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
chica lorelli
Posted
hows it going?
are scheduled for operation?
how you feeling?
i've been quiet on these posts as i had 2 tests end of feb.
barium enema and ultrasound without contrast.
my appointment for results are this thursday.
yes, 4 months wait for results.
the reason i'm so laid back about this is that i have been taking the medications that help my pains.
vitamin B complex and triptosol.
i guess because this last med is a sedative that also helps pain, i am less frantic .
i said i wouldnt take these meds as i remember back in the 80's docs were handing them out like smarties. my mother was like a zombie on them.
but i'm cool at the moment and they have taken the stress off my relationship for one thing.
i have no illusions that my specialist visit on thursday will be enlightening.
i am thankful its at the time of the day when i can get an interpretor.
the one thing that is niggling me i8s that when, like you, i got my own MRI done, i never was able to get anyone to read the CD.
the written report said i had fibroids.
unfortunately the fact not a lot of us have faith in the medical proffession makes our plights worse.
my diagnosis from the urologist of'chronic pelvic pain' reminded me that i am a foreigner in this country and thats the best i can expect.
mind you, he was the one that give me tryptosol.!
let me know where you are up to.
lorelli chica
Posted
Like you I am still sturggling with this problem too. For now I have been told to practice the pelvic floor excercises for 6 - 8 weeks and then go back to see the uro-gynaecologist with a view to surgery. Ofcourse I would rather not have to have surgery but simply cannot go on like this! I have never felt so low and down with anything in my life and have endured extensive health problems for many years.
I lost all faith in the medical profession when a radiologist who took a CT brain scan at a private hospital mis-read the scan and didnt find the tumour I had sitting there! Infact if I had not have taken myself back to my doctor a year later and been referred to queens square hospital I am unsure what would have happened because by the time they found my tumour it was a giant tumour and not only did I require surgery but also needed a course of radiotherapy post surgery.
The doctors I am sure think I am a compulsive moaner and just sit there looking at me most of the time wondering what they should say to me! Why would anyone like us make this up and find enjoyment of seeing so many doctors explaining our systems to them in the hope they can help us out of this pain and discomfort! I really do despair with it all.
I will say that with all the tests scans procedures and different specialists I have seen that the latest one seems very much on the ball and is well versed with what is going on!
My symptoms are still pressure on the bladderm constant bloated stomach with left side pain higher up close to the colon and general slow bowel movements... I havent felt right for as long as I can remember with this problem. I am sure the rectocele prolapse and stress incontinence is the main cause of most of this but am concerned about the left constant dull ache pain which I am not sure for certain is definitely linked to the prolapse but ofcourse it may be.
I have seen two bowel doctors too and also had bowel scansand tests and everything seems ok and they can find no problems in that area so I remain anxious and frustrated much of the time. I guess I will only know whether this will all going away if I have the surgery.
I am very worried about having surgery and how I will be afterwards and will be reviewing things in September to make a decision re surgery as by then I will have done pelvic floor physio for a few months.,
If you would like details of who I have seen just let me know and I would be happy to help. I share with you in all this and am as frustrated as you are.
I hope and pray things will be better for the both of us very soon.
Talk to you soon
chica lorelli
Posted
so have you actually had a diagnosis?
i started on hidroxil a few months ago that stopped the diarrhia.
i was also prescribed tryptozol 10mg. that is the only thing that eases the pain.
i also take a regular IBS pill with a big meal and am coping quite well.
but the pain is still there if i'm late taking my meds.
everyone tells me i look much better.
i was pale with sunken cheeks and hunched over before.
the tryptozol certainly calm the mind.
i am also past thinking this is gonna kill me as i think it would have by now.
remember i'm in spain.its easy to get anti biotics and morphine over the counter here at cheap price.
i will be more forthright with my questions tomorrow.
i should have a stiff drink to give me the courage.
i will let you know what she says.
its a minefield'the amount of afflictions that could have gone wrong in the abdomen area.
take care
if you take tryptozol, cut em ihalf at first or you will zonc out.
i have to laugh i order in a bar 'whiskey' and hot water and they still ask me if i want ice.!!
chica
Posted
i thought i wrote to you a few days ago but cant seem to see my post.
i've had the all clear with my long awaited digestivo results.
so the only thing i can do is get at another gynno appointment.
this will be 8th.!!
here in spain the summer months have a skeleton staff so i cant expect too much too soon.
how are you feeling.?
