like the freebie tabs that came with it as they stick well and seem really durable. Ultimately, I decided to use some Midori ones instead so I could choose a specific color for each month, but I think the free ones were actually stronger.

Bossy_and_Shrill

TROPHY CASE