After some advice and some personal experiences!

[Matj2580]

Hello, this is actually my first post so apologies if it is a bit long winded!

After around 6 years struggling with pelvic related issues (PID, cysts, pain & heavy periods) I am now under gynae having investigations into endo. Over the last couple of years I have had bowel symptoms that have gotten worse (the last 2 months getting unbearable). Constant cycles between constipation and diarrhoea, blood and terrible left sided pain all around the time of my period with now only about a weeks rest before starting again! I am vegetarian, gluten free and eating high fibre with lots of fruit and veