Possible Stage 4 bowel Endo - please help... - Endometriosis UK

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Possible Stage 4 bowel Endo - please help with advice.

MrsSienna
MrsSienna

Hello ladies,

Does anyone suffer from stage 4 deep bowel endometriosis? And if so what are your symptoms? I'm quite desperate to get some help and advice.

I am 37 and have been struggling for years with what was thought IBS, then Crohns, Ulcers and severe abdominal pains, period pains and severe bladder problems. After ending up in hospital for a week with a severe bowel infection I have now been in and out of hospital for 3 months with a colonoscopy they ruled out bowel cancer but believe it could be deep bowel endo. Every time I have become unwell and need hospital it is the day I start my period. I am now waiting for an MRI to confirm this.

However, does anyone who struggles with bowel endo have the following issues? Every 4-8 weeks for the past 7 or so years I have struggled with what I thought was crohns: I will be perfectly well and then all of a sudden it feels like I

* have a severe fever/chills

* what you'd class as stomach flu or same symptoms as food poisoning

* Terrible diarrhea

* severe headache and feeling hungover for a few days afterwards

* Complete exhaustion for approx 3 days after being completely well

It feels like I have an autoimmune condition but considering the consultant suggested deep bowel endo this seems too much of a coincident? I have taken gluten/celiac tests. It's literally like my whole body goes in to over drive!

I am at a loss but also feel utterly debilitated by this.

Thank you so much for reading

S x

11 Replies
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Hello.

I am so sorry to hear of your pain and suffering.

I have stage 4 deep endometriosis which obliterated my bowel and badly damaged my bladder and nerves too.

Before I was diagnosed I used to get severe diarrhoea followed by a few days being constipated, and this is still the case.

Because I didn’t know any different I just associated the pain I had with bowel movements being the same as the horrendous, debilitating pain I get with periods.

I also get chills and sweating frequently.

The pain from bowel was enough to make me throw up.

Prior to a bowel movement I had these awful sharp pains that make me double over and take my breath away.

I can’t eat any fruit or high fibre food as it makes it worse.

I am exhausted every day now, although this has got worse over time.

Also I was urinating in excess of 40 times a day due to bladder damage, this has improved slightly after taking Pregabalin which indicates the nerves to bladder effected and also following alkaline diet. Now it’s about 30 times a day.

I am now in pain everyday but it used to just come on so suddenly and debilitate me for days afterwards.

Good luck with your diagnosis - I really hope you are offered some relief soon.

Xxx

Hi

Mine was confirmed fairly recently with MRI. The consultant was sure it was there from lap.

Had a CT colonoscopy recently as well to check for cancer, this was negative. When they did the gas I had to switch sides, they said endo was causing a blockage.

Currently struggling to eat much, ends up hurting a while later, or don’t want to eat. Continuous discomfort/pain. Constipation is a big factor, have to take meds for it. Activity or sitting is a killer.

Are they doing an MRI or suggested next steps?

Hi.

Are you being treated by an endo specialist? If you have stage 4 with bowel endo, then this should be the case. Your gyne will be able to refer you to the closest one.

I have confirmed stage 4, and had surgery around 18 months ago to remove part of the bowel.

My symptoms were severe pain before bowel movements, sounds like the pain others are discribing, diarrhea, and constipation with no warning, often I was unable to control this.

Bloating, and tiredness.

Like others I was told to avoid fiber, and I was placed on depicaptyl injections with an add back of HRT, which was really helpful whilst I waited for my surgery.

For me that really help, I had to wait over 1 year for surgery date, and after 6 hrs in surgery to remove endo and unstick everything, and remove part of bowel, I'm so much better. Still issues, but not with my bowel.

It's good your getting an MRI, this is how mine was picked up, then make sure you get seen by an approved endo specialist.

bsge.org.uk/centre/

Good luck X

Hi lovely

I am exactly the same. I was diagnosed with endo 10 years ago. 2 laps and various different hormone treatments down the line but for the last year nothing has worked and I’m in exactly the same position. Every month I have 1-2 weeks of vomiting and diarrhoea and the chills/sweats leading up to my period and constant pain and exhaustion the whole time. I’ve just found a new (female) gynae who was very understanding and Ive had an MRI and waiting for the results. Sending you lots of love and hoping they can sort us both out! 🤞

Hello,

Thank you so much for your replies, I'm so glad I found this forum. At the moment I have a bowel consultant, they had fast tracked me for suspected bowel cancer so had a colonoscopy, thank god that was all ok. I'm now waiting for my MRI to see if it is deep bowel endo. But i couldn't believe how your replies have resonated with me symptoms wise and how you illness got discovered.

