Bowel Endometriosis?

[kiisa]

Hello there.

Some background info about me: I'm a 23 year old female with fertility problems that run in the family. We have a history of PCOS - My sister has it. I would like some help from women who have experienced bowel symptoms related to endometriosis/have endometriosis or bowel endometriosis or maybe have gone through a similar situation to mine?

I have been having very erratic bowel symptoms for over 2 years now. I have seen a Gastroenterologist - had a colonoscopy and an MRI scan among other tests, such as calprotectin and microbiological stool tests. - All clear, no evidence of inflammatory bowel disease. Doctors suspect it is probably IBS (because they have no idea what else it could be)

My symptoms (and sorry if too detailed, but necessary to explain):

- Sudden, explosive diarrhoea (mostly after eating, sometimes randomly)

- Extreme abdominal cramping randomly or after eating

- Occasional rectal bleeding (maybe due to anal tearing)

- Extremely noisy, gurgling noises after eating which usually indicates I am going to have diarrhoea (random - not triggered by any specific foods)

- Diarrhoea or bowel movements seem to be more frequent during menstrual period

- Lower back pain

- Specific stabbing pain on the right side of my stomach near the belly button that comes and goes randomly (but always in the same exact place)

- Chronic fatigue - sometimes too exhausted to get out of bed, shower etc

- Extremely low B12 not due to dietary lifestyle (Possible malabsorption problem? Was having B12 injections but because of COVID-19 I have been pushed onto oral B12 supplements)/ low-ish iron levels which were not of immediate concern

- Long term sufferer of mental health issues throughout life from being a child - anxiety and/or depression

- Pain in the legs - usually right thigh or back of calves (very random, not due to over exertion or exercising)

- Usual menstrual cramping and/or being woken up from menstrual cramps

- Sudden lack of sex drive (thought it was due to my contraceptive pill, so I stopped taking it and it hasn't made a difference whatsoever)

- Very deep, intense stabbing pain in the pelvic/uterus region during a bowel movement (random, but recently happened)

- Pain during sex (always in the same spot/area?)

My sister and I initially suspected if I could have PCOS because it runs in our family and I am quite hairy, have/had suffered with acne for over 10 years which was not treated successfully by anything but Isotretinoin. I was supposed to have a transvaginal ultrasound - which I never received the appointment for - so I never ended up having this. I brought up my symptoms relating to sex, my period and my pelvic pain to my Gastroenterologist and he said he would have to refer me to Gynaecology and said it could possibly be endometriosis.

I have recently (in the last 1.5months) been put on 100mg Sertraline and I take B12 oral tablets. I am supposed to take Mebeverine 3 times daily before eating.

Have any of you had any similar experiences to this? I don't really have problems with my periods - except they are sometimes heavy during the first few days but not extreme. I don't have intense pain during my period to the point where I have to stay in bed. However, it is enough pain for me to have to take painkillers (usually 30mg cocodamol). What made you suspect that you had endometriosis and when did you finally get your diagnosis? Can bowel endometriosis or endometriosis be missed during MRI/CT scan if it is deep endometriosis?

[Moon_maiden]

The first few are very familiar. If you have endo in the bowel the gynaecologist will be able to see it on the MRI, possibly CT, not quite sure. If it’s potentially superficial endo you’d need a laparoscopy for best diagnosis.

The consultant will need to have endo experience.

I was diagnosed in December, thought superficial, lap Feb, discovered it was in bowel, recently confirmed on MRI and radiographer said he could see it on CT scan at the end.

Is the gastro definitely referring or do you have to go back to GP?

Hope you get it sorted soon.

[kiisa in reply to Moon_maiden]

Hey thank you for replying

Is having a lap for diagnosis common?

I had a MRI of my small bowel, do you think it would’ve shown up there if I had any growths on the small bowel?

My Gastroenterologist said he was going to write to my GP to put a referral to the gynaecologist but because of the covid-19 situation, I have no idea if it’s been put on hold or if they even know I need a referral now.

I’m glad you managed to get a diagnosis, not knowing is the worst when you have an obvious problem.

[Moon_maiden in reply to kiisa]

You’re probably best to ask GP sooner than later, unfortunately you have to sometimes chase things or they won’t get done. Referrals are being accepted, there will be delays due to covid, always worth checking occasionally for cancellations.

A lap is the only really way of confirming at the moment.

It’s not a diagnosis you should leave for any length of time. I wasn’t expecting the diagnosis as I’d gone to discuss fibroids, for some reason it got worse longer down the line.

