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Female carriers

Hi. Female carriers, I know there may be some bladder problems but does anyone suffer with their bowel function? and if so how?

6 Replies

Hello! This is a hot topic! Lol!

Just dealing with the constipation from meds is one thing, having to regulate ability to go after finding relief is another. For years, prior to my diagnosis, I took senna to try to regulate the constipation from meds following a partial hysterectomy. Once I was diagnosed with AMN, I would “float” between being constipated and diarrhea, depending what I was taking, eating and doing.

I don’t know if I will ever have good control over my bowels again? I’ve learned that sometimes I work with this one bowel movement at a time. I could go normally for a few days, then won’t go for 2-5 days afterward. Senna will still give me the best relief after not going for a few days. My gastroenterologist took me off daily senna 2 years ago and had me start Miralax. I started at half a capful. Doc instructed me to start there and move up to more as I needed. Well, I found that I had to decrease the dose because it softened the BM to an intolerable degree. I stopped the Miralax after, excuse the description, I’d be going all the time without ability to stop. I was a mess and i found I was getting UTIs and vaginal infections from it. UGH. No way to live. I couldn’t seem to stay clean.

I’m now using more food control to keep regulated. Vegetables play a big part but so do carbs. I’ve tried backing off of the carbs but that doesn’t work for me at all. I’ve relaxed my thoughts on not going for a few days as that was always my way, even as a child. If I feel I need help, I’m down to 1/4 of a senna tablet. That’s a job in itself, cutting the tablets! It’s worth it to me!

So, bladder and bowels are a daily problem for me. I haven’t had a problem with extreme need to get to a bathroom for a BM, but always know where a bathroom is. I now urinate as much as hourly to avoid leakage.

Good luck! I’d love to hear from other women, too!


I do have issues but it has improved somewhat since I had my uterus and ovaries out. I have had a frustrating experience of constipation even when the stool was softer. Just won’t come out! And then when it decides it DOES want to to come out, or if I take a stimulant laxative, there’s no stopping it. I better find a bathroom and fast!

I find that I have to be consistent with a morning routine and schedule...including coffee, warm water with magnesium powder, walking around, breakfast, maybe another cup of hot coffee and rub my tummy to get things going. Of course a bathroom then isn’t a problem because the coffee and water keeps me in there every 10 minutes anyway! I do use prunes or apricots at night and colace and occasionally a laxative. Sometimes some more...um...extreme measures. It’s a dance and no one tells us the steps.

I got some ideas from the “spinal cord injury” pages where “bowel routines” are a part of life.

Good luck to you!


Hi I have had bowel problems for years. My mother died of bowel cancer and due to this I have had various tests, some very invasive. Diagnosis at that time was irritable bowel syndrome IBS as they didn’t know how to define. Having my AMN diagnosis in 2012 made me realise why I’ve had so many problems. I could easily go 2 weeks without a movement which to say the least very uncomfortable!!! Have taken laxative Movicol sachets for years and down to half a sachet a day. I regulate my diet with lots of fresh fruit and vegetables, have to watch as can get diarriah as well. Don’t know why but if diarriah bad I stop all dairy, milk etc for 24/48 hours to help. This may just be me!

Maintaining diet and regular exercise helps and I wish you all the best for a reasonable solution to suit yourself.



I hope you don’t mind me intruding (as a male) into this conversation, as you will know from my previous posts that I also suffer from these problems of incontinence.

I thought it might be helpful and perhaps inspiring to take a look at the video I have come across. It’s from a UK site called Impress - standing for Incontinnce Management & PRevention through Engineering and ScienceS.

Take a look at this page, and play the video of a lady called Tara who was born with Spina Bifida

She is very inspiring and made me realise that there are solutions out there that can help.


I have been in touch with two of the lead researches from Impress and hope to go to one of their conferences in London later this year.


Good luck with all of this, I know how difficult it can be.



Hello Hopeforthefuture,

I am a male, but I will share a bit. There was a long thread on here a few weeks back that went into people's bowel and bladder difficulties in quite a bit of detail. I'd encourage you to go back and read it.

I've had bladder problems for years, but have only had bowel issues for the past few months. I've had two incidents of bowel urgency with no warning, in which I couldn't make it to the bathroom in time. Frustrating and humiliating, but this is our life. I tend towards constipation most of the time, but the incidents of sudden urgency are becoming more common.

My mother, who is a carrier (a misnomer, as they are now stating that women with the gene mutation on one of their x chromosomes actually have the disease, as well), has been having bowel problems for the last two years or so. She is 60 years old, and has similar bowel urgency problems. She has been out on walks in her neighborhood when the sudden urgency hits her. She has begun wearing adult diapers whenever she may be away from a restroom for a longer period of time.

As with most of what affects those with AMN, there is no real fix for this. Neurogenic bowels are not exactly high on the list for a medically researched solution. We have to adapt as best as we can - diapers, supplements, medication, diet, bowel routines. Best wishes to you!


I am not a woman. There, I have said it.

Neurogenic bowel, spastic colon. Call it what you like. Awful.

I can go for five days with no respite. Nothing worse than being on day four, taking a laxative, and you really want to go, but simply cannot. Offer me a million Pounds, and I still couldn't go.

My only comfort is eventually i can.

A doctor told me that it isn't true that you have to go every day. You just have to be regular is all. Most of the food we eat comes out as CO2 as well. Little comfort to me.


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