taken over two years to diganose my rectocele!!!!

thank you for your reply and kind words of which I am grateful.  My dear mum keeps telling me "I will get past this" but I have lost alot of faith and confidence in all honesty!  I can only pray that this lady will now be able to help me because she is the only person who in my opinion has tried to work with me and look into this and located an array of problems which she thinks she can help with.  I could not agree with you more in that "you have to be responsible for your own health" and the truth is I think we all know when there is something wrong it is just terribly daunting to think that all these medical professionals missed locating this!  If I had seen 1 or 2 consultants I would be inclined to say okay well they missed something but I saw 7 different consultants all pretty much checking the same area and still they didnt think to further investigate under general anaesthetic to try and locate the problem!  They werent working with me atall!   They just did standard tests and scans found nothing and gave me tablets!  This is not the way medical professionals should be!  If one, just one of them had worked with me to say we will look into this and refer you onto someone who could have helped I would have had faith but have lost alot of faith due to what I have been through in the last few years.

I am nervous re surgery but pray it will all work out ok and help relieve me of my symptoms.  Thank you again and I hope you feel well now

How right you are!  Stress does not help any but as a woman who has harldy been able to move away from home and live a normal life for so long I cannot help but stress about this...  I am so pleased you feel good now   that is great news.  Thank you for your kind words.  I am very concerned and worried still about the surgery to come but atleast I know now this is notin my head and there is a problem which I pray will now be rectified.

Hi Carol we do have Urinary Gynae Specialists.  I am finally seeing one on the Gold Coast.

Angela

Thank you for your reply and also for all your words and help. I am very much grateful having only signed up to this today.

I am sorry you have been poorly too!  I fully sympathise with anyone who suffers as we have and do!  It is so terribly difficult to deal with and as you say live with any form of normality.

 

I think my situation is quite different from yours.

What I didn’t mention in my post otherwise it would have been even longer than it was  J  J  is that I had a rare illness in 1998 called “cushings syndrome” and after my head surgery to remove the giant tumour I was left with a condition called diabetes insipidus. DI is a very rare disorder which many people get after pituitary surgery which basically damages the thirst gland in the pituitary which means that without suppression tablets for the rest of my life which I take twice daily I would want to wee and drink all the time because my thirst gland is completely out of balance!  This is such a rare condition that even when I have called 999 and been to a and e I have to spell it out for them and they immediately think I have sugar diabetes which I don’t so I am much more complicated because of the DI.

 

Because of the DI my kidneys and bladder are a fairly weak point anyway but having said that my DI has been controlled very well with my endocrinologist over the last 15 year period and I have never suffered like this with my bladder.  My other symptoms are vaginal heaviness and pressure constantly, lower back pain, left constant flank pain, bloated stomach and bowel issues and sometimes I literally cannot stop going to the loo (bladder) and it makes me feel just terrible etc… I don’t have blood in my urine but there have been several infections found along the way but these can also come from rectocele as when an organ moves or drops it causes everything in that small area to become out of balance and throws extra pressure around the area too.  She also saw that my bladder when filled to capacity through the cystoscope has a lot of inflammation around it which is basically because it has been irritated for so long.

 

The uro gynae def thinks the rectocele is causing the problems including the bladder issues!  The problem I have is that after having had cushings syndrome my muscles are much weaker anyway because of the illness therefore anything in that area, so to speak is contributing to the sensation from the prolapse which in turn is sending the sensation from my vaginal pressure that I need the toilet all the time so in actual fact it is not predominantly causing the bladder symptoms atall which I have always maintained as I have had my bladder and kidneys check time and time again…. Even though I believe I have had this for a very long time and it has gotten much worse over time which has irritated my bladder and caused the slight stress incontinence they saw on the uro dynamics testing!  I do not leak atall it is just this awful sensation I have all the time to go to the toilet and the uro gynae def thinks everything I am suffering is from the rectocele which she thinks has been there for some time.  I am very upset that none of the doctors found this or took it upon themselves to investigate, still they all got paid their bills which I see now is where their priorities lie sadly. L I am having an MRI in two weeks and also a protogram to check the exact type and direct location of rectocele so as to determine which surgery I will need, whether it be through the vagina or via keyhole surgery and too be honest I am dreading the surgery whichever it is but I feel at this point that I have no other choice as I simply cannot carry on as I am!

