IBS or bowel Endo?

[Usercms]

This might be a silly question, but I’ve been on contraception since I was 15 (I’m now 22) due to bad period pain which would stop me from doing my normal daily activities and I’m currently on an IUD (Nexplanon) so I haven’t had a period in around 2 years and have been free from period pain. I have been struggling for the last few years with bowel problems though and have been told by doctors it’s just bad IBS following blood and stool tests which were clear...I’ve only recently discovered that bowel endometriosis can cause the same symptoms as IBS...Is it possible to have this when I haven’t had periods in so long? Is it worth mentioning to my doctor? 🤔

[R2-Dee2]

Yes, it's totally possible. Birth control, painkillers etc only mask the symptoms of endo, they don't stop endo. I had my symptoms dismissed as IBS for years but when I finally saw an endo specialist I was diagnosed with stage 4 endo which was everywhere, including on my bowel. It's possible to have both endo and IBS too! This shouldn't be dismissed. Ask your GP to refer you to an endometriosis specialist (as opposed to general gynae).

For context, I had two mirenas one after the other and although I was symptom-free with the first one, the disease still progressed. I've had two excisions now and hysterectomy (I had adenomyosis too) and my symptoms are so much better now. I also had pelvic physio which really helped. Good luck - I hope you get some relief x

[Usercms in reply to R2-Dee2]

Thank you so much for your reply, you’ve been very helpful and I’ll definitely mention this. If you don’t mind me asking, what we’re your main symptoms? 🙂 x

[R2-Dee2 in reply to Usercms]

Of course, no problem 😊

Main symptoms for my bowel endo were bloating, pelvic and tummy pain, feeling "full" but struggling to go to the toilet. Never feeling clean once I had gone (a bowel specialist I saw called this 'rectal dissatisfaction 😂), constipation, diarrhoea, rectal pain (best description was feeling like a knife/poker was being inserted) and vaginal pain. I had permanent endo belly that got worse throughout the day. Food wasn't really a trigger - I could eat the same low impact food for weeks and symptoms would do what they wanted regardless. I did struggle with soy though, that caused pain and a lot of bloating. I saw so many people recommending different diets, laxative medication etc (I did take movicol every day), but excision with a specialist is what has been the gold standard treatment for me. I'm six months post surgery (excision and hysterectomy) and my bowel is still quite unhappy (it's not a surprise - bowels are very sensitive and will react to being moved around let alone having endo cut from it!) but overall my pain levels are much better and my mobility etc. has improved. I also had pelvic physio after surgery and that has helped a lot. Xx

[Usercms in reply to R2-Dee2]

Thank you for sharing- That’s all sounding very familiar 🤔 Mine also changes- I more often have diarrhoea and loose bowel movements and I’ve lost 7Kg in weight recently (I imagine due to needing the toilet as soon as I’ve eaten) so I’ve been taking Imodium regularly as advised by my doctor, but I can do a complete U-Turn and end up with constipation which I am glad of sometimes as it gives me a break 😂 Totally get what you mean by the ‘Rectal dissatisfaction’. Other common symptoms for me are Flatulence, bloating, back and stomach pain which can resemble period cramps and radiate down my thighs, bowel urgency, a random sharp stitch pain along my lower abdomen which can be so intense that it hurts to breathe, fatigue and the sounds which come from my stomach even freak my family out😂 finally mucous in stool- sorry TMI 😩

Having all of this following having dreadful periods (when I had them) is definitely making me question whether Endo is a possibility! Xx

[kelsbels88 in reply to Usercms]

Hun not to worry you but these are basically my symptoms. I have endo on my bowel which I’m due surgery for at the end of the week. I also get hot sweats and nausea especially when my bowel is full and wants to empty the pain is so bad I once lost my vision it was just white. Only lasted a few seconds but still concerning. My pain is always worse when I ovulate and 3days b4 period all the way through to about 2 days after period.

Keep pushing to see a specialist gps and most gynae don’t really understand the disease enough. I came off the pill after 12 yrs to get pregnant, dropped two dress sizes 10/12 to and 8 and got told I had ibs or Crohn’s disease.

Good luck Kelly xxx

[Usercms in reply to kelsbels88]

Thank you so much for commenting and sharing your experience! That’s exactly what happens to me, the amount of times I’ve had to rush home from work because it also just seems to come on so suddenly 🙄 I’ve had blood tests and stool tests to rule out IBD and I’m being referred to a gastroenterologist as I pushed for it after the doctor kept telling me It’s just IBS. Best of luck for your surgery🙂 xx

[kelsbels88 in reply to Usercms]

Wow they did this to me too the did a gastroscopy and took samples to test but all came back clear. My advice would be (which is what I ended up doing) do a pain diary. Right down what you feel, what it feels like, (I just did mine in a notepad) how often, how long it lasts for. I even started writing down how it affected me mentally, my mood, also how king I was in the bathroom and how often. Sounds tedious but for me it did help not just to narrow down when it was happening but was more evidence to confirm what I worked out before my drs. I ended up going to my dr and saying I have all the symptoms for endo I would like a referral to a gynae I pushed and pushed til I got what I needed. If you get resistance find a new dr 😉😉

Any questions feel free to msg me xxx

[L1994 in reply to kelsbels88]

Hi kelsbels88. I am suffering with bad anxiety over the way i am feeling. Feeling very bloated and nauseated all the time with bowel problems. I have some discharge when going for a bowel movement when I wipe. Pain every now and then in my lower tummy like its blocked. Really worrying me and scared of going to the Dr's as I am scared of getting bad news.