What also struck me about the comments is many of the symptoms seem to fit.

I've struggled with severe bladder issues for 10-15 years. I am prone to UTIs but on many occasions I've know it's not but been fobbed off with anit biotics. Esp before my period the pain is so severe I will pee about 20-30 times a night and of course get no sleep. And it feels like an infection, burning and very debilitating but over the years I've realised it isn't to do with my cycle.

I've just had a bad bought of pain, sickness and fever for 3 days which again has washed me out. I try and carry on with work but I just need sleep and rest, luckily I am working from home at the movement. But it does seem to fit with the symptoms of bowel endo. Also I get severe shooting pains up my bum (sorry TMI!), wanting to throw up and general fever and extreme tiredness. I do not know when these attacks will happen or what triggers them but I have started to keep a diary.

Thank you for the link :)

I do feel a little lost

PS on a side note this has got much worse in lock down so I do think my eating habits and less activity may have exacerbated the endo (if it is this!)

Vix72
Vix72 in reply to MrsSienna

You’re describing endometriosis exactly like I’m experiencing it. I went for so many scans for years and was diagnosed with IBS - so angry... then when I came In for a third suspected urine infection and it was clear again and really bad shooting pain in my bum travelling up into my insides almost causing me to vomit. Sweating 😥. The nurse - not doctor told me I needed to see a gyno and within a week (private) I was diagnosed with endo and it had laparoscopy to remove one ovary and lots around my bladder and my euretha was damaged so ended up with a stent. I was so much better for a while but now I’m back to where I was and had my hysterectomy planned in April, now possibly September. Not got a date though 🙈 it sounds like you’ve got endo though and I hope you can get it sorted ❤️❤️❤️

MrsSienna
MrsSienna in reply to Vix72

Thank you so much for replying and sharing your story - i am so sorry you are going through this. I really hope you get better once you have surgery. It has taken me 10 years and a serious illness in hospital (for a week admission) to finally get taken seriously. I too was told I might have IBS, wheat intolerance, UTI's but I just knew it was not these things. I really feel you have to get to a severe point until you're taken seriously.

My mums side have struggled a lot with gynae stuff (back then it was even more dismissed). Also my sister was diagnosed with endo about 15 years ago.

I'm lucky as I live in Cambridge and the healthcare here is brilliant, but like you I may have to go private.

I think until I get specific referral/help these horrific flare ups and exhaustion can't really be managed.

hi. I have experienced all the symptoms you list to some degree, my bowel and bladder have deep infiltrated endometriosis and can't be operated on, they did manage to remove the cysts, free up my frozen pelvis and tidy up though. For me diet has been the key, i did the endometriosis diet very strictly for 6-8 weeks and it really helped. Then I changed one thing at a time, so for me milk, caffeine are fine but pasta, pizza, bought cake and most breads are all a no go. Took some experimenting but it was worth it, i am mostly pain free with no medication but if i have eaten something and feel the symptoms start buscopan and paracetamol usually help. Mine didn't show up on MRI, the bsge specialist was baffled and showed me my scans and what he would have expected to see, luckily I was in very good hands and he continued with my surgery anyway. Xx

I was diagnosed with stage 4 endo and had a bowel resection. It had tethered into my ovaries and I had major surgery within 2 months of diagnosis. That was in June 2018. I spent 3 nights in hospital and 2 weeks off work. Everything you described is what I had suffered for years before diagnosis.

I wish you all the very best. It’s been 2 years for me - and I found out last week that my bowel endo is back and I now have fluid in my left Fallopian tube. So it’s back to the revolving door of specialists. I didn’t realise that bowel endo would return soon quickly for me.

It’s so comforting to meet people in a similar situation. Support is everything!

Thank you for your replies. I feel like I'm finally finding the right support.

If there is anything positive it's realising how supportive this group is.

I'm so sorry to hear how ill people have been 😔 I Really hope everyone gets the help they need 🤞I can't help thinking that I've suffered for so many years and not been taken seriously.

I'm starting to accept that it's a very debilitating disease. I've just been knocked out, in bed for 4 days (again!) Severe pain, fever, horrific headache, exhaustion.

Until I get my MRI I am going to see if diet helps.

Xx

Thanks for sharing your posts. I have deep endo around my bowels and as have been diagnosed quite recently trying to understand whether if I do not have surgery - will the endo continue to grow and end up being dangerous for my organs? Would be helpful to know what others have been advised. Thanks x

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