New here! Anyone with bowel endometriosis? PLEASE HELP!

[polysci1977]

Hi all, I am new to this community and want to share my story to see if anyone can relate or help me find answers. I am 19 years old and have had rectal bleeding ONLY on my period for four months now. I had an incident almost a year ago when I bled from my rectum right before I started my period and just figured it might have been coincidental with a hemorrhoid or something. I just wrote it off. But now the rectal bleeding starts exactly at the same time the blood flow from my period commences, and this has done so for the past four months, like I said. The actual blood flow amount from my rectum is the equivalent amount to the blood that is exiting vaginally. For example, when I begin my period, the bleeding is VERY heavy from both end, and toward the end, it reduces just as my vaginal bleeding does. The cramping is so bad as well that I am almost debilitated but I have learned to fight through it and keep going. Last month I bled through my shorts and had two distinct blood stains, one from the vaginal bleeding, and one from the rectal bleeding. The rest of the month, there are Z-E-R-O traces of blood from my rectum. Now the month before I noticed the rectal bleeding, my periods began to be very inconsistent, and I almost missed one entirely. Now my bowels have always been a problem for me for as long as I can remember. I've struggled with constipation and the cramping always has gotten worse around the time of my period. I have extreme gas and bloating and diarrhea often happens mid-cycle after the bleeding starts. I will only have a bowel movement at MOST 3 or 4 times A MONTH... yeah, I know.

I've been to my gynecologist, and she referred me to a GI doctor who ordered a colonoscopy of course to rule out Crohn's or ulcerative colitis. The doctor found nothing but a few small internal hemorrhoids and sent me away with an IBS-D diagnosis. Shocking, right? Especially considering that I struggle more with constipation. Anyway... the GI doctor said that my hemorrhoids just get irritated when my period starts because the blood vessels get dilated more so that's why I bleed only on my period. When I suggested endo, he pretty much just rolled his eyes and flat out told me that "rectal bleeding doesn't occur with endometriosis." LOL. Sure, hemorrhoids that never bleed except for when I start my period is a good explanation, but I don't entirely buy it. I don't want to be one of those patients who have to struggle through their symptoms every month because of an IBS misdiagnosis.

So I went back to my gynecologist and she ordered a vaginal ultrasound and placed me on a low dose birth control (tri-lo-estrylla) to control the heaviness of the bleeding. When I had the ultrasound done, the technician had a very hard time finding my left ovary. It took her a while to locate it, and I'm not really sure if she ever really was able to get a good image of it. She said she did, but I felt a nervousness about her. She found the right side with no problem. I'm afraid she was scared she was messing up or something and didn't want to ask for help or an opinion.

I waited a few weeks until my next cycle to begin my birth control. But right before I started, I noticed a large abscess left inside wall of my vagina. It felt like a large marble. So, I went back to my OB/GYN and she examined it, and said she didn't want to mess with it because it was very close to my urethra and wanted to make sure it had no urethral involvement. It was so large that my urine stream was shooting directly backwards. So here I go to a new doctor, my urologist. He performed a cystoscopy and a CT scan, and did not see any urethral involvement. He concluded it was just some type of vaginal cyst and put me on antibiotics. It eventually popped on its own after a week, but my wall still feels inflamed on the side where it was located. I told him all about my frustrations and what did he bring up? ENDOMETRIOSIS! He said he would consult with my OB/GYN and she would have to follow up with me.

It's been a month and I've been through my first pack of birth control. On day two of my placebo pills, I began bleeding heavily and the rectal bleeding started AGAIN with an incredible amount of cramping. It's been ongoing for days now. I can't wait to start my active pills so maybe this will stop. I have a GYN appointment soon and I might just have to ask for a laparoscopy myself just to rule endo out. I'm tired of wondering and being left with hardly no answers and not being taken seriously.

So this is my story, and if you've stuck with me this far, I appreciate you hearing out my journey. Has ANYONE had a similar experience and have been misdiagnosed or felt unheard? Please let me know. Anything helps.

[jjeemm]

Hi there

So sorry you're suffering...it definitely sounds like you've got rectovaginal endometriosis. I've had exactly the same symptoms as you - rectal bleeding with mucus every time I have a period, excruciating pain passing a bowel motion or passing wind, extreme bloating, cramps, etc., etc.

When I went to see my GP she thought I must have bowel cancer and referred me to a bowel specialist. Over the course of 2 years I had various tests performed, including a very painful colonoscopy which revealed nothing. In the end I was just told I had constipation and advised to take Dulcoease on a regular basis (I stopped taking this over 2 years ago because it was actually doing more harm than good).

Finally, a year ago I found some information about endometriosis on the internet and asked my GP to refer me to a gynaecologist. My GP admitted that she knew nothing about the condition. Eventually (after various lost appointments and other hospital failings) I had a diagnostic laparascopy a month ago which confirmed endometriosis on my bowel, as well as everywhere else. Tomorrow I'm going to have an MRI scan and then I'll need further surgery with a team of gynaecologists and colo-rectal surgeons to remove all the adhesions.

