Suspected Endometriosis

[KB1987]

Hi just wanting some advice. Im on a waiting list for surgery, already been waiting 5 years. The newest symptom for me is extreme pain during bowel movement normally two days before period, its like passing sharp glass with a sharp stabbing pain going down my GI tract I think. My recent scans all came back normal apart from a cyst on right ovary. This bowel issue is really worrying me as it happened again on Saturday and this morning. Alot off my other symtoms seem very Endo related, as they normally start after ovulation and last right up to my period

[TennisCourt]

Hello lovely! When I first started having painful bowel movements it really scared me, so here to say you’re not alone, I think I may have done a post about this previously to get reassurance myself.

For me my most painful is during my period and post period. I flare really bad after my period in general.

I personally get the worst pain in my bum when going to the toilet!!! It can be embarrassing to talk about if people don’t understand.

Sometimes it feels like something is stuck up there, so of course when you’re trying to go to the toilet, to me it feels like something gets in the way. I call them struggle poos!!! I can spend over an hour sat there slowly going bit by bit as I physically can’t make myself push properly knowing it really hurts. And I know I really need to go but I just can’t get it out!

I even went to the doctors once and asked her if my bum is falling out I was so worried!! It’s not lol and I’ve had a colonoscopy and that was totally clear so I feel it’s Endo personally.

I also get pains in my stomach when having these struggle poos and I feel sooo sick after most of my bowel movements.

Bowel movements aside. I really struggle with pain in my bum probably 90% of the time in general. It used to be sharp and stabby pains but now it’s a consistent dull pain. When I’m flaring I can feel the gas travel through my stomach (it’s so painful) and then hit my bum and it would have me on my knees!!!! I always say I can literally feel the gas moving in me and I can feel it like hitting everything most days it’s very odd.

I’m due my first surgery 19th Dec, I think I have Endo on my bowel and rectum based on my symptoms.

Happy to chat further xxx

[KB1987 in reply to TennisCourt]

Aww thank you so much for the reply lovely. I had a second bowel movement today and it was still excruciating, like passing sharp glass. This is so unusual for me as its normally prio to my period every month. Then today I've been flaring pretty bad since my bowel movements, like my usual sharp stabbing pains and burning sensations below my ribs and in my pelvic region. I actually think I've a fissure now from the extreme pain while opening my bowels. I'm back on the list for surgery but been told its going to be another few years. I'm so sorry to hear you are going through such a bad time too. Its bloody awful as no-one else seems to understand our pain so I'm always here for a chat if you need it. Good news about your surgery date altho your probably still very anxious as surgery can be very daunting xxx

[TennisCourt in reply to KB1987]

is the pain like deep or more at the entrance? Like you say may be a fissure or haemorrhoids from straining. Sudocrem helps if I get a bit sore!

Oh gosh a few years! My area for NHS list was 18 months so I’ve ended up going private.

It is absolutely awful isn’t it. Thank you so much I can’t wait for some validation and answers tbh! Xxx

[KB1987 in reply to TennisCourt]

It's so hard to know if it's deep or at the entrance but omg my bum is so sore from those painful movements today. It even hurts to sit. I've been taking stool softners and alot more fibre today too see if that helps the next movement. Thank you so much for the the tip about the sodo cream. I asked my gynaecologist if its worth going private and she said no. She wasn't very helpful at all tbh as my pelvic scans were clear apart from cyst on right ovary.

Yes it will be so good to finally get some answers and get it treated and hopefully get relief xxx

[TennisCourt in reply to KB1987]

My gynae and GP were useless. I took it upon myself to find a specialist in my area(ish 90 mins away) and researched her. If you look on the bsge site it lists specialists for endo.

I made a consultation with her in August, it cost £170. She was absolutely amazing, listened to every one of my symptoms, had patience as I went though all my notes, showed her my irregular bleeding patterns I track etc. she straight up said sounds like Endometriosis, next steps is surgery. She put me on NHS list with her and it was 18 months so I opted private and spending my savings on it.

I’ve heard many of stories of people trusting general gynaes and they do a rubbish job in surgery etc.

So maybe look for a specialist near you, at least worth a chat? And then you can always get put on the NHS list with them 😊 x

[KB1987 in reply to TennisCourt]

Think I'll have to do the same. I'll look up that center. When I woke up this morning I had that horrific gas pain that felt like it was going through my intestines right down into my pelvic region. It was so painful it brought me to tears and ive that horrible feeling as if something is stuck up my bum. I feel pretty blocked up. I'm going to take a laxative and give myself a good clear out too see if that helps.

Thanks so much for all the advice lovely xx

[Princesskittycat in reply to TennisCourt]

Hi, how do you contact someone from that list? Sorry if that’s a stupid question

[Starry1977]

I had pain going to the toilet, up the bum but also really low down in pelvic area. My ultrasound only showed a endometrioma. What it didn’t show until my lap was that my ovaries were stuck together behind my rectum and I had endo on my bladder wall. All of this was causing pain when I went to the loo. It’s much better after surgery.

[KB1987 in reply to Starry1977]

Thanks for the reply. Yeah I think scans only show deep Endometriosis and then again it would depend on the location off the Endometriosis as the pelvic scans only show so much. I thing that stood out to me during my internal scan was that she really struggled to find my ovaries as they were hiding behind my bowels and she had to really move the probe around to try find them. I thought that was abit strange and she just said it might be because you need a bowel movement even tho I definitely didn't as I already went that morning before my appointment