Struggling with diagnosis and no answers

Hey Clover,
Tough times. The cramping and back pain make me think you might have a bladder infection. I think a urine culture would have made more sense, the STD inquiry is insulting for sure!
So, you are 28. Just had your first baby and now this prolapse thing. I gotta tell you, sometimes I have such a hard time remembering what it felt like in the early days for me. I feel so confident and calm about it all now. But man, when I was where you are right now, I was a total and complete mess.
So, some insight:
1. this phantom orgasm thing is just strange. I'm not a doctor, so please don't think of this as medical advice, but it sounds to me like a nerve problem. Sounds like the nerves are 'sleepy' - have you looked into things like pudendal neuropathy yet? The good news is that these nerves can certainly recover.
2. You will be a sexual person again. This is not how this ends for you.
3. The best way to manage your condition right now, since your funds are low, is to read as much as you can here- use the search function. Check out all the articles (free) in the village. Watch all the interviews and wholewoman videos posted to youtube. Ask as many questions as you need to ask.
4. So so many young moms have this condition. Many don't even know they have it. You are not alone at all.
5. the progression of your prolapse will slow down and could even reverse.

We are here for you.

Hi Clover

Of course you will recover your sexual response. Good grief. I didn't even discover orgasm until my late forties, after I knew I had prolapses, and the old mojo still works, menopause and all. ;-)

If you get stuck into reading on this site you will find out a lot free, and can get yourself on the path to recovery. Also, take a look at the excerpts of Christine's DVD's on Youtube (wholewomaninc).

I can hardly imagine your stress levels right now. You are probably pretty tense a lot of the time. This may cause you to unconsciously tuck your butt under in self-defence and also hunch your upper back to protect your front. Holding a baby in front becomes a very defensive exercise. This is the worst possible thing your body can do to retain your pelvic organs inside.

It will be helpful for you to do some brisk walking every day with baby in the stroller, in Wholewoman posture (aka Her Majesty, Queen Clover), to burn up some adrenalin and open your body out. Take nice, long, relaxed strides, leaving your back foot on the ground for as long as possible before lifting it. This helps to stretch your hip flexors and pull your lumbar spine forward, which will tilt your pelvis forward a bit and move your pelvic organs forward, where they are further away from your vagina, and better supported.

This will also lift your pelvic organs, and lift your perineum. If there are any stretched nerves in there which are causing you
discomfort it will help relieve that irritation. This is the pudendal neuropathy that Alemama referred to. We are not experts, but it is worth trying. healthy nerves equals healthy orgasm. ;-)

Keep your belly relaxed, and your chest raised. Raising your chest will stretch your abdominal muscles out and make them tauter. Your pelvic floor will also tighten. It feels quite different at first, but becomes addictive.

Speed is not important, but stretching out and opening up, with big movements, are both important factors.

Hope these suggestions help. Your body is no way completely reverted from your pregancy. It is a full 2 years postpartum before reversion is anywhere near complete. Promise.

Louise

Clover - Louise is so correct that you will get tons of information and support from this forum. But PLEASE get the book as soon as you can. You cannot dabble in this....you need to immerse yourself, in order to really make the changes you need to make, and that is a long slow process that will be a challenge with your busy life. You need to understand the anatomy, hear firsthand about Christine's journey, and fully comprehend all the ramifications of what the medical profession has to offer. Doing so will build up your strength, your faith in your body, and most importantly, your whole attitude and mindset. Everything is so connected. Right now you are in panic mode; we've all been there, and have come back to find ourselves! - Surviving

Clover - I'm not sure exactly how a Kegelmaster works, and Kegels in general are not high on our list of useful tools in the maintenance of prolapse. If you do them, please make sure it is with the lumbar curve in place, NOT with stomach pulled in and butt tucked, as is sometimes practiced. If you do nothing else, you must be clear on posture (look under FAQs on the tabs above).

