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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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  • msatc
    msatc lorelli

    Posted

    Hj lorelli. I am so sorry that it took so long to find a uro/gyno. I also had a rectocele for 2 years with no diagnosis and had to go over my primary care Dr.'s head and fight to get an appointment with a uro/gyno. He first wanted me to go to a general surgeon to get hemmorhoid surgery, Then he wanted me to go to a GYN. My fecal incontinence and inability to have a normal bowel movement were completely interrupting my life, but the doctors seemed to be clueless as to what would fix it. Thankfully I found information on the internet about retoceles and could tell from the diagrams that I had one. I pushed to see my uro/gyno, and within a month I had a posterior colporrhaphy to repair the rectal side of my vaginal wall. I am 10 days post op and I feel great. That is very deceiving. I was very careful to not do any lifting, to do no exercize but walking and no straining, and to make sure I dd not get constipated, Even with all of that it appears I was not supposed to bend over at all, which I was not told, so I went from light spotting the first 3 days to passing clots by day 9, When I called to ask if I should be bleeding so much, I was then told that I should not be bending, After reading on this site, I am realizing that standing and getting out of bed can also put a lot of pressure on the tissue that has been stitched. So I'm trying to just lay still until the clots slow the bleeding down.

    I've learned that no matter how well you may feel after prolapse surgery if you don't REALLY take it easy while your are healing, you will have problems with recovery and it takes a long time to recover so ladies please, please take good care of yourself. No lifting, no bending unless to bend your knees (very little of this), support yourself when getting up or down from sitting or standing, don't strain AT ALL. Lay around and let everyone pamper you for ay least 4 weeks. You deserve it.

    • lorelli
      lorelli msatc

      Posted

      thank you for your note.  I am sorry you have also suffered for a long time but pleased to hear that you are slowly feeling better after the surgery to fix your rectocele.  I am very nervous about the operation and until I have the MRI am not sure whether I will need surgery through the vagina or via the abdomen it all depends on what they see on the MRI regarding position of the rectocele etc...  Were you in alot of pain especially with bowel movements after the operation>

      My first symptoms were all bladder related with intense constant pressure on my bladder and all they could ever locate were various UTIs which they treated with antibiotics but I also had a horris heaviness and pressure in my vaginal area with constant left side pain and stomach bloating!  My bowels havent been normal for some time either and I always felt it a little struggle to go and even after having been didnt feel I had completely emptied my bowels.  The uro gynae tells me this can all be related to the rectocele and it certainly feels that way although I am always concerned there is something else going on which none of the doctors located but then again I have never suffered with rectocele before so have nothing to go on on whether a stage 3 rectocele can cause this much pain and discomfort which maybe it can.  Having read many of the stories on the net people seem to be in as much despair as me so I dont feel I have a choice other than to have surgery but am anxious the surgery may result in other problems and in the worst case scenario not fix this awful problem I have. The uro gynae is also going to fix the stress incontinence problem I have which I guess coupled with the rectocele is the reason I am suffering so badly.  I can honestly say I have never felt as bad and uncomfortable as I currently do.   I will be sure to rest up completely after the surgery and not overdo things.  Thank you for all your words and advice I am very much grateful and hope you continue to feel much better.

    • msatc
      msatc lorelli

      Posted

      Even though my surgery was done vaginally, I had excruciating pain in my rectum immediately after surgery. I used a trick that I came up with because pain meds make was extremely sick. I took small popsicles, put then in a small zip lock bags and put a condom on them and inserted them in my rectum. It worked very well.Ice always takes my pain away. I had no pain after the first day. I think if it has been done abdominally, I would have been in a lot more pain, but maybe not. Pain has not been an issue, just bleeding because I was just getting in and out of bed as I normally do and bending over a lot and I should not have done that.

      Unfortunately with scrivener you have to have surgery to repair it. Once you have the surgery the stress incontinence will go away unless you have other prolapsed organs. The concurrencies I'm getting is that even though the recovery from POP is long, most women feel so much better afterward and are glad they did it.

      If you have any questions after your surgery, please feel free to ask me or if you just need some support. I will try to help you have an easy anxiety-free recovery.

