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...
9 likes, 154 replies
Penswift lorelli
Posted
I have been going through the same and still am. Nobody can feel what I can feel internally. Problem being lithotomy examination is always carried out. Needs to be a standing examination. All very complex and personal. I really would like to know who you saw who diagnosed your issues if you're allowed to say or give me a clue.
lorelli Penswift
Posted
Matron is probably the best person to help with your quest. Sorry I cannot help this time with a referral x
lisa26630 lorelli
Posted
I am not sure whether you will receive this response as it has been a year since you posted. I am very much in your same situation. Not a person that normally replies but i felt compelled to reach out. I have been to so many specialists over the past year and am still not receiving a proper diagnosis. I have had many of the same tests and also have had antidepressants pushed at me. I am interested in fixing what is wrong with my bladder. If they could give me a solution i am sure the anxiety/depression would disappear. Just curious to find out if you had any success with the physio (which i find way to intimate for my liking
). Have you received any sucessfull treatment?
lorelli lisa26630
Posted
KGAL lorelli
Posted
paula51635 lorelli
Posted
I'm also suffering from lower back pains, feels bloated, gaining weight, can a rectocele really making u picked up weight???? I tried everything to loose the weight but nothing. I'm constantly tired. Plse help with information.
gill69905 lorelli
Posted
Hi Lorelli,
It is so good to hear at last of someone like myself who has suffered for most of my life with recurrent uti, bladder pain and I know how very debilitating and depressed it can make you. I am so pleased you have found an answer and you have now given me the strength to seek yet another consultant and make sure he/she is a Uro-Dynamic specialist. I have had countless courses of anti biotics, kidney scans, Cystoscopies and am at my wits end! I too wonder whether my problem could be to do with rectocele as I had 3 very large babies and now feel my bowel bulging on to my vaginal wall. The one thing that seems to trigger my utis mostly is sex and despite being exceptionally clean and drinking before?after and emptying my bladder straight away (really romantic!) it usually starts within 48 hrs and the pain is unbearable and I pass blood. I hope one day to be rid of this ghastly condition which is totally underestimated by most Doctors
jenny2003 lorelli
Posted
Lorelli - thank u so much for writing what u have written. My last 2 year journey (which started in 1995) has been the worst most horrendous nightmare of events that it has driven me demented & depressed & my quality of life has suffered. You have given me hope that not only am I not alone, but I am not going mad or being a nuisance from being a rational capable intelligent person. My file at home has grown ! The NHS administration beggars belief & after finally involving PALS & insisting on changing consultants I am finally getting a proper diagnosis both with my vault prolapse (not even previously examined altho protruding) & my rectocele with grade 3 enterocele. All of course delayed for months on end despite me chasing by test & xray / proctor am request forms being lost or not processed by admin staff !! Now of course my 18 week wait finally for major surgery complicated by whether both should be done at once is overrun to 6 months !! Even still I wait for the date - very difficult to get ANY info.....
I cannot thank you enough for sharing or add much more exempt to say to anyone NOT to give up but to insist on seeing a different consultant / transferring to a different hospital etc until you are satisfied with what you are hearing & that correct tests etc have been done. DON'T give up - I nearly did.....
lorelli jenny2003
Posted
my apologies for not having responded sooner I have had a busy few weeks.I am sorry that you too have endured such a gruelling time. I am also so very happy to hear that you insisted on a different consultant. I am afraid I have lost much faith since having my prolapse surgery and am still suffering with anxiety following all I went through with the uro-gynae who had no understanding of how to provide any form of aftercare and got annoyed with me as I was with catheter in situ for over 6 weeks if I dared contact her!. I hope they have managed to sort the operation date for you and that you feel better knowing what lies ahead. This has been an ongoing struggle for me for many years and the person with whom I put my faith let me down in a very big way and I am paying a heavy price for that. My bladder isn’t as bad as it was but the problem has not been completely resolved either and they now tell me I have IBS and also irritable bladder syndrome for which they have started me on new medication called BETMIGA which I take each evening so I am trying that out to see what if anything it can bring to form some relief. The other thing they suggest is injections into the bladder which I have no desire to try! I don’t suppose all the stress helps either but as I am sure you have, I have been prodded about with all these tests in places people should not have to be prodded
and its not atall easy to deal with. I have lost count of the MRI/CT/Ultra Sounds/Proctograms/Uro/dynamics/Cystoscopies I have had etc…
As for the NHS admin.. let me tell you that an executive EX PA of 18 years for a very large corporation, I can safely say that the administration is the worst it has ever been and of the lowest calibre. I have had so many follow up letters with errors to include spelling mistakes, incorrect diagnosis, wrong prescriptions and even had a letter recently explaining I had endured some surgery which I haven’t actually had (they forgot to mention the actual surgery I had endured and clearly mixed me up with another patient) and the list goes on. I also got sent ultra sound results and follow up diagnosis for another patient. All I can say is that if you think NHS admin is bad, you would not believe what private healthcare delivers.. it is in no way better. It makes me realise how good I was at my own job when I deal with all these people.
