Just found out I have a Cystocele!

HI mandy, and welcome to WW! so glad you found the site. Huge thing to discover i know, and like most women here I imagine you are feeling a huge range of emotions right now. But know that things will get much better!

So, first of all, try to relax. Prolapses are not life threatening and very shifteable. You have surgery scheduled very soon, but you may want to take a breather and postpone it so that you can do a lot of research, try other approaches, and wait till you can make an informed decision. First thing i would do is order Christine's book Saving the Whole Woman, which gives you a ton of information on our anatomy, prolapses, risks of surgery, and ways to stabilise and improve prolapses. You will find a ton of informaiton here on the site, but it's much easier to read it in the book and also there are detailed pictures which are very helpful.
Christine also has a DVD with wonderful excercises.
Know that surgery is not without its risks, and you want to make a very informed decision. If you do seriously consider it, find out all you can--are they planning to use mesh? If so, find out more about that. Meshes can cause massive problems and are the basis for some huge lawsuits at the moment.

First question--how old is your baby? If the birth is recent, know that things change radically in the first couple years, and then beyond that...
Know that having a c-section does not protect one from prolapse, and actually cuts through the tissues and muscles that support our natural system. So whilst "managed" births can definately contribute, it's not the only cause.

First thing is to start with the WW posture immediately. Takes some getting used to, so take it easy, rest lots, and just keep playing with it / reminding yourself. Soon it becomes second nature, and allows your bladder to start to naturally reposition itself where it belongs.
Also look at things that might be affecting you--what is your diet like? anti inflammatory diet can do a lot (use search box on right to find out more--anxiously awaiting new DVD on this, but until then lots of threads discussing it). Avoid constipation at ALLLLL costs. Wear loose comfortable clothes that don't press on your belly. Till you are stronger in a natural posture, you may want to avoid heavy lifting.

Re urinary retention, peeing on all fours in the shower allows your bladder to empty fully so do that at least once a day. The rest of the time, lots of women find peeing, then either get up, move around, and pee again useful or pee, then stick your bottom up in the air to allow your bladder to fall forward and pee some more.

You may have a uterine prolapse as well, as it's all connected--but the posture allows everything to reposition. Thing to know is that if you have surgery, once your bladder is pushed back in you may find your uterus drops more as the bladder is no longer supporting it.

But know things can improve dramatically. I had a very large cystocele / rectocele + mild uterine prolapse. Now they are all mild. so things can change...

Read through posts and ask away...

Kiki

Hello Mandy!

I'm so sorry about what your going through, its so shocking especially at 32! I recently found my prolapse at 35 about 7 months ago. The first doctor I saw immediatley suggested surgery. I am not against anyone having surgery if you feel it is the right choice for you, but I agree with Kiki that you should postpone your date until you know more. If your babies are young be aware that your recovery is a full 6 weeks with no lifting over 5lbs or you chance undoing what was done. Also, if you would like more children, having the surgery first may set you up for another after the birth. So if your not done with your family, you should wait until you are. If you do have children consider if you feel you could safley recover w/out lifting. The bottom line is, please be informed before you have surgery. Seek out a specialist in urogynecology they can help you have a better idea of what you are dealing with, and when you find a good doctor they will help you through the pros and cons. My OB suggested PT to get strong, and then a urogyn. to get properly fitted for a pessary and to help me learn about my prolapse more accurately, but did not suggest the surgery. Good luck, take care of yourself, and I think Kiki had some great suggestions to help you with your symptoms! I hope you are feeling better soon!

HI Mandy,
where is your pain?
when i first got my POP the cystocele was most prominent. it receded and the rectocele took its place but at first i had really bad back pain & pelvic pressure (but not pain...). I found accupuncture very very effective. i found a woman who specialised in women's health issues and she was amazing. helped with the need to pee all the time and the pain. went weekly for a while, then less often. christmas and bday presents from my family were accupuncture ;-). But naturally it happens anyway as the bladder moves--lots of women have found pain improves--my personality is just that i try everything I can!