mary12941 lorelli
Posted
lorelli mary12941
Posted
Wondering how you are doing and whether you are feeling a little stronger now than when we last spoke? I am still in a bad way. I did the pelvic floor physio which frankly didnt help atall (am sure my teo prolapses have been in place for a long long time ) and that it was only earlier this year I found the person to locate them> I think it one starts physio that far down the line it would be difficult to help rid the condition. I am worse than ever now with bladder urgency frequency, back pain, left side pain, nausea... the list is endless and now I can even feel terrible pressure in my nether regions where clearly the prolapse is pushing and aggravating my bladder and bowel. I wish upon a star this would all go away on its own but sadly that will not happen. They have sent me to so many specialists to check bowels/bladder/kidneys, back/spine, hip, uro dynamics, MRIs, cytsocopies.. you name it I have had it done! I find it all terribly intrusive and this has all stripped me of every ounce of confidence I had. I have decided to have the surgery mainly because I cannot possibly continue like this. Surgery should take place in next few weeks and I am pretrified beyond means. I cry most days and evenings in constant worry if the truth be known.
Like you I have also had my fair share of problems and surgeries in last 20 years and feel very very low with it all.
I would love to hear how you are doing if you get a mo and hope that you are feeling stronger. xxx
mary12941 lorelli
Posted
Am so sorry to hear what you have been through and just hope that your surgery goes really well and that you are so happy with the results afterwards. I think that the majority of surgery must be successful and afterwards people just get on with their lives and don't look back and they therfore don't get back on line to let people know how things went.
I know what you are going through as I went through the same fear before each of my past operations although they werent to do with prolapse. At the moment I am choosing to live with mine, it makes my life very limited and no longer like to be away from home for more than a few hours but I use Lynns Hide away and it helps a bit, I still have the prolapse outside my body but not quite as bad as if I didnt have the support. Some days I think OK I will just go ahead and have the op but then I think maybe leave it a bit longer. If I was young I would definately have the op. Apart from the discomfort I find it bearable at the moment, but if it gets to the point where I cant go on then I will go ahead and have the op, in the past I always waited until then and then wished I had had the op sooner.
I wish you all the best wishes in the world and hope that you are really so delighted after your op and please let me know how you are getting on. xxx
lorelli mary12941
Posted
I am pleased you feel a little stronger and hope things continue for you that way xx
lorelli
Posted
If anyone has recently undergone surgery for prolpase I would be most grateful if they had anything to share or any words of encouragement as I am quite literally petrified about the surgery beyond means.
Thanking you in advance
lorelli
Posted
After surgery pain in the bottom was intense and so I opted to take the morphine as I would not have been able to get through the night without it. Following morning vaginal pack came out which was nothing atall. They took catheter out following morning but I was not able to go to the toilet and had intense pain and pressure in the bladder and vaginal area so they had to put the catheter back in. I also struggled with bowel movemebt after surgery and hadnt been for two days before surgery so ended up not having a bowel movement for 4 days and when I did it was painful. The main worry is that even though you have taken the stool softener (movicol) that you are still pushing and will do some damage but without too much trouble I did go and that relieved just a little bit of the pressure. My main problem has been the bladder which is still not working and has left me extremely anxious. I also have a rare condition called diabetes insipidus which means I produce much more fluid that others and so the pressure with having a catheter in all this time has been pretty intolerable. Whilst in hospital I was extremely sore and they kept putting catheters in (around 5 in total as they needed to put two in/out ones in just to drain the bladder to get me out of my pain) and by the time they put the 5th in it took 2 nurses and close to 30 mins to insert the catheter and the pain was horrendous for me. I was sure I had developed an infection as had some bleeding too and a strange odour but none of the nurses thought it upon themselves to submit a urine sample to check for infection. Bowel movements are approx every two days and I still need to take movicol and psyllium husk to help ease that along. they discharged me after 4 days and once I had had a bowel movement but I was in much discomfort and pain with the catheter which left me with a constant pressure/burning and cutting pain which felt as if it was where the tube fed in through the vagina. Two days later I was bleeding and wasnt sure if this was early onset of my period or a haematoma so kept an eye on that but bleeding did calm down and then went watery so can only assume this was my period. I went a week after to see nurse to have catheter removed and even she upon examining me could not understand why I was bleeding and took a swab and urine sample albeit no infection was found. I tried for almost 3 hours to go it alone but bladder was still not working and so in all the pain I was in, a further catheter had to be fitted for a week. They have also asked me to use the flip flow valve for hourly periods or 3 hourly periods in order to store up some of the pressure of urine in bladder to hopefully show some spasm to get my bladder working again. I will return later on for them to remove the catheter and see once again if my bladder can work alone. I am extremely anxious with all of this and thus far am unable to see any form of benefit from it in all honesty but I guess that is due to having had an uncomfortable catherer in place for 17 days.
I have never felt so low.