Clover, you are the first person I have encountered who has mentioned experiencing a 'vague' orgasm. This is exactly what happened to me when my prolapse symptoms emerged when I was 45 years of age. I have described it to my husband as if the orgasm is happening on the other side of a wall, where you know instinctively that it is there but you can barely perceive it. The former intensity can no longer be achieved.

I wish that I could tell you that I have found a solution so that I could offer it to you, but I have not. It has been very emotionally demoralizing and frustrating (for both my husband and I) -- so if it is any consolation that someone else out there knows what you are going through, then I hope that at least helps in some little way. I will even admit to feeling angry and cheated that as if it wasn't enough that I have to deal with the day-to-day annoying POP symptoms, that my sex life has to suffer for it as well.

This loss of sensation of orgasm was also accompanied by a loss of sensation when I am urinating. While I am not experiencing any significant leakage (most of the time, none at all), I have to determine audibly when I am finished urinating because I can no longer feel it like I used to. I suspect that this coincidental loss of sensations (orgasm & urination) are closely linked.

I am hoping that some of the WW techniques for dealing with POP will help me to overcome some of the loss of sensation issues.

Hi Clover,

It's just the wrong concept, that's all.

Obstetrics and gynecology got a few things right (let me see...I need to think about what, exactly) and a whole lot wrong in the several hundred years since women's reproductive organs became dominated by medical men.

The gynecologic view is that we have a soft-tissue pelvic "floor" at the bottom of our torso that must be "strong" in order to hold up not only the pelvic organs, but the abdominal organs too! The vaginal walls must also be "strong" in order to hold back the bladder and rectum. These can be made "stronger" by surgeries that create scars to shore up the walls and when that fails, mesh implants - all of which have proven to be futile and disastrous.

In reality, we have a pelvic wall (like four-leggeds) and our pelvic organs are supported against the lower belly and true pelvic floor - the pubic bones that come together underneath you like straps of a saddle. The vaginal walls fold down upon each other against intraabdominal pressure to create a closed, airless space - the reason you don't have vaginal air when sitting and standing upright. That is their defense against neighboring organs pushing into the vaginal space. An open vagina, made so by suck-and-tuck postures and lots of kegels, allows the organs to more easily ooze into the vaginal canal.

Most of us have very strong pelvic "floors". It is not about strength, but understanding the dynamics of actual female anatomy, which have never been recognized or understood by OBGYN.

This is the Whole Woman work. If you want to strengthen your true pelvic organ support system, stay in WW posture, which lengthens and widens your pelvic diaphragm, potentiating its primary function as a body wall that rebounds intraabdominal pressures after they first strike the lower belly - moving the organs forward and away from the pelvic outlet at the back of the body.

Welcome to Whole Woman!

Christine

The WW approach is sort of all-or-nothing. It has worked for many woman, largely through the program being followed rather diligently and not by picking and choosing which parts to accept and which to reject. If you think that something is working for you, by all means do it, but if it conflicts with what Christine and others here recommend, that could certainly affect your results. That's because Christine's approach is rather different from everything that conventional medicine and PT have espoused. I also would venture to guess that the majority of posters here would not place the quality of their orgasm above the agony of having your organs coming out of you. I would hate to think of you making your prolapse worse in your quest for the big "O".

Well, I think you might find that using such a device on your back or standing - where you have to tuck to insert and hold it, kinda like inserting a tampon - will open the vagina because your pelvic floor muscles have shortened from front to back. Squeezing hard in this way is actually pulling your bladder and rectum toward the center - your vaginal canal. By all means try it and see if it helps, as prolapse is a personal journey of self-discovery for each and every woman.

It is possible your altered anatomy is stretching and weakening your clitoral nerve network - not unlike the way the nerve center under the bladder becomes attenuated with prolapse, leading to urge incontinence as we age. From an anatomical point of view, reversal would mean restoring natural anatomy, which is what we are attempting to do here with posture and exercise.

hi clover12,

I have had bladder prolapse for many years but it started getting much worse in late spring of this year. at the same time, my orgasms suddenly became totally unsatisfying. like a tiny flutter. not worth the effort and very disappointing and frustrating. it got worse and worse until I just stopped trying.

then in August, my uterus prolapsed (and I realised I had a rectocele too though it may have been there for some time without me knowing because it's mostly noticable right before I move my bowels... but I had never checked inside at that time before until having the uterine prolapse caused me to check often.)

