1. Community
  2. Women's health
  3. Genitourinary Prolapse

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

Prev Next
  • SpiderLady
    SpiderLady lorelli

    Posted

    I am 41 also and have been suffering from the same symptoms for a past 8 years. Still no one can tell me why. I have tried to explain my symptoms only to be laughed at. I was told that I have a mild bladder prolapse. But nothing that can cause any problems. I really understand how hard it is when they make you feel like it's all in your head. I am seeing a GI doctor today and I am going to do my best to make him understand. I know what my chances are of this being my problem. My mother has had prolapse surgery, I have had 3 children all naturally, and I am a rape Survivor. I am also almost done with menopause. From what I understand that all plays a part. It has taken me a long time to get them to treat me for menopause. I was told many times I was to young. I was even told that 1 week before I turned 40. Only to go back for a follow-up appointment 2 weeks later and was told you're 40 maybe it's menopause. But I only just started hormone replacement last week. All of the women in my family have gone through it very early. Can anyone give me some advise as to what to say to my doctor to make him listen?

    • lorelli
      lorelli SpiderLady

      Posted

      so sorry not gotten back to you yet had rough time and broke my wrist badly resulting in two surgeries. difficult with my phone but going to write back to you in detail this evening .. I know only too well how awful and debilitating these problems are.. lorelli
    • lorelli
      lorelli SpiderLady

      Posted

      I am sorry to hear you are suffering too and of the awful ordeal you have been through… I would love to be able to tell you that prolapse surgery cured me of my symptoms but sadly that hasn’t happened.  Not only that but I had such an awful time with the uro-gynae who operated on me who provided no form of aftercare whatsoever whilst I had a catheter in situ for 7 weeks that it has scared me to no end.  In the beginning my symptoms were a little easier after surgery but around 4 months afterwards they were pretty much the same as before thus I continue to suffer mainly the pressure on the bladder and bladder frequency coupled with stomach bloating, left flank pain and ongoing bowel issues.  I have quite literally had every test and scan there is:: CT scans/colonoscopy’s/sigmoidoscopy/endoscopy/cystoscopy’s/ultra sounds/bladder stretch’s/uro dynamics/proctogram etc....  the list is endless.  I have been told by the bowel people that there is nothing they can find other than a mild diverticulosis and IBS and by the bladder/gynae people been told that I have irritable bladder syndrome.  I am still convinced there is some underlying problem because I feel so bad much of the time but have now been told that the problems are functional and that hypnotherapy may help..  I have also been offered every anti-depressant under the sun which thus far I have been reluctant to start but am told that these can help take the edge off. 

      I do have some added issues of a rare condition called diabetes insipidus which was a result of when I had pituitary surgery 18 years ago but have been medicated for that since 2000 and am sure that is not related in any way.

      I fully sympathise with you and all I can say is that if you are not happy.. you must continue to pursue it.. I am not sure if you are utilising the NHS or private healthcare to assist you but if you can push for a second opinion it may help. I do not think and never did think that the rectocele and cystocele they found was causing all of my problems but it was the only thing I could liken to be contributing to the symptoms which is why I had the surgery.  I paid a heavy price after the surgery but also hear that many women have had the surgery which has helped them greatly so fully appreciate that my situation may have been unfortunate and somewhat isolated L

      I have no doubt that stress is now playing a large factor on how I feel but there is no woman in the world who would go through all this with all these symptoms and not become anxious unless they were made of stone!  It takes over everything so I really so feel for you.

      I have also had countless antibiotics over the years a few of which have helped a little for a while such as dalacin vaginal cream and also Keflex 7-10 day course (tablet form). I also use d-mannose which in the beginning helped but does not seem to do much now.  A few weeks back I started charcoal tablets as these were highly recommended for IBS and alike… Will see how I get on with them,,

      I also got told about a Japanese ginger tea drink which comes in sachets which is meant to help ease stomach bloating and ibs symptoms but I must tell you that it will take a lot of ginger tea to alleviate my bloated tummy  L 

      I do not think doctors take these women problems seriously enough atall.  My bladder and bowel problems quite literally take over my life and prevent me from doing lots.

      I also struggle with my weight and losing weight is very hard which I am sure does not aid my bladder issues.

      If there is anything in particular you would like to ask please feel free I have struggled with this for many many years and have seen countless specialists and paid them huge amounts of money to either be laughed at or sent away with a script for anti-depressant’s or a referral to their best friend around the corner to Harley street who has also been unable to help me in any way

      Its so hard… I would not wish these problems on anyone.

      I have to say that Matron on this site is a huge credit and in my opinion the “jewel in the crown”.. She is the most lovely lady who is well versed and really knows about all of this from her past experiences.  Matron was absolutely invaluable to me and I am sure she is still on the site hopefully J

      Wishing you well x

       

    • cookienz
      cookienz lorelli

      Posted

      Hi lorelli my heart goes out to you, Ive read your post from a year ago and was wondering how you were. How upsetting to hear you are still struggling.