    • msatc
      msatc

      Posted

      This should have read... Unfortunately with a rectocele you have to have surgery to repair it. Exercises won't fix it.
    • lorelli
      lorelli msatc

      Posted

      thank you for your help and encouraging words.  To say I am pterified to have this surgery is an understatement but like you I agree that no physio or alike will cure this underlying problem which I think has been with me a very long time and gotten progessively worse despite all the private doctors I have seen not detecting it or managing to locate it.

      I use ice packs alot too so I wonder if maybe the ice pack on my back will help ease up with the pain.  What I am worried about most is the bowel movements after surgery and also getting rid of this constant bladder pressure and urgency because I can hardly be away from the toilet which makes it equally difficult to go anywhere and do anything and live even a semi-normal life. I hope and pray that like you say the surgery will also assist with the stress incontinence problem as the uro-gynae did a thorough investigation with cystoscopy/proctoscopy and a further examination under anaesthetic and did not locate a problem with any of the other organs only locating the rectocele.  Now she just needs to define the positioning via the MRI scan I will have next week which she tells me will determine whether the op will be through the vagina or done through the abdomen. I hope I will get through all this. I know that researching extensively through google is not always the best as you seem to see all the horror stories and there have to also be many success stories but with reach of the horror stories I read I end up in floods of tears worried whether I am doing the right thing by opting for surgery then again the simple fact is that I cannot continue like this as it is the bain of my life sad

      Are you still in pain a few weeks after the surgery and would you say things have improved alot for you with bowel movements?

      thanking you kindly for all your help.  I am sincerely grateful

    • lorelli
      lorelli

      Posted

      meant to say petrified about having surgery in first few lines sorry another typo! sad
    • msatc
      msatc lorelli

      Posted

      I know that saying don't worry may not lessen your anxiety, but you ARE doing the right thing and worrying will not allow your body to be in the best environment to heal. Try to relax and meditate or pray so you are not stressed before or after your surgery. I started with a good outlook because I pray alot - it gives me peace of mind. I don't know if you believe in God, but I know He does not want any of us to suffer. If you don't, just meditate on the people you love and surround yourself with positive people and things.

      Try to eat a little healthier than you ever have, lots of fruits and veggies. It helps tremendously with the healing and bowl movements. Get Probiotics and a natural laxitive like ground Phyllium Husk. Dr Oz. puts some in a smoothie every day. I take it in pill form in a product called CKLS. It cleans your Colon, Kidneys, Liver & Spleen. The main ingredient is Phyllium Husks with lots of other detoxifying herbs. You can order it online. It's from a company called New Body, but search for the best price. You will have no problem having a bowl movement with this, and it is better than taking over-the-counter laxitives. Also Magnesium helps eliminate constipation and it is good for you. Most of us are mineral deficient. Before the surgery I had to take 800mg every night so I wouldn't be constipated. Since the surgery I have been taking 1 CKLS with each meal and 1 400mg Magnesium pill before bed and now when I have a BM, I just sit down, take I large breath and as I exhale everything comes out like silk. You may have to adjust the doses for your body.

      I have suffered from chronic constipation my whole life. The constant straining is how I developed the rectocele. I bought the CKLS after I knew I was having the surgery, but I wish I had bought it earlier.

      Please don't be afraid if you can set your self up to have everything you need before surgery and make it so you can really relax for several eeks after, you will be fine and have your life back. smile

    • lorelli
      lorelli msatc

      Posted

      Yes I know you are right when you say dont worry but I guess as I have been suffering with this for so long I am to the point of despair and worried I will never move forward and rid all these problems.  I am trying as best I can to remain as possitive as possible.

      I have taken acidophilus for years and also been taking psyllium husk powder every evening and sometimes in the morning. It does help me with my bowels but I still struggle with bowel movements which I think is because the rectocele has gotten that much worse as I never used to have such problems with my bowels.

      Like you I have suffered constipation on and off over the years and whilst I was on iron tabs for a few years was straining which I am sure didnt help matter any but for now I remain bloated with left side pain and compromised bowels and an overactive bladder due to the stress incontinence.  I am undergoing a course of acupuncture to help build up my strength a little and sometimes I feel it helps and at other times I feel so poorly that I cannot tell whether or not it is helping.

      I havent taken magnesium before so will look into that.

