Rectocele

[Peacefrog]

Hello, I am 62 years old. I have been living with pelvic and rectal pain for over two years. Finally had one of the doctors order an MRI with defecography and refer me to a urogynocologist. The urogyn could not feel the rectocele on exam and therefore no surgery or pessary possible. I have been through pelvic PT twice, never able to resolve rectal and back pain. I am dependent on Trulance to induce a BM. TheTrulance did not work today. Has anyone else had similar situation? I an miserable.

[gillianTS]

Is the MRI a Defecating MRI? Have you had this yet? Things you can try are Glycerin Suppositories, and stool softeners, include magnesium too, not too much because it can have the opposite affects.

If you have a rectocele did the Urogyna examine your rectum or simply examine your vaginal cavity. This is exactly what happened to me. I told my Gastroenterologist and she carried out the rectal examination.

I had a Defecating Proctogram MRI in July 2024. Not a pleasant experience but 100% absolutely necessary, you just need to remember you are looking for the results you have sought for years. For me after years and years I have got an answer, a rare grade 3 sigmoidocele, something none of these consultants or any of the very many previous MRI'S and CT scans could have picked up.

I had a laparoscopy a week ago so the colorectal surgeon could look at the sigmoid and where it has gone to. I am waiting for surgery now, however I have another rare issue with my pouch of douglas that the surgeon had never ever experienced or heard of. The surgeon told me after the laparoscopy I have 2 very rare finding and she needed to go away and consider how to manage me. I go back to see her in a week, I hope to get some answers.

You may be experiencing incomplete evacuation and whatever bits are left behind become dry and hard. This further blocks things creating more constipation. If you can manage to use glycerine suppositories this should help.

Keeping yourself in a position of no constipation needs lots of thought for me. Even eating bread, pasta and rice creates massive issues.

Look at cutting out refined carbohydrates and eat lots of softer fruit and vegetables and plenty of fluids with your food. Do not pile too much fibre in without having lots of fluid too.

[CockeyMoor in reply to gillianTS]

Can I just ask…I know I need a defecating proctogram MRI but I am so scared because I just can’t push naturally anymore so wonder if I would be in a terrible predicament like mid-poo and stuck!

[Peacefrog in reply to CockeyMoor]

They inserted ultrasound gel in the rectum and I could only expel a tiny bit. After the images were done, I went home and used a Trulance. They used two huge syringes of gel, but I really could not feel it much because the gel was so soft.

[gillianTS in reply to CockeyMoor]

PART 1 OF 2 Hi, this message will be in too parts because I have used too many characters up.

I will try to explain fully what the Defecating Proctogram MRI comprises of. First part: You lie down on your back, legs are be bent at the knee and bolster(s) placed under the knees for comfort, your heals are on the bed. MRI starts with NO jelly inserted, you are asked to go through a series of pelvic floor exercises and then through a straining motion as though you are going for a poo but Not opening your bowels. If anything comes out, pee or poo, please do not worry you have a big pair of pants which are padded or lie on a pad. It really important to do as instructed regardless of how efficient your pelvic floor exercises or how effective you are at hold in pee or poo.Second part: You are then taken out if the MRI and jelly is inserted in the rectum whilst you are on the MRI scanner bed, you are asked to turn on your side, once completed you are placed back in the MRI and you are asked to repeat everything you were asked to do in the first phase But you are still asked to retain the jelly inside of your rectum during the pelvic exercises and strain. Again please do not worry if anything comes out.

Third phase: You are asked to poo out as much as you can, please do not be worried if only a little bit comes out or nothing comes out. Do not worry if any urine comes out.

If you are not able to poo out the contents on the jelly from your rectum you may be brought out of the MRI and asked to use the bathroom to remove as much jelly as possible, you will then go back into the MRI and you will have further imaging to access how much jelly is left in your rectum.

Note: Depending on your circumstances you may also have jelly inserted into your vagina, once the jelly is inserted a kind of plug is placed at the entrance of the vagina to keep the jelly in place whilst scanning and again removed during the scan.

