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Dyssynergic defecation : Why can't I get help ?

newmanrocks2 profile image
6 Replies

I am a 47 year old woman who had successful rectocele surgery a year ago. Now the underlying problem of pelvic floor dysfunction has come to light.

The consultant discharged me saying there is nothing else that she can do for me, the surgery was a success & I had some physio but without success as most of the time.

Since the operation I have completely changed my diet.

I.e. No dairy, no gluten & no meat, just rice, fruit and veg

I am not overweight and was until two years ago very fit and active.

Now, apart from the constant pain, I am unable to go to the toilet naturally (or indeed with laxatives or enemas) and even Picolax doesn't work and just induces vomiting,

Bouts of infection & toxicity occur on average every 10 days, leading to high temperatures, breathing difficulties, chest pains, headaches, tremors, inability to sleep, aphasia and depression.

Even my eyesight has suffered and cataracts have been a result of the infections. Now hair loss has started and I need almost constant antibiotics and Valium for infection/pain and relaxing pelvic spasms. The antibiotics of course negate my HRT treatment and I seem to have zero immunity and catch each and every cold and infection going around.

I live as a 90 yr old would at the end of their life.

Having done some research online it looks as thou there are treatments but I have no idea how to get help.

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6 Replies
cwocn profile image
cwocn

Dear Newmanrocks- I am so sorry you are having such a time with this. You are young and can live a normal life. My concern is your BM's, you need to get that under control bc it can be life threatening. We were designed to excrete our toxins, so you must talk with a doctor about this. There are options, they may not be what you want but there are options. They of course do not come without risk, sometimes high risk. So think carefully about your choices. I am a wound care nurse and I have a lot of patients that come in for ostomies related to Crohns disease or colitis, some have Cancer and we have very good outcomes with creating an ostomy surgically. This could be temporary or permanent. This may help relax your anxiety about the pain associated with BM's, relax your pelvic muscles through therapy and then return to normal BM's when stable. BUT you must find a qualified and good surgeon to reduce complications. It is a lifestyle change but could most definitely short term relieve your pain and help you concentrate on getting healthy. Thousands of people have them. If you want more info you can go to the ostomy association website in the UK, its great. I refer to it in my practice often. You can talk to some people about this and see if it may help. I will say a prayer for you, you are far too young NOT to get better some how. Take care.

newmanrocks2 profile image
newmanrocks2 in reply to cwocn

thank you for your help, I did return to my gp and press for a new referral and a second opinion. He was helpful,and set the wheels in motion for a referral to St Marks in Harrow. In the meantime have started to arrange for physio nhs, and, private. x

hilarycavagnoli profile image
hilarycavagnoli

When I had the opposite problem (faecal incontinence) I stopped eating for ten days. This gave me a chance to think about my next move. I finally decided on seeing a psychotherapist privately. It was the most intelligent thing I ever did. I now only need to see her four times a year but her support has been invaluable.

Lots of love and good wishes.

Hilary99

newmanrocks2 profile image
newmanrocks2 in reply to hilarycavagnoli

Ok ,so this is great advice, as it seems to be FIGHT for your NHS rights or Pay. Have found a Pelvic Floor Physio from the local uni, and am booked in and rehabilitation yoga,who specialise in this area. Stretching seems to be the key.

In the meantime have set the second opinion/referral nhs wheels in motion for St Marks in Harrow.Thanking you.x

user1000 profile image
user1000 in reply to hilarycavagnoli

Hello Hilary99. I'm so happy to hear of somebody who has had success with treating such problems, thank you so much for sharing! I know this thread is old and I apologize, but I'm really interested in what type of psychotherapist you see, what kind of approach/treatment he/she provides etc. so that i may find the right therapist in my area. Thank you!

FLOcean profile image
FLOcean

I am a 43 year old woman with same problem. I had successful rectocele and cycstocele repair and have major issues with defecation. I did bio feedback for a little while, but did not continue as I saw no improvement. I have gotten a second opinion and was told the same thing: bio-feedback was my only solution. I have gained 8 lbs. in about 1 month and I'm sure it is feces stored up in my intestines. I'm in pain constantly and pain killers only make constipation worse. Living like this is awful. In order for the bio feedback to work I have to have the read out from machine, which means I have to go to doctor and pay $55 each time I go. I can't afford to go every week as recommended. I was hoping there would be a muscle relaxer that would help and found your post. It sounds like the same answer: bio feedback.

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