Does anyone else with D.I.E experience Vasovagal Syncope after passing a bowel movement?

[the1in10woman]

Hi everyone - I am experiencing Vasovagal Syncope episodes routinely after opening my bowels & I'm searching for answers on what I can do to alleviate this. Has anyone else experienced this?

For context/background.. I am 24 years old & began experiencing symptoms of Endometriosis at the onset of my periods at age 11. I was officially diagnosed with Deep Infiltrating Endometriosis on January 2nd 2020 during my laparoscopy with excision. My Gynaecologist used a combination of the Harmonic tool to remove large nodules & laser for more intricate areas. My procedure lasted 4 hours and they found Endometriosis in my bowel, rectum, ureters, bladder, iliac fossa & diaphragm. The rectal, rectavaginal & bowel nodules were removed by using the disc shave technique. I am now 6 months post op & have seen improvements to my periods, however, I am having this awful Vasovagal Syncope response (sickness, fainting, body weakness, clamminess/shivering/ hot flushes etc.) every time I open my bowels. On average it takes a good hour or so to feel 'normal' again, but I am then left with the usual 'endo pain' I was experiencing in my bowel area pre surgery. This is really impacting my social life and is also making my job difficult. I am absolutely certain that this response is being triggered by perhaps adhesions in my bowel that are irritating/tugging on the nerve when I try to pass a bowel movement.

It would be great to know I'm not alone in this. Can anyone relate?

Rachael X

[Linley]

Hi!

So sorry you are having a bad time. I have not had VS but a school mate years back did, she was told it was the body over reacting to a situation/trigger, her GP said she should not strain when having a BM and to make sure she was never constipated. But I can relate to the shivering and hot flushes and that happens when I have a diahorrea attack because my muscles seem to contract quite rigously. I have confirmed IBS and had Endo for 20 years. Sorry I can not help you but I hope someone on this forum can. Good Luck 🍀

[the1in10woman in reply to Linley]

Hi Linley,

Thanks so much for your reply. It’s reassuring to know that others have experienced this & I’m not imagining it. I have contacted my Gynae for some advice but will try to be more relaxed during BM’s and perhaps adjust my diet so I am not at risk of constipation. I hope you are managing well. X

[Linley in reply to the1in10woman]

Yes, thank you I am doing OK, my Endo days are over but I feel for ladies like you who are starting their Endo stories, take care

[Moon_maiden]

Reading your post reminded me I had a couple of weird bouts at work where I couldn’t stop shivering on the sofa, more cold than anything, but it wasn’t cold and had heater quite high. I wonder if it was the same thing. GP didn’t offer anything in the way of answers.

Generally I get a shaky feeling from inside abdomen with activity, which is likely endo effecting nerves.

[the1in10woman in reply to Moon_maiden]

Hi - so sorry to hear that you have also experienced something similar. Thanks for reaching out! If I get a resolution I'll share it here for us all Stay well!

[Brambledoggy]

Morning. Yes. I have this condition. Not every month and always DURING a bowel movement. I’ve had them all over the world. Beaches. Hotel rooms. Public toilets. They come on so quick too. I have excruciating pain, sweat all over my body, even my hair, can’t stay sat on the loo, have to grip the sink to stop me fainting. The pain is off the chart. Incredibly scary. I have a bathroom mirror in my downstairs loo and last time this happened I didn’t recognise myself. A ghost looked back. White as a sheet and dripping with sweat. Can’t get back upstairs or downstairs as I can’t stand. Pain lasts about 20 minutes, then back to “normal“ endo pain which is also horrific. I always wonder why I don’t get it every single month, just sporadically. It’s HORRENDOUS pain. Like a diabetic episode. I keep banana bread and orange juice on standby to get some sugar inside me during/after the fainting episode. I’m on my own with a dog too. No one to help. It’s very very scary and I dread every period. Read my bio for my journey. Ongoing. Even at 49. Nina. X

[the1in10woman in reply to Brambledoggy]

Hi Nina - so sorry to hear how unwell you also become after a BM & that this is still very much affecting your life. I can empathise with this experience and all the symptoms you describe here. If I get any answers I will share them to see if it can help anyone else.

Rachael x

[Princesspeach84]

Yes I went through a period of having this and it is frightening. After every BM I had, I had to lie down afterwards. I have rectovaginal endo also. My dr told me mine was anxiety. I didn’t suffer from constipation but diarrhoea everyday. I took CBD oil daily, tried to relax more and eventually it got better. It never occurred to me this could be another endo symptom xx

[the1in10woman in reply to Princesspeach84]

Hi - so sorry to hear this, I really wouldn't wish it on anyone. Interesting that you also had rectovaginal endo - I am convinced it's all linked. May I message you about your experience with CBD oil? I have been researching it & have decided I definitely want to try it but am struggling to understand what brand to buy & where to start! X

[Princesspeach84 in reply to the1in10woman]

Yes it seems everyday we are finding out new symptoms to endo which the drs try to convince us aren’t endo related but many of us suffer from. Yes of course you can message me regarding CBD oil, I don’t have extensive knowledge but I take 2 drops of 250 strength on bad anxiety or bad pain days xx

[the1in10woman in reply to Princesspeach84]

Couldn't have put it better myself. Thanks so much for sharing, really appreciate it. Xx

[Moonglo]

Interesting to have a name for it. I had it both times my ovarian cysts ruptured and a few near misses with flare ups.

[the1in10woman in reply to Moonglo]

Sorry to hear that this has impacted you. Hope you keep well X

[c142]

Sorry to hear about all of your problems. I didn't know this reaction was called vasovagal syncope before. I just looked it up and it's called situational syncope when it occurs with specific situations like abdominal pain. Thank God i don't actually faint, but got some of the pre symptoms which are bad enough. It's only happened to me once this year, but occured many times in the past. I have had much worse pain, but this reaction for me seems only triggered with severe pain relating to the bowel (mostly on the first day of periods). As soon as i stand with this severe pain, i start shaking, my heart starts racing, i sweat, have nausea, fluctuate between feeling hot and shivering cold, get yawning and always ended up falling to sleep. It's an exhausting and horrible experience. Since mine is pain related, I try to overcome this problem by taking pain relief and waiting for it to work before standing or going in the bathroom. I hope that it will get better for you and the other women who suffer from it.

[the1in10woman in reply to c142]

Truly sorry that this is also impacting you, at the same time I'm relieved to know it's not just me. I'm starting to consider CBD based pain killers & I'm due a CT scan and referral to a colorectal surgeon. Hopefully I'll get some answers soon. Hope you stay well. X

[c142]

Thank you. To be honest things have got easier with age.I was diagnosed with endometriosis almost 16 years ago. I went on a gluten free diet for about four years and started using a water filter and took some minerals and vitamins and i noticed the symptoms reduced. I've reintroduced gluten now though. I'm hoping to get a MRI in the near future to see what damage has been done, but i feel the bowel is definitely involved. I'm not keen to have anymore surgery though. Hope you get answers soon and your situation improves. Take care x