A question about expectations

Welcome Rosewood,
You will find agreat deal of support here from everyone. As you will already know there are quite a few of us with similar probs! Christine will be able to answer your questions I am sure! Again, welcome!
Michelle.

Dear Marie,

Your post is very timely, for I’ve been wanting to draw a conclusion that I didn’t get to in the letter I just wrote to the PT association, so thank you for giving me the opportunity to express it here.

First of all, it’s impossible to know what was done during the obstetric birth. That’s a lot of blood, but doesn’t necessarily mean a giant tear. The vagina is very vascular and maybe a little vein was torn. It’s water under the bridge now and if you have no other symptoms I’d consider you very lucky. I think your late complication, and yes, permanent damage, is prolapse of the anterior segment.

To answer your second question, the cystocele probably won’t recede a great deal. This is a very common condition that hundreds of women on this board are living well with. Our hope is that if you continue with the postural work (it becomes easier and easier), never strain on the toilet, and make other positive lifestyle changes like good food, comfy clothes and shoes, sea sponge, etc. it will never progress and you will learn that you are in no way disabled.

As heroic as our culture is today, it’s time for all of us to understand and accept that some things can’t be fixed. Pelvic organ prolapse is a prime example of something that simply resists repair. That’s not to say, however, that these conditions can’t dramatically improve, but our “fix it” collective mentality must wrap around the reality that these are chronic disorders.

Once we really get that, then I believe we as a society will be much more motivated to encourage prevention. But it’s going to have to be women who build that conceptual framework. Our doctors have been completely uninterested in discovering why half the female population is prolapsing, and even less interested in admitting that the “cure” is worse than the disease. One glance at www.hystersisters.com will confirm that. Their membership is almost 100,000 strong, and although I don’t believe it was their intent to highlight the total failure of reconstructive surgery, that’s certainly by far the strongest theme of those message boards. Gynecologic surgeons have had well over a century (and an almost infinite number of willing subjects) to crack the code on this and the reality is they have failed to do so.

Not that surgery doesn’t have a place in the prolapse drama. Some women’s symptoms are so severe and unamenable to change that post-surgery restrictions and complications might be preferable for them.

The good news we are discovering here is that prolapse, uncomplicated by other medical problems, is very easy to live well with. I hope that you will come to agree.

My personal opinion is that the vaginal exerciser and weights have very little effect, yet if you believe they are helping, that in itself has value. Give the sea sponge a try (it seems to work best with primary cystocele) and see how your body responds to having the organs held in place while you condition your spine and pelvis.

Wishing you well,

Christine

p.s. I'm not confident that I can tell a world of prolapsed women to lift all they want (within reason) as long as they use proper body mechanics. I can only offer my own experience that proper lifting seems helpful rather than harmful to my own condition.

Hello Marie! I'm glad you found us. this board is a huge source of support and strength for me. I am also a mother of three and believe that my first delivery experience at the hands of an ob helped my prolapse develop. I noticed my cysocele last spring or was it summer? and it has not really changed since. However, since changing my posture and diet, I am much more comfortable and confidently active. The wonderful women here are the reason I've been able to wrap my mind around what has happened to my body and to (begin) to accept this as my 'new normal'. It gets easier to live with, it really does.

Christine - about trying the sponges to see how your body responds to having the organs held in place... have you seen anyone's prolapse get better because of the sponge or pessary? That is exactly what happened to a friend of mine but she was immediately post partum. She had her third baby and within a week had uterine prolapse. Her DR told her about surgery and hysterectomy yada yada and had her wear a pessary till she was further from delivery. Within 3 weeks her prolapse was gone. Is that because she was immediately post partum?

I have wondered if that would help me or make things worse for me. I am not sure what my stages are, I was only told moderate. And I have bladder, rectal and uterine prolapse. Will use of the sponge worsen the rectocele? I am not sure which is primary but I am going to go with the bladder since that is why I was referred to the uro gyno who noticed everything.

