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

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lorelli
lorelli

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...

9 likes, 154 replies

154 Replies

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  • lucy45503
    lucy45503 lorelli

    Posted

    I to have something that's comes out my vagina when I sit on the toilet and when I open my bowels been going on for 5 months now servere pressure to like I'm in labour seen 4 gyno a surgeon had ct scan aultosounds internal scans and still they find nothing they refuse to see my pictures and videos of it in now thinking it's in my head they said it's a functional problem so sent me for physio lol lol um now booked in to see a private gyne Wednesday as can't take it anymore I'm depressed fed up gained weight and can't cope anymore

    • phyl_40063
      phyl_40063 lucy45503

      Posted

      Don't know why this happens so much where women have what appears to be an obvious prolapse and NHS consultants don't seem to be able to diagnose the condition, it seems that many have to go private to get the condition recognised. Those that. Ant afford the private diagnosis are being left to cope with the prolapse which eventually gets to point where impossiable to live any kind of life. 

              What is going on within the NHS?

                 X

    • martina79010
      martina79010 phyl_40063

      Posted

      I think the NHS is a disgrace every morning I get up I've a burning in the end of my back pain constantly up bum pain in my groin area and down my legs have A 2cm rectocele and there not doing anything don't know how much more I can take was back at docs last Friday told me to ring the day ward tell them I'm 2years waiting on a procedure to be done they told me if I'm in that much pain go to a and é then rang NHS she was very nice gave me a no for a girl to see if I can get done private but no answer don't know if I can take much more off this doctors are a joke having all of us think it's in our heads I wonder would they go around with this problem theey wouldn't

    • lorelli
      lorelli phyl_40063

      Posted

      The NHS is going downhill fast!  It is very much worrying.  Sadly the resource is diminishing resulting in only matters which they deem absolutely necessary to be dealt with on a priority basis.  Everyone else but being held up sitting on wait lists and with the administration at the NHS being at an all time low I fail to see how this will ever sustain or get better..  Its very sad and I totally agree that people should not be forced to utilise private healthcare but how can women like us possibly sit day after day and try to deal with this?  GPs do not take us seriously and over the years I have been told 1) its all in my head  2) my problems are functional and use hypnotherapy  3) to take anti-depressents 4) to stope stressing 5) to lose eight... the list is endless.    Do thee NHS think we enjoy feeling this way and having to visit them all the time? Do they not think that getting us to the correct consultant in the nick of time would be far more productive than us booking a million appts and crying in our GPs office when they have nothing to offer?  Its a sad one. I fear for the NHS and what will remain.  I agree with all you say 100%.  I have recently had to pay to see a professor who assists woman in despair like me .  I have no choice in the matter as the NHS are holding a wait list for this consultant which would render me able to see him in around 15 year s time sad
  • martina79010
    martina79010 lorelli

    Posted

    Hi I didn't get ur reply any how don't know how much more I can take of this constantly feel bowels not empty ed burning lower back now affecting my legs when walking my ground hurts too the NHS to ring a girl to try get this sorted but no answer as usual going around in pain for two years and if they think it's in people's head there very wrong doctors must be afraid to fix rectocele I can't even go toilet I'm in agony they keep putting it down to diet and constipation joke can't even play with my gran kids I do be very sore around all my private parts I wish this will just go away I'm only 45 nearly 46

    • lorelli
      lorelli martina79010

      Posted

      sorry not gotten back to you.  Had busy few days and also not been too well.  So sorry you are going through all this. I completely understand how awful it is and how much despair you must be in.  Please go back to your GP and ask them to refer you to a uro gynaecologist so that you can get this looked at properly. If the wait list is too long and you are in too much pain then maybe see if you can contact one of the uro gynaes and either see them privately or speak to their secretary to tell them how much pain you are in and see if there is any way they can push you through a bit quicker on the NHS.  The problem with the NHS right now is across the board and I know so many people who are stuck on wait lists to see consultants which could take months and I know only too well that when in pain with this sort of problem you need to see someone as soon as possible. I even went to accident and emergency a few times where they could do nothing for me, told me it was all down to constipation and told me to go back to my GP so its a viscious circle which doesnt help any.  I also get lower back pain and pain at my left hip area and sciatica down my left leg and it is very very painful.  My tummy also constantly bloated and I have gained weight too. I feel that my body has changed so much and I find it all too upsetting.  I had prolapse surgery 3 years ago but sadly still have my problems so it didnt do much for me but then my main symptoms were bladder related with constant weeing and pressure on bladder so they thought it may help to have prolapse surgery but sadly it made only a little difference in the beginning but now things are as they were.  Have you tried Psyillim Husk tablets atall?  I used to take them and they did help quite a bit. I took the SOLGAR ones and they helped to regulate things a bit better so wondering if they could help you in any way.  I was also told to take probiotics daily and I found the best ones were the VSL3 sachets - I took one daily as they are supposed to ease and aid the gut and put all the good bacteria back in.  Another remedy was referred as Braggs apple cider vinegar and I absolutely hate vinegar but I did try this which helped a little.  I think the main thing for you to is try and push your GP to refer you to the correct department so they can investigate further.  Hope this goes some way to help. I feel your pain as I have suffered this for so very long that I cannot remember a time without it. Its just not fair.  if I can help in any way please let me know xx

  • tearydawn
    tearydawn lorelli

    Posted

    I know this is a 3 year old post, but look into IC.  Interstitial cystitis. I too have all the same pains as well as had a rectocyle and think it's back again but a lot of docs are unfamiliar with IC and it hurts, feels like a bladder infection without the infection.  Just another thought if you're still struggling.  Take care. 

