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

Posted , 54 users are following.

I am writing this in a bid to help others who may have been suffering as I have!

My story is long so I will keep it brief! I am a 41 year old woman who has endured a complex medical history over the last 20 years but in particular have suffered extensively with bladder symptoms - bladder pressure & frequency and constant UTI's/thrush/left flank pain, lower back pain, stomach bloating, irregular and difficult bowel movements in the last 2 years.

I have been seen by several different specialists (2 x urologist/2 a gynecologist/2 x colorectal surgeons/2 x endocrinologists) for my debilitating symptoms and have endured countless tests and procedures inclusive four cystoscopies under both general and local anesthetic/steroid injection into the bladder/several ultra sounds scans/MRI scans/CT scans/ countless swabs and urine cultures/xrays/sigmoidoscopy/virtual colonoscopy... the list is endless...  I have also sat with half of harley street explaining my complex and debilitating symptoms to them.  They have until now found nothing significant other than repeated UTIs for which they have treated me with an array of strong antibiotics which have made no difference whatsoever.  I have also visited a & e several times as I have been in such terrible pain and have been sent away each time with either antibiotics or a sheet telling me I am suffering constipation!

In a bid to shut me up half of the specialists I have seen have offered me strong pain management medication such as pregabalin and every anti-depressant going of which I have refused stating that not only am I reluctant to add the daily medication I have to take for the rest of my life due to a pituatory tumour I had removed in 1998 attached to a rare illness (private radiologist misread the CT scan so tumour was giant by the time it was located and had to be removed immediately) but that this would not cure the root of my bladder problems and would merely send a message to my brain to tell me I did not have the problem!

Some weeks ago I decided to do some more research myself and had my doctor refer me to a uro-gynaecologist. I have only ever seen regular gynaes, urologists and colo-rectal specialists none of which have suggested at any time that I should see a uro-gynaecologist!

What can I say!  Thank goodness I pursued this and saw the uro-gynaecolgist because this lady is not only well versed in everything I have been suffering but she has taken the liberty to send me straight for uro-dynamic testing and also sent me for a cystoscopy/proctoscopy and examination under general anesthetic which showed quite clearly that not only do I have stress incontinence and an irritated bladder but that I have a grade 2-3 rectocele prolapse which it appears is causing most of if not all of the symptoms I am and have been suffering.

I am forever thankful to have found this uro-gynaecologist.

The next steps are for me to be referred for some pelvic floor physio and then I will need surgery as the prolapse is already at stage 2 - 3 so has clearly been there for some time and not one of the specialists I have seen have managed to locate it which I find awfully strange given a year ago I have a cystoscopy with a urologist under general anesthetic and he did not see the prolapse. I also had one of the gynaes tell me that I didn’t have a prolapse last year!

I urge anyone who is not happy with what they are being told to pursue things themselves and find the right specialist.

I have never felt so low and depressed with all of this and it has had a huge impact on my life and had resulted in a huge loss of confidence.  coming out from all these doctors telling me that nothing has been wrong has made things worse not better because I have known in my heart that there has been a problem which seemingly everyone has missed!

Each doctor I have seen has written to say they cannot find anything and I have no idea why a urologist injected a steroid injection into my bladder last year as seemingly that was not necessary when the prolapse was and remains the underlying problem for all my symptoms. This particular specialist was rude and got annoyed at me being anxious and tearful. He clearly had no form of compassion whatsoever for me as a patient suffering such debilitating symptoms.

It has cost many thousands to see all of these doctors and not one of them has really tried to investigate this and work with me to help me which I find particularly disgraceful.  Even my gynecologist of 16 years did nothing to investigate this further when I told her close to 18 months ago I thought I had a prolapse.

I hope and pray that now I will finally be able to get somewhere with all this.

If you have a similar story or symptoms or need any help do not hesitate to drop me a line.

I would not wish on anyone what I have been through with all this!

 To conclude… if you are not happy with what you are being told please please please pursue it yourself as I did!

Without me having researched this uro-gynaecologist myself I would still be no further along the line. Atleast now I know this is not in my head!

 I could write a novel but about the healthcare I have received over the last 20 year period….  Maybe one day if I feel stronger and get past all this, I will… it is so important people are aware of things from a patients view who just wants help to get well...