I never in a million years had prepared for the pain and discomfort associated to all of this and can only hope that in time I will look back with something more positive.
I think having read other stories I have had a particularly bad experience as my hospital care was not what I had hoped for either and that is another story entirely as none of the nurses even offered to help me shower whilst in hospital for four days which I was pretty apalled at.
if anyone has endured such problems with their bladder after surgery and had repeated catheters I would be very grateful for them to share their story and likewise if anyone has questions to ask me please feel free.
Fingers crossed my bladder will start working soonest.... I am praying for that
dandelionrose lorelli
Posted
The nurses on the ward weren't taking any notice of me when I kept on insisting of bad pains in my abdomen. I was able to pee very small amount but not nearly enough. I insisted that they check my bladder for urine retention and they eventually did. Can you believe I was retaining 1250ml! No wonder I was in a lot of pain and felt very sick too. Of course they all panicked then and cathetrized me. This was day 3 post op. By day 5 I was being sent home and was told to have a folley catheter put in. I didn't want this option so was taught how to self cath before leaving the hospital. I was shown once then sent on my merry way. Like you, I struggled to get the blasted thing in on numerous occasions but stuck at it and am pleased to say just about managed it.
I want to tell you that it will get better
I went from retaining 500ml every 3 hours to 100ml. I know this because until 2 days ago I had to cath myself every 3 hours and measure how much was left over in a jug! Thankfully I only have to catheterize myself twice a day now. It's still a bit of a struggle peeing myself but have learnt a few techniques that seem to help getting it out lol.
Is there anyway of sending a private message on here? It would be lovely to keep in touch with someone else that's in the same boat.
I hope you see this message soon and that my story gives you some hope xxx
lorelli dandelionrose
Posted
I had to read your post twice! I cannot believe you were retaining 1250ml. On thursday I was retaining just under 700ml and was in the most excrutiating pain I have ever experienced. I had NO CLUE how you possibly got through retaining that amount of fluid. As for the nurses I would rather not go there in detail on this forum but will be happy to send you a private message about that. Lets just say that the world of healthcare has alot to answer for when it comes to staffing and necessary resource. The nurses didnt listen to me either. They had put around 6 different catheters in whilst I was in the hospital and I was in such pain and so sore that the last one they put in took two nurses and about 20 minutes. I wasquite literally doubled over in pain. I told about 4 different nurses I am sure something is wrong and I have an infection and not one of them in a four day period suggested taking a urine sample to check for infection. On my day of discharge from the hospital when I spoke to my doctor I had to ask for a urine sample to be submitted thus I left hospital not knowing if I had an infection or not.
Like you and all these other women having not been through this before we have no clue what feels right or wrong after this surgery. I didnt even have a nurse offer to wash me or shower me from point of admission to point of discharge.
I didnt do the self cath at home. I have only had the regular catheters fitted each week since I left the hospital and also been trying to use the flipflow valve for 2 to 3 hours at a time to try and retain some fluid in the bladder to get some spasms going.
My problem is I have a rare condition which makes my body produce alot more fluid than most for example I can pass within an hour sometimes 750ml to 1000ml and so to self cath would be very difficult for me with the large volumes going through my body.
I dont know what my next trip to the hospital will bring and in all honesty I am absolutely dreading it. I think the plan is to keep me there for the day to do the trial without cath and to monitor whether I can go it alone with good better volumes then passing just tiny amounts like 80ml as I was on thursday which is no good.
One thing I know is that if I am not happy I will not leave the hospital without a catheter simply because there can be no way I can ever go through that pain again. I am frightened at the thought to be honest.
Are you in the UK? Only ask as lots of women have written to me from different countries too.
I have to say I think this forum is fantastic! This has provided me with more information than any doctor or nurse has done and like you I have seen countless doctors (urologists/gynaes/colo rectal surgeons) over the years and had some horrid things done to be told along the way nothing was wrong infact I even sat in front of my own gynae who has been my gynae for 15 years telling her I thought it may be a prolapse to which she shrugged her head and told me I didnt have one without even examining me.
I could honestly write a novel as I am sure you could.
I am sure we can send each other a private note. I will try to do it now.
I am SOOO pleased you feel much better now. For me I hate to sound so negative but I honestly cannot see a light at the end of the tunnel right now but pray this will change soon.
very happy to be in touch.
I honestly think every woman going through this deserves a medal
xx
dandelionrose lorelli
Posted
It's interesting that you menion having a rare conditon that makes you produce a lot more fluid, how is this diagnosed? I've often wondered that there's something wrong with me as I seem to pee a LOT more than I drink, but when I mention it to people they just look at me daft as if to say that's impossible?? Yes I'm from the UK too, North Wales. Where are you from?