I was very lucky to find the whole woman site almost right away and begin the posture and, a few weeks later start the DVD exercises).
unexpectedly, my orgasms are now absolutely awesome again!
I wonder if this is because I am masturbating only in a position that helps my uterus, bladder etc tilt forward. I do it on elbows and knees now with butt in the air. which is awkward... but worth it because then I know that the contractions won't push my uterus further down.
I also wonder if something about the prolapses was interfering with nerve signals and thus sensation. maybe having the organs back in better positions allows those nerve signals to get through.

have you tried that position?

If it's not too personal, I'm also wondering if you use clitoral stimulation to orgasm. (I would never be able to orgasm without that so I don't know much about that scenario)
if you do, have you found that you have less clitoral sensation too?
if that's the case, it should have nothing whatsoever to do with strength or muscles but either neurochemistry or nerve signals.

for context, I am 35 and have never had kids

p.s. just in case... have you begun any medications recently that effect serotonin? they are notorious for causing anorgasmia and reduced sensation. I had both of those when I was on various antidepressants.

wishing you all the best
:)

Ok.
So then.
In the interest of science...I have to question this orgasm/intensity thing.
Would you all say that in your experience all orgasms are at about the same intensity or would you say that the intensity varies?
I have experienced some pretty lame orgasms. I've not ever stopped to be concerned about this- I guess since I thought it must be normal. I've also experienced some mind blowing orgasms. I can't say that there is much predictability in what I'm gonna end up with- though sometimes I know it's gonna be awesome before I even get started (I can feel the heightened sensitivity in my skin even). Mind blowing happens just about as often as the phantom type you describe. Most of the time though things are just good and I'm happy. I think if it was mind blowing every time I'd probably abstain most days- whew- I have trouble sleeping after that type of stimulation.

anyway, seems like you might like to go on a quest to learn more about neuropathy, nerve centers, stretched nerves, blocked nerves, dead nerves etc.
A recommendation off the top of my head ( and something that has helped me so much with nerves and nerve pain) is massage. You can do your own perineal massage and uterine massage. You can also see someone who can help you with this type of massage. You might also like to try chiropractic and acupuncture. These three things have been super tools in my prolapse tool box. Sometimes it can be so simple. I was experiencing numbness in the top of one of my fingers. It was not such a big deal but it was annoying. I talked to my body worker about it and she worked a spot behind my shoulder blade and the feeling returned to my finger. It has gone numb again, but now I can get at it with a tennis ball on the wall.
Also, flexibility training might help you. When my back pain causes pain to run down my leg I know it's time to stretch out my hamstrings.

I know it's frustrating to hear that the thing you want to try might not help. I can tell you that I've been here almost 5 years and I've most likely read every word written on this forum and I've maybe read of 2 or 3 women liking a kegal master. I know it's hard to hear Christine tell you that you don't need strength in your vaginal muscles to stabilize prolapse. It's such a hard pill to swallow. Believe me, I am all about strengthening the body to cure it- this is one of those times though where understanding the function of the particular muscle or organ is very important. One way I like to think about it is that the vagina is for letting things out not keeping things in. Sure it's fun to have super strong muscles in the vagina- so strong you can pull a condom off with no hands even- but it won't prevent prolapse and it won't cure it and using a kegal master may even make things worse....your milage may vary-and it's good to try everything that seems like a good fit for your journey- no stone left unturned and all that.
The good news is that aside from using the posture, which allows the vagina to realize it's most stable and strength building potential, the best way to get stronger is to have sex.

