New symptoms - bowel endo?

[rachel239]

Hi all,

Looking to check if anyone has experienced these symptoms.

Over the last few months I've had some pretty bad constipation on and off, broken up by days with no issue at all (sometime going twice a day). I occasionally have fresh blood in my stools but no rectal pain. However, today I had about a teaspoon of fresh blood in my stool, which gave me quite a fright.

I also seem to have digestive issues in the 3rd and 4th weeks of my cycle too.

I'm worried that my endo might have spread to my bowel, but the last time I relayed this info to a gynaecologists she said she didn't think it had anything to do with my endo. I'm majorly confused as to what could be causing it otherwise. I have a healthy diet with a good of amount of fiber and nutrients, but I just feel so bloated and backed up all the time.

Sorry for the rant!

R x

[HarrietC]

Hi Rachel,

I had the same issue with my bowels, I had a course of Zoladex and so when I went on that it got worse, blood almost everytime I went and there were no piles present. They were going to send me for an colonoscopy but when I came off the Zoladex again it ceased, so I didn't go.

I know I have scar tissue on my bowel from previous surgery having my ovary removed from it. I know that fresh looking blood is most likely either a pile or very far down in the bowel, if it looks like coffee granules it's from further up and probably worth investigating.

I think the bloating it a standard endo thing, the only time I don't feel bloated is if I don't eat, which isn't the answer really. The cramps I get when I actually use the toilet sometimes rip my breath away, bowel pain is the worst thing I've felt with this endometriosis.

Hope you can find the source of your pain,

Harriet x

[Pureunicorn]

Hi sorry to hear what ur going through, I have stage 4 and it's on my bowel, I suffer with my bowels sometimes going 2-5 times in one day (when that happens when I need to go in need to go!! If u know what I mean 😲) and other times it's so hard to go!! They think the endo has gone into my bowel, so I'm just waiting for my MDT meeting results to know for sure and to what they are going to do for me. I hope u get some answers and this helps a little x

[Moon_maiden]

Rant away 😊

I had Endo on bowel and pouch of Douglas, so between the two, had lap last month and treated.

So it’s not impossible and from what I can gather reasonably common.

I would speak to GP about bowel movement especially with blood, just to make sure. I believe it also depends on the experience of the gynaecologist. The lady I saw at out of hours yesterday was a gynaecologist before GP and she wasn’t at all surprised about constipation and gave a prescription for more stuff to help clear.

[rebekah2311 in reply to Moon_maiden]

Hi Moon_maiden. I hope you're well. I was hoping I could ask you a little about your experience with endo on the bowel and pouch of Douglas. I have recently had an ultrasound which revealed fluid filled cysts on my ovaries and fluid in my pouch of Douglas. I am waiting until the coronavirus epidemic dies down before I can be scheduled in for a laparoscopy! I was just wondering if you would be willing to tell me your experience, whether it was similar, or had any advice for me going forward? I have struggled with symptoms since I was 12, I'm now 23, mostly bowel symptoms such as chronic bloating (frequently look 9 months pregnant!), on/off constipation and diarrhea (worse during period) sharp stabbing wind pain in rectum during period (and now ovulation too) and pain during sex. It has been dismissed for years as IBS and it makes you feel so hopeless...

Thank you and best wishes xxx

[Moon_maiden in reply to rebekah2311]

Hi

Quite happy to share experience.

I’m now 52, bad periods since forever, but managed with normal painkillers. Never investigated due to bad experiences with doctors. Always at period I couldn’t move bowels for a day or so, when it did, the period pain would diminish. Last year had huge frequency issues, with couple uti. 2018 went to A&E with problems including black stools. I ended seeing a private gynae December last year. He specifically asked me about bowel at the time as well as other info. Then diagnosed endo, didn’t think there would be much and superficial. Mid December issues with increased pain and appetite, I found I couldn’t eat as much. Had lap February and there was more than expected, including pouch of Douglas, etc. Unfortunately symptoms didn’t improve and eating worse. Saw him for follow up last month and he thinks it’s deeper due to symptoms, including the constipation issues, which started increasing. If I don’t take something like Laxido or inositol, it just doesn’t work and pain is horrendous. Two gynaecologists have said constipation is just part of the symptoms. The other night I’d eaten a little more during the day and taken two Laxido, it built up, pain woke me, I took inositol as well, with some morphine and in the morning it shifted a little, unfortunately couldn’t do much yesterday at all. Hence awake now.

I’m on Zoladex, five out of six to go, then MRI to see what’s happening. It’s the best way to tell and confirm if deeper. He’s hoping Zoladex and natural menopause will kick in, calm everything down to avoid op. He suspects op could get complicated. I do also have numerous fibroids and enlarged uterus. Gynaecologist, with my symptoms, doesn’t think fibroids an issue and still endometriosis. I think my experience is slightly unknown territory due to my age and only recent diagnosis which has surprised many doctors. I was lucky in seeing an experienced gynae with an open mind.

GP’s last year assumed I’d hit menopause, one said when I mentioned hormones they could give me HRT. She’d initially said at my age I should expect uti and kidney stones! She didn’t comment when I told her still had periods. My GP did a renal scan which showed fibroids a couple months later.

Bit longer than anticipated, apologies. Given my current situation, which I would not wish an anyone, pursue your thoughts. Maybe ask for an MRI in advance of op to check. It won’t show endometriosis on the outside of areas, but can help confirm if deeper. Lap is ultimately still the best way to confirm diagnosis.

Don’t leave anything the way I have, all because I didn’t want anymore stupid comments from doctors.

I hope you get it sorted asap, you know your body.

Please ask if something isn’t clear, tried not to waffle 😂.

[rebekah2311 in reply to Moon_maiden]

Thank you so much for your helpful reply. I will be sure to take your advice on board when doctors and hospitals are operational again and I can finally get some answers.

It sounds like you have been and continue to be put through the ringer... to say the least!!! The thing that is most worrying to me is as your experience suggests, a diagnosis is just the beginning

I am really shocked to hear all of the negative experiences people have had with GPs and I think some work really needs to be done on educating medical professionals about endometriosis and associated issues. To say that at 52 these things are to be expected is ludicrous and does nothing to reassure you that you did the right thing by seeking help!

I'm sorry to hear that you're in so much pain and I really hope your situation begins to improve. I have had such positive experiences on this forum, it is full of very strong women who will share anything if they think it might help another woman who might be going through something similar. I hope it gives you some comfort on those nights you can't sleep!

Take care

Xxx

[Amywoodx]

Hey!

I have everything you’re describing, except for the blood, and my endo is suspected on my bowel.

Mine is usually worse in the morning as that’s when the bowel is most likely full. It will hurt loads until I go to the toilet and then calm down a bit. Then sometimes eating breakfast will make me go again.

I get constipation regularly too, currently going through it. If you get constipated try to make sure your dietis high in fibre: eat lots of fruits and vegs, nut and seeds etc. Even popcorn can be high in fibre. Make smoothies regularly too in order to prevent constipation.

Sometimes you don’t necessarily need to have endo on the bowel to get bowel symptoms. Lots of people without bowel endo experience bowel symptoms. But that’s not to say you don’t have it.

Are your gynaecologists just general gynaecologists? It may be useful to go for an endometriosis specialist although even they can fob you off too sometimes.

[Tizzyliz67]

My left ovary was attached to my colon when I had surgery. I had every test in the world trying to do IVF and nothing showed any signs and my Obgyn said I didn’t have it. My personal OBgyn believed me and did surgery my 1 hour procedure turned into 4 hours. Your bleeding could be from a hemorrhoid. I hope your doctor will listen to you!!!