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

Posted , 54 users are following.

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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  • angela97711
    angela97711 lorelli

    Posted

    I have been and going through the same as you on the Gold Coast Australia.  I very distressed, depressed and exhausted from it all.  I seem to have days where I feel very unwell usually from a UTI.  I have a retrocyle like you plus sévère haemorroids.  I should have bought shares in toilet paper.  I cannot believe the amount I go through.  I am exhausted from it all and cross with the Drs I have been seeing for these problems?   Angela

  • lynn03436
    lynn03436 lorelli

    Posted

    Wow sorry you had to endure all that glad you stuck to guns and found the right dr and now you can get it done and live a normal life . I just had my surgery a little over week ago my obgyn is the one who diagnosis me i felt a bulge in my vagina called them and that's what they said i had a rectalceil prolapse it isn't a easy surgery it's a long recovery just do what the dr tells you to do and make sure you have plenty of help you can't do any heavy lifting what so ever you want this to work well i wish you the best

  • edith82608
    edith82608 lorelli

    Posted

    I see this post is from 3 yrs ago, but I was wondering if you had the surgery and how you feel now. I have many of the symptoms you mentioned and I’m at my wits end as well. I’m doing my own research in hopes that I make the right decision. I’m tired, depressed and in constant pain. I too had to suggest that I thought I had rectocelle. No Dr ever tried to figure it out, even though all the symptoms were there. I’d appreciate any advice.
    • welshgirl67
      welshgirl67 edith82608

      Posted

      Edith

      Have you seen a urogynacologist? If not go to.your doctor and asked to be referred to.one.

      Sometimes we have to tell theses doctors what we think.it is,I did and researched my consultant in the area.

      I did travel 4 hours to see my proff for tvh and anterior in January.

      My back wall is playing up now which I thought would ,movicol keeps it sane for now but can't stand the feeling when I need a poo.

      I suggest you get the help you deserve hun and get it sorted.x

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