      ?Unfortunately for you you dont appear to be in the "majority" of us whom go on to have our ops and recover normal functions of our bodies. Matron is still posting on this site and giving us understanding and sensible advice. This forum for me has been invaluable

    • lorelli
      lorelli cookienz

      Posted

      thank you for your kind words.  Its an ongoing battle for me and very very hard to deal with. It has bought me down considerably which is a great shame.  I know many ladies have good successful stories but there is a small array of ladies such as myself who have poor experiences which is a great shame.

      I am hopeful things will get better in time.. I really do hope so.

      Matron helped me a great deal.. she is the jewel to this site without question..

      I hope you are feeling good and well.

      health problems as such are so very hard to deal with xx

       

    • cookienz
      cookienz lorelli

      Posted

      Hi again, Im very glad that so far so good since my operation, interestingly my operation ended up taking a back seat ! as a couple of hours after coming out of theatre I suffered a massive heart attack. So there ended my stay in the gyne ward and off to intensive care in the heart ward went I.

      ​The cardio unit nurses ended up having to look after not only my heart but my freshly mended woman parts as I was only a few hours out of surgery. As the cardiologist said I;d won lotto of life. I now have 3 stents

      I know Im lucky and Im very grateful that all has come out how it has.

      My op was late Sept so its good to have those months behind me. I no longer have that awful uncomfortable bulge and have normal bowel motions. Im still suffer a small amount of urine leakage at times but Im working on those PF excercises.Had a bit of a moment earlier this week with fresh blood and pain but that has settled down and gone now so perhaps it was sutures dissolving?.

      I really hope that you are ok and on top of everything else your wrist heals soon so at least you can put that behind you

      ​Best of wishes Kath

        

       

    • lorelli
      lorelli cookienz

      Posted

      Oh my goodness Kath.. what a trooper you are!  So sorry to hear what you have been through..

      Pleased you are feeling a bit stronger now.  I could not believe what I was reading.  To go through all that together cannot have been easily by any means....

      I am not great with bladder and aches and pains but trying to plod along as best I can with my fragile wrist fracture.

      2017 will be brighter it HAS to be smile

      sending you all good wishes x

  • patricia_69091
    patricia_69091 lorelli

    Posted

    I have been suffering with sporadic pelvic pain since March 2016.  I saw a urologist in May and she found no infection or anything to explain my very frequent nightly trips to try to empty my bladder.  Sometimes, once an hour during the night.  The only diagnosis she could give was overactive bladder.

    In December 2016, I saw a gynecologist, told her of the squeezing pain in the pelvic area, so she did an exam.  She discovered that I had a rectocele.  She did say that sharp pain, in her experience, has not been widely reported.  She suggested that I have a colonoscopy to rule out any other problems, and I plan to ask my primary doctor about it at my March appointment.

    I have continued to experience a lot of pain, off and on, mostly within the time leading up to when a bowel movement is about to occur.  It seems to be worse if I have inadvertently let myself become somewhat dehydrated. If I'm away from home or just busy, I forget to drink the necessary requirements of water.  The pain is really bad when I try to sit, move my legs together, even while lying down in bed.  I can go for over a week sometimes without any pain, then, bam, I will be in pain for about a day and a half.  I really believe it's tied to lack of water in the stools which makes having a BM uncomfortable.  However the pain feels like it radiates from the vaginal rather than rectal area.  Does this sound like the pain you have experienced.

     

    • cookienz
      cookienz patricia_69091

      Posted

      Hi I wonder if you will get a reply to the lady " Lorelli" you sent this message to as if you have a look "Lorelli" has not  posted anything on here for over a year. Maybe post another message by 'starting your own discussion" we have a lady on this forum whom has a lot of knowledge Matron whom may be able to give you some advice, kind regards Kath

    • lorelli
      lorelli patricia_69091

      Posted

      sorry not gotten back to you yet been difficult for me to type as broke my wrist badly. will get back to you this evening when back with my computer
    • lorelli
      lorelli patricia_69091

      Posted

      will get back to you this evening when back with my computer as difficult with phone
    • patricia_69091
      patricia_69091 lorelli

      Posted

      Thank you Lorelli.  When I posted I only was able to see your post of over a year ago.  After posting the site opened and I read so many other posts.  I was amazed at the sheer number of posts on this subject.  I look forward to hearing from you.  I'm so sorry that you broke your wrist and I hope all goes well with the healing process.