i don't know about pessaries--haven't tried one. but i do know that posture, diet, and lifestyle changes can do a ton. seriously, i'd order the book asap and start reading. if you can, order the DVD as well--a fabulous investment. There are great excercises on there and clear explanations of firebreathing and nauli--two yoga breathings that can really move stuff. i haven't been great about doing them but am being very disciplined at the moment as i really want to improve this rectocele from mild to "what rectocele???".

sounds like your doctor is not giving you much info at all. i'd be wary about going into surgery not knowing anything. go find out everything about what they would do, then research it. read about it. read about meshes--put it in the search engine on the left and you'll find out a bit more
google about lawsuits around mesh repairs for prolapse to get a full picture
First mesh site that came up

when i saw a surgeon who was a top urogyn specialist where i am he said living with it is better than surgery, but if you do have surgery do not get the mesh--he spends a lot of time trying to take them out now. so find out about all the options. i was told if they did do surgery for a cyst first you need to wear a pessary for a while, as lifting the bladder up can cause permanent incontinence so using a pessary can give them an indication of what might happen. so find out about all that too....and don't let anyone just say "oh it'll be fine" because you need to know all the risks and make an informed decision. tell them you'll sue if anything goes wrong and you didn't know about it--i bet you'll get a ton of information then!
also ask about is there a possible rectocele that is going to push out once the bladder is moved out of the way? is your uterus going to move? my organs all kind of hold each other in.

i don't want to scare you--i just don't think you are getting much information about all the possible things that can happen with surgery. As soon as I found out (first from reading a What Doctors Don't Tell You article) I realised that i needed to try to find alternatives first, which brought me here.
And i thought i'll try it and see what happens. three year on i can't believe the chance, and things keep improving...

and as i said, keep asking away! ;-)

Kiki

Hi Mandy

The others have given you very sound suggestions. It sounds to me as the pain you are currently experiencing is your main concern at the moment, and are keen to have surgery to stop the pain quickly, as much as to hitch up your organs.

Yes, if your cervix is closer during sex, that usually means that your uterus is prolapsing as well, but remember that your body and all the attachments to your pelvic organs have had to stretch and lengthen during your pregnancy. A certain amount of looseness and mobility is normal for any woman who has had a baby, so prolapse is partly normal and partly damage, aggravated by posture that positions the organs over the vagina instead of further forward over the pubic bone. It is not all prolapse.

The bad news is that you may experience further descent of your pelvic organs, but the good news is that you can learn how to hitch them up yourself and keep them higher and inside your body without any surgery at all. They will keep improving for years and years. They will never be as high as they were before baby, but you will eventually become skilled at keeping them higher than they are. Once your bladder, uterus and rectum are all competing to get out the door first they actually get jammed together and are too big to get out. We call this nature's pessary. It is actually easier to manage all three prolapses together, rather than just one, because of this characteristic. sounds weird I know, but many of us have found this.

With any luck, eventually, they won't bother you at all most of the time, and you will also learn to trust your body's ability to keep them there. It would be great to learn how to do this, even if just to tide you through until you really have decided that there will be no more babies.

It does sound as if your doctor doesn't think you would understand more technical explanations. That is no excuse for keeping you in the dark. You have a right to full answers to all your questions. That's what Informed Consent (for the operation/treatment) is all about. You are consenting to have an op, knowing all about what will happen, and the risks that you run, so you cannot turn around later and say, "But doctor, you didn't tell me that ...".

If you don't understand him, or if he is not telling you what you have asked, you would be wise to either find another doctor who will tell you, or take somebody trustworthy and interested with you; somebody who is willing to help you to get the answers you want, and to speak up during the consultation if necessary, to ensure that this happens. A bit like a doula for birthing, really. These doctors talk a foreign language. Sometimes I think they use medical jargon because they cannot be bothered explaining things simply. Or else they just accept what they have been taught without question, and have little deep understanding of their own work or curiosity about the 'why's' of this life.

Now, tell us about this pain. How many out of ten on the pain scale? What does it feel like? When? For how long? What part of your body does it seem to come from? Is it related to a particular time of day? Is it aggravated by anything in particular? What relieves it? Anything else? Sorry about all the questions. I am not really a sadist. It's just that knowing a bit more about it may help us to understand it better. You never know, somebody else on the Forums may have had the same thing.