It is so so important that you just relax and just throw any caution to the wind, it's the only way to get a full result from the procedure. The procedure identifies all kind of prolapses in bowel, vagina and uterus as well as the urethra/ bladder. It measures each one, if present, from a specific point in your pelvis and depending on the issues identified measurements are recorded before and during strain. If you have issues with your pelvic exercises it identifies the general issue with muscles etc but not the full specifics, but enough to identify if this is one of the issues. Think of this MRI as the only chance to look at everything in a functioning way, the images recorded are more like a film rather than set images, so the Consultant Radiologist can review things in real time. It is important you remain completely still during phases other than trying to do pelvic floor exercises and strain, but you are asked to do these in the position you are laying down in, I was not allowed to put my feet flat on the scanner bed despite the fact this is how I do my pelvic floor exercises, this did feel a little awkward but I did my best.

[gillianTS in reply to gillianTS]

Part 2:So far as my other issue recorded on this MRI this is sigmoidocele grade 3 descent, grades for this are 1 to 3. It basically means the sigmoid has dropped into the pouch of douglas and found a way down.l and goes down significantly each time I have a bowel movement, descents during any normal day through gravity. This is not able to be diagnosed through any other way, physically or through other scans. I have 8 scans of the pelvis and none of these idenfied this issue.

The exact same thing can happen with the small bowel, this is called an Enterocele which is much more common.

There is also another type of Proctogram Defecating MRI machine where you sit on a kind of toilet and I am not 100% if you go through any pelvic floor exercises or whether this records all the things I have identified above.

It is important you know exactly what you are having done before you go for the MRI:

Will I be laying down in the MRI ?

Will I be doing Pelvic floor exercises and strain with and without jelly/contrast?

What happens if I do not empty the jelly out of my rectum? Will I be asked to use the bathroom and then rescanned, this is important because it measures what us left in your rectum and provides more imaging of the rectum.

Ask do you need to use a glycerine suppositories / laxative before the scan. Some hospitals do others don't, I decided to use a glycerine suppository because I just felt was right for me.

Make absolutely sure you request a copy of the MRI report, crucially important, especially in my own case, it took over 5 months for any consultant to discuss my issues, what I have is rare and not seen at my hospital, even today after having to endure a further procedure, a laparoscopy, just so the colorectal surgeon could look at my pouch of douglas, which is full of sigmoid. The basic understanding that a sigmoidocele is only viewed on the defecating part of the MRI is still lost on the consultant. Little did I know until thus Monday that a valsalva maneuver was carried out on me during general anesthetic whilst having my laparoscopy. A procedure which will not show the movement of the sigmoidocele, I had already had an MRI doing valsalva maneuver less than a year earlier.

A few things you could try. Get your GP to prescribe Docusate or some other stool softener, try supplementing with magnesium, I take both of these twice a day. I use glycerine suppositories if nothing comes out. Stop eating refined carbohydrates, bread, pasta, cakes biscuits etc anything basically made with refined flour try to reduce. Increase the amount of fluid in your food, cooked softer foods, chew lots, try removing nuts and seeds and anything that might stop free passage. I rarely eat red meat now because this makes me constipated. Keep a food and poo and pee diary.

But a word of warning, I had the fact that I am not constipated thrown back at me. The only reason I am not constipated is because I take huge measures with laxative, supplements and suppositories and make lifestyle food choice sacrifices, food that I like but refrain from eating for my own health, pain and discomfort because I am trying not to be flat on my back in bed everyday. If I didn't then I feel confident the surgery I am being offered would be brought forward. I have issues going to the bathroom but I try to have a solution before it gets too bad. My sigmoidocele goes right down in between the vagina and bowel and then loops back up again before descending again into the bowel and out through the rectum. I do not believe I can take that risk.

I have researched my condition of a sigmoidocele and enteroceles extensively over the last 7 months. If I had not then the person I am seeing would have no experience with my case having never dealt with or known a case like it. Surgically the consultant is super but understandably needs to consider what surgery and more importantly the benefit to me to eliminate my problem.

Probably written too much, if you have got this far and need any more information please get in touch.

[CockeyMoor in reply to gillianTS]

Thank you so much for taking the time to write such an informative description of a Defecating Proctogram MRI. You really have encouraged me to ask for one and not be so scared. I absolutely know it is necessary.

