Bowel endo: Hi does anyone have endo of the... - Endometriosis UK

Endometriosis UK

52,558 members42,835 posts

Bowel endo

Tallulahbelle39
Tallulahbelle39

Hi does anyone have endo of the bowel. I’ve had a total hysterectomy and only have one ovary left but I’m still in agony daily. The gynae rang last Saturday and said there’s nothing else he can do for me and discharged me back to my doctors to get them to refer me to someone to now look at my bowels. I’m just wondering what sort of symptoms people have

29 Replies
oldestnewest

Hi

Yes I'm currently waiting for a hysterectomy and removal of bowel endo

Symptoms are mainly gastro problems and bowels erratic.....very loose to very firm....Lots of pain with bowel movement before and after

Not much appetite and feeling full when eaten only a little

Bleeding from bowels when on period or mid cycle

I have constant pain on my left hand lower stomach, I go from hard to soft stools and have the sudden urge to go. There is sometimes blood in them but I don’t have periods due to hysterectomy. I also get rectal pain randomly not even when I’m poohing and sex is also painful. My stomach swells up terribly and I look pregnant

Sounds very similar but it could be a number of things.....I had to go though Gastro and bowel investigations first before being referred back to gynae

The pain at the minute is unbearable pain killers don’t touch it so I’ve taken to sticking heat patches in my pants which ease it slightly but don’t help with the hot flushes. I can’t sleep for the pain cause I can’t get comfortable and I’ve been told I have to wait 4 weeks before contacting my doctor but I’ve already been in constant pain for 3 weeks. It’s also the same pain I had before having my left ovary removed

Can you try and get an emergency appointment with doc see if they can give you some stronger pain relief......You cant wait while your in that much pain.Have you tried using buscopan or something similar to see if it helps with bowel spasms?

I’ll give that a try thanks. I’m already on quite strong painkillers I try not to take them if I can help it but some days it unbearable when I’m at work all the time plus I get lower back pain and pin around my kidney area

Just check you can take buscopan with your painkillershope you get some answers soon

take care

I'm the same, im currently waiting for a laproscopy. So nervous to find out what is going on as I'm only 31 and want kids. I have taken caffeine and dairy out of my diet tho and its made a massive difference to the pain in my lower left tummy. X

LiaHunter
LiaHunter in reply to plotments

Yes I had extremely chronic pain in feb 2018 the day I came back from holiday in Argentina. It was no fun on the flight back being in agony for 14 hours with only paracetamol! Before and during holiday I experienced bouts of loose stool. Feeling full after eating very little ( tbh that I had for years), chronic pain in the abdomen and various GI issues of bloating , looking pregnant (that I put down to my fibroids). In any case this date in February I remember it like yesterday! I got to A& E they fast tracked me as all the inflammatory markers like CRP were extremely elevated. I was told it was Crohns Disease but after biopsy it was endometriosis on the bowel that also caused my appendicitis to rupture. I had a laparotomy ( bowel resection anastoma), which meant I did not need to have the stoma bag post op. However I have a massive scar down my abdomen which has keloids. I was in ICU after the op and been fed via the neck for 2 weeks. Recovery was slow but I was happy that finally 2 years of having horrendous debilitating pain especially around my period was no more and also some of the GI problems are over. At the height of my pain a friend who is Polish gave me a product called no- Spanx this really helped it’s over the counter over there and may be similar to buscopan. Certainly worth trying buscopan or colpermin that worked best for you me. I really hope you get some relief, there is nothing worse than this pain. Best wishes

Are you diagnosed with bowel endo?

No they are going to start investigating to see what is causing the pain and the bloating. It’s always been put down to endo bloat. I’ve recently had my left ovary removed which was dead and riddled with endo and was stuck to my pelvis and last year I had a chocolate cyst removed and the endo scraped away and a total hysterectomy, 3 weeks after that I was back in agony and this time it took 5 weeks for the pain to return

It sounds like you had severe endo found at the lap and should have been referred to a centre straight away. The discharge note should give an indication if you still have it.

Are you in the UK and if so are you at a specialist endo centre?

Hi yes we are in the uk we live in North Yorkshire. After my last op the gynae did say that the next step might be to refer me to a specialist endo centre if he couldn’t do anything more to help me. He’s writing to my gp with the next step but he said to give it 4 weeks before I contact them. 4 weeks is a long time when I’m in daily agony and have already been for 3 weeks

I’m so sorry you’re dealing with all of this. You need to get an appointment with a Endo specific gynecologist whatever you can do. A regular gyn likely missed a whole ton of Endo. Honestly I’ve seen this happen so many times and it’s heart breaking. If your bowels are involved then you most definitely need a specialist.