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  • Posted

    Hi Lorelei I am so glad you have at last got this sorted. I am really fed up. In 1990 I had a hysterectomy and after couldn't pass urine. So for the next few years I was self catherterising then having different catheters in Inc a super pubic one into my belly which put me in hosp. Next I to had lots of bladder tests and a operation to stretch my bladder. Finally my consultant came up with the brain wave of making me a bladder from part of my bowel, this is called a neo bladder. Well it failed they sent me home for a day and I had pain in my shoulder, next in my chest then I passed out. My mum phoned the ambulance and I was told at the hosp don't move on that bed or you can die, they said I have a huge blood clot on my lung. So I had to stay in hosp. During this time when I got out of bed I would leave urine on the floor when I stood up. So I was scanned they told me the surgeons stitches had come undone that's why I was weeing all time. So my surgeon said I will do second operation, so I was given tablet make me drowsy and waited to go to theatre. I woke up back on the ward then I hemoraged. So all through the night I was given blood. Again operation 3 was booked the surgeon said he would pull up the stitches and I would be ok, but he missed a hole in my bladder so as he did this again urine leaked out. Finally before Xmas he booked theatre again the stoma nurses were sent to Mark up my scan, I said I'm not having a bag I won't my bladder fixing. But unfortunately my operation went into the night and they nearly lost me as couldn't stop the bleeding. I woke up 4 weeks later in icu with no bladder and a bloody stoma . I went mental. I was in hosp 7 months went in at 10 stone came out at 6 stone. So I think thats why this consultant won't help me. He examined me with camera said my prolapse was bad, then told me he could fix it keyhole etc but he won't. I said it's hanging out my bottom he replied it's not on the floor. Then I said so you won't help me, he said put it this way if you were rushed in as a matter of life or death it would be a different matter. I contacted pals but they were crap. So I've paid to have copies of my hosp records then I'm going to see someone private. It's 16 years on and I am a healthy fit 58 year old. So need help.

  • Posted

    I have just read your story!  Oh My goodness I cannot believe what you have been through..  Like you I have a very complex case and in all honesty even after my prolapse surgery I am still suffering with a large array of bladder and bowel related symptoms and my battle continues as does yours.  I cannot begin to imagine what you went through with the self cath and everything else after all those surgeries.  I honestly despair when it comes to doctors and consultants.  I had a CT brain scan mis-read 20 years ago telling me everything was clear when I had a giant tumour on my pituatory and it wasnt until a year later I got myself to the correct neurologist and hospital who could not believe my earlier scan had been mis- read and it was mis-read at a private hospital attached to a £2000 invoice which my insurer settled. I had to have head surrgery and radotherapy which may have been avoided had the radiographer read my scan correctly.I have suffered with my bladder extensively for many years and sadly continue to do so but know only too well how awful it is when you cannot relieve yourself to go atall as I was catheterised for 6 weeks after my prolapse surgery and the cath was blocked twice where I was rushed into hospital in the worst pain I can ever recall and on one of the occassions there was 1400ml stuck in my bladder and as cath was blocked I couldnt release it. I honestly thought I was going to die it was beyond horrendous.  I feel so sad to hear what you have also been through.  How an earth we get through all this is anyones guess.I am planning to see another uro gynae to check me out again and despair even thinking about it all again as like you have had countless procedures and surgeries and bladder stretches and cystoscopies..  The lady I chose for my prolapse surgery offered no form of aftercare or assistance once the operation had taken place and as was not available to me atall while I was catheterised and was pretty apalled at her communications to me.  She clearly had no time atall. I was so frightened that I nearly had a break down over it.. it was that bad.  If you would like to private message me I can give you my personal contact details incase you would like to ask me anything else.  I still struggle in a big way and am treated by 4 different hospitals.  It gets me very down and I am now 45 and have been suffering since age 23.  If there is anything I can do to help or advise I will...  Please call upon me.

