West medicine can do a lot of incredible things. This is not a post to deride western medicine as a whole. Vaccines especially are proof of western medicines ability to save and improve lives on a vast scale. Yes, western medicine can do incredible things, but there are so many areas in which it is ineffective, if not detrimental. Not surprisingly, a lot of those areas fall into the domain of women’s health, especially of the reproductive variety.
I am not going to begin this post with a discussion on how western medicine has been focused on men and the male body and how that probably has a lot to do with its abject failure when it comes to so many aspects of women’s health. That could be a post — or book! — in and of itself (both of which have been written many times by writers more capable than myself. Instead I’m going to focus on how western medicine has failed me, personally, yet again.
I’m going to see my doctor about my worsening uterine prolapse next Monday. I don’t have high hopes that she’ll be able to offer me any kind of help, mostly I’m just trying to get a different pessary that actually helps me for the days when my cervix is actually protruding out of my vagina (yes, that is a regular occurrence these days), and for when I’m working out. Pessaries are one of four basic forms options that women are offered when they seek help from western medicine for prolapse. The other three options are physical therapy, surgery (which most western doctors admit has a limited success rate initially, and an abysmal success rate long term) and nothing. Most women are told to just grin and bear it when they come in with symptoms of uterine organ prolapse.
I have been to physical therapy, but it wasn’t very helpful and I was given no advice on modifying exercise or basic daily functions.
I have been given a pessary, but it not comfortable, makes it impossible for me to have a bowel movement (this is not supposed to be a side effect) and now that my prolapse has worsened considerably, it is totally ineffective (it pushes into a position parallel with my cervix instead of remaining perpendicular with my cervix to keep in away from my vaginal opening).
There are other pessaries available (different shapes) and hopefully one will work for me. But it is not really a long term solution. Not surprisingly, vaginas don’t love to have a silicone instrument left in them for days at a time. The side effects of long term pessary use include obstructed bowl movements, lesions, infection and general discomfort. Yay western medicine!
Knowing that my doctor will have little help to give me on Monday, I’ve been doing a lot of research into alternative ways to manage prolapse symptoms. Evidently something as simple as adjusting my posture can alleviate symptoms. There are also a lot of exercises to avoid (all the ones I was previously doing) and other exercises to do instead. I’m really frustrated that no one (not my doctor or physical therapist) mentioned altering common exercises, because my symptoms DEFINITELY got worse once I started doing push ups and crunches again (both big no-no’s). If this is common knowledge (in the field), why would they not share it with me when I was constantly talking about wanting to start exercising again?!
Some crazy high percentage of women have some prolapse symptoms, at least later in life, even if they’ve never had kids. It’s also worsens over time for pretty much anyone who has it. This is a condition that so many women deal with, and yet it’s never talked about in our culture, and western medicine has very few effective ways of managing it. It’s so frustrating to see women’s health being given the shaft yet again. I just hope I can find some relief, because I’m only 37 and already my prolapse is already quite advanced. If other interventions don’t work my doctors will push for surgery, even when they know it’s won’t be effective. I’ve already had one surgery on my lady bits that did nothing but worsen the situation, and I have no intention of doing that again.
One of the shittiest things about the American healthcare system is that it’s a business that is meant to make insurance companies money under the guise of providing healthcare. Understanding this goal is important for navigating the system, especially with HMOs, as it means that any time a patient falls outside the norm it will require them to become experts in their condition in order to advocate for effective treatment.
What is your goal with this upcoming visit? It doesn’t sound like you have much faith that your physician will be able to help you (frankly, I don’t blame you for that mentality), but going in expecting them to not help you shouldn’t be the goal. If anything, I would push for an outside referral, pushing the fact they are staring at a lawsuit as a reason. One secret is that though HMOs resist giving outside referrals, those who push can get them, especially if the patient comes armed with the information on who to refer to.
Regardless, I’m so sorry you’re dealing with such a severe prolapse. But given that you know this is a common condition and it is affecting your quality of life, I am encouraging you to guide your physician in getting you the help you need. Even if doing so means divorcing them.
My goal is to get a pessary that is effective at least in the short term, so that exercising and other specific activities aren’t so uncomfortable. I honestly don’t know what else to ask for. I don’t know if requesting a referral even makes sense because I don’t believe another doctor would have anything more productive to offer me – my research online confirms what my doctor has told me, that there aren’t any effective options.
I think that’s a good goal! In addition to this, I would ask your physician “if you or a loved one had my situation, what would be your next steps?”
UCSF has a pelvic floor rehabilitation program (https://www.ucsfhealth.org/programs/pelvic_floor_rehabilitation_program/index.html). I can not vouch for them outside the fact that it’s UCSF (a damn good medical school). But given that surgery has worsen your condition, it may be worthwhile investigating them. I would simply call them, tell them the insurance you have and see what It would take to be seen. Kaiser will likely tell you they don’t refer outside their network, but I bet this clinic knows all about navigating them and can help you get an appointment to be assessed that your insurance will cover.
Again, I’m so sorry. You should not be dealing with this alone, but it is the state of the US healthcare system which needs to be overhauled entirely.
