Log in
Endometriosis UK
38,081 members33,281 posts

Bowel issues with endometriosis TMI warning ⚠️

Hi ladies.

So having had a much nicer period with mefenamic and tranexamic acid I have got severe issues with my bowels for those who don’t know I have endometriosis all over my rectum and I’ve been trying for a baby for nearly 7 years had CP last year.

I’m awaiting a lap with an endometriosis specialist sadly my area it’s 30/35 week wait.

Last few days I’ve had bloating, pain on lower left side, trouble going for no 2 and when I do it is burning and feels like stabbing in my butt ☹️ the burning is horrible. I have been given prednisone cream which I’m using but I’m still getting it☹️ I also leak faeces having already been and have a shit stain on my jeans ☹️ there is also blood in there and I normally get blood there on my period which I’m not.

I have taken laxatives in hope of helping it.

The thought of waiting so long with my endo this bad is depressing me and I am sure the medics won’t help me ☹️

I really don’t know what I can do my hubby is saying call 111 because he can see how bad it is but I don’t think they can do anything. I’m at my wits end. ☹️ xoxo

19 Replies
oldestnewest

Aww bless you, have you tried suppositories? It doesn’t help with much apart from clearing what’s in the lower bowel. Personally I found laxative made it too loss and I had accidents.

Do your GP surgery give a number for an out of hours GP? 111 is likely to send you to A&e, the blood is a red flag (I find A & E frustrating as no one understands endo and I end up leaving being made to feel crazy) . Bless you, you’re going through it, I hope things get better real so, call your endo specialist weekly to ask for cancellation appointment, hopefully they can bring it forward?

2 likes
Reply

I know hubby wanted to call 111 but I can’t see what they can do and like you say I find it so frustrating when medics don’t understand endo. I will email my endo nurse and explain my symptoms and I hope she can pass it to my consultant and I can be moved up quicker on my lap waiting list. I think I need an MRI because they are saying it’s superficial endo but my symptoms are suggesting it is deep endo did I mention it was a general gynaecologist who did my last lap so likely they missed it. He said he will operate alone and he’s sure he can get it but if it’s deep he won’t be able to and will book me to have an op with him and a colerectal surgeon which will be another 8 month waiting list to contend with ☹️ it’s a worry.

Thank you for the reply it’s nice to have others understand xoxo

1 like
Reply

Will 111 not give you the option of an out of hours doctor as well? Not just a n e?

1 like
Reply

Thank you.

I will try to go the “right route” via endo nurse/ GP. I’ve emailed my endo nurse and hopefully she’ll get back to me soon. 🤞🏻If I don’t get anywhere then I might I might have to consider an out of hours dr next time it happens. xoxo

Reply

Write letters and push. I did and they finally pulled their finger out. I found an endometriosis specialist and asked to be referred after over a year of intense problems. You have to be a pain in their bum. Other wise they think your ok and wont bother. Keep pushing. They may bring you forward. Yoj clearly cant live like this. Good luck sweetie xx

1 like
Reply

I’m under an endometriosis specialist but the waiting list for my lap is 30/35 weeks 🤦🏽‍♀️ also I’m worried it’s deeper and worse than they think; the general gynaecologist has said its superficial endo but my symptoms are sign of deep endo 🤷🏼‍♀️and the endo specialist said he will do the lap but if it’s deep endo he refer me to an colorectal surgeon for another lap but again I’ll be waiting the same time another 30/35 weeks. It’s ridiculous. I think I might ask the nurse for an mri so they can see the extent of my endo.

I will email my endo nurse and tell her I can’t cope anymore.

Thank you it’s horrible suffering a condition which is misunderstood. I think I will have to keep on and on at them thank you xoxo

Reply

Unfortunately whilst transanemic acid is great to reduce the blood flow it really does not like the bowels, I wasn’t too bad on it )would only need to take a couple on my first/second day but my friend would only have to take one and suffered severely. Really just need to keep pushing gp or kick up to local health board. Once my last MRI results came in (which took a while) I was booked in with consultant, pre ops, plastics and surgery within a month.

