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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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  • cora65195
    cora65195 lorelli

    Posted

    Thank you for your post! I have recently been diagnosed with rectocele as I experienced some of the same symptoms. Luckily the gyn I saw is in a practice with a urogyn and I was able to meet with her right away. My question to you is did/do you have any lower pelvic pain and back pain? I have myself so worked up and worried over all of this that I find myself thinking I have colon cancer too. I realize I'm over thinking all of this but I can't get away from the fear.

  • susan48984
    susan48984 lorelli

    Posted

    Hi Lorelli

    I hope you don't mind me contacting you , but I was diagnosed with a rectocele a couple of years ago and was just told to make sure I keep myself free from constipation.

    Since Christmas last year Its been hurting me to wee. I have had 4 lots of antibiotics as well as a flexible cystoscopy which reealed bladder inflammation. The urologist just gave me more antibiotics and I was told to go back in 3 months.

    My Gp has been treating me with hormone cream for vaginal dryness.

    All of this and it still hurts to wee.

    I am 60 years old an hope I have not inherited my mum's complaint of Institial Cystitis.

    Is it possible the rectocele has caused all of this?

    I hope you are well.

    Sue

    • lorelli
      lorelli susan48984

      Posted

      Hi Sue,

      Not atall.  I am a bit useless with this site and broke my wrist badly so its been difficult for me to respond in a timely manner but its slowly improving.

      Sorry to hear you are going through all that too...  I wonder what stage your rectocele is?  Did they tell you atall?  Was it diagnosed with the MR Proctogram test?  

      With regards to your bladder I completely understand and sympathise.  The only reason I went ahead with the double prolapse surgery was in the hope it would aid my bladder symptoms which have hardly improved if I am too be honest.  I am slightly different to you in that it does not hurt me to wee but I have this huge pressure most of the time to go and feels like something is pushing on my bladder  They have diagnosed me with irritable bladder syndrome and also irritable bowel syndrome so I struggle alot too.  Did they actually locate that you have an infection?  I have had countless tests scans , flexible cystoscopies and even injections into the bladder and in all honesty nothing has helped very much...  Its odd because whenever my GP tests my urine it shows nothing, no proteinm blood or anything yet when I pay to go to a private urologist and he does a sepcial test called a 7 series test, they have located urea plasma and gardnerella infections although this has not been for some timme.  I have had countless antibiotics along the way.. I hope yours have gone some way to help you with your symptoms.  Are you London based atall?  Just wondering as a professor has been recommended to me who deals only with bladder problems and wondering whether he could help albeit I havent seen him myself yet.

      I think if it actually hurts you to wee then you should obtain a second opinion as there is nothing worse than that and it can be very painful.  Feel free to private message me anytime xx

  • Skip50
    Skip50 lorelli

    Posted

    Hi lorelli. I know ur PAIN. I've been at this for 6 years (had SYMPTOMS for 16!!) It's RUINED my life I've no confidence nobody believes me and chasing Drs consultants... Given anti depressants etc.. Money spend and wasted money I don't have!! Even family not believed me.. But I have now found out I have ANISMUS RECTOCELE and HORRENDOUS HEMMS due all struggling to go and my BLADDER a mess WI ongoing POOP problems...

    This post was two years ago I need help!! Please can you tell me if you managed to get a RECTOCELE repair and what type and has it worked.

    I know your desparation. It could have been me writing that post... I've even been laughed at by consultants and treated like SOMMAT on his his shoe by another.. I'm depressed and deaparate. I've no LIFE I barely leave the house. No supportive family.

    I hope you are well and happy and can confirm there is light at the end of this tunnel. I'm gonna be 50 shortly and this has ruined my life... I see no future if I can't get this sorted.

    Thank you and all the best

    • Funkelady
      Funkelady Skip50

      Posted

      If you can read my post to loralii, it gives my opinion on repairs. Feel free to hit me back with any questions.
  • Funkelady
    Funkelady lorelli

    Posted

    I would recommend finding a urogynecologist that can do vaginal repairs without using mesh. I had stage 3 uterine prolapse with cystocele & rectocele. After my first child was born I was told I had this but my doctor said to wait until I was done having children to correct. I waited too long because I didn'the want surgery, and ended up not vetting my doctor or the procedure he recommended, just trusted his judgement & scheduled a hysterectomy with TOT sling & vaginal wall repairs. That was 8 years ago, and I was otherwise in very good health. Fast forward 7 1/2 years...

    I have hashimoto's hypothyroidism

    Chronic fatigue

    Painful intercourse

    Tight feeling in pelvic region

    Pain in groin and Hip

    Pee 20+ times a day, with painful bladder spasms

    I could not find a doctor in my small city of Boise that could completely remove the source of my problems, the TOT sling! It had migrated into my bladder where the nerves are and my bladder was not happy about it:-)

    So I researched day after day until I found a doctor in California who was experienced in this procedure (very few are!) and spent tons of money traveling back & forth to seek treatment.

    My mesh was removed 2 weeks ago & it had shrunk to 1/2 it's size according to my surgeon. It was tethered to my obturator foramen and she had to cut through muscle to get to the arms to remove it. I am so relieved & felt an instant release after feeling like I had a cage inside me. I hope the inflammatory & auto immune issues go away in time, but could be long lasting.

    I urge you and anyone reading this to do your homework before trusting a doctor, even one you've known for years, when it comes to pelvic reconstruction procedures. Many doc's won't tell you that these synthetic repairs are not really permanent. In about 5-7 years they will need to be removed, and most of the doctors that put them in don't know how to remove them correctly, which leads to more problems. Be very weary of synthetic materials and opt for autologous or native tissue repairs or just old fashioned stitches.