I'm having a bad day symptom wise today. I didin't mention in my earlier message that during my op I had a cystoscopy that showed a lot of inflammation in my bladder and urethra....he mentioned interstitial cystitis when he came to see me on the ward. Oh I hope it's not as there's no cure for it. I had a cystoscopy done before and nothing was mentioned about IC then even though my symptoms have been the same for years. On days like today I have a constant urge to pee and it's very uncomfortable and painful. Other days I don't get the urge to go at all??? My bladder is not playing ball!
Good luck for your next hospital visit, when do you go? I have my post op appoinment with the urogyne next Friday so I need to get all my questions ready by then.
Are you finding it better going for a poo after surgery? Sorry if TMI but that was a big deciding factor for going ahead with surgery for me. I really struggled to go before but that side of things is better so far thank god. Not perfect yet, but better.
Did you say you're 41? I'm 43 so about the same age. I have three teenage boys how many children do you have? Who'd have thought I'd end up with so many problems after having children. So many of us in the same postion too. I didn't know anything about prolapse before it happend to me and it makes me mad that we're not educated about it a lot more. I just want to be able to pee and poo normaly, not a lot to ask for is it!
Yes I could write a novel too but it would take me ages as my typing is so slow haha
Keep in touch xx
lorelli dandelionrose
Posted
I will keep it brief as I dont want to bore you but the condition I have is a rare form of water diabetes called "diabetes insipidus" for which I have been medicated since 2000. Basically the surgery to my head damaged my thirst gland alongside my pituatory and do the DI develops where the body needs to drink all the time feel thirst and wee all the time. If it wasnt for the tabs I take twice daily the fluid in my body would not be controlled. This is a rare condition believe me when I tell you that I have called 999 in the UK and been to various a & e depts and the nurses who admit me dont even know what DI is and start testing me for sugar diabetes which I do not have.
Like you I have been to two top urologists and had countless scans/cystocopies/tests/uro dynamics/CT scans/MRI scans... you name it I have had it and they could not find anything wrong with exeption of a very inflammed bladder but nothing actually wrong with bladder of the way it empties etc.... I have also suffered many UTIs over the years but am sure that has all been linked to this double prolapse I had which I am also sure has been there for years but nobody managed to locate it and frankly if it would not have been for me researching the uro gynae myself I am sure I would still be in the same place I was.
My symptoms have been bladder related from the off... desperate urge to go (even when I havent drunk), pressure and heaviness in the vagina, recurrent UTIS, sometimes passing huge volumes and sometimes only a dribble. I have never had burning as I wee but just the horrid constand urge to go , sometimes every ten minutes... I have suffered like this for years and so I started with going to a urologist and then saw another one of whom put me to sleep and injected a steroid into my bladder when seemingly I didnt need it as there was nothing actually wrong with my bladder. Also had countless cystocopies as they thought maybe the narrowing of the urethra was the cause but this did nothing to alleviate me of my symptoms either. I was in such a state that I even told a few of the specialists that I thought I had a prolapse and my GP too but they all fobbed me off and nothing was investigated.
When in March I saw the uro gynae she immediately sent me for all the right tests and put me to sleep to do a full and thorough investigation where she immedaitely found a grade 2 to 3 rectocele and a smaller cystocele coupled with slight stress incontinence which showed on the uro dynamic testing and the MRI proctogram test. As nothing else had been located to explain any of my symptoms it was agreed that most of if not all of my symptoms were coming from the double prolapse and the stress incontinence although the SI was only seen a slight and not a major problem.
For me I knew this would be a bit more difficult because of the condition of diabetes insipidus that I have but never in a million years thought it would be this bad.
Do you get very thirsty and drink alot? I would definitely say you should get referred to see an endocrinologist to have a full hormone profiile as this will show any defects and would also show up if you possibly had diabetes insipidus. Normally with DI the first signs are you cannot stop drinking and weeing but normally quite large volumes, then again everyone is different.
If you need any more info feel free to privat emessage me because I am very well versed with all of this and would be happy to try and help you or refer you to the right people in any way that I can.
with regards to bowel movements after this.. I have struggled seem to go every 2 or 3 days at the moment and had awful upset tummy on thursday evening but managed to go earlier today and seemed ok. Am still taking psyllium husk tablets daily and a movocol sachet if I feel bunged up which is helping.
Sorry.. I did say I would keep this brief but with my complex history it is very difficult to do so.
We could double up on the novel for sure..
Hope the info goes some way to help you
Am back in hospital tomorrow lord help me. petrified .com is all I can
xx
lorelli dandelionrose
Posted