Sometimes, this sex thing can be in your head a bit too. I don't know if it's like that for you or not- but for me, the more worried I am about things, the more freaked out I am, the harder it is for me to be into it.
Having a new baby in the house is also a tricky factor to consider. Sex really isn't the same after a baby- in so so many ways (physical, emotional, logistical). For me it is always interesting. I have to slow down and get to know my body again. Anyway, just tossing it out there that there are so many factors- don't stop at prolapse :)
Operation O is underway- I'm gonna go out on a limb and predict that the two of you are gonna get this sucker figured out.

I'm sorry Clover, I did not mean to offend you and perhaps my words were not well chosen. I was reacting to your statement that you wanted to do Kegels to improve your sexual satisfaction, despite realizing that they might not be good for your prolapse. I apologize. - Surviving

Hi Clover, (Miss Cali, and others)

You have raised some interesting questions. Some are really basic Wholewoman questions. Others, like the anal sex question are more challenging. We are not sexologists, just (sexual) women who have had experience with managing our own pelvic organ prolapses by following Wholewoman techniques.

You have had some great answers from some very experienced women. I think you now need to go away and think carefully for a bit about the answers you have received. We cannot work out the answers to all your questions, but you can now use the answers that we have given you freely, to work out for yourself what is OK and not OK for your body, and why.

I think Surviving60's comment about jumping in boots and all and doing all the techniques on a whole body basis is very true. What we do here is absolutely holistic. Picking and choosing techniques will not work. You have to improve many things about the way you live in your body. Even then, there are still no guarantees. These techniques do work, to varying degrees, but only if you are not trying to subconsciously sabotage your own efforts, and only if your main motivation is to heal yourself and get on with your life. We cannot heal you. You have to do that, and you have the power, and patience within you to do this, if you tap into them.

Your open and positive mind should serve you well in this regard. Hopefully, when you have figured out some answers it will be very interesting to hear what you have to say in the way of adding to our knowledge, which we have all been developing over the last decade or so.

BTW, thanks Miss Calli for the tip on masturbation positions. Sexual arousal and orgasm do some weird things to the body, that can generate quite a bit of intraabdominal pressure, and it would be easy to allow that IAP to be directed the wrong way, and exacerbate POP, while you are off in O-land. That is another thing for me to go away and ponder on. Clover, have a think about that one too! There is a whole lot of sex going to happen in the next half century of your life. Do it well, for the sake of your body's long term wellbeing. ;-)

A good start would be to buy Christine's big package of book, DVD's and exercise baton, and go for it. Whether or not you use your 'smart balls', Kegelmaster or whatever, just seek to understand what your body is designed for, and how you can use its anatomic features for its own benefit.

BTW, bear in mind that anal sex has many faces. If you like it, then you owe it to yourself to figure out how your body will respond to it anatomically, and then decide for yourself whether or not to risk it. i am not into anal sex at all, so (shrugs ...)

There is also the possibility that you are winding us up.;-) If so, good luck! We are a very experienced and tough mob of old, and not so old, chooks, who will probably continue to respond honerstly to the questions posed, because they are thought provoking questions, that we may or may not have answers for, but you can bet your bottom dollar that your questions and our answers will be devoured by interested women, and will add to the body of knowledge and opinion out there.

BTW, there is also an enormous amount of material from nearly ten years of WW Forums. You can also mine this information by using the Search facility, to look for common and uncommon topics.

Louise

I do think I need to do pelvic floor/kegel exercises to help with my urge incontinence as it did help all those months ago (and it did seem to improve my ability to actually feel orgasms as they were happening)...can anyone explain how they can be done safely within the WW principles, so that the stability of the pelvic organs is not compromised? Sorry if that's a basic question that I should already know about.

Thanks to anyone who can reply, and thanks again Clover12.

Hi Moodle

I think the main factor with Kegels is that the straighter your lumbar curve (when you lie down) the more movement you will get with Kegels because the pelvis and sacrum have to counternutate and this makes you do the equivalent of tucking your butt.