I have read part 2 and it makes you realise how important it is to keep going and also researching for yourself. Finding out you have such a rare condition must be daunting but on the other-hand you finally know what is wrong albeit you have yet to have it corrected. Good luck and please let me know how you go on.

I do wonder how many more people have got Enteroceles or Sigmoidoceles but just don’t know because the Specialists have never seen them. It really does emphasise the importance that other scans just do not show up these conditions.

Recently I have almost stopped eating red meat but after reading your message I am now going to cut out refined carbohydrate as much as possible because I have been suspecting that was aggravating things.

I am doing a food diary and one of the biggest culprits for me are Onions. I only found out a few weeks ago . It does make a big difference to my pain.

Take care and hope you get some good help now to get on the mend soon .

[gillianTS in reply to CockeyMoor]

Me again. I had my Proctogram Defecating MRI, which ever way around... some hospitals call it a Dynamic MRI. Please make sure you know what is included. When I spoke to a radiographer in an NHS hospital she said I'm sure we do not do all that here. I went to a private hospital. It is the best money I have paid on my health other than something I have just read in your profile that we share and that is Inguinal Hernias. Had an Occult right inguinal hernia identified after my GP referred me as an emergency. Only identified after CT scan, I travelled to the British Hernia Centre at St Mary's London to the lindo wing, that is the 2nd best thing I have paid for privately.

Also now have left inguinal hernia, small, confirmed again on Procotogram MRI, also rectocele which I have read is likely due to sigmoidocele. I have a hiatus hernia. A diverticulum in my urethra with once recurring UTI's for years, eventually put on low dose antibiotics for over 4 years and then I read an article by an American urologist who said start taking high dose Cranberry tablets at the same time as the antibiotics and gradually come off the antibiotics. All been great since. The urethral diverticulum was also confirmed as none symptomatic on the Proctogram MRI. I have diverticulitis but as far as I know this is not symptomatic. Something else that might help you is taking buscopan every now and then, this has been very helpful for left pelvic pain.

So far as your rectocele is concerned, you should be able to feel this yourself, if you care to carry out a vaginal examination, do this when standing and slightly bent forward, I can feel mine on the back vaginal wall of the vagina, just feels like a slight bulge. You can, according to the head of the pelvic dysfunction team, use your thumb inside the back wall of the vagina, by gently applying some pressure here is supposed to help with defecation. Do not eat to much fibrous fibre either it can have an opposite effect.

Now what I need doing will be out of my price range privately. I will have to wait like everyone else for an NHS slot to become available like I have to do for everything else.

I have other condition Behcets disease and Ehlers Danlos. I wondered if you have a Ehlers Danlos diagnosis? This has never affected me in my life until around 2016 when I got a formal diagnosis. At the moment I am being told this could be the issues with me as it is sometimes more problematic when getting older with every in the pelvis becoming more lax.

I have got a Gynaecologist diagnosis of hypertonic pelvic floor, not sure if this is a result of sigmoidocele or the reverse. I have to go to a Pelvic Dysfunction appointment next month to get fully checked out and learn how to relax my pelvic floor. Not sure hos that will go with the sigmoidocele. One minute the colorectal surgeon says its a good thing your have hypertonic pelvic floor and then the next it's a good thing you have an appointment to relax the pelvic floor muscles... I will just see how things go.

[CockeyMoor in reply to gillianTS]

I went private for both my hernia repairs and it was also money well spent for me too. We gave up our private health many years ago because of the cost. We have now joined Benenden which is half way between NHS and Private and I am going to seek their help and advice.

I have never had an Elhers Danlos or Behcets disease diagnosis. All I have ever been told is I have weak connective tissue probably inherited from my Dad who had hernias and now I come to think of it , bowel issues.

Sadly today I was meant to see my lady GP who could feel the Rectocele & Cystocele but had to cancel my appointment due to a tummy bug.

I can feel the Rectocele myself.

I agree with you about the money being well spent because you would never have known about the different conditions.

I too used to suffer lots of recurrent UTIs all of a sudden from 2019. I was given antibiotics over two years and alternated every three months. It did help.