As long as you’re looking into alternative med, you might look into the ideas on https://alignmentmonkey.nurturance.net/ . I haven’t really deeply evaluated her blog, just follow it in feedly, but I’ve found ‘postural’ changes* transformed my chronic hip/back pain, so when you mentioned posture I made the connection to her blog.
(through something called the alexander technique)
Kaiser will refer to Stanford and UCSF when pushed re second opinions. No idea if you are Kaiser or other.
It sounds like you have been researching throughly. I ABSOLUTELY have no idea what removal of organ would do physically or hormonally. Look carefully into this because I bet that is part of their current solutions but may not be part of your plan.
No idea if you know gyn people outside of being a patient. MINE TO COMMAND is, I believe, a Berkeley area ob/gyn and blogger about parenthod. I do not know her myself. MAYBE, if you wrote to her privately you could arrange apt with her to get her advice on where and who to see. OBVIOUSLY, you would pay for such apt and your insurance would probably not cover it, but she would/might know who top experts in field are. ~~~Or maybe you have already checked out field and already know.
This sounds absolutely awful and I am very sorry.
I do know a really good physical therapist for pelvic floor inside K, she is across bay from you. You have my email. Write me there if you want her name.
EVERYONE: keep an eye on your voter registration status. Check it with time to re-resister if need be, print copy with date of verification that you are on voter lists. In CA this can be done on line. Be sure to vote each and every election!
Gosh I am so sorry, and I have no real advice, but like the idea of trying to get a second/third/fourth opinion. There HAS to be someone doing/trying something outside the norm—even if its experimental, and if so, it is pretty likely they may be in CA. This sucks, I am really really sorry you are going through it.
Sounds so difficult! I can’t believe the physical therapist didn’t give you useful advice or information. I had some pelvic pain during pregnancy and went to a pelvic floor specialist and she was very helpful in guiding me in how to avoid pain during daily activities. But my situation wasn’t so severe. Could you afford 8 or 10 sessions out of pocket with a qualified PT?
This really sucks. I can assure that the situation, or health care professionals’ attitude is more or less the same also in a publicly funded health care system. I was told about 10 months after having my first child that “oh, EVERYONE has some prolapse after giving birth”. Well that was the first time during all pre- and postnatal care I received that anyone told me that. This is also not discussed in any of the guides and resources related to pregnancy and childbirth. I do think this reflects the medical system’s attitude towards “women’s issues”.
I have some prolapse too (no pain during sex though) and for me, keeping a good posture (ie. keeping deep abs tight) and doing pelvic floor exercises helps some. I really hope you find proper help. A good physiotherapist (alternative or not) might be the best bet, maybe some exercises would work although your current ones don’t.
I am sorry you are dealing with this. I don’t have personal experience with prolapse, but know women who do, and I know what a hindrance to your normal life it can be.
Given that you’ve exhausted a number of your options already, and are considering alternative methods, I would recommend you look into a pelvic floor/core training method called Hypopressives (Hipopresivos). It was created in Europe by a Belgian physical therapist, and popularized widely here in Spain (where the doctor now practices). It has really become incredibly popular, specifically in the post-partum set (where I first discovered it 4 years ago), but also for overall pelvic floor health and specifically for treating pelvic organ prolapse. You can find a multitude of videos on youtube discussing and demonstrating the technique. The vast majority are in Spanish but that’s no issue for you (and it’ll be listening practice so kill 2 birds!).
I don’t think Hypopressive training has expanded much beyond the EU really, so you may have never heard of it. In searching a while back for another friend, I did find a woman in Toronto with a compelling personal story and explanation in English.
https://coresetfitness.com/hypopressive-fitness/
https://coresetfitness.com/personal-prolapse-story-2/
If you think it’s something you may want to do more seriously I can recommend the Ictiva website/app. It is really an at-home exercise platform with hundreds (thousands?) of videos, but they have a specific hipopresivos “sala” which includes somewhere around 28 videos, starting from very beginner level and working your way up. You can do a free trial of the app and it includes the first 2 videos (if I remember correctly), and after that you can purchase a 6 or 12 month access pass (50€ for the year-long pass right now) to get to the others. I only use the app for the hipopresivos, but you may find the option of at-home exercise videos in Spanish interesting enough on its own!
Anyway, check it out. Read what you can on the method and see if you think it might be a fit. Like I said, I stumbled upon it in a post-partum exercise class I did after my 2nd kid 4 years ago. It made me feel so good (and helped shrink my stomach) that I went searching for something more easily accesible now after baby #3, which is when I found the app. I do around 20 minutes about 5 times a week and still do my general bootcamp/HIIT workouts as well, but I don’t have prolapse (that I know of!), so you may be better off taking a month off and giving the hipos a go. I also had the background of in-person classes from 4 years ago and knowing the basic postural guidelines, etc. If you could find anyone offering it locally a few private sessions would be worth your time, I’d say.
Best of luck. I really hope that you can find something that will help you with this!
I’m so sorry that you continue to have issues with this. Samantha Bee did a great segment on women’s health and how until now, so many issues and problems haven’t been researched so doctors essentially throw birth control at everything. Have you researched as to whether any one is doing research/studies into prolapse? Maybe there is something new that most doctors don’t know about yet?