    • lorelli
      lorelli tearydawn

      Posted

      thank you for your note..  I have seen so many consultants along the way, two of whom have categorically told me that I dont have IC even though I have suggested this to them. I am beginning to realise that unless we research this ourselves and drive our doctors for the necessary tests, nothing actually gets done other than paying all these people their hearty invoices for not much back in return sad  It is a sad reality.  I have recently seen a professor who works differently to the others or so I am told who actually tests the unspun urine sample himself and he immediately found that I have a chronic UTI for which he has set a programme of long term antibiotics with another tablet introduced after 3 weeks so we will see what happens.  He helps many women who have exhausted all other options either via the NHS or through the private sector. I have kind of lost faith in it all if I am too be honest and this bladder problem is quite literally the bain of my life.  I havent slept through a night for as long as I can remember.  Can I ask what you take for your bladder symptoms?  Hope they have been able to help you in some way.  Thanks again, I am much grateful.
    • tearydawn
      tearydawn lorelli

      Posted

      Unfortunately due to other conditions, I can't take any of the meds for it.  I've heard D-mannose is suppose to be helpful but the supplements are just too large for me to swallow.  Occasionally I take a bladder pain pill that turns the urine orange and it helps my painful days but we're not suppose to take it often.  There are two surgical procedures I've tried with some relief but only lasted 8 months the first time and less the second.  Others have more success.  It's a hydro-distillation with a DMSO or DSMO treatment.   Many doctors are ill informed of this condition and it's a diagnosis of exclusion as well.  Take care and I hope you can find some relief. 

  • welshgirl67
    welshgirl67 lorelli

    Posted

    This is a very old post!!
    • maureen_65564
      maureen_65564 welshgirl67

      Posted

      Welsh girl 67. Can I ask if you're going through the same thing I see that you tried to contact the author of this post yourself so I'm assuming that you also have a rectocele or some sort of organ prolapse! What was written hear sounds exactly like me if you are going through this I'd like to know if you've gotten any help and would like to know if you would contact me too!

    • welshgirl67
      welshgirl67 maureen_65564

      Posted

      Hi maireen

      No i didnt have a rectocele..i had anterior repair snd tvh for prolspse uterus.

      I dont have sny issue really only a weird looking entrsnce to back wall but i think its just part of my normal anatomy. I have booked an appointment anyway with my proffessor consultant.. i have 100% faith in him he would pick ip any issues but i still worry lol.

      I do feel low in the front near urethra but until i see him i dont know.. he did say that he didnt think anything up toward would of happened in the meantime so to book for may 14th. Hun these surgeries really play havoc with our emotions..xxx

    • tearydawn
      tearydawn maureen_65564

      Posted

      Have you seen a urologist?  That's who diagnosed my IC.  I think a typical gyn or gastrologist could look for the rectocele unless it's a bladder prolapse then again, urologist is a good bet.  I had a hydro distillation to look for IC but that was about 10 years after it was first mentioned by a specialist as what he thought I had. They really don't seem to know much and it's diagnosis of exclusion.  There is no definitive test for it. There can be ulcerations and petchaei in the bladder but some don't have that.  Just symptoms of pain, bladder spasms, painful sex, feels like a uti but no infection but many get repeated uti's as well.  I did years ago or maybe they just treated me a lot for it without having one.  Memory is foggy.  Take care. 

      ?Welshgirl67, I was surprised she did indeed answer. wink 

  • maureen_65564
    maureen_65564 lorelli

    Posted

    Hey lorelli. Every word of what you wrote describes me and my life for the last 3 years myself! I'm still suffering but I now have an appointment with a urogynecologist 2 weeks from now! What did you do to survive through all of this and tell you got a real diagnosis? I'm just hoping you'll see this because I know this is 3 years old and I wonder how you're getting along now? If you would contact me I would really appreciate it if you see this!

    • lorelli
      lorelli maureen_65564

      Posted

      so pleased you are set to see a uro gynae.. that is great news and really hope they are able to help you.  I continue to suffer in a big way but had a very complex medical history which may well be contributing to my bladder symptoms in a big way and it all needs to be re checked with an endocrinologist and the one I am under is pretty useless and follows up on nothing so as ever I am having to pay for a second opinion via my private healthcare .. This endo has been referred to meby my GP and I am praying he can help as I have seen more people and been prodded about my more people that most people do in a lifetime and I detest every minute of explaining this to people infact spend much of my time in tears So sorry you are going through it all too.  I absolutely sympathise.  If you prefer you can always private message me ..  You may have some questions about the uro gynae and I will try to help wherever I can albeit the uro gynae I chose didnt provide much support to me either  Having said that I did have a rectocele and cystocele and had the surgery so will help advise wherever I can..  Sadly my bladder problems were not fixed from the prolpase surgery but I dont think and never did think that it would remedy the long standing problem I have had.. I was merely clutching at straws..  Hope to hear from you and sending you all good luck for seeing the uro gynae.  I am being told by friends and family to see this new endo with fresh eyes and will try my best but its not so easy!  xxx
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