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Endometriosis UK
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Bowel problems, upcoming hospital appointment & don't know what to do.

After a short period away from this page, I'm back as I feel I have no where else to turn.

So briefly my story is - I've been back and forward to GP and seen a consultant in the hospital and they said they think i have endo (no lap done as they wanted to try the coil first) so try the coil, I tried the mirena coil and lasted 11 months with it, my periods got progressively worse on it, i turned into a greasy haired teenager and developed acne. It was obvious to say it wasn't agreeing with me. I also hated not being able to control when I bled as I always tried to time it for the weekend. Anyhoo I've had it out now a good few month and back on the pill Millente and taking it back to back and have a break at 3 months. My doctor suggest i take it until my body bleeds itself, has anyone ever done this? i just feel like i get to the end of my 3rd pack and I NEED a bleed.

My symptoms are the worst they've ever been and now I feel they affect me even when i'm not bleeding. I was diagnosed as having IBS when i was 17, i know what affects my tummy and what foods to avoid now, i've been coping with it for 13 years but over the last 3 months my tummy has been a nightmare. On quite a few occasions where i wasn't bleeding i've had blood in my poo, i'm constantly having diarrhea or loose bowel movements and the pain is horrific. I've also been suffering mucus wise as well. I think its related to endo but does anyone else have the same?

So this year I've been back and forward to my GP and she said we've tried everything and has referred me back to the hospital, i have my appointment on 31st Oct, how do i state that i want a lap? and for them to take me seriously.

10 Replies
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Hi MissM

My heart goes out to you. So sorry to hear of all your suffering and what you are now going through.

I am busy for an hour or two but will get back to you soon.

Meanwhile, have you ever tried the Endometriosis UK helpline? It is only open from 11am to 1pm today if you are able to call now :

0808 808 2227

Have you or your GP considered IBD as well as IBS? Do you think you may have symptoms of Colitis or Crohn's? Their helpline number is:

0300 222 5700

ALSO

Have you ever had blood tests to check your Thyroid gland function?

Have you had a recent gastric bug or food poisoning? Has GP tested a stool sample yet?

Any constipation recently or straining at stool?

I am not medically qualified but have had numerous similar symptoms with bowels.

There is also a Bladder & Bowel helpline number I will post when I get back to you.

xxπŸ₯

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. . . . . . Continued

Meant to ask if your appointment on 31 October is with Colorectal Consultant or Gynaecologist?

Change in bowel habits and blood in stool (in particular) justifies URGENT referal to Colorectal Specialist. You should be seen quickly for this. So if 31st appointment is with Gynae. then get straight back to GP re blood in stools and change in bowel movements.

Also

Have you ever been told that you have Diverticular in your bowels? Ever had Barium Enema investigation? Any possibility of Diverticulitis?

xxπŸ₯

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Hi Mary,

Thank you for your response. I definately dont think its Diverticulitis, I've had that once when I was young and I remember the pain from that.

Yeah my appointment is with a gynecologist but I know that Newcastle RVI does have a endo specialist. I was going to wait until my appointment on 31st and see what they suggest to do with my tummy.

In regards to tummy it wasn't piles as i haven't been straining or anything. When i was diagnosed with ibs i had 2 colonoscopies and they couldn't find anything so said it was ibs never had the barium enema though. I was diagnosed 13 years ago though so things can change.

Thank you for the helpline numbers though i didn't even know there were helplines.

1 like
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Hi again

Have you been having the loose bowel movements for 3 months and the blood in poo intermittently over the past 3 months?

What does your GP mean by 'we've tried everything' she should know that blood in poo requires urge to Colorectal referal.

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Have you had a sigmoidoscopy or colonoscopy to rule out Endo inside the bowel?

You could perhaps use some of the material on this page to make your case if you think is it rectovaginal Endo.

