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
marie01757 lorelli
Posted
I have similar problems and wonder if you could give me her name and any recent updates on your progress with this more enlightened doctor,,,,
thanks x
lorelli marie01757
Posted
Everyone basically puts my problems down to an irritable bladder coupled with IBS (irritable bowel) which I find nothing less than infuriating. They all tell me to rid the stress but I am unsure how any woman could suffer these symptoms which take over day to day life without stress coming in the way. I dont think doctors appreciate the extent of what this can do to a woman with all its associated problems... I heard of another professor and left a message for his secretary 6 weeks ago and am still waiting to hear back from her so I am wondering what sort of service he could offer if he secretary has not even provided the courtesy of following up and responding to me. I could literally write an epic novel regarding the treatment i have had both via the NHS and via PRIVATE HEALTH! It is mind rendering as I am sure it has been for many others. You can always private message me if you need further info or details pertaining to my issues and prolapse surgery xx
ARAR4 lorelli
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in regards to the secretary, the rule of thumb is try three times! I always make sure me or my wife follows up on everything from messages to documents sent over from another facility. These people need to have pressure kept on them for them to make a move. It's really sad but at least we can do something about it. They are liable for reasonable things, like returning phone calls.
valerie16973 lorelli
Posted
i have just come acrossed this forum, and read your journey, and can not believe I am going through the same. GP no help, had two procedures already at hospital, outcome a small rectocele, I am now waiting for a appointment with a pysio therapist , and also a appointment with a gynaecolgist, I have been made aware of the long wait, I would like to know if any body had anything to help with this problem whilst waiting, I play golf, but realize this only makes it worst, also walking to much and standing the same.
i am so interested in this urogynicolagist
ARAR4 lorelli
Posted
I came here on behalf of my wife who has a history of Crohn's and IBS, but over the last few years she has developed a neuropathic pain that's chronic but her pain therapy program at the Mayo Clinic in Rochester, MN has helped with that; eventually diagnosed with fibromyalgia at Mayo. During our time there she saw a GI and was also diagnosed with pelvic floor dysfunction after finding stool packed high in her abdomen, which was not a surprise to me because she hasn't had what I would call a healthy bowel movement in years. I think the neuropathy developed from this. She also had developed that "beer belly". We thought it was just the Lyrica or something. Luckily her pain management not only helped with pain but also took her off many meds. She is doing much better in the brain fog department, isnt dependent on controlled drugs like Klonopin, and has shed some considerable weight (we still think Lyrica heavily contributed to that weight gain). She was also able to incorporate exercises and cook more.
We were set up with a PT that specializes in female-dominated conditions, such as pelvic floor dysfunction and other bladder-related issues. (I don't think I've heard of a uro-gynae until now.)
Then after a few sessions, she started feeling nauseas more often. Now, instead of chronic pain, chronic nausea and accute stomach pains have become the focus. Our theory is that what our PT (plus excerise, movement, better eating, gluten-free) has been doing is working, but only to a certain extent. We believe that her body is in super "get this literal crap out of me" mode and is trying, but can't. Thus the neasua and pain.
Furthermore upon doing research and talking to more doctors than I can count on both hands, we're fairly confident in the theory that, in her case anyway, her pelvic floor issue is a result of desensitization, which would have been brought on by the chronic bathrrom issues she's had since seven years old, including Crohn's.
At this point we just have to wait and see how her pelvic floor PT treatments go, and then see when we get into Mayo's extensive 2-3 week pelvic floor program, which we have been on the waiting list for.
So as of now, we're at a loss, but are going to keep holding our trusted doctors responsible for getting curious and figuring something out. It's a relatively new field so I'm confident that out of everything that's yet to be learned, the answer's there.
PS...I have also been looking into the gut microbiome. It's a far more popular area of study today because of our technology and what we've learned regarding the importance of our gut flora. There's trillions of bacteria necessary for our gut to properly operate yet we only conventially understand a small fraction of it. The University of Maryland, for example, has had gorundbreaking studies done in this area. Check it out. Your GI should know of a test or two that you can take; they usually involve blowing into a tube, like a breathalizer or something.
vicki14379 lorelli
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lorelli vicki14379
Posted
maureen_65564 lorelli
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Thanks for the input yeah I see that you're still here I've asked you several times on here questions pretty much repeating myself cuz I still not gotten any answers and I'm happy with!