If you cannot get a lot of movement at first, then butt tucking might help to get them moving, but get your lumbar curve back asap, to ensure that the Kegels are not counter productive in the longer term, by malpositioning your organs sagging backwards at the top of the vagina while you have no lumbar curve.

The second factor is that when you are in WW posture your pelvic floor muscles are taut enough to be operating well when you ambulate during everyday actitivities. They alternately contract and stretch on each side as your stride alternates. So, why would you want to spend time lying down, or sit down and do Kegels a few times a day, when you are already exercising them all the time?

You won't get much movement out of Kegels in WW posture, because the PF muscles are already taut! You won't feel as much elevation, but that is because your PF is not sagging! Any muscle that is sagging is not being used. That tells me that if I use them they won't sag. So, I use them. Simple.

Do them, by all means, but understand what happens when you do.

BTW, re ghost orgasms, I wonder if that is your postpartum body's way of saying, "Don't get much enjoyment out of sex yet. You have a baby to look after". A difficult BF relationship first time around might make your body think there is someone else nursing the baby as well as you, so it is OK for you to go out after feel-good sex." I think there is usually some species survival gene or something lurking in situations like this. If I was God I would make nursing Momas go right off sexual enjoyment, for the sake of ensuring that babies are the main focus of their Moms. (Don't worry, I have no illusions about thinking I am God.)

Louise

Hi Clover,

In the interest of all the lovely women here who wish to be supported and have been thoroughly supported for all these years, I must step in to say it is you who is out of line.

I took time out of my extremely busy day yesterday to help you understand why the kegel machine might exacerbate your symptoms, only to be slapped with, “It does turn me off a bit though when I feel like I am being told that only your approach will work and that anything else I do or try is wrong. That is not why I came here.” Okay, whatever...

But then to have you reply to Surviving’s helpful post with, "I am here not to be judged, so the high horse approach I find rude and insulting.”

And you wonder why we are questioning your intentions? It is hard not to question someone who comes to the forums with barbs and zingers.

We are all doing the best we can to comfort and inform one another. With that comes the necessity to roll with the responses we get, which are almost always spontaneous and well-intended. Are they the perfect answers you were looking for? Obviously not, but they are the best we can do.

Christine

Maybe the biggest thing to be sorry about is not knowing what the WW principles might have accomplished for your prolapse. You never once posted anything indicating you thought any of it was worth trying. No one's suggestions got a rise out of you. Too much emphasis on your sexual satisfaction.

Hi Clover

Yes, I was 'sort of' joking. My masseuse said to me only the other day, "the body never lies". I have also just finished reading Ina May Gaskin's Guide to Childbirth, which echoes this sentiment. I am obviously not the only person who thinks our bodies have more wisdom than we give them credit for. That is what I was getting at.

Yes, babies do sorely test relationships. Sure do. Many women report not being interested in sex for quite a while after birthing, whatever the reason. Your comments about ghost orgasm adds to this story. To tell you the truth, I don't think we have ever discussed orgasm in the postpartum period before. However, I do acknowledge that nine months postpartum is hardly the same as a woman who only birthed a couple of months ago.

Your phrase, "I feel like my body has betrayed me", has been said many times by different women on these forums. It is a very common sentiment, and makes me realise every time I read it that we take so much of our body's behaviour for granted.

Discovering POP can take us into a genuine grief process, and we need to acknowledge that we are not ourselves, unable for a while to rationalise what has happened. POP can feel like a real assault, physical, mental, emotional and yes, it can affect us sexually as well. It is so hard to get into our heads that change can happen, and that all we have to do is make, or enable, it to happen.

The truth is that sometimes we hear things we don't want to hear, and we need to decide for ourselves if there is some truth in it or not. Forums can make this more so, as we do not have body language to refer to during online dialogue.

The other factor is that we don't know any more about us than we know about you. We have had a couple of instances in the past of women who were hell bent on making the point that they continued to disagree with the way we do things. That's fine for a while but it gets very trying in the end, and when we have said all we can to help them, and they refuse to get on with it there is little more to do than simply ignore them, or risk the 'tone' of the Forums degnerating.