I am 36 and was just diagnosed in February with stage 4 recto vaginal endometriosis. I have had painful periods for as long as I can remember. I even remember being a teenager (17 or 18) and when I went to emergency they gave me a pregnancy test and that was it. So I asked my doctor and she said painful periods were normal. And so began the journey of misinformation from doctors. I asked my GP about endometriosis around 6 years ago, this was after a miscarriage and continuously trying for a year to have a baby and not getting pregnant, and she laughed at me and asked what would make you think that. I also at that time was having 7-8 bowel movements a day and on my period every bowel movement I would get a sharp knife hot poker up my rectum (sorry tmi). I say this because I have a high pain tolerance so I just thought it was normal. But my surgery was horrible and hard to recover from, I almost ended up with an colostomy bag. It took 3 hours for them to remove my rectum that was pulled up and over my vagina. Please don’t let it get to where I was. I spent the money and paid to see a private doctor that was then able to refer me to the best Endo clinic in Canada which happens to be msp (our medical standard services) covered.

Sadly a hysterectomy is not a cure for Endo. Endo can produce its own estrogen so even after your uterus is gone you can still be creating new adhesions and which is likely the cause for your pain returning. The other thing to make sure is if your specialist did ablation or excision. Excision is the gold standard for removing Endo. Ablation basically just chops the top off the root and so it just grows back after a while. Excision removes the whole implant.

I just recently did a specialized urine test that checks all your hormones (sex and adrenals). You’re obviously still producing hormones (or maybe not enough) or you wouldn’t be having issues. Mine found that all of my hormones were basically as low as you can go. So we’re adding in progesterone to help balance. It’s called the Dutch test. I had to send away to USA so I’m not sure about the logistics to you.

There are a few things you can do for yourself now..

1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.

2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.

3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.

4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.

5. Keep a diary of your symptoms and what you were doing when it happened or what you were eating. Maybe you can figure out some of your triggers.

6. Make sure you’re seeing an Endo specialist. Do whatever you can, don’t find one that just has a special interest. Most general gyn don’t know much about the condition.

Sorry about the novel! Please feel free to pm me if you have any questions. You got this! Just keep hanging in there. 💕

How did you know that you had endometriodis in intestines? Also endonetriosis can flourish as long as there is estrogen from any source.

You have one ovary to produce enough estrogen. How old are you?

Hi, I'm sorry you're going through this. As others have said you should be referred to an endometriosis specialist. This shouldn't have been dealt with by a general gynaecologist. You will need a colorectal specialist consultant (with an understanding of endometriosis). Whereabouts are you based?

I have had a fixed colon because of endometriosis and also endo on the inside of my bowel.

On the outside/fixed colon: diarrhoea, stabbing pains, nausea, didn't feel like eating

On the inside: bleeding from back when on period and during bowel movements when on period. Nausea, very very painful bowel movements, before, during and sometimes after. This pain would happen every day when I had bowel endo on the inside. I've developed a lot of food intolerances and also diarrhoea was a common issue.

Have you tried acupuncture and herbal medicine, they may be able to ease or reduce your symptoms while you wait for your specialist referral.

There's natural things you could try. Feel free to send me a private message and I can give you the details.

Take care and don't let them walk all over you. Be firm, they owe you good quality care so I would chase earlier than 4 weeks. Nothing to lose xx

Hello.

I’m sorry to read about your awful pain.

I suffer badly with stage 4 endometriosis involving the bowel. Ive had both tubes and left ovary removed but haven’t had hysterectomy yet as womb is pulled backwards and attached densely to bowel and pulling bowel up out of place so there’s risk of colostomy bag and damaging my nerves and bladder more than they already are.

I’m in pain every day- sitting has become near impossible and standing or walking can cause back to spasm intensely followed by rectal bleed. So only really comfortable laid down and even then I can feel pain.

Prior to a bowel movement I will get an extremely dagger sharp pain which doubles me over, I then feel sweaty and extremely weak, my heart beats fast and often feel very nauseous and then my whole pelvis starts contracting, I have to be near a bathroom at all times as moving is near impossible and then have to grab onto handle or sink to stop me passing out.

I either have diarrhoea (in which case the pain goes back to the normal level of daily pain after an hour or so) or if I’m constipated the above mentioned pain will remain until I’m able to go which is usually the following day sometimes two.

Sorry for the graphic info there’s not really a nicer way of describing it lol.