I will say (although I am hesitant to jinx myself) that I feel so much better it's unbelievable. My back pain is almost gone. I can pick up my children without feeling like I am doing irreparable damage. So the posture definately works! My period is about to start so we'll see how long this feeling good lasts, if any of the dragging symptoms come back. I am prepared if so.

Thanks again,
Kathy

I don't have the answers yet, though. One of our newer members (can't recall who) wore a pessary non-stop for an entire year without any problems - and when it came out everything immediately fell to its previous position.

My sense of things is that if you can reduce your prolapse with the sponge while keeping the body in it's natural form, it should help all around with any reversal that's going to happen - especially post partum.

The sponge flattens out with the vagina when standing, so it shouldn't be a risk factor for further prolapsing. We need a silicone pessary that would do the same thing so women with more severe prolapses, primary UP or rectocele could wear them. I'm working on that!

Kathy, I'm SO GLAD to hear you are feeling the difference. Hooooray!!!!

Christine

Kathy,
I also had my uterus prolapse a week after delivery and was told by my midwife to "push it back in", I did and it has stayed up, albeit a bit lower than it should be but really OK. I also had my bladder and rectum prolapse too, (although I didn't realise this until recently), they seem to be in the same place so far. I haven't used any kind of pessery, I am wondering if a uterus which prolapses immediately post partum goes back more easily than other organs. I have heard several anecdotal stories of the uterus going back and staying but not any of the bladder and rectum. Hope this info' helps a little! Take care.
Michelle.

Hi, Christine...

You had mentioned the development of a silicone pessary and I had just been thinking the other day that something akin to a Diva Cup, slightly stiffer and without the 'cup' aspect of it would be an excellent device and another alternative to the sea sponges. I had used the Diva Cup during menstruation before getting pregnant and really liked using it, it was very comfortable. Are you in the process of developing something like this?

Peace.
Michele (mermaidsd)

you write the hard part is the sense of loss of yourself as you were before..I feel the same way! I also want my pelvic organs back where they were! And I'll be honest, sometimes I wish that there WAS a surgical way to fix it all and make it better. But life is not like that, is it? Go ahead, tear up as you write, I have a shoulder that isn't afraid to get soggy.

to answer your questions, confidently active for me, means I am not afraid that running around with my kids is going to cause my bladder to drop out onto the sidewalk. Yes there are days when I am dragging and I rest then. I am learning that maybe I should be resting every now and then anyway. I find that some forced rest is good for my emotional health too.
My kids are 7 (dd), 5 (ds) and 2.5 (ds)
I know you have a small one (10 mo did you say?). how old are your 'big' ones?

Actually, my idea is a soft, squishy, oval silicone orb covered with rounded nubs – kind of like a sea urchin without the spikes. This would flatten like the sponge but would be more substantial, and the nubs would serve to hold it in place without compressing large areas of tissue like conventional pessaries. I think different sizes would cover all prolapse types. Bringing something like this to market is a nightmare of red tape with the FDA and I do not yet know if it will even be possible.

I am sure you have thought of this already Christine but have you approached the companies which already make pesseries to see whether they could make it for you? They have obviously already done the whole FDA thing. Just wondering?

I'm kind of holding a grudge toward certain companies and institutions that have kept a total monopoly, yet given women little innovation for decades. In my opinion, many of the styles available are simply anatomically impossible. I want to see if I can make it work before resorting to that, but am not being secretive about it because I think its a good idea and if I can't make it work I hope someone can.

Nancy
Christine, What is a diva cup! Is that the cup used for periods! Could that possibly work instead of the sponges! I used one on Sunday for the first time in weeks and had to rip it out! I must be very dry right now, but I did bleed a little after removing. If the cup is a flexible rubber, could one remove the cup part and insert for a ring style? Are these really dumb questions? Other than some discomfort on occasion, I am doing fairly well even with the part time job, which is standing for 4 hours at a time. I do get to stoop and bend over frequently, which helps put things back in place. I've seen the cups in the femine aisle! And if you need a guinea pig for testing your very own pessary, put me down. You are probably smarter than most gynos when it comes to female anatomy. Nancy

Hi Nancy
I was just thinking of you today, wondering where & how you've been. Good to hear that you are doing well on your feet all day. I remember you were worried about that.
and Christine - I'm with Nancy. I'll be your guinea pig anyday.