    • lorelli
      lorelli patricia_69091

      Posted

      I am sorry to hear you are suffering too and fully sympathise as I have suffered with this problem for as long as I can remember.  At its worst I can go to the toilet 3 or 4 times an hour so really know how awful it is.  Mine is also much worse at night-time and often wakes me from my sleep.  Like you they can never seem to locate any infection or any problem on the scans and ultra sounds which proves very frustrating as the symptoms persist.  Do you also have stomach bloating and any pain on the left or right side?  I only ask as I have a left flank pain which is located just below the ribs to the left side kind of in the colon area and as my bowels and also a problem to me I was worried there was something else going on but I have seen 2 colon rectal consultant’s and had two colonoscopies/sigmoidoscopy/endoscopy and CT pelvic scans and they cannot find anything .. All they tell me is that I have a slightly enlarged spleen at 15cm which is the same size as it was 3 years ago and that I have mild diverticular disease and IBS and offer me lots of tablets in this regard.  Same goes with the urologist and uro gynaes who tell me that they cannot find anything and that I am suffering irritable bladder syndrome.  I am so anxious at the way that I feel that I am still convinced there is something they are missing which as you can imagine leads to even more anxiety.

      Have you tried taking psyllium husk for the bowels?  I take this every night and morning and have to say that they help a little bit to regulate bowel movements. I have also just been recommended to try charcoal tablet’s and have started these too to see if they can help. Also a Japanese ginger tea which is said to really help both the bowels and bladder but I guess time will tell.

      They now want me to try a tablet called sertraline 50mg which is an anti-depressants on a very small dose to see if it helps.  They also recommended something called betmiga which is a new tablet for irritable bladder syndrome but I am told they may come with a lot of side effects so am reluctant to try those at the moment. The other option the uro gynae has offered is bladder instillations weekly via catheter but quite frankly after my last experience with a catheter I am not sure I could handle that.

      I don’t get pain when I pass water I just get an awful pressure that I have to go there that instant and if I don’t get to a toilet in time then I get a tummy ache but my tummy is constantly bloated.

      They tell me to drink a lot which when I keep going to the toilet I find difficult to say the least. I also have low iron and low vitamin d which doesn’t help and have tried to eliminate certain foods but between all they tell you not to eat for IBS and irritable bladder you may aswell sit and eat a napkin as everything seems to affect one or the other which is very much daunting.

      I also get a heaviness and pressure in the vaginal area which again I have had checked and they all just look at me like mad and tell me there is nothing wrong.  I have had another uro gynae check me since my prolapse surgery to confirm that there is no re-currence of a prolapse but I wouldn’t be atall surprised if there was.  I have had years of seeing these consultants and I have seen another side to healthcare and have lost a lot of faith in doctors sadly due to the experiences I have had.  I do have a fantastic GB but he can only do so much in his capacity as a GP so its hard.

      My anxiety and depression comes from how I physically feel and nobody seems to get that. It is all so frustrating. If only we could all wake up without these problems.

      If there is anything else you would like to ask please feel free.  I haven’t been on the site as I had a bad fall and broke my wrist very badly and had to have two surgeries.

      Wishing you well.  Lorelli x

       

    • patricia_69091
      patricia_69091 lorelli

      Posted

      Thank you for your kind response.  I'm so sorry you are still aging such problems.

      I don't have any bloating or flank pain.  I haven't used psyllium husks, I don't have much of a problem to need it.  I can only assume that my pain occurs when a bowel movement is somewhat slow to evacuate and just collects, not sending a signal that I need to go.  I think the rectocele is possibly pressing on my urethra, bladder, and vaginal wall causing a feeling of pressure and pain.  When that happens, the pain is usually relieved in several hours or longer after using the bathroom.  I don't have any pain when I urinate or when having a BM.  I have also noticed that when I don't drink enough water, I will have the pain, possibly because it has slowed down the BM's.

      I hope you get better.

      Pat

    • lorelli
      lorelli patricia_69091

      Posted

      Are you actually constipated or do you pass bowel movements in a regular way?  Phusk can help to soften and form stoolls well which sometimes can help. Its not atall easy to deal with all this is it!  I really feel for you.  All I can say is that if you are not happy then you should most definitely seek a second opinion.  These doctors can laugh and shrug their shoulders all they like but it is not they who wake up feeling this bad for the duration each day.

      Sending you get well wishes and hope things can get brighter for us soonest smile

    • patricia_69091
      patricia_69091 lorelli

      Posted

      I am not very often constipated, I have pretty normal BM's.  I can only guess that a normal accumulation of stools may fill the bulging rectocele, which then presses on the wall of the vagina and possibly other tissues, causing pain.  However, like I said before, I only seem to have a problem after I have been away from home, or just busy at home, and haven't had enough water. The duration of the pain may last a day or two.  

      I have seen three doctors, the last one diagnosing a rectocele.  What concerned me was that she said they usually don't cause a lot of pain.  My reason for writing to you was to confirm whether or not, a rectocele causes pain.  Hopefully I will be able to control the pain by keeping hydrated.  It does however, cause a number of bathroom trips during the night.  

      I appreciate your advice, and should I start to have constipation, I will try the psyllium husk.

      I hope your wrist is healing well, and I hope you get to feeling better.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.