Administration and secretarial support is the port of call into any establishment and effectively what makes it all work and with the level we currently have in place it is no surprise we are all at our wits end with it. I spend hours upon hours chasing up appts/scans/letters/test results etc.. Last week I received copies of letters which had been sent to my GP stating I had been a no show to two separate appts at two diff hospitals and that they had discharged me from both units. I didn’t attend as they had written to me by letter and sent text messages to my phone to cancel the appts yet when I took it up with them, they claimed their dept never sends text messages or letters and that I was a no show and that I had cost the NHS £160 per no show appt. I had to email them pictures of the text messages their dept had sent me to cancel the appts and only after that did I receive another letter from them apologising and allowing back into their depts… Can you imagine!!!!.. It is beyond hopeless and I absolutely despair for what lies ahead so my voice to you my dear is to keep pushing and fighting because you will get there but only if you put the time and effort in. Sadly we don’t have a good support structure in place and however awful and painful our problems are we are just a number on a spreadsheet to these individuals who are there to assist! I literally chase up everything but if I didn’t,they would have no regard whatsoever for me as a patient with a complex history. Please know you can write to me anytime and I will always try to help. I really hope the new consultant will take you to a new level with all of this and that the operation will be successful. There are so many great stories too and I truly believe it is all about the person you choose being there to help and assist through it all. You will come through shining and feel much better 😊 Matron on this site is a wonderful credit! She is basically a caring well versed compassionate lady who really knows her stuff and is there is help. I wish upon a star I would have had someone like her on the ward helping me instead of the 1 nurse who was running between 16 private patients all pressing their bells following their surgery. thinking of you Lorelli
phyl_40063 lorelli
Posted
Hi Lorelli,
I know their will be lots of women out there who appreciate you're message.
I am so happy that you finally got a diagnosis and agree that it definitely should not have taken so long.
My hubby has just been diagnosed with possiable pituitary non malignant tumour. Lots of symptoms, low testosterone, high prolactin level 4, eyelid swollen, headaches, erectile dysfunction. Only picked up in bloods after going to GP with chest infection and mentioned not feeling well over past few years.
Going for MRI but hopefully will be able to control things with hormones, definitely not wanting surgery.
Hopefully things will get better for you now you have diagnosis, ask for estriol to help thicken your internal walls and aid any future repair surgery.
Take care,
Phyl x
lorelli phyl_40063
Posted
Sorry to hear about your husbands pituatory tumour. I wonder if he has what I had which was a pituatory adenoma (benign). ine was giant by the time they got to it after having had the CT scan misread the first time round. One of the symptoms I also had was a raised prolactin level. Periods stopped, skin changed, weight gain and the last symptom was swelling in the head and headaches.. The MRI should reflect things clearly .. I hope you are in the care of someone good. Not sure if you are in London but queens square hospital for neurology has been fantastic for me all the way through and I thoroughly recommend them. They may be able to manage the tumour with meds to shrink it or keep it under control. The main thing is that they have located it which atleast can put your minds at rest a little. If you need any help or want to private message me anytime please feel free. I am well versed in that area given what I went through myself.
I was given that cream by the uro gynae a while back but another gynae advised me against using it.. Everyone has their different take on things i guess
Hope all goes well x
phyl_40063 lorelli
Posted
Hi lorelli
Thank you for you're reply appreciate your offer to PM whenever.
He is awaiting all results right now and hopefully once they get the mess right all functions will be restored.
It's not much fun when either one or the other is having problems.
My last repair was over a year ago and feel it's been a good strong repaid this time and finally feels as near normal as it's going to get, so a bit disappointing that hubby now unable to perform.
I suppose all these things come with age.
Hope everything settles down soon on your new meds.
Phyl x
judith28895 lorelli
Posted
I know your post was a long time ago and I hope you are in a much better place. I, too have had missed bowel protruding into vagina, most likely for 13 years! Alss diagnosed with IBS. I just wondered if you had chronic headaches that were caused by the pelvic organ prolapse?
With all best wishes
Judith
ester80818 lorelli
Posted
BrendaJayne lorelli
Posted
Hi Lorelli.
I was diagnosed a couple of years ago now with a rectocele but this was only because I diagnosed myself and when I presented to my GP what I thought I had I was sent for an X-ray and it was confirmed.
However I was advised surgery was not recommended at it wasn't successful and only lasted 6 months.
Today I am in absolute agony on a daily basis and often climb the walls with pain. Personally I don't think child birth was this bad. I'm at the end of my tether. Hope your surgery goes well.
cookienz BrendaJayne
Posted
BrendaJayne cookienz
Posted