In my case I've been putting up with the horrendous symptoms and misdiagnoses, delays in treatment, etc. for far too long (I first went to my GP to complain about gastro-intestinal problems back in 2003). If I'd received a proper diagnosis I wouldn't be in the mess that I'm in now. I would strongly recommend that you ask your GP to refer you to an Endometriosis Centre: bsge.org.uk/centre/ as soon as possible. I've read and heard from other women that the longer you leave it, the more likely it is that your symptoms will deteriorate - in some cases permanent damage to your bowel can be caused.

It can be incredibly frustrating waiting on people in the medical profession to refer you to the right person, but you mustn't give up!

Wishing you the best of luck in your journey ahead.

[Hidden in reply to jjeemm]

Your story sounds all to familiar to me jjeemm! Are you under the care of a BSGE centre now?

[jjeemm in reply to Hidden]

Hi Pj74

Many thanks for your message....I'm really sorry my story sounds all too familiar to you too!

Yes, in fact my local hospital just so happens to have an accredited Endo Centre but although the first person I went to see last year is supposed to be an endometriosis expert, I haven't had the best of experiences, unfortunately! During my first appointment to see the endo specialist, I was almost completely dismissed and sent away by the trainee doctor who vetted me before seeing the specialist (the trainee doctor clearly knew nothing about endometriosis and insisted I must have a bowel problem). Then after I insisted on seeing the specialist, I was given a digital examination and told that I probably did have endometriosis. I was told an appointment for a laparoscopy would be made, but it never came through. I was given a prescription for mefenamic acid and tranexamic acid, but hormone treatment wasn't suggested at all.

After 4 months I went to see my GP to ask whether or not I should chase up the appointment - did I really need a laparoscopy? She advised me not to have one because it was pretty nasty and maybe the best advice would be to just wait for the menopause (I was 48 at the time). No-one ever told me that my condition might be severe or that I really should have the laparoscopy because it's the only way endometriosis can be properly identified. I was never told that just leaving the endometriosis on my bowel wasn't really an option.

4 months later and I went back for a follow-up appointment. Again I saw a trainee doctor (a different from the one before) who asked me what kind of treatment I wanted. Honestly....perfectly true. When I asked her what she'd recommend, she said she didn't know...possibly I could try the Mirena coil, but it's got lots of nasty side-effects and I might not get on well with it...basically it was 'up to me'...'what suits one person might not suit someone else'. So I left thinking, what was the point of that?

Finally, after feeling like I just can't go on any further with this relenting and totally debilitating pain every month, I went back again this August and this time saw the original endo expert. She actually laughed when I said I'd decided to ask for a laparoscopy and said 'I'm really surprised you've waited so long to have a laparoscopy...you must have a very high pain threshold given that your endometriosis is obviously so severe'!!!!! Really??!!!! She then blurted out that given my age she'd strongly recommend that I have a hysterectomy. This was before she'd even performed the laparoscopy to confirm where the endometriosis is and how widespread, etc.

So, anyway....now that I've finally had the laparoscopy which has confirmed that I have endometriosis everywhere: whole of the back of the cervix stuck to the sigmoid colon, 'obliterated' pouch of Douglas, 'obliterated' utero-sacral ligaments, 3 cm nodule in pouch of Douglas, ovaries stuck to ovarian fossa and adenomyotic uterus...all I really feel is angry. Not only was I fobbed off for years by GPs, but even when I apparently saw 'the right person' nothing was properly explained, I wasn't given the right advice, my treatment has been delayed and I feel I've been treated in a really insensitive way...I really don't think it's at all acceptable to just blurt out to someone that they should have a hysterectomy...it's supposed to be the absolute last resort when all other treatments have failed...And I've read that where endo is found on the bowel, a hysterectomy won't be of any use in getting rid of it anyway!!

So...as you can see, even at accredited Endo Centres, I'm really very sorry to say that you may still have to push hard to see the right people and you obviously have to do your own research to make sure that you're given the right treatment.

Since then I've asked to see another consultant at the hospital...I'm just hoping that I'll have better luck with someone else...

Sorry about the lengthy post!!!

Wishing you a speedy and accurate diagnosis and effective treatment under the care of someone really good!!!

[Hidden in reply to jjeemm]

Oh my goodness that sounds like a horrific experience, it really isn't acceptable, and I really hope you have better luck with your next consultation xx

[jjeemm in reply to Hidden]

Hi Pj74

Very many thanks for your kind reply...yes, unfortunately too many of us have far too many hoops to jump through! At least you're ahead of the game and you've spent time reading up on the condition...it's really, really wise to conduct your own research. I wish I'd done the same thing years ago. Unfortunately I just didn't have the time and I honestly trusted medical opinion....big mistake!!! I think anyone with this condition really needs to do as much research as possible and go along to appointments and consultations with photocopied documents etc. showing the experts that we're not ignorant, we know our stuff and we will NOT be fobbed off and misled!!