      My immune is pretty low as I had a rare illness some 16 years ago and also had a five week course of radiotherapy. TO have all this ontop of all I have been through is a struggle but I am trying to hang onto the fact that this UG has now located the main source of my problems with a diagnosis which hopefully she can resolve for me smile

      I went to see an ayruvedic doctor last year and she told me to take psyllium every night at 8pm or on a empty stomach coupled with a hot drink made up of cinnamon, tumeric and cardomman seeds.. the husk powder def helps the bowels to move but nothing else has made too much difference for me. I do try to stay away from spicy foods, tomatoes and chilli and cheese etc....  I have also been told to have lots of natural yoghurt but that does not seem to help either.

      I am pleased to hear your bowel movements are now good.  That much be such a relief for you.  I hope things will ease up for me after the surgery

    • msatc
      msatc lorelli

      Posted

      Lorelli, I'm so sorry you are suffering so much. I hope that your surgery goes well and that your problems are relieved right away. Keep being an advocate for your health.
    • lorelli
      lorelli msatc

      Posted

      thank you will try!  Will be in touch once I know which surgery I have sheduled and when it will be if ok with you incase I have a few questions for you!  I wish you much good health and thank you again for your invaluable help xx
    • msatc
      msatc lorelli

      Posted

      Absolutely. I'll be here to help you get through this. Chin up.
    • lorelli
      lorelli msatc

      Posted

      thank you for listening, for your help and kindness. I am very much grateful.  To suffer and be able to share with like minded people who are suffering the same is a huge help...
    • janice41238
      janice41238 msatc

      Posted

      I am thankful for all the information that is shared. I will have A & P repair as well as an Ablation of the Uterus in 2 days. I am excited for the surgery but not the recovery.
    • lorelli
      lorelli msatc

      Posted

      Hope you are feeling well.  I havent written for a long time but am still suffering infact moreso than ever to the point I cannot continue like this as it is quite literally taking over my life.  I should be having the surgery in next few weeks and pray it goes some way to help me with the debilitating symptoms I am experiencing from both the rectocele and cystocele I have.  The surgery will ve vaginal and they have told me that I will need to stay in the hospital for minimum 3 days due to my complex medical history I guess they want to monitor me alittle more before I return home. I am absolutely petrified even thinking about it. Whilst I have read many positive stories I have also read some absolute horror stories which has caused me much anxiety.  I pray the surgery will help me as have never felt as bad as I do.

      Would love to hear how you are doing when you get a mo. Hope you are feeling good and strong  xx

  • michelle96974
    michelle96974 lorelli

    Posted

    Hi Lorelli

    i have just recently be diagnosed by my Dr and am waiting to see specialist on 23rd July. Could you please describe your symptoms as I am worried my symptoms are not due to the rectocele and am worrying myself silly! 

    • lorelli
      lorelli michelle96974

      Posted

      thank you for your note...  Sorry you are suffering too.  If you read my initital lengthy post you will be able to see all the symptoms I am suffering which are bladder frequency/bloated tummy, left side pain ( constant), slow bowel movements and lower back pain at times...

      What are youy symptoms?  Are they similar?

      It has taken me so long to get anyone to locate the rectocele prolapse that like you I am also worried that all of my symptoms are related to just the rectocele and am very anxious that something else is going on which has not been located.  I have seen so many doctors (uro-gynae/general gynae/urologists/bowel doctors) and am utterly fed up and frustrated infact spend much of my time in tears out of pure angst and frustration so I really do sympathise and understand.

      I am currently doing pelvic floor excercises as instructed by the uro-gynae for 6-8 weeks and will make decision after that as to whether to go ahead with surgery of which I remain extremely anxious.

      I know that on-line we all tend to read only the bad and horror stories after surgery but I get very nervous reading some of the patient stories and wonder how I will copy after surgery with any related or associated pain or problems!

      As a 41 yr old woman this has stripped me of all confidence and I tend to keep it all to myself and people look at me and think I am fine and that I am am obsessive moaner sad

      If I can help in any way I will be happy to!  Also very happy to refer you to the person I am currently seeing who is excellent and very much well versed in this area.. 

      As for worrying yourself silly I could win an oscar when it comes to worrying so you are in very good company smile

      talk to you soon

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