    Not sure if Matron isstill attached to this site but she is an incredible lady who helped me very much aswell.  with only best wishes

  • Posted

    Hi i have had the same trouble I was constipated and pushed and something came out my vagina but when I stand up it goes back in the pressure I experience 24 hours a day is awful was rushed to hospital by ambulance as couldn't take anymore they treated me for constipation and was given 10 enimas since I have had every scan ct x-ray done seen 4 gyno 6 doctors and had a colonscopy and still nothing I really can't take anymore I took pictures of it and they refused to look someone please help me

  • Posted

    I have also been treated for constipation for the past 3yrs, had every laxative available given to me as none seemed to help, some made me feel worse, I had back pain as well and was told once the constipation was sorted the back pain would go. I had a colonoscopy 18mths ago, which shown I had some diverticulitis and told to avoid constipation again !!!   Backwards and forwards to GP again, told them I had the back pain/tingling and feeling as though something was pushing down as soon as I got up in the morning which wore off after about an hour but returned later in afternoon until I went to bed. I was then given meds for nerve pain, which didn't help much.  I was talking with a relative, who happens to be a retired nurse, about my problems and she asked me if I had my 'lady bits' checked out,  Anyway few weeks ago, back to the GP I go, I mention the conversation I had had, so she examined me and low and behold she said I have a rectocele prolapse. I asked her what next and she replied with I can refer you if you want. Hellooo, of course I want , I have put up with this so called 'constipation' for 3yrs, So my first hospital appointment is next month and it can't come quick enough. Just to say, I don't know if she pushed my prolapse back a bit when she examined me, but for about a week and a half afterwards I felt like a new woman.

    • Posted

      you poor thing I completely sympathise.  It really depends on what grade rectocele it is as they dont always operate.  They may suggest pelvic floor physio first prior to operating t really just depends.  I had to have something called an MR Proctogram test which told them the exact type and size of rectocele I had.  I also had a cystocele but I had the surgery in the hope it would all cure the pressure and bladder frequency which it didnt do and which I continue to suffer so I would only advise to listen to what they say in the first instance and dont rush to have the surgery unless you have explored every other avenue.  I also suffer with irritable bladder and irritable bowel and so it makes things even more difficult.  I have had 2 colonoscopies and neither showed anything major but like you just showed that I have mild diverticular disease which they thought was causing the left pain by the colon and also IBS to which they suggested hypnothrapy which sadly didnt help either I also suffer with stress and anxiety which I know doesnt help any but when you suffer so badly  as we do it is difficult to avoid stress unless one is made out of stone! sad  I have another colonoscopy in 4 weeks time just to double check everything. I dread every test and every doctor I see in all honesty especially given I have been through so much and continue to suffer with my bladder.  Its not an easy ride but there is a BIG positive for you in that they have found that you do have a rectocele which is most certainly contributing to your symptoms.  I hope you have some joy at your appt and that the person they are sending you to is helpful.  if you have any other questions or if I can help please let me know,  
    • Posted

      thank you for all that advise, I have been told to do pelvic floor exercises for now, thats when I  remember to do them rolleyes  I will definitely listen to and take in all options given to me. I have never considered myself an anxious person, but I find that whenever I have to walk anywhere I feel the pressure in my bottom, the tops of my legs feel heavy, then I feel as though I can't breath , after about 10 mins that wears off. So I am thinking now that I may be having a bit of a panic attack. What is getting me down is trying to find a laxative that doesn't cause me discomfort. I find fybogel bulks me up too much. I've been given cosmocol this time, but finding it hard to get the right dosage.

    • Posted

      Have you tried using psyllium husk atall?  that can help quite a bit. I have found it quite helpful but I would start with 1 capsule (you can take much more than that if you need to) and see how it works for you.  The other thing which was recommended to me is a ginger freeze dried drink in a sachet which is called gold killi ginger drink and it is added to boiled water and can also help with the constipation.  Its really hard to deal with it all and I really do understand.  Good you are doing the pelvic floor ex for now.  They will no doubt send you for the necessary tests to see which stage your rectocel is.  There are other options over and above surgery so just be mindful of that.  I suffer extreme anxiety with panic attacks and all and they come and go in different forms.  Bladder and Bowl problems can cause much stress so dont worry about that it is probably just your bodys way of dealing with what you are going through.  I hope my advice goes some way to help. I sympathise with you all the way and have endured a terribly difficult 3 years with all this myself and on it goes on.  
  • Posted