If you get online access to your records you can keep an eye on things like if referrals have been done.

[Ollie2512]

So I’m 38- stage 4 endo of bowel, bladder, pouch of Douglas, ovaries, etc.

I have upcoming major surgery in a month which now includes a bowel resection of my bowel endo. This is pretty major.

I have almost all of your symptoms plus a few others.

Having to take cocodomal for period pain is common but not normal. Your symptoms suggest to me bowel endometriosis. I have had 3 colonoscopies for my symptoms incl rectal bleeding. Colonoscopies all clear apart from a couple of polyps.

I’ve had 2 mri’s which didn’t show it. But then my endo specialist diagnosed it on pelvic ultrasound (it had also been diagnosed by one of my previous endo surgeons- I’ve had 3 endo surgeries)

It can only be diagnosed properly by laparoscopic surgery and by an endo specialist. Can you ask your gp to refer you to an endo specialist?

[Renee2 in reply to Ollie2512]

Hi Ollie2512,

I’ve had similar done a while ago. Hope your surgery goes well. Take care.

[Ollie2512 in reply to Renee2]

Thankyou for your lovely wishes. May I ask how your surgery and your recovery was? I see the bowel surgeon tomorrow to discuss complications etc then he will plan the surgery with the endo surgeon.

[Renee2 in reply to Ollie2512]

I’d like to pm you, if that’s okay?

[Lex4 in reply to Ollie2512]

Hi Ollie2512,

Can I ask what led you to decide on this surgery (was it recommended or did you push for it?). I had second lap just before christmas but the follow up consultation hasn't happened because of COVID. I was still a bit out of it with the anaesthetic, but rememember from the hospital that my surgeon basically said there was nothing more he could do keyhole and that he'd not managed to remove as much of the endometriosis (stage 4 like you) as he'd hoped because 'there was a lump of scarring as hard as bone' joining my bowel, ovary and bit of uterus together. He mentioned he could refer me for open surgery, but said this was significant surgery with more risk, but I don't know any more about it. My symptoms are gradually creeping back worse and worse, to the point where I think I need to explore the options I have left, but I don't really know what they are! It sounds like your planned surgery might be something similar to what he mentioned: is there anything you can refer me to or more info that might be helpful?

TIA

[Missionofendo]

Yes I had my op 2 years ago and had endo around the bowel and bladder it was a 4 and 1/2 hour operation.

I’ve suffered with a lot of the symptoms you mention.

You need to have a lap done for a clear diagnosis and don’t give up until you get it took me years for mine!

After the op I lost weight / stopped having the terrible pain issues and general health improved a great deal with much better bowel movements.

I also take a strong b complex try and take one with high b12 Included.

Ive also needed iron infusion due to the amount of blood loss I suffered with my monthly periods.

Goodluck x

[Renee2]

Hi Kiisa,

I’d try to see a gynaecologist who specializes in endometriosis. Many of your symptoms sound familiar to me and I have bowel endometriosis. Hope you’ll get help soon.

[gemmascho79]

Yes to the bowel issues, but in addition to Endo (diagnosed 15 years ago) which does cause issues in that area because of adhesions. I am also coeliac. Have you have a screen test for that?

[kiisa in reply to gemmascho79]

I was tested for coeliac and it came back negative.

[Kater66]

Absolutely sounds like it. Be sure that many, many others have gone through similar and had doctors tell them all sorts of dismissive things without fully understanding the condition and how debilitating it can be especially if left untreated as mine was.

I was eventually lucky, aged 40, to have a gynae doctor who spotted what I had - after infertility treatment and lots of pain, intense pain for 24 hours hours every month since being a teenager. Bowel movements were crazy during periods. Also terrible acne. Pain during sex making me want to throw up. She referred me for (keyhole) hysterectomy surgery which took about 6 weeks to recover from - ever since I have been pain free and life is so much better.

Interestingly when they removed my uterus, although there were a few adhesions to the bowel, they did not have to remove any of the bowel itself.

Endo and the drivers for it is still so misunderstood - my adult onset asthma improved markedly after surgery too. The auto-immune system is so interlinked....I was diagnosed last year with Mast Cell Activation Syndrome which apparently has a high correlation with Endo.

Anxiety has cyclically been an issue for me too

& now suspect mould toxicity as a possible trigger....investigations ongoing.