If you buy Saving the Whole Woman by Christine Kent you will start to understand your body better. Eventually you will know intuitively what you have to do in everyday activities, but it is a bit of a steep learning curve. It will also help you to understand the doctor much better with all his medical language.

You are going to be wearing this body of yours for a long time. Ensure that you consider deeply before doing anything that will irreversibly change it. You can have surgery any time but once you have had it, it is very difficult, if not impossible to reverse the changes.

cheers

Louise

Hello again,

I just wanted to add to the pain comments, I haven't had time to read all the responses so forgive me if this was already said....but, I too have pelvic pain, it is the muscle on the left of my pelvic floor. I think it was injured during my delivery. I'm not sure that a prolapse should cause pelvic pain other than back pain, or "pressure". I would suggest seeing your doctor again for that specific problem. Surgery will probably not alleviate that pain (what my urogyn. told me, I too may have been swayed if it would have helped, it was awful!!), I think it is a different animal than prolapse. I am still in the process of finding out more about my own but from what I understand pelvic pain can be many things: an injured muscle/joint, infection, or even fissures (or are they fistulas?). A PT may be able to help if it is muscle related, I found some relief that way, but it now returns when I am active. Try and see what your triggers are, that may help you figure it out. This has all taught me how important it is to be an advocate for yourself! I hope you get some answers for your pain!! I hope this helps you get started!

wow, that sounds intense. are you sure it's all prolapse related? sounds more intense than anything anyone has said coming from prolapse. pressure yes, back pain yes, but that--how long have you had it for? is it all the time? when you lie down does it go all the time? first thing in the morning? all month or cyclical?
you want to be sure it is all pop related and that surgery would heal that before you even think about that, and be sure you get to the bottom of the pain.

great to go talk to the doctor. if you get the book, it'll help you to make a list of questions. as i said, definately find out about if they want to use mesh and research mesh and the problems before you go so you are armed. research the possible problems. find out about if you might have other POP, and what is likely to happen. find out about side effects. go to post surgery forums and talk to women who have had surgery to get to know all you can--informed consent it crucial all teh time, but with something like this imperative.

Have you read the FAQ's about the posture & started it? if you decide to do ask away, but read back through old posts for more details as well. there are some great descriptions that can help you figure it out to get it right...

Hi Amanda

Try googling "mesh complications gyn" and see if you still think it looks fine.<:-o>

Re the pain, another cause of pain, which I experienced after my first? pregnancy when I had a big episiotomy, is simple congestion. I felt like a had a blown up football stuck in my pelvis, like I was going to explode. I was probably doing too much, as I was basically doing everything in the household as my husband was working very long hours. I was able to relieve it by lying on our high-backed sofa with my head where my knees would normally be, and my knees hooked over the top of the back. However I could not stay there all day with a new baby! Doing that for a few minutes a few times a day got me through that time. I could even have had varicose veins, or at least swollen veins in my pelvis as well. That's what it felt like, anyway. Another way to relieve it was to get down on knees and elbows and stick my butt up in the air for a few minutes. You might like to try these two techniques and see if either makes a difference.

I was also spending quite a bit of time on the concrete floor of the laundry and our back verandah with all the washing I had; nappies and baby clothes and linen, and my own clothes, as my first baby was a serial vomiter for the first eight months. Nothing was sacred. We ended up with half-digested breastmilk in every crevice and every surface of the house! I seemed to spend half my days mopping up and washing,, and the other half filling him up again. Some well-cushioned shoes might help if you are on concrete floors a lot.

I used to get similar pain with periods, and I notice that you mentioned the similarity too. I know that you are several years postpartum but if your organs are hanging backwards and sitting lower, I can see that it would make little difference whether or not you have had a baby recently, especially if you are prone to varicosities.

I think somebody else mentioned it, but getting your bladder properly empty at least once a day, by having a wee under the shower, positioned stasnding slightly forward in a half squat, then bobbing up and downslightly with your thigh muscles at the end to really get the bladder empty, or on all fours, so your bladder and uterus are well forward, will definitely help.

