Severe stomach problems, starting after big endo flare last month.

[Sez1988-]

Hello ladies

I am currently due for a Laparoscopy with endometriosis removal but sadly I couldn't get the surgery any earlier than the end of August, however whilst waiting I have been struck down big time with some bad stomach issues that I have never had in my life before. The endo specialist suspects it on my bowels, but obviously cannot confirm until he does the surgery. This might get a bit TMI so I do apologise.

About a month ago, on the day I ovulated and had my usual agonising endo pains, I suddenly after eating started getting some sort of acid burning type of feeling in my upper tummy in the middle above my bellybutton, as well as not being able to keep off the toilet with loose stools and having pains all in my sides. This got so bad in the night, I was close to calling an ambulance, as painkillers were doing nothing and I was practically crippled on the floor with my husband unable to do a thing to help.

I did manage to eventually sleep, only to wake up the next morning and within an hour it started again. I was lucky enough to have a home visit within the hour from a GP who immediately referred me to the surgical assessment centre at the hospital and called an ambulance because I couldn't even barely get off the sofa (at this point my husband had been helping me to get to the toilet), as he wanted to rule out things like appendicitis. I had bloods done, stool samples done, urine tested, temperature and blood pressure taken several times, many physical examinations with them pressing all over my tummy/abdomen, and apart from a blood test coming back with raised CRP, and a little bit of inflammation showing in one of the stool samples, I am left none the wiser. All the hospital said in the end was possible gastroenteritis, but I don't think it was at all. I have since been referred to Gastroenterology by my GP, but who knows when that appointment will be. I asked my GP if he thinks the endo could be on my tummy, but he said he's never known it be that high up before.

At the moment, I am still suffering daily with pains in my left and right lower abdomen that doesn't feel like my normal endo pains I get with my cycle and I haven't had this before, feeling constipated but when I manage to go the stools are loose, and just 2 days ago when I ovulated again, I was getting the severe diarrhoea (so bad it woke me up in the night with my tummy in bits) and a bit of the acid like burning feelings in my upper tummy, but it was nowhere like it was last month. I'm now living in fear of going out because of this, and I was struggling before with my endo symptoms as they are terrible as it is, but this new stomach/bowel problem has tipped me over the edge.

Has anyone else ever got anything like this in tune with their cycle/endo flare ups at all? I've never felt so alone with this and it's ruining my life! I've never lived in fear over symptoms before, but I can't live with that.

[Anonabc]

Hiya, firstly sorry to hear you are suffering, it really gets you down doesn't it?

Secondly, I can relate to some of your symptoms - I get really sharp pains in the right and left side of my pelvis throughout the month, and in the last week or so have had a flare up where I have had pains in my sides, in my back, hips, even as high as my kidneys. I also get bowel symptoms around this, although this seems to alternate between being a bit constipated and then having looser stools rather than the type of diarrhea you have mentioned.

I am currently waiting for my first appointment with a gynaecologist at the end of August, but I have assumed that these symptoms are likely to be linked to the suspected endo. Hope that makes you feel a little less alone in this x

[Char411]

I am having exactly the same thing with the acid and bowel problems. I had numerous tests last year with a gastroenterologist and he said I have IBS, most likely caused by my endo and that digestive issues and endo can go hand in hand. My gastro issues were pretty much under control until about 6 weeks ago when I had a huge endo flare up. Nothing seems to be helping, I’m taking peppermint oil, buscopan, probiotics. The acid burning is the worst, my stomach also cramps in the same area of where the acid burns, like it’s empty despite having eaten, I also seem to have a lot of wind. I’m so fed up as I’m so uncomfortable. It feels like the endo flare has thrown my system out of balance or something. Sadly I cannot offer you any tips for easing it as I’m yet to find any but just know you aren’t alone xx

[Sez1988-]

Thanks so much for your replies, and I am so sorry you guys are suffering with this stomach stuff too, but I am relived I am not alone. I was genuinely starting to think the worst, I suppose I should have mentioned in my original post that my mother has Chron's disease (though it's been in remission since I was a teen after she had surgery) so the worry has been out of control, I'm so scared that I have that as I saw her suffer so much when I was young and I don't want my kids to be seeing me in this state. I have a 3 year old and a 13 year old and hiding this stuff from them is becoming increasingly difficult.