I literally suffer physically mentally everyday 24/7!
One would think in this day and age that things like this could be diagnosed and treated find out just shows how women aren't a priority in the world yet!
maureen_65564 lorelli
Posted
OMG I am going through that right now!
I finally after 3 years of suffering and going through several doctors (every ologist out there) only to finally find a gastroenterologist surgeon who said I have a rectocele but didn't make any plants or efforts to help me get this repaired nothing nada for treatment or surgery or anything I mean misery I am constipated all the time I have pain in my pelvic area 24/7 it keeps me awake!
I have been around such bad Medical and I don't know what to do from here I know I need to have this repaired but I can't get anybody to take me serious what do I do?
I know this is from 2015 this is actually the end of 2017 so I don't know if you'll even see this but if you do please respond to this I would love to know your outcome!
maureen_65564 lorelli
Posted
If I didn't know better I'd swear you just wrote everything about ME!
I have gone to exactly everything that you've gone through and I still haven't gotten it resolved.
Unfortunately it's just days before Christmas 2017 and my doctor is from Canada and he went home to Alberta through the holidays into the end of January.
So I have to suffer again needlessly endlessly it seems like until I can finally get some real true medical help!
He was the last one on my list and he is a gastroenterologist / surgeon he found that I have a rectocele at the very least and hopefully I will get something done here in January!
How are you coming along I know this is an old old post but if you still get emails and check on you post I'd like to know how you doing!
Thanks for listening if you're there lorelli!
maureen_65564 lorelli
Posted
If I didn't know better I'd swear you just wrote everything about ME!
I have gone to exactly everything that you've gone through and I still haven't gotten it resolved.
Unfortunately it's just days before Christmas 2017 and my doctor is from Canada and he went home to Alberta through the holidays into the end of January.
So I have to suffer again needlessly endlessly it seems like until I can finally get some real true medical help!
He was the last one on my list and he is a gastroenterologist / surgeon he found that I have a rectocele at the very least and hopefully I will get something done here in January!
How are you coming along I know this is an old old post but if you still get emails and check on you post I'd like to know how you doing!
Thanks for listening if you're there lorelli!
lorelli maureen_65564
Posted
I fully sympathise with anyone going through this.
Wishing you happy holidays in the hope our worries and woes and pains will ease up for 2018 xxx
maureen_65564 lorelli
Posted
I've taken that very same road and it is taking longer than 2 years!
Mine is going on 5 and I want as far as being tested for MS along with a plethora of other very expensive ignorant testing!
Gastroenterologist who should have caught this rectorseal made my issues worse with all the prescribed laxative preps... 3 in two weeks!
Only to find out he did this after his own curiosity and not what was best for me... Find out later that this barium enema crap that he put me through could have been avoided by just taking the simple x-ray if he was looking for a blockage!
I'm so sick to death with Western medicine and there making ask their guinea pigs and there are educated guesses! If I sound bitter it's because I am!
I was told so many times that all I have is anxiety and to take a pill and shut up... I hope you still follow this thread because I'd like to speak to you!
Give you my private email if you read this!
kerri62191 lorelli
Posted
This sounds so much like me and causing me anxiety at work as if briefings quieter rooms my stomach makes such loud noises I'm so embarrassed it's effecting me going to work on these days. Eating in the staff room is bad and my stomach starts. Sometimes I daren't get up because of has I'm frightened I'll pass wind loudly. I get so constipated and sometime it's sat there not so sound awful I've felt so umcoffortable I've had to help it out. Is this something you experience too because I think this is happening to me . Sometimes I eat a meal and have to undo my bra because it's pushing up my tummy is so bloated I'm going to the doctors but if I go thinking it's this I may cut so many corners. Also I get pains from under my breast none right down my left side then lower left side of abdomen and sometimes I have to run to the toilet too. I was diagnosed with in a years ago but this is something different to have someone have the same thing it would really help
amanda26306 lorelli
Posted
I was just wondering who was your urogynaecologist? I am experiencing the same problem. Thank you