    Hi loreal I've being in terrible agony with pain up my bottom it'd like my poo gets stuck and it hurts iny other part and low back pain it's being going on nearly three years had a colonoscopy they said it my be a tear then had gel up bum they found a 2cm rectocele sometimes find it hard to walk or lift my grandkids I'm a wits end they don't seem to be doing anything my relationship is effected terrible as every single day wake up in agony have u any way u could advise me we're to go or what to do thank you

    • Posted

      sorry I thought I had responded to this note earlier but cannot find it.  Could you let me know if you rec my respnse atall..  sorry. if not will try send over again
  • Posted

    Lorelli...

    I don't know where to begin. But I surely hope that you are moving forward and making progress in your journey to health and happiness. What am impacting story you have. And it's clear by the comments that you've reached a lot of ladies in my position. I'm so devastated with life right now. I'm so defeated. And I haven't even endured half of what you have. (medically speaking) the worst part is that I truly hate myself for not being stronger, more determined, more motivated to get answers and to cure myself. I'm just so tired, Lorelli. I don't know what to do. I leave doctors offices and specialists in tears. I finally found a functional medicine doctor that I had to take a loan out to see, as my insurance won't cover it. And I finally had a breakthrough. So a little medical history I have been diagnosed with an autoimmune disease, with narcolepsy, IBS, hypothyroidism, depression, ptsd, anemia, I've had reoccurring uti's for all of my adult life and painful urination even when they say my urine is fine. I've had constipation for as long as I can remember. I actually feel the fecal matter moving into that area pressing into my vaginal wall every time I'm straining to pass a movement. I have pelvic pain almost constantly. It's become a norm. My gynos always tell me in in great shape. But there are times I'm so backed up I can't even get a tampon in. And when I finally get release, I'm appalled at how so much could come out of me. Even then, I feel left over later that simply won't come out, but instead the more I push the more I feel it going into that other area. Lately it's been worse. I just can't believe what my life has become. I'm such a happy and loving person that nobody understands how miserable I really am. I'm not giving up, but I'm barely trying anymore. I really hope you've made progress in your journey as I could use some inspiration. But apart from that, I just truly hope you are well.

    Best wishes,

    Your friend.

    • Posted

      Thank you for making contact.  What can I say other than I completely and utterly sympathise with you.  Just as you have, I have sat in more consultants rooms and hospitals that most people experience in a lifetime and each time end up in floods of tears.  I am still struggling in a big way with the main symptoms being my bladder (urgency pain pressure and frequency) and also my IBS with a constant big swollen bloated tummy and weight gain and sluggish bowels.  In addition from all the stress this has all caused me over such a lenghty period I am suffering anxiety and stress and many other stress related symptoms (hairloss - muscle pain - headaches - lethargy) in a very big way.  I also have iron deficiency and vitamin d deficiency.  Can I ask if you are in the UK? I am based in London UK but not sure if you are.   I have a complex history and can see from what you have written that you do too. Please let me know where you are at with all your issues and what your main current symptoms are at the moment?  I have seen urologists - uro gynaecologists - colorectal people - gastro people - gynaecologists... the list is absolutely endless - Had CT's MRI's ultra sounds - procedures such as cystoscopies and bladder stretch and injection nerve block into the bladder and even the prolapse surgery and my bladder is no better infact at the moment it is worse.  I absolutely despair just like you do so please know you are NOT alone.  I have been offered every anti depressent going and have been told it is all in my head and sent for hypnotherapy telling me all I have is a functional problem.  The NHS have tested my urine a million times and each time they rell me there is no infection and all is okay albeit I constantly feel like I am full of infection. I am due for a 3rd colonoscopy in a few weeks time to double check there is nothing wrong with my bowel or colon as I constantly feel something is pressing/pushing on my bladder and am worried they are missing something.  I am having to fight every step of the way just like you are.  I have just seen a professor for the first time who deals with women like us who have all these bladder/pelvic related symptoms and have suffered for years and had all investigations where nothing significant has been found.  He has a completely different take on things. He does not send a urine culture to any lab.. You arrive at his practice and provide a sample then and there which he sits and tests himself in front of you with a microscope.  I have only just seen him and immediately after looking at my urine through the microscope his words were "GOOD LORD HOW LONG HAVE YOU HAVE THIS - YOU HAVE A CHRONIC UTI"..  He has a different way of treating patients and has assisted many thousands woman like us which is why I am interested to learn if you are in the UK.  I will help in any way I can.  I too feel like my life has been taken away from me.  I have no energy have put a huge amount of weight on and feel low all the time as I worry about my bladder and rushing to the loo all the time.  I will help in whichever way I can.  It is utterly unfair we have to suffer this way.. Be in touch xxx