Hopefully you can get to the bottom of all of your issues and resolve them before having to undergo surgery

Wishing you all the best x

[kiisa]

Wow thank you guys for all of the replies, I didn’t expect this many. All of you have been extremely helpful and I’m definitely going to push for referral. I hope you are all doing well xx

[annieorrell]

Hi, I have similar issues and I have been diagnosed with bile acid malabsorption along with endometriosis. There’s a really useful website called Bad-uk. I take Cholestogel which really helps, in fact I dread to think how I would manage without it!

[Noodle1984]

Please keep pushing. I am 35 and have suffered from severe ibs for 15 years. I just had surgery to remove stage 4 Endo on my bowels. I was lucky I didn’t require an ostomy bag but it was so severely attached it took 3.5 hours. On the inside my rectum has fused itself to my vagina. Most of my Endo was in that area. They were able to see it on trans vaginal ultrasound by a Endo specialist. I haven’t had a regular period for a couple of years because we’ve used medication to stop it. But I used to get the most sharp severe shooting pain up my rectum whenever I would have my period. I used to have non stop diarrhea so bad I would have to go 6-8 times a day. I have adjusted my diet to an anti inflammatory diets, do pelvic physio exercises daily and get trigger point injections.

Make sure to get checked out as it doesn’t get better with time. I wish I would have pushed harder sooner so that it wasn’t so severe.

[Livingdeadgirl]

Hey, I have very similar symptoms.. especially after eating. I had a lap in 2018 and it showed my uterus was attached to my bowel. I just had a second opinion today because my original gyn told me to do nothing and it got worse.. and finally they're taking me seriously. Took 8 years to find out I had adhesions, they thought it was IBS initially!

[kiisa in reply to Livingdeadgirl]

Oh wow that’s very interesting but scary it took so long for you to get an answer, but I’m glad you finally got the diagnosis! Definitely going to push for endo specialist now xx

[Tracey29]

Your symptoms are very familiar to me except the diarrhoea, I was the complete opposite except at the beginning of a period. For 15 years I was fobbed off with ‘just having heavy periods’ and suspected IBS but never offered treatment. Eventually I was so unhappy I cried in GP appointment and asked for referral again. I was fortunate to have private health care and after ultrasound was diagnosed with adenomyosis and planned to have endometrial ablation. I was woken to be told surgeon couldn’t do it as uterus stuck down. That led to MRI, diagnosis of endo and referral to specialist. I asked for hysterectomy as fed up and of an age I no longer needed it. Again I was woken up to be told the endo was much worse than expected. I was put into medical menopause for some months before 2 surgeons performed total hysterectomy and complete bowel resection which took over 6 hours keyhole (although bowel surgery incision was larger than anticipated) As you can see endo of the bowel can be very tricky to diagnose.

[kiisa in reply to Tracey29]

Oh wow, bless you. Yes, it’s quite worrying actually... especially since I have suspected something not right for a long, long time. I’m worried about being fobbed off because the doctors have constantly done that to me. It took me about 8 GP appointments until I managed to get a Gastro referral.. and like I said, I never even got an appointment for the transvaginal ultrasound. It’s extremely frustrating to be told “Oh it’ll go away” or something similar. We know our bodies best! I’m glad you finally got your diagnosis and wish you the best for the future. I know endo is very debilitating.

[kiisa]

I was wondering if any of you with bowel endo/endo also suffer from coccyx pain? I recently (past 2-3 months) have been experiencing coccyx pain which I have never felt or had before. I haven’t had any back injuries or anything. I have/had lower back pain in the past and present which I assume is associated with my other symptoms. It just doesn’t seem to be going away, some days it’s extremely painful to the point where I need to go lay down because I just can’t stand sitting up any longer.

Also - vasovagal response/syncope. I occasionally experience this when I’m in intense pain brought on by abdominal pain or shooting pains in my vagina/labia. Anyone experience this or if it’s common in relation to endo?

[Josiejo77]

IBS is an inflammatory disease as is endo. They really often go hand in hand. I have PID, PCOS, stage 4 endo and IBS. I get constant hip pain, diarrhoea, a large lump in my left hand side and low mood due to the feeling of constant pain. I also saw a gastro and they can't find anything that is going on. I just figure my body is in a constant inflammatory state. I do find yoga and swimming help but I don't have any answers as it's a constant battle for me

[kiisa in reply to Josiejo77]

Were you diagnosed with PCOS before endo or both of them together? Would you say the PCOS contributes to your pain or your symptoms?