Best wishes to you xxx

This might not help everyone, and it still hasn’t solved everything but I have bowel endo and all the symptoms people have described below but I have found some easing by following a low-FODMAP diet. it’s designed for IBS but many of the symptoms are similar. I’d advise doing it properly though... there’s a very short (2-3 week) elimination phase before you reintroduce certain types of food to see if any exacerbate symptoms. It’s hard work, but for me was worth it (turns out pulses are my real demon - one of the things I’d always eat more of for ‘healthy’ bowels). But don’t cut out everything forever or assume it’s a particular food without following the reintroduction instructions carefully. Monash university are the leading researchers in this area and have a lowFODMAP app. I also found a book ‘the ibs diet’ by patsy *someone* a helpful faq and guide through the process. It might not help everyone but I figured it was worth two weeks of effort just in case and I’m glad I did it. I’m now down to normal shelf-strength painkillers most of the time (except for about a few days where I need the strong stuff!) and my endo is stage 4 - no hysterectomy as yet. So if it works for me it might be worth a try for you? Very best of luck. Xx

I have bowel endo and my main symptoms are moderate to heavy bleeding from bowels when I’m on my period, bloating, painful bowel movements and usually loose. I also suffer badly from ovarian cysts

Hi, That been the same for me.TEN machine, Fennel Tea, Belladona helps, + gluten and lactose free for bloating and bowel emptying

I’m hearing you. I am living with stage 4 endo on the bowel. Had a resection 2 years ago and it’s returned. Now starting the IVF journey. BEST THING: I have done is start dairy free and gluten free. Really annoying at first, but I’m losing weight at last and I believe (when I give up wine) that dairy and gluten do agitate our bowel endo.

Hi, I have stage4+ Endo. 6 Operations. Organ distortion, no children, lost part of bowel aged 26. Have scar and Adhesions, Have been refused further Opps unless need life saving Opp, where I will require a 2nd surgeon for bowel and bladder loss. This Opp. would need to carried out in a place of knowledge, like Hammersmith or St George's, No Register Surgery could carry out such a Opp. I'm Now 62. Still suffering with Endometriosis. Still with high hormones, still pain, taken all the drugs, but now just on painkillers. Just got 2 Endo cysts on spine. Let's hope they go as they are stopping me doing things. I stopped work a few years ago due to Endo which started when I was 10yrs. Bleeding and scars in lungs by 30yrs. For some this disease dies away at 55 to 60. Mine has slowed by is still pretty nasty.I look about 50, very attractive, my mothers 93 and looks 75 and she has no Endo and does much more than me, shopping and mowing her huge lawn!

All our family look young, all live to 85 to 104! So I have something good going for me!

❤️

petition.parliament.uk/peti...

Copy and paste this link it should bring you straight to the petition page to sign. Please Share on your social media’s we don’t have long left.

Please every one sign this petition it would be so appreciated by me for us women who are suffering or have family or friends who suffer from endometriosis and PCOS, it can be a daily struggle, I have had stage4 severe endometriosis, have had numerous surgeries to help remove it but it is a lifelong disease which is so painful, reoccurs and can cause infertility. For us now and our future women and girls please sign this uk Houses of Parliament petition for an ask of more government funding to research into these conditions. 100,000 signatures are required for them to consider more research funding debate. We only have until January 2021, We are nearly 1/4 way there. It takes 1 minute to sign please check it out and click the link to sign and help us in the uk and worldwide🎗💛💛

Petition: Increase funding for research into Endometriosis and PCOS.

petition.parliament.uk/peti...

mrsk8cook
mrsk8cook in reply to Immy1992

We are having likewise issues in Australia also.

Immy1992
Immy1992 in reply to mrsk8cook

I hope somethings happens soon for the women in the world today it’s very difficult to deal with everything else going on in the world aswell as our symptoms and lifelong complications of the disease, best wishes xx

Yes. Also hysterectomy (20years ago) ... (visual symptom) I had rectal bleeding. It wasn't for about 7 years of this that "they" realised that the bleeding was cyclical. I was menstruating from endo lesions in bowel. X

Hi I've been in the same position, I had a hysterectomy in 2009, this didn't help with pain . Still had intense pain , being sick sat on the toilet and so I went back to the doctor's and got referred back to the gynaecologist.He was quite unsympathetic and agreed to take out one of my ovaries but made me feel like a , hypochondriac and said to me if 'this doesn't work I don't know what will' .

Well it didn't work and so because of his words of wisdom I tried everything to live with the pain . But it continued to affect my life , my work my relationships.

I almost gave up but I've recently been back to a different specialist be was so different he couldn't believe that they only took one of my ovaries as just with one you produce hormones which feed the Entro, so he said for my pain control there was no point taking out just one. I was so angry at the NHS the years I've had wasted in bed , canceling things missing out . All that time I've been to doctors and they have looked me in the face and told me to pull myself together and learn to live with it. Making me feel pathetic.

To hear some empathy from this new doctor gave me hope I've just had the injection to switch off my ovary and I'm on waiting list to have the op .

You may also like...