    Feel free to respond if you have any questions.

    • lorelli
      lorelli Funkelady

      Posted

      sorry my dear only just seen your lenghty post!  I am pretty crap with the forum these days only due to my very busy schedule.  Sounds like you had a nightmare with the mesh.  I didnt have anything to do with the mesh!  I had double prolapse surgery for cystocele and rectocele but I have a friend who had the mesh fitted who has suffered a huge nightmare since and has really struggled.  In all honesty I have read so much about the mesh too and some peoples stories are upsetting as they seem to suffer alot.  I also have read that there are very few consultants who are versed in removing mesh as you correctly say and would absolutely agree that research needs to be done well prior to choosing a consultant.  Sadly many of these consultants advocate something they are simply not including the woman I chose....  I would say recommendation from someone would be the best way forward with choosing anyway rather than reading from their website their wonderful resume which may not infact be as it seems.  Hope things are a little better for you now. Sadly I still struggle with my bladder ... its not easy and I fully sympathise with any woman suffering.  Doctors dont take us seriously and they should as its a debilitating condition which takes over pretty much everything  sad 
  • maureen_65564
    maureen_65564 lorelli

    Posted

    OMG

    That's me right now!

    Months and months and Dr after Dr!

    No results and told I'm just crazy!

    I'm in a really bad medical area the community of medical staff around he is horrible and I don't know where to go what to do I've seen everybody I know to see and I don't feel well enough to even travel what does one do?

    • lorelli
      lorelli maureen_65564

      Posted

      sorry to hear you are suffering something similar.  It really is a nightmare which nobody else can possibly comprehend.  I have been made to feel as if I were crazy over many years by both the NHS and private healthcare both of which I could write a lengthy novel about...  Everyone is quick to offer anti depressents and not spend time trying to locate the actual problem which is very much frustrating.  Please private message me if you need any other information.....  I had my surgery close to 2 years ago and in truth I still have more o less the same problems with my bladder.  Its an ongoing struggle and I am seeing an array of doctors who are trying to help but thus far nobody has managed to move me to another and better place with all of this.  Sorry I havent responded until now. Hope you are feeling a little brighter and you have been able to obtain help somewhere
  • ester80818
    ester80818 lorelli

    Posted

    Did you have surgery? 
    • lorelli
      lorelli ester80818

      Posted

      I did have surgery in November 2015.  The entire process was a nightmare for me but that was mainly due to the consultant who was brash arrogant and did not provide any form of aftercare to me whilst I was catheterised for 6 weeks and had to be admitted back to hospital twice as an emergency.. Even then the consultant was not on hand to speak to me or help. I was utterly disgusted!  it left a very bitter taste with me BUT I also read many many positive stories and feel that my experience was for sure in the minority and due to the consultant rather than anything else.  I had the surgery mainly to see if it would improve my bladder symptoms which sadly are still here thus I continue to struggle.  Only thing I would suggest is that whomever you see you speak to in great detail and feel much assurance prior to surgery taking place if you choose that route so that you do not feel let down afterwards..  My consultant was a charmer until point of surgery where thereafter she was nowhere to be seen!  The story is endless but I have chosen to try and forget it and accept that I chose someone I shouldnt have!  let me know if I can help further
    • marie01757
      marie01757 lorelli

      Posted

      So sorry to hear this, unfortunately they do sometimes lose interest especially when you are a private patient its almost like miss selling,

      I do know of 2 doctors that come recommended, urogynaecologists

      Dr Mark Slack and possibly Dr Jonathan Broome

      Be careful of mesh Peeps.

    • marie01757
      marie01757 lorelli

      Posted

      Who was this female doctor? Maybe one to avoid. For sure .Any particular hospital, if you cannot say for not wanting to upset them. Thanks for your input. Jut really feel for you cos your still having these problems.

      Please keep trying though. Don't ever give up!

       

    • lorelli
      lorelli marie01757

      Posted

      I dont think it will allow me to mention her on here somehow. Maybe if you Pmessage me I can send you the data .. kindly
  • mary651
    mary651 lorelli

    Posted

    I had an Interstim Therapy Implant in November of 2016 with good success.  However in February of this year I got  a Grade 2 Cystocele .  I don't think it is related to the Interstim but rather heavy lifting.  

    I had pelvic floor repair for the Cystocele & sling tightened (from 2007) on June 14, 2017.  I had hoped my overactive bladder would improve but it hasn't.  

    The past month I have had a sense of fullness & irritation in my rectal area.  That is not the worst of it.  I have had to manually extract my bowel movements- like soft rocks.  Sorry for the graphic nature of this post.  I now feel I have a rectocele as I there is a sense of internal bulge.  

    I am frustrated as I just had surgery for a cystocele in June, which took 4 months to get scheduled.  I am in an HMO so the process is lengthy.  

    What doctor does one see to get a diagnosis- after first seeing my primary care physician?

    Thanks for your help!

    • marie01757
      marie01757 mary651

      Posted

      Have you tried Dr Ccarolynne Vaisey at st Marks Hospital for rectocele advise
    • lorelli
      lorelli mary651

      Posted

      I think your best bet is to locate a good and sound uro gynae.  I wish I had one to pass over to you but the one I used left me in despair so I cannot recommend  Matron via this site may be able to assist.  She is a true credit to this forum and provided more care to me than the staff I was paying at the hospital did.  I am sorry I cannot help further this time.  kindly
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