endopaedia.info/subtype14.html

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Hey. This sounds very similar to my endo symptoms. Mine all started from an abnormal smear, Colposcopy and LLETZ which led to excruciating pain, bleeding and awful bowel symptoms from being constipated and rectal bleeding, so many gastro issues to chronic diarrhoea on my period. After endless GP visits, multiple hospital admissions and stays and tests I kept pushing for gyny referral aswell. Was told by a gyny that endo doesn't generally cause this many bowel problems but once I'd been seen by gastro team he'd help me as it was a possibility with other symptoms. Had sigmoidoscopy, colonoscopy, scans, blood tests all clear. Was given ridiculous amounts of antibiotics which has made stomach worse. Was told it was IBS and psychological,eating disorder and even cos I was lonely as live by myself πŸ˜‚πŸ™ˆ But my 1st lap showed endo in March - too much to treat, 2nd lap showed Stage IV endo with bowel and ovary stuck to pelvic wall - was successfully excised, then needed a 3rd lap as adhesions had re-stuck bowel and ovaries again. Am still in pain after the laps and have been told suspected Adenomyosis as well. Not trying to panic you as mine was very severe (endo is all good now and out) and think undiscovered for 14/15 years but if you have had all other bowel tests come back clear then lap should 200% be your next route. Keep pushing your Drs/hosp as you know your body better than anyone! Good luck πŸ‘πŸ’ͺ😘 xx

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I also had rectovaginal endo which can cause the bowel symptoms

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Hi missm87,

Your case sounds exactly like mine. I had terrible bowel symptoms, and it eventually spread to the point it was affecting me before and after my period. I used to be keeled over on the floor unable to move except to drag myself to the toilet. GP kept saying it was nothing until one day I saw a stand-in GP and he mentioned the word endometriosis.

Long story short it took over 2 years of appointments (including seeing a gynaecologist privately) to get referred for a laproscopy. Finally diagnosed severe pelvic endo, massively affecting bowels. At the time there was much knowledge of BSGE clinic so I saw a general gynae and they weren't qualified to remove any of it. Their solution: take the contraceptive pill for months on end. I told them the same thing, after max 3 months I NEED to bleed - he couldn't understand it either - well he/she doesn't have to! You listen to your body.

I agree with the comments below, with the blood in your stool you should have been referred for an urgent appointment with a specialist. As your app is with a gynaecologist I would go back to your GP and get a second referral specifically for that. In regards to your gynaecologist appointment, insist they do the tests required, before any laproscopy, to try and determine what it might be: things like a CA125 test (elevated levels CAN be a sign of endometriosis) and even an MRI (with contrast dye) - this can detect an abnormalities affecting organs other than the uterus. The bowel and menstrual organs are not seperate when it comes to endometriosis.

Be prepared that the first laproscopy may be diagnostic only. And depending on what they find you may be fobbed off after with plenty of pills to take but do not settle for that. Just pursue the laproscopy for now, or at least tests to get more answers, and once you have those come back to this forum and I'm sure people will come back to you with advice.

Take care of yourself and I hope you feel better soon.

Mary

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HI, thank you everyone who replied. The blood in my poo hasn't been a constant thing but it happened for a week the last time. I haven't actually told any doctors about it yet as I'm really worrying that if I tell them about my bowel issues they will dismiss my womb issues and just say its IBS. 2 and a half years ago i had a scan i think to look for cysts and what not and they couldn't find anything but they made the comment that my bowel was very active and that was the issue and that i should go on and just get on with life! and i did and now i'm in this mess.

I have my list of symptoms to go and see the gyn with and they are in 2 categories

On Period

- excruciating bowel movements to the point where i don't want to go

- Sharp pains up bum

- tailbone feels numb/painful sometimes cant sit

- cant walk due to pain

- day 2 and 3 are the worst

- bleeding stops after day 3 but pain doesn't, feels like i'm perioding but no blood

- diarrhea on days before and days after

- constant pain up vagina feels like i've been kicked

- nausea

- blood in poo sometimes

- bloating

- weeing isn't painful but having a full bladder is uncomfortable

Not on period

- sharp pains now and then up vagina and sometimes bum

- diarrhea

- blood in poo (not regular)

- random shooting pains in my side

- mucas in poo

- pelvic bone aches

- sex hurts

-bloating

So do i just wait till i see the gyn for my appointment on 31st and tell them about my bowel issues or do i go see my GP before that and maybe put in a poo sample (freaks me out) to make sure the bowel thing isnt something different?

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Sorry you are going through this. Obviously we are all different but your symptoms sounds pretty familiar. For me, Mirena was a disaster and the pill doesn't help. I struggled with terrible periods and IBS like symptoms from my early 20s through my mid 30s. Finally I found a surgeon who diagnosed endo and had surgery. Now not only do I not have awful period but I also don't have diarrhea on a regular basis.

If the primary cause of your symptoms is endo and you have been through the other treatments then state your case and don't let anyone minimize your pain or other problems if what you really want and need is the lap. It sounds like you are getting to see the right Drs so good luck!

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