    • Posted

      I really no how you are feeling mine's been going on a few months and I feel i don't want to be here no more as every day is a struggle to get through and no one believes me I took video of mine happening when I cough or open my bowels my uthera is 4 times the size it should be I go a wee every 5 miniutes I have severe presure all say and night don't sleep stomach feel bloated and hurts constantly feel as if I have a water infection I was rushed to hosptal by ambulance on the 5 January as I was rolling about on floor blood pressure was 198 over 121 temp was 41 see a bowel surgeon he found nothing 4 gyne they found nothing 6 doctors still nothing had colonscopy ct scan 6 xrays vaginal scan s ultrasounds and still I'm on 36 pain killers a day and apparently it's in my head. And functional x then 4 weeks ago I see another doctor at my practice and he had been a gyne for 20 years before and he wanted to see my pic and said there is definitely something in your vaginal opening he think my bladder and bowels have prolasp I'm now waiting to go private to see a gyne this Wednesday I pray they find answers as if they don't I can't go on anymore 😭

    • Posted

      i too was at my wits end.

      6.5 years this has been going on.

      i dont know where to start.

      to c ut a long story short, my urologist prescribed a slow release muscle relaxant that has has given me my life back.

      i am on a 2 year waiting list (2 months to go) for a colonoscopy with a general anasthetic..my first colonoscopy was abandoned as was so painful and i'm too traumatised to endure that again.

      7 gynos said there ws nothing wrong.

      but i got to think about how they all examined me the same way.

      lying down with my legs in the stirrups.Rammed a metal device up me.

      years ago a gentle finger was good enough.

      i ask all you ladies this- wouldnt this cold metal device shove any prolapse back up?

      wouldn't an internal examination be best in a standing up position.?

      i had a look the other day using my super magnifying mirror and there is definitely something there.

      i can only move my bowels with the help of strong coffee.

      my bladder has gone through lots of different symptoms in the last 6 years and sex is so painful so i'm using ovestin ovules and doing the pelvic floor exercises.

      the pain running down my left pelvic area i'm thinking is the ligament under pressure.

      so how am i gonna tell these learned gentlemen what i've figured out for myself.

      they dont give a damn especially as the gynnos are all male where i live in spain.

      by the way now i've convinced myself whats wrong, i feel much happier and i hope my tablets keep working.!!

    • Posted

      sounds like you have really been through it too.  Can I ask which muscle relaxant they gave you which helped?  I am sure I have been offered the same one along the way but just wondered incase it was one I hadnt heard of.  Like you I have had countless tests and seen several people with all the horrid intrusive tests to be told there is nothing significant and that it is mostly in my head and a functional problem.  I am not sure half of these people know what they are talking about sadly sad  Really pleased you found some tabs to help. that is for sure a big STEP in the right direction  smile
  • Posted

    Hi I know these posts were a while ago just searching for symptoms happening to me I have just turned 50 😬 and having perimenapause issues and lots of health anxiety and been put back on setraline but my main concern is emptying bowels 2-3 times a day feeling a heavyness in that region and feeling it hasn’t emptied propley ! I had surgery 3 years ago for stress incontinance and doctor told me I had a prolapse and would perform hysterectomy if I wanted to but I didn’t want to at that time as I didn’t feel it was bad enough ! But now I have a bulge that comes down from my vagina when I’m having a bowel movement and I have to push it back up to empty my bowel ! Is this a symptom of rectocile ? Thanks if anyone replies 