Reply

Thank you for the advice it is helpful.

I’ve been on tranexamic acid for last 6 months and been ok but maybe it was the mefenamic acid. I have been taking laxatives with it so thought it’d be ok. I am worried the endo is worse than the general gynaecologist has suggested; if it’s deep endo my endometriosis specialist will refer me to a colorectal surgeon for another lap after the lap he’s booked me in for which will be another huge wait of 30/35 weeks agai 🤦🏽‍♀️ would endo on the rectum area show on a MRI?

My wait for this lap is 30/35 weeks and I don’t know how I will survive that long ☹️ xoxo

Reply

I know this is a *really* annoying thing to hear when endo symptoms are ruining your life but have you considered diet to try and help manage symptoms while you wait for your lap?

I’m stage 4 endo and due a bowel resection in a few months so believe me I can empathise. I’ve also got adenomyosis, IC, Fibro and ME and my bowel symptoms were really bad. I couldn’t leave the house for fear of having an accident. So I started the endo diet and in particular cutting sugar out completely and in about 2 weeks my bowels had got themself back to a state where I could leave the house

I also take Codeine phosphate 30mg which does help regulate my bowels too but this is a little risky as you may get bound up. Xxx

1 like
Reply

I have cut all gluten and dairy out which has helped. I’m so careful what I eat. It’s so hard,

I will contact the endo nurse because I feel more endo is much worse than they think it is. The general gynaecologist who did the lap prior to endo referral has said its “ only superficial “ but my symptoms suggest “deep endo”. I’m unsure what to think. He has said if it’s deep I’ll need another lap with a colorectal specialist and him but that would be another long wait ☹️ xoxo

Reply

Have you considered paying to see a private endo specialist (checking they also work on the NHS) who may be able to refer you back on to their NHS books and cut out waiting time?

It’s a bit of a risk because they may not refer you but if you find a private hospital in your area you can search the consultant and see which one have a speciality in endo. And then once you have found someone it will usually say whether they are NHS too. I’ve done this a couple of times and it has worked for me and others on here xxx

1 like
Reply

The waiting time is for my next lap which will be with an endo specialist; not to see a endo specialist as I’m under one. Thank you tho for the idea. Waiting times are ridiculous when in so much pain! xoxo

1 like
Reply

My referral letter says that if the Dr says I need surgery that the NHS time for this is a max of 18 weeks from seeing the Consultant. I don't know how some places are saying 35 weeks. If you have seen the Consultant then you need to get on to PALS as 30 plus weeks is not acceptable and is breaking the NHS rules. If they cannot fit you in on the NHS they can send you to a Private Specialist. My friend did this and it was the specialist at his Private second job. It may be a fight but it's one worth having.

1 like
Reply

I know but they justify it by quoting “ winter pressures”. They acknowledge their waiting lists are long. The nurse said before the “ winter pressures” their wait was 20 weeks. I am hoping because my symptoms are getting worse they will see me as more urgent on the list. But probably not because I am not dying! I might have to consider doing what your friend did if they insist on me waiting for that length of time. Thank you I wondered how they could get away with such long time frame. The wait starts from when I was referred to my specialist. But even so it’s too long. xoxo

Reply

Try to contact PALS at the hospital and see if they will act for you.

1 like
Reply

I will wait to see what the nurse says; she’s out of the office till Wednesday. I will say to her with my symptoms I need to be seen sooner. If no joy I’ll enquire at PALs and state my symptoms and hopefully they will be able to help. Thank you for all your advice it’s been very helpful 😘 I will not let them make me suffer this long with these symptoms 👍 xozo

Reply

i struggle to do the toilet (No.2) the only thing that has helped me is exercise and orange juice, honestly if i combine these i go once a day or more and i would normally have to get stuff from the doctor.

Reply

Do you buy orange juice at the store or make it own in home?

Reply

In the store and drink alot of it each day!

1 like
Reply

You may also like...