Fascinating that we do have a lot of similar issues. You have spurred me on . Thank you so much . Good Luck and let me know how you go on. Surely now you have gone private and these conditions have been identified the NHS should not be as long a wait 🙏

[gillianTS in reply to CockeyMoor]

H, similar situation, we used to have private medical insurance through our then jobs but sadly no longer. I have never heard of Benenden I will have to look at this." Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. The conditions are caused by genetic changes that affect connective tissue. Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility. "

You might wish to have a look at this site:

ehlers-danlos.com/what-is-eds/

I fall into 2 areas, my main area is hEDS which is hypermobility but I also have sphincter issues and a mild associated heart condition that is monitored. I inherited EDS from my mother. I was not formally diagnosed until my 40's by which time things had started to become an issue with over extending, issues with lots of things.

The Behcets is something I have had dined my teens, grew out of it in my 39's and it returned in my 40's. Quite a few people I have come across have both issues.

I went to see a professor in genetics and he would not tests me for EDS because my family history confirmed my diagnosis. With Behcets he said that only 4% of those tested have a particular gene but it does not mean you do not have the diagnosis. He would not test for this because I had already gone through all the diagnosis criteria, symptoms etc to get a formal diagnosis.

Sorry to learn you did not get to see your GP, really hope you can get the appointment rearrange very soon.

I do not expect surgery this year, tge surgeon advised me last Monday that it is highly unlikely. Funny I have received a Pre-Assessment for surgery yesterday for April. Think they are supposed to last for 6 months, expect it to run out.

I am trying hard to park everything but it is very hard when your body is so painful in places. I see my Rheumatologist next week I am hoping she is open to discussing some pain relief until things improve.

Take care of yourself and really wish you well on your journey x

[CockeyMoor in reply to gillianTS]

I have re-arranged my lady GP so that’s good.

Really interesting to read your info. Thanks again for taking the time and Good Luck to you too.

Just to add that you have to be in Benenden for 6 months before they will speed up any NHS referrals that are taking too long. My Husband quotes that if you wait over 3 weeks after an NHS referral Benenden will act . In the first 6 months of membership they are there for advice only. They will take on people with pre-existing conditions. My Husband has recently had some free Physiotherapy on it because the NHS wait was ridiculous. I am under the impression they put you into the private healthcare system if the NHS fails you. I really need to read up on it all myself. The cost was £12.50 per person per month in our first year but it has gone up slightly to £15 a month in our second year. I hope I have got all that right. It’s time to read the info myself and stop relying on hubby!

[CockeyMoor]

Absolutely. I had a moderate Rectocele grade 2 diagnosed in 2021.

Every morning I awake in pain. Can be rectal, front abdominal pain , or both.

I have to use Glycerin Suppositories most days and take pain relief to function.

In order to evacuate my bowel I have to use two fingers and press on the perenium.

I saw a lovely lady GP last September who diagnosed a Cystocele as well as being able to feel the Rectocele. She referred me to Uro/Gynae. I got a cancellation so saw a Uro/Gynae two weeks ago instead of the end of April. He said he could not feel a Rectocele or Cystocele yet the Rectocele was diagnosed in a Cystoscopy in 2021!

He has given me one of those charts to measure fluid intake and output and seeing as I was diagnosed with Pelvic floor issues in 2009 and already done that I now can’t be bothered. I know I have a weak Pelvic floor.

He has referred me for Physio and yet again I have no faith in that because my situation is too far gone.

I also get severe pain under my right rib when I try to poo. Apparently there is a hernia there. I could scream. Just got myself an appointment with the lady GP who kindly referred me in October 2024 and going to start all over again.

I did not have my Rectum physically examined. But I have had numerous Colonoscopies and Sigmoidoscopies showing Diverticular pouches and apparently I have one near the rectum which I believe is the Rectocele showing up.

So confused and frustrated that I have to suffer this pain every morning and sometimes all day.

It makes me feel lethargic and constantly grumpy because people really do not understand what a rigmarole just going to the loo is !

Also I have bladder problems which seems to be connected.

Hope you can get more help soon .

[Peacefrog in reply to CockeyMoor]

This whole process is excruciating both mentally and physically. Thanks for letting me know I am not alone. I certainly hope you find some help as well.