    • Posted

      sorry not been back to you yet.  Only just back from a colonoscopy today and feeling bit weary as had to have some sedation.  Sorry to hear what you are going through.  It does sound like your symptoms may be related to a rectocele.  You need to be referred to a uro gynaecologist so that they can investigate properly with an MR proctogram and also some other tests.  The tests will determine whether you have a rectocele and also let you know the size and scale of the rectocele and whether you need surgery or not.  My rectocele was deemed a moderate sized one for which they said I should have surgery. In addition I also has a small size cystocele.  I also suffer with peri menapause with weight gain, tummy heaviness, sluggish bowel movements etc...  Assume you are with the NHS and if so you really need to push for someone to listen to you and refer you to the right department.  it doesnt help that all these doctors think its all in our heads and that we have no problem atall and are making the entire episode up which is most certainly not the case. I would not wish any of this on my worst enemy.. its changed me as a person so much and I have lost so much confidence so I really understand.  Dont worry, when you get to the right person they will be able to help you.  You are not alone. So many of us suffer with this and similar problems.
    • Posted

      Hi sorry u were feeling a bit weary I've to get the tube up again Thursday there giving me general anaesthetic my nerves are gone I was diagnosed with grade 2 rectocele two years ago and cysts it's took a toll on my life too hope you feel better shortly

    • Posted

      Hi lorries went in yesterday for EUA they said they banded hemorrhoidthe pain is really sore didn't mention my prolapse any idea how to ease the pain up there thanks

    • Posted

      sorry to hear you are in pain.  Did they say how long it would last?  I really dont know much about the banding as I have never personally had that done but I do know a few people who had it done who said that sitting on a rubber ring for a few weeks after really helped ease the pain.  The other thing you could try maybe is some acupuncture or acupressure as an alternative which help also.  These things are so difficult to deal with and really prevent us living with any form of normality. I just had a colonoscopy few days ago!  The prep was horrid and the procedure not pleasant.  They kept me waiting 2.5 hours before they even took me in and after a 32 hour fast and all that laxative prep it wasnt much fun atall.  Said they couldnt see anything but took biopsies which I have to wait around 4 weeks for the results.  If only we could wake up without our problems.  Really hope your pain eases up for you soon.  The other thing I have also heard is that sitting on an ice pack for piles can be really helpful so wonder if this may also aid your pain a little from the banding procedure.  I once years ago had a fissure (tear in the bowel) and had a procedure for that which was incredibly painful afterward so I fully sympathise.  xxx
    • Posted

      Thanks loreal I also had the colonoscopy had to drink that prep it was horrible after telling me it might be a fissure but still complained constantly with pain then put a gell up bum went through a tunnel had to try push the gell out couldn't they found a grade 2 rectocele and now this it's cruel and terrible what us woman have to go through thanks for your reply hope you get some answers soon so you can feel better

    • Posted

      the prep is just so disgusting!  I have had two colonoscopies before but they were the virtual colonoscopy which is not the same as the regular colonoscopy and had a bad experience both times as both times I had to pay privately which was very costly and on the second one the tube fell out whilst I was in the CT machine and there were no staff there so the nurse had to call someone from another floor to come and help me as they were short staffed!  I could honestly write a novel re NHS and private healthcare.  Some of the stories are truly unbelievable.  To not have someone present through a bowel CT scan whilst a tube is inserted pumping air in is unfathmable in its own right.  The only dept which seemed to work was their billing dept where there was lack of resource!  So this is the first colonoscopy (regular) I have had and the only time biopsies have been taken. Like you I am pretty much at the end of my thether with it and it quite literally has and continues to take over my entire existence.  I wish upon a star things would get better.  I am also about to start a long term treatment plan for my bladder to see if that can help which comes from the consultant I saw recently for the first time.  People dont generally understand and I think they just see me as a constant moaner so I tend to keep myself to myself.  I am telling you all this to let you know you are not alone and I feel the same that you and all these other poor ladies do.  Its so hard.  I am surpirsed they found your rectocele via the colonoscopy as I had to have a MR proctogram few years back which is where they located mine.  I also had a moderate grade II rectocele and a small cystocele but continue to suffer exactly as I did before the prolapse surgery which was traumatic to me in its own right and I picked someone to assist me who didnt provide any form of aftercare and charged my insurer for consultations I didnt have!  Fingers crossed for better times for us ahead sad I fully sympathise with you x

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