Endo in the Bowels

[Fengirl]

Hello,

This is my first post and I was drawn to the forum to see if anyone else had a similar experience.

I've had period problems since the get go, I've always had bowel issues along with this which have got worse over the years- I didn't know it wasn't normal to get shooting pains up your bum during your period.

Anyway ,long story short a few years ago I finally got a laroscopy. I have a little endo , some which they had to leave. I also have a bulky tilted uterus. I was a bit out of it when they were giving me all the details but when I asked about my bowels- as it where most of my issues are now- the surgeon asked why, I told him and he said I probably have ibs. Then later on my notes it said bowels clear. I did the whole going back to the Doctor and he agreed it wasn't iBS as it is all in sound with my period. Though I have since delveoped IBS. But this was months after my lap.

I've been on contraceptive pills and am now on the coil,which has helped, but I'm still having problems. On the run up to my period and in the first few days. I'm literally jumping out my seat in pain,it's uncomfortable sitting and walking. Sometime I just can't go to the toilet,not because I'm constipated but because it's just too painful. My IBS flares up as well now and my back is so painful. I get other monthly issues to - the cramps, I get really scarily down ,but I hate how this affects my daily life e.g. I get worried at work someone will see me jump out my seat, I just want to go home but I can't do that every month.

I've had MRI and internal scans and they were mixed on whether there was any thethering.

I see a specialist Nurse very 6 months , the coil has helped but I'm still in pain. I've tried to be positive and think well it could be worse and they have tried to find out what's wrong...I just don't know where to go from here.

Thanks to anyone who reads this massive rant and for any help! X

[Lovisa]

I was diagnosed with deep stage 4 endo on the bowels and I remember bm's being painful, I can only say it felt like pooping glass shards anyway I had and still have shooting pains through my butt and I also have bleeds which arrive when my period is here. I had my last op in June and through no endo was found on my bowel I do have a badly tethered bowel so there could still be endo. It's worth mentioning this to your Nurse and see what she suggests maybe ask for a colonoscopy to rule out endo in the colon and other issues like IBD's

[Rach3187]

I use to get sharp pains up the bum part just totally ignored it even had the full test mri blood tests and camera all clear.... Got IBS on my period the days I get them on is Not the same every month, I use to get it every 28 days and now 21 days I couldn't be arsed to check it out, as lower back pain is also what I get too 😣

[Hidden]

I went through a two week hospital stay and 4 years of seeing the gastro specialist as they thought I had colitis when in fact after a second lap I had endo on my bowel, rectum, ovaries and bladder. Don't be vased by endo grades as you can have a pinhole size of endo and be in the worst possible pain and someone else can go through a normal life covered in endo with no pain intill it is found through another procedure x

[Bee-74]

Hi.

This sounds all very familiar. I had my rectum shaved as found two nodules attached between my vagina. I had shooting pain and daily back pain, pain when sitting. IT HAS IMPROVED... but I still have pain when I'm on my period. My Surgeon/Gygn consultant is very experienced, but said it was difficult to remove every last bit as not always visible to the eye. I was also diagnosed with Adenmyosis(internal endo) which leads to a bulky uterus and hideous cramps. I find these are reduced by Endo diet.. especially avoiding gluten. Its all about reducing inflammation and bad prostaglandins. google Endo diet.. seriously it helps!

I wouls suggest a referal to Bsge clinic if you havent already. RV Endo generally doesnt improve with hormonal treatment but it does help to slow it down.

Keep pushing if your'e not getting the help you deserve. DON'T suffer alone.

All the best xxx

[Starry]

Are you in a BSGE Endo centre? If you have deep endo you must be seen in one according to NHS treatment rules. General gynaes can often fail to spot endo as it can be hard to see.

Have you had a sigmoidoscopy or colonoscopy to rule out endo inside the bowel rather than on the outside of it?

Also find out if your first lap checked utero sacral ligaments and Pouch of Douglas where endo can be hard to see. You can request your op report.

An anti inflammatory diet ( low or no dairy casein and gluten ) and taking turneric may help.

Like Bee I have RV Endo and will be having a nodule attaching my bowel to my cervix and adhesions removed surgically next week which I hope will stop my issues as I have little success on hormone treatments.

Are you in Norfolk Fengirl?

[Fengirl in reply to Starry]

I have been going to a hospital Gyne clinic, but I don't think it's a BSGE Endo clinic. I was a bit disappointed to start, but my nurse is a specialist Endo nurse and is lovely - it was her who sent me for the MRI's and scan, docs at the hospital just wanted to keep me on the pill and give me buscopan.

I haven't had any sigmoidoscopy or colonoscopy's but I think I'm going to ask if there is anything else to try at my next appointment (which isn't til September as my work made me change my last one ) as I do think it could be worse, but when those days arrive I can't say I'm as positive.

Perhaps it is deep and they couldn't see it, as I do have a bulky uterus, which later on a scooter/nurse told me could be scar tissue. Sometimes I just feel like I'm being a drama queen, with this and all the random pains that crop up in between.

At one point I felt sick every time I got my period,then just solidly for weeks with pains in my right side - it would be so bad for short bursts I thought I'd pass out, but then I got it a scan,and it was fine. And a week later it stopped...I was like oh, I felt a bit silly making such a fuss.

I'm just outside London - I will check the list for BSGE Endo centres.

Good luck in your surgery next week! I hope all goes well!

[Stellauk in reply to Fengirl]

There are some excellent centres in London. Normally you need a colonrectal surgeon to remove the endometriosis on your bowel not a general gynaecologist. Ask for appropriate referral asap.

Good luck

[Fengirl]

Hello,

Thanks for all the info and replies, it's always good hearing other experiences. I have ordered the Endo recipe book and will start as soon as it arrives. I get really low energy but know I definitely could benefit from lifestyle changes- more exercise for sure! So I'm sure some eating tweaks will help.

Thanks again!