I think it could be a vicious circle you are in. Sagging pelvic organs having a bad effect on your circulation and causing mechanical inflammation, which prevents you from carrying your organs in their proper position. *And* there is nothing quite like pain and discomfort for making us hunch over and 'protect' the area that is hurting.

If you can straighten yourself up and open up your chest so your boobs are high and well out front (lovely boobs!), and your shoulders are relaxed, then consciously relax your belly, your pelvic organs will naturally move forwards, off the top of your vagina to over your pubic bones. If you do this when you are upright, both sitting and standing and getting around, I am sure that you will feel the difference, not immediately, but probably after a day or two of getting rid of the residual inflammation you will start to feel less pressure.

I feel certain that finding things you can do to alleviate the pain will make you feel more positive about putting the surgery off. When you are in pain is a very bad time to make a decision to have surgery. It is like you will do almost anything to be rid of the pain, especially if the person who will do the surgery is caring, and positive about the possible outcomes, despite knowing that it doesn't always solve the problem. If they don't *know* what is causing the pain, they are stabbing in the dark, and you could find that you still have the pain after all the surgery. This really does happen.

At any rate, the more you can find out about the nature of the pain, the better position you (and the doctor) will be in to judge what, if anything, it is best to do about it.

Hope these suggestions help. We await the next chapter.

Louise

I'm sorry to hear you're having trouble with the mesh, and that the cystocele is back.

urine backing up into the kidneys is definitely NOT a good thing. I get that for sure. I'm just wondering in my very non-medical way, why modern medicine cant find a simpler way to manage that (catheter?positioning?massage?) rather than to subject you to invasive surgery. I'm glad though, that your health problems cleared up.

Wow, sorry for the complications you are having! Are you in pain? Tell us how are you feeling after the removal!

Hugs,
Liv

I'm hearing you, mayo - I wouldn't want to go back to the dr who put it in either! does he agree that it needs to be removed? I don't envy your predicament.
but thank you so much for being brave enough to share your experience here. I'm sure it will benefit countless women.
I hope you find the right one to remove that awful mesh, and that you have no further complications. please do keep us posted!
{{hugs}}

mayo, reading your post makes me want to hop a plane to where ever you are and go with you to the dr! because I hate dr's who are jerks, and its lousy to have to deal with drs like that when feeling in pain/vulnerable/etc. well, I will be with you in spirit on the 21st.
let us know what he says

(((((HUGS)))))
totally hear you
be strong & brave and then find another (better) dr if you can.
and have some chocolate or ice cream after.

Hi Mayo

Will be thinking of you on 21st. I can relate to your just wanting to get it over and done with. I can very much understand your new doctor not wanting to undo the mesh surgery, and sending you back to the old doctor. To do otherwise would be leaving her open to the risk of being accused of making it worse if the removal does not go well. But it does seem strange that these doctors seem to be using you (medically untrained) as a go between.

In your position I think I would want a three way meeting between the three of you and an independent support person for you as well, so that the doctors could discuss with each other and with you the best way forward for you. That way you could be confident that they are all working in your interests, rather than trying to pass the buck, and watch their own backs. I don't know whether or not this is possible. It just occurred to me that it would be a sensible way to work out what is best for you. I would think that you would have to instigate it, as neither of them seem to have suggested it already.

The other thing you could do is to request a second (independent) opinion. There may be a legitimate way for you to avoid further surgery at the hands of this doctor that you do not trust and do not like, and have been damaged by previously. It seems so insane, but maybe that is what happens in the USA? Is there a Medical Board or something similar that you could ask about these issues?

I do feel for you, and I hope it goes well. Looking forward to hearing how it goes.

Louise

We'll be thinking of you Mayo. Hopefully, that is where the erosion will end and you can get on with your life, free of these infections. Only 14 sleeps to go. Enjoy Christmas.

Louise

sounds like a good plan
will be thinking of you on Jan 5
hoping it all goes well and puts an end to your trouble

only the exposed mesh? or is it all exposed? I'd want it all out. Glad he's agreed to remove it. Now to boost your immune system before surgery... Good sleep, nutritious food, low stress, sugar free and extra vitamin C!