Long lasting rectal pain. : Hi needing help... - Endometriosis UK

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Long lasting rectal pain.

TwilightSparkle profile image
14 Replies

Hi needing help and advice. I have Endo on the bowel and suffer from other ailments but most worryingly I suffer from really severe rectal/anal pain after every BM. I was wondering if anyone has this? And if so how do you cope? Are there any cures. Been to doctor numerous times, but no help whatsoever. The pain is unbearable, I can’t cope with it any longer. Any help would be really appreciated. Thank you.

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TwilightSparkle profile image
TwilightSparkle
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14 Replies
Char411 profile image
Char411

I have suffered this, mine was due to having endometriosis all over my rectum 😳 it felt like I was passing bricks full of razors, sorry to be blunt. I would also get stabbing rectal pain at random times like sat at my desk or walking around Tesco, that often felt like a lightening bolt and the amount of time those bolts lasted started to increase. Since my lap luckily it’s subsided quite a lot, i still suffer mildly on odd occasions but nothing like before. Sadly I didn’t find anything to relieve the pain other than surgery.Good luck xx

TwilightSparkle profile image
TwilightSparkle in reply to Char411

What surgery have you had .? How did you get diagnosed. ?

Char411 profile image
Char411 in reply to TwilightSparkle

You need to see a gynaecologist and they need to refer you for a laparoscopy, which is surgery that will confirm and treat endometriosis. You need to get your GP to refer you to a gynaecologist or pay for one privately if you don’t want to wait months for the referral. You just have to be pushy with medical professionals to be taken seriously sadly, I’m sure it’s happened to us all on the group prior to being diagnosed

TwilightSparkle profile image
TwilightSparkle in reply to Char411

I have been diagnosed with Endo . When I was 31 . I’m 45 .now . I have had half my bowel removed and I couldn’t have any kids . I got a laparotomy in 2007 . In 2014 I had had this pain in my rectum daily . No one wants to help . Doctors or hospital . It’s now 2019 and I’m no better . Thank you

Char411 profile image
Char411 in reply to TwilightSparkle

Oh you poor love, they have to do something they can’t leave you in pain. Endo regrows so you may have it in your pouch of Douglas and rectum which could be causing the rectal pain

Katinldn profile image
Katinldn

I suffered with this too. I had endo amd adhesions in the pouch of Douglas which caused my rectum to be wound up like a ball of string. Every bm was absolutely agonising, I would bleed heavily and at times just sitting down was excruciating. Sadly, the only thing that resolved the problem was surgery and since then I haven t experienced any more symptoms. I hope you get the treatment that you need. Are you seeing an endo specialist?

TwilightSparkle profile image
TwilightSparkle in reply to Katinldn

So glad u replied to me . Can you tell me what surgery u had ? If u don’t mind . I’ve had this from 2014 . I suffer every day . Thank you

Katinldn profile image
Katinldn in reply to TwilightSparkle

You poor thing. It is truly awful! I had mine removed by lap, but with a gyne and colorectal surgeon who both specialised in endo. It took me 7 years to get to that surgery though. I was referred to gyne’s (non endo specialists) and bowel surgeons and despite me telling them that I felt like my endo had returned (I had already had 4 laps prior to this for endo removal), no one would believe me. I had various tests (colonoscopies and MRI’s) but it didn’t show. It was only when I explained my symptoms to someone who understood endo that they gave me the lap and found the mess I was in. Who diagnosed your endo? Have you been seen by an endo specialist? Sadly, the only option is surgery xxx

TwilightSparkle profile image
TwilightSparkle in reply to Katinldn

Thank you . I also had a bowel surgeon and a gynaecologist do my surgery . In 2007 . It was open surgery . I was told there is no Endo specialist in Scotland . I have severe rectal pain after every bm . Since 2014 . What surgery do u think I need . Sorry I’m new to this . I need to talk to ppl about it now .as docs don’t care . Xx

Katinldn profile image
Katinldn in reply to TwilightSparkle

I wouldn’t want to speculate about what type of surgery, but with the exception of my hysterectomy, all of mine have been done by a lap. Have a look at the endo uk website as they have lots of really useful information and a helpline that you can call for support and advice endometriosis-uk.org/

There appears to be some support groups running around Scotland too so they would be able to advise you on who the specialists are. My endo returned multiple times and has you had it previously, it’s likely that it has returned xxx

TwilightSparkle profile image
TwilightSparkle in reply to Katinldn

Yes thank you . I think it has returned . I wish u well . And will look into support groups . Xx

Katinldn profile image
Katinldn in reply to TwilightSparkle

Good luck! Really hope you get the treatment that you need and are feeling much better soon xxx

TwilightSparkle profile image
TwilightSparkle in reply to Katinldn

I’m not seeing anyone . I went to e and a . And they laughed at me . No one wants to help .

ccsmith profile image
ccsmith

You poor thing I’ve had it on & off for 8 years. I’ve had 2 laparoscopies which eased things but I’ve been told I have a large module close to my rectum. I’m due to have a hysterectomy and party bowel resection to hopefully help. I’m on zoladex which has reduced the pain considerably but took 7-8 months to help the bowel. I also get urgency so usually ho quick when I need to go. It’s worse if I’m dehydrated. I would insist on seeing a gynae consultant who specialises in endo. You need surgery I’m aftaid. Don’t let it go on xx

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