Both of you have very similar sounding symptoms to me, especially with where the pains are. What pain relief do you guys use? I don't dare use Cocodamol as if I get constipated my endo pains are horrible and I just can't go to the toilet without being in agony, but I've been told to not take any anti-inflammatory pain relief until they get an idea what is going on in case they flare it up more, so Ibuprofen,Mefenamic Acid and Naproxen are out of the window at the moment. Paracetamol helps a little, but at best takes the edge off slightly, my wheat bag probably helps about the same too. I was given Lansoprazole by the Gp and he told me to take it if the acid stuff gets bad again, but I'll be honest I'm not keen on the idea of having to take something constantly again unless I really have to. I have bought some Pepto Bismol and Gaviscon to try (not at the same time obviously!) if it gets bad again, have you tried that?

It sounds like you guys also get the horrible gnawing/twisting/grinding stomach pains I get too, and it is where you get the acid feeling, and also yes it does feel as if you haven't eaten when you have!

[Anonabc in reply to Sez1988-]

I take Buscopan as that works as an antispasmodic on both the bowel and the womb, that way whichever is causing the issue I am at least taking something that might soothe it a bit! I don't find it gets rid of the pain, but it does take the edge off and also seems to slow down the sense of urgency I sometimes get. I try to avoid nsaids as I worry that they will make my stomach worse, but used to regularly take them for bad period pain.

I also use hot water bottles, heat pads, wheat bags, hot baths. Today I had heat pads stuck to both the front and back of my pants to help me get through work.

Finally I am also doing some councelling to help me with the mental aspect of feeling this rubbish, and have recently started acupuncture. My first acupuncture session didn't really do much for me, but I am just back from my second session and feel a lot better than I did for the rest of the day.

[Char411]

I use dissolvable paracetamol now as it’s gentler on the stomach and works quicker (I used to take tramadol or codeine but these caused constipation and bad nausea, used naproxen but have stopped those too as too harsh on the stomach), i use a heat pad and take buscopan and or colpermin also. I have recently started taking apple cider vinegar as I read it’s meant to counteract the stomach acid.

My mum has celiac disease so I keep thinking if it could be that but I had a colonoscopy and endoscopy in 2017 and both were clear and an MRI last year which was clear apart from fibroids. I honestly think it’s the endo causing secondary problems. I just want it to stop now as it’s making me feel anxious and worn out x

[Sez1988-]

Thanks again girls this is really helpful, and has taken some of my probably irrational worries away a bit! It sounds like I should go back to the doctors next week and talk about the possibility of Buscopan, I know you can buy it but I'm a bit worried now about trying anything without speaking to the doctor first, as I am so bloody scared it will flare up again.

Char, I have actually been using dissolvable paracetamol too funnily enough! I just find like you it works faster, I buy the Panadol Actifast. I was also tested for celiac even though it doesn't run in the family, I actually forgot they did that til you mentioned it. I'll look into that apple cider vinegar too, I've always heard of it but never actually known anything about it. Are you due surgery or anything after your MRI to treat the endo? x

[Char411 in reply to Sez1988-]

I had 3 hour surgery in May 2018 to remove my endo and all my symptoms really settled down but it’s started to creep back up and hasn’t settled down since my huge flare up last month, I think the endo has grown back. Back to square one for me frustratingly.

I know what you mean about the anxiety about other symptoms though, I immediately start thinking the worst and get really wrapped up in my own head, which probably makes the symptoms worse as I then become hyper aware of them. Endo really does cause anxiety, I remember before all my issues I was such a chilled out person, never worried about things.... oh how I miss that version of me lol xx

[Sez1988- in reply to Char411]

3 hours?! I didn't realise it could take so long, oh that seems so scary now.

And I'm with you also on how I used to be before the endo, I mean I was a worrier but not like this. For me it only started after having my second baby in 2016, and started getting to this level a bit more each month after I lost my dad in 2017. Stress is certainly a factor isn't it? But we can't help it sometimes, it all gets too much!

We must somehow regain control of our thoughts, but it's bloody difficult. They're just thoughts, but at times are so powerful, on the flipside though if they are so powerful that means we can turn them into good ones surely? I sound like an amateur therapist or something now haha.

Are you going back to your specialist if it is back to square one? x

[Char411 in reply to Sez1988-]

The surgery wasn’t as bad as it sounds and it did provide me with almost a years relief .

Let’s hope we can turn our thoughts into positive ones and at least control that as we can’t control our bodies.

Stress plays a huge part but it’s so hard not to stress when life keeps throwing you shit. ( I lost my dad last year, I understand your pain)

I am waiting for a referral again as they tend to sign you off after surgery, which is bizarre as they know it grows back. I waited 9 months for my first gynae referral, so frustrating.

Let’s hope we both have a good week ahead although I already feel tired for work tomorrow though ha ha ha