The Diva cup is a used for menstruation - I haven't seen one yet - I think some of our younger women would be better able to comment. Glad you are well!

I'm also at home with my kids. I'm so envious that you home educate. I wanted to so badly but couldn't for a number of reasons. number one being that dd wanted more than anything to go to school!

I'm so glad to hear that things are beginning to get better for you. that is truly wonderful news.
I have not tried sea sponges, I didn't think they'd help much with the cystocele/rectocele, I thought they were helpful mostly with uterine prolapse. but now I'm thinking I might as well try them. and maybe the v2 supporter everyone is talking about is a good thing to have on hand if things get bad again.
I haven't used vaginal exercisers either, if women start reporting that they are helpful than maybe, but so far it doesn't look that way

definitely let us know if the chinese herbs are helpful. I'm very curious to know.
I find the posture to be most helpful, the exercises too. unfortunately I don't have much time for them. I've taken to playing with my 2 yo on all fours alot. he thinks its funny and I'm plenty comfortable and strengthening my shoulders too. and I walk on the treadmill 5-6 times a week. I'm convinced I can feel everything lift when I pay attention to my walking.

good luck to your dd, she's lucky to have a mom who supports her creativity and interests.
oh, and I'm in NY.

Hi Rosewood,
Just my contribution to this..................I have encountered a woman on another forum I am part of who SWEARS she cured her uterine prolapse twice after two separate children using the Kegelmaster. She said it took 6-8 months each time. So, who is to say either way? Perhaps it would have resolved anyway or perhaps it did help. I guess that is the thing which is so difficult with all of this is that we have no standard patterns or predictions for healing, maintenance or deterioration especially post partum. I also think if you feel it helps then definitely continue to use it along with everything else of course! I personally, for what it's worth don't feel that it could do any harm :)
Michelle.

Hi All,

When I first joined this forum I was touting the benefits of the Kegelmaster too. I really think part of me just wanted to have some faith in something so that I wouldn't have to have the surgery my doctor recommended. I hate to tell ya, I really think it was a hoak or at the very least a gimmick. Within a few months, my incontinence got worse and so did my prolapse (primary cystocele.) That's when I stopped using it and went on line and found this forum. Thank God!!! By the way, I no longer have incontinence. Now to be totally honest, I am not sure if my prolapse got worse primarily because of my using the Kegelmaster, the pilates classes or the weight machines I was using at the time. I do think ALL of those things contributed to my prolapse getting worse. However, I do know from everything I've read, that kegels do little to nothing for prolapse of any kind. Plus for me, it was two steps forward one step back. So now I look at the KM as just another device these on-line Multi-Level Marketing companies sell and make lots of money off of. Despite their money-back guarantees -- I doubt everyone goes to the bother of sending them back for a refund. Mine is still relegated to the drawer I hid it in because it made me feel so weird and awkward using it. Who needs anything else making us feel more awkward? I am sorry if I burst anyone's bubble today. Take good care, April

No bubbles burst here April!! :) I think this whole issue highlights the serious need as Christine so often points out, for some accurate and rigorous research studies into the MANY issues surrounding prolapse of all kinds affecting all ages. So much of what we hear as women is anecdotal, at the best unproven, and at the worst down right unsafe and ill advised. For example, my Gyn telling me to go off and run happily into the sunset with my stage 2 bladder and rectum blowing in the breeze. (Well she didn't LITERALLY say that of course). Is it safe for me to run without things getting worse? Who can tell me for sure? It is up to us all to continue to contribute to the process of demythologising, (not even a word I think), many of these issues and we are doing precisely that by using this forum in the way that we all do!!!
hugs to all you lovely ladies out there!
Michelle.