Wishing you all the best in your journey ahead - hope you get to see someone with real expertise who can provide the best possible care for you, xx

[Hidden in reply to jjeemm]

I've done so much research I feel like I could write a PhD! Unfortunately this has also taken over my life for the last 18 months or so, I just can't stop myself to the point it's getting obsessive! I have also read about NHS 18 week referall to treatment targets, that stipulate patients have the right to definitive treatment within 18 weeks of referall to a consultant led service, well here I am over a year later, with not even a diagnosis let alone any treatment! I had to push to even see a consultant, cos they just kept sending me for test after test without really talking to me. It took me going back to my GP in tears, for them to chase it up for me, as I was literally at the end of my tether with the lack of progress and communication 😏

[jjeemm in reply to Hidden]

I can REALLY relate to that!!! I'm sure you COULD write a PhD now - you probably know an awful lot more about the condition than most doctors!! I'm now exactly the same as you...I'm trying to read up as much as I can about the condition because I just don't believe I can trust anyone to have the necessary expertise...but, yes, it IS becoming a bit of an obsession ;)!!!

I'm SO sorry that you've been driven to tears...absolutely awful!! Have you been referred to a BSGE Centre yet? The NICE guidelines for endometriosis state that your GP should refer you to a proper centre of care: nice.org.uk/guidance/ng73/c....

Please don't stop pushing until you see the right person...if necessary go to a different GP...they really have an obligation to refer you to a specialist centre! If I were you, I'd phone the GP surgery on a regular basis to make sure that a referral has been sent. Tell them about the 18 weeks waiting target and say that you're not prepared to wait any longer!! Honestly, sometimes the only thing you can do is get really bolshy and tell them that enough is enough!!

I really feel for you...these experiences really are unacceptable!!!

[Hidden in reply to jjeemm]

I haven't been referred to a BSGE centre yet, as I was initially referred to colorectal surgery due to rectal bleeding, they had to rule out more sinister GI pathology first (even though they STILL havent managed to do that yet!) It's only within the last week at my millionth flexi sig that they've actually considered/acknowledged this could be endo related, they took further biopsies, even tho previous ones have been non diagnostic, so I guess I have to wait for results of that before they decide what to do next 😏. To be fair my GP has been quite good, they did chase things up after they saw how upset I was, and I had a consultant appt within a couple of weeks. Had I not gone back to my GP I might be still waiting slowly going insane!

Thanks for your understanding and support anyway, at least I know I am not alone, it's just unacceptable that so many ladies are having such poor experiences ☹☹☹

[jjeemm in reply to Hidden]

Hi Pj74

Yes, it's so good that forums such as this one exist...you do feel you're going insane when no-one tells you anything or listens to you and you're suffering. It's fantastic to feel that we're not alone and we can support each other by sharing stories and offering advice etc.

Yes, your journey sounds so similar to mine - being referred to the colo-rectal people even though clearly your bleeding is cyclical and you should be seen by a gynaecologist...and not just any gynae...please don't waste your time seeing someone who has no expertise in treating endometriosis..ask to be directly referred to an Endo Centre and if preferable, ask to see the lead consultant.

Just been for my MRI scan today...apparently it will be a 2-week wait before I'm informed about the results...sigh...

Take care for now, xx

[Hidden]

Yep can totally relate! Bowel endometriosis CAN cause rectal bleeding, although it is rare. I have done a LOT of research on this, having been going through a series of tests for rectal bleeding. I have also had one colorectal consultant fob me off saying it was likely piles, to another one saying they couldn't rule out a type of cancer, only now has one taken notice of my cyclical symptoms and agrees this could be bowel endometriosis. Am now waiting for 3rd lot of biopsy results. It's driven me to distraction over the past year but I hope now I might be getting somewhere and can get a sensible diagnosis and treatment!!

[Hidden]

Sorry polysci1977 btw, me and jjeemm seem to have totally hijacked your post 🙊 xx

[deedeeme]

I don't want to scare you but most doctors don't know about neuroendocrine tumours. The symptoms are the same as IBS. My daughter has recently been diagnosed. It might be a good idea to get to an endocrinologist as soon as possible. Good luck!

[Si_84]

Sorry to hear of your struggle with this. I have severe endometriosis and I have it on my bowels. I have rectal bleeding on my period I get it during and after and one some occasions have had it at random between cycles. Don't quit trying to get the correct diagnosis like many women have said on here ask to be referred to a specialist endometriosis centre, a kind lady on here advised me this today and my doctor straight away referred me I'm looking forward to finally hopefully getting a consultant who fully understands my pain and can help control my pain and fingers crossed I can get pregnant!! I wish you the best of luck!! Take care x