I have an enormous amount of respect for the time and resources Christine has put into getting her Prolapse Management model out there to the world. It is a whole body thing, and to not do everything she suggests is to not give it the best shot. Nobody else has come up with anything that comes anywhere near as successful. I can see why she defends her point of view so strongly. It works.

You don't have to take on WW as a way of life. You don't have to stay on the Forums, but I hope you will because you have a lot to gain from it, and will come out of the experience able to help other women as well. The female body, and women's sexuality is very poorly understood, even though medical world can do things like surgery on unborn babies and rebuild badly broken bodies. It is only dialog between women that will change that. Let's not be too precious about ourselves.

BTW, do check out pudendal nerve neuropathy. www.tipna.org is a good place to start. PNN seems to be caused by perineal descent aggravating the pudendal nerve. It is usually regarded as being a problem in women who have had hysterectomy, but we do have many Members who have experienced pelvic pain and discomfort, and that may be why. Overcoming the weird sensations may be as simple as getting your perineum to stop sagging. WW posture and other techniques will help you do this.

Louise

Let's wipe the slate clean and start over, eh? :-) We are all human.

May daughter had terrible problems with both bowel and bladder incontinence until she was six years old. Medical specialists ended up giving up on her. I figured there was some lack of awareness of sensations happening, and that indicated a nerve blockages or something, so I took her to a chiropractor. Problem solved in about 6 weeks, with only minor problems remaining. She then went monthly for several years, and ended up completely normal. The chiropractor could not believe the dramatic recovery she made, and the specialist paediatrician said it was just coincidence. I don't think so.

One of the things that WW posture does is to passively tilt the pelvis forward and move the pelvic organs forward. It also moves the top of the sacrum forward, and tightens the pelvic floor, lifting the perineum as well. You need to read Saving the Whole Woman or trawl these Forums to understand how this works.

In using this posture there is less distance between the uterus and bladder and where their nerves come out of the sacrum, so the nerves are no longer stretched, so they don't get irritated. Is this sounding familiar with PNE??? I attended a lecture by Dr Thierry Van Caille(?) a couple of years ago. He is the guy who pioneered the operation where they trim away part of the ligaments that irritate the pudendal nerve in women who have had hysterectomy. These women's pelvic structures have been sutured in position so they don't have the freedom of movement for their organs inside the pelvic cavity, so they are unable to adjust the positions of them. This operation for these poor women has literally allowed them to get up out of bed and move around and have a life. I have met some of these women.

One woman in particular had hysterectomy for pelvic organ prolapse. This is one of the things that drives me here. I am so angry that this woman has been mutilated unnecessarily and has been left with a permanently changed body which no longer allows her to make herself better and relieve the debilitating pain caused by her gynaecologist.

However, as Whole women we are able to do a lot in the way of manipulating our pelvic organs. Your progress may be fast of slow. You will have little setbacks along the way, but logic tells me that it will help your lack of sensation.

Posture, clothing, seating, food, appropriate exercise, and how you move your body.

What do you have to lose? How can this harm you?

Go to the Library, then Inspiration on the left hand side to read my story, The Two Doors to find out why this is worth trying before any other treatments.

Best wishes

Louise

ps I had a diagnosis of trichomoniasis from a doctor a few years ago. Trich is a condition that is almost exclusively sexually transmitted. If he was correct, it meant that my husband had been getting a bit on the side (because I certainly wasn't!), and I was the one suffering from it. Offended? Hurt? Angry? You betcha I was! I can see where you are coming from.

To his credit the doctor was looking at my symptoms, not my marriage, so he did the ethical thing by making a diagnosis that I wasn't going to want to hear. As it turned out the diagnosis was not correct, and all was well all around.

Sorry, no need to reply about this post...was just attempting to edit prior post and didn't realise this would be posted again.
Merry Christmas
x