 

I have had so much medication through my system in the last 20 year period that to take anti-depressants and strong pain meds ( which many of my friends take for diff reasons and cannot now live without) is an absolute last resort for me and if there is any way I can cure all of or most of these symptoms by getting to the root of the problem with surgery coupled with physio which the uro gynae thinks is from the prolapse then I have to try that in the first instance L

 

I never suffered with depression until suffering with all this!  It has taken all my confidence away and I spend much of my time in floods of tears out of sheer frustration more than anything! I have been prodded about with all these tests and have really seen a different side to general healthcare and what a lot of it is about!  I really could write a novel about what I have experienced!  How some of the doctors with their total lack of compassion and bedside manner claim to help women with debilitating urinary conditions as people like us suffer is absolutely beyond me!  Most of the doctors just sit behind their desk, tell me how “complex a case” I am and send me away!  I am lucky to have a fantastic GP who does everything in his power to help and assist.  Unfort though in his capacity as a GP he can only do so much and so we have left it to all these people who claim to be professional and have not really been able to help until now when I have located this uro gynae.

 

I hope your surgery will also go well for you and will cure your problems going forward.  I will look at the Elmiron.. thank you for this tip .. I have also researched that med which seems to have helped quite a few people.

As for the mesh this is not something the UG suggests for me so for me it would be surgery to repair to rectocele and also assist with the stress incontinence.

 

Thank you again!  I am very much grateful for such kindness and help

Dear Chica,

Thank you for your lovely messaage. I am so sorry you too have had a difficult time!

Have you thought of trying a colo-rectal doctor to check out the indigestion and stomach upset as maybe it could be related to something like diverticulosis or irritable bowel syndrome!  Just a thought!

Like you I have seen some specialists who are rude abrupt and have almost made me cry in front of them! I cannot understand how I have seen eight different specialists and not one of them thought to refer me to someone else infact they just kept calling me back in for follow up consultations when they seemingly had nothing to tell me or help me with!  They called me back to make another £250 or £300 out of me, nothing more, nothing less. That is the sad truth!  I know there are genuine doctors out there who really do care and want to stand with us on our side, believe what we are telling them and actually try to help us but I believe those doctors are few and far between.

I am thankful to myself for researching this uro-gynaecologist who is by far the only doctor I have sat with who I believe really understands what I am telling her and is really going to try and help me.

I have literally been at the point of a breakdown with all this and have pretty much spent two years feeling like this.

Also like you I had a polyp which was removed when I had the cystoscopy but that was not really related to all my other symptoms which are coming from this prolapse.

I think there are many of us patients who could write a novel about all of the things we experience with healthcare!.  I cannot believe that for two years I have gone to so many doctors and had test and test and test and not one person found this!

Also I agree with you that the more we google the more we find we have but because many of the doctors dont provide us with the help of knowledge we need from them we have no other choice than to tap into the internet to see what others who are suffering the same symptoms as us are saying.

I am so pleased you feel a little better now from the vitamin b complex and hope that continues to help you   are you taking any other medication at the same time to help you or just the vitamins?

I will have an MRI scan and then know more about the surgery which honestly I am dreading. I am trying not to think about that too much as I just end up in tears and with panic attacks as I am not sure how much more of this I can go through but I try to remain as positive as possible and hope my life will get back to some normality.

As a 41 year old woman who had a brain scan mis-read by a radiologist in 1997 I lost alot of faith because he didnt find the tumour I had and once again if I had not pursued it myself and taken myself a year later to see a neurologist who found the giant tumour I had I am not sure what would have happened.

I guess we must go with how we feel and continue to pursue despite what these doctors tell us.

I wish you only good health and much happiness. 

 

just think positive now.

you've got your diagnosis.

that in itself is a turning point in your life.

i'm sure you agree that not knowing whats wrong grinds you down.

your family must have all been worried stiff especially after spending so much money, you deserve a result.

i've had 7 different gynnos, all men working for the health service and all adamant that my fibroids had calcified and that wasnt cause of my pain.

i then went privately to a lady who used her magic wand on my stomach and declared i need a hysterectomy.

my alarm bells rang at that moment.

i could go on and on.

i am probably your mothers age as my children are early 40's.

what country are you in.

my heart goes out to so many women in usa that cant afford any healthcare and rely on forums such as this.

all my tests are clear.

but what i dont understand is how any kind of early stage prolapse is diagnosed.

pelvic stuff moving south? causing anerve or ligament to stretch and causing pain.? how can they tell where it used to be.

plus tests are always taken in a lying down position.

i do agree there must be some doctors out there that know what they're doing, but our mission to find them is the problem.

well done to you .

i do take a sleeping pill but i'm not one for the anti depressants.

Thank you again for your post.

I am happy I have a diagnosis but am still scared and frightened going forward and pray they haven’t missed anything else.

I think as you say it can sometimes be difficult to diagnose a prolapse in the early stages but also believe this has been coming for a long time and that in the last few years it has worsened in a big way.

I guess if all these doctors cannot locate anything wrong with the bladder/kidneys/colon etc… and they listen carefully to the symptoms with which the patient is suffering they would be able to refer the patient to someone else to check more thoroughly and via a process of elimination would eventually find the problem.  I did so much research myself that I actually remember saying to my GP and three of the specialists that I thought I must have some sort of process given I felt there was something pushing or pressing on my bladder or at least causing the sensation for me to want to urinate all the time without even having had anything to drink.  Not one of them took my side and sent me for a full internal examination under general anaesthetic to get to the root but instead wanted to throw every anti-depressant going at me coupled with strong medication which I couldn’t just readily agree to which most of the doctors didn’t understand!

 

The uro gynae tells me that the pelvic organs are all located in an area about the size of both of our hands opened out therefore anything in that area which has dropped or moved or is pushing on something it shouldn’t be can effectively cause each and every one of my symptoms including sensation for the bladder to react the way it is so of course I thought all along this was bladder related and that there was a problem with my bladder or kidneys which have been checked so many times that I have actually lost count where nothing has ever been found infact they all tell me I have a very healthy bladder with a large capacity!

 

My dear mum and dad have been and are my angels!  I am only sorry to have been such a burden to them because they are with me every step of the way.  I thank g-d they do not suffer and would never wish any pain or illness upon them.

 

I am sorry you saw so many gynaes too but have to say that once I saw the uro-gynae her take on things was completely and utterly different and she seemed to see and understand things and wanted to work with me to locate and try to resolve the problem when none of the others did!

If I would have looked to the NHS for all this I doubt I would have had much done atall, maybe one ultra sound and an x-ray thrown in but sadly the NHS waitlist for things they deem non-urgent (which unfort is most things) is very very long and I got referred for an MRI and the waitlist was four months and counting so had no choice but to book it through private scan centre instead.

I am in London and like you feel so sad for the people who cannot afford the private healthcare option which is extremely costly and have to rely upon the NHS for assistance with such debilitating conditions which is literally the bain of my life.  I haven’t lived with any form of normality since this all started and am worried I will never return to how I was L  I pray I can get better… My head so full of all the different things I have been told in the last two years that this in itself causes me panic attacks and much stress.  My chinese acupuncture lady who is nothing less than fantastic does not think I should have surgery for the prolapse and thinks that in time the acu and herbs will make things stronger but I disagree with this prolapse being a stage 3 and causing me such pain and discomfort.  I will continue the acu for the stress and to maintain things but think the surgery would be vital although am sure some would disagree.

I tend to keep myself to myself as many of my friends are quite self-centered and if they are laden with a headache it is the end of the world so they have no form of compassion for me being in genuine pain.  As the saying goes..” one should never judge until they have walked in someone elses shoes” but hey that is life.  I would not wish ill health on anyone because as far as I am concerned I believe that if you have your health each day you have already won the lotto over and over again..

I hope you will also get to the bottom of your problems and feel better with all this.

oops sorry the above para (para 4) meant to read prolapse not process!  Sorry....  typos in force today

wondering how you are doing...  I havent written into the site for 7 months since  I started the pelvic floor physio but in honesty that didnt help one bit infact symptoms now seem to be worse than ever and feels likte both the rectocele and cystocele are getting worst by the day as I still suffer constant bladder frequency and urgency, pelvis left side pain, bloated tummy, nausea, back pain... the list is endless and I cannot go on like this so have made decision to go ahead with the vaginal surgery to repair both prolapses and pray the surgery will go some way to alleviate me of my symptoms. I am beyond petrified I really am and am suffering terrible anxiety coupled with everything else.  Surgery should take place in next few weeks and I feel confident in the uro-gynae helping me.  She is well versed, compassionate and believes she can help.  I hope so.  I would love to know how you are doing and can only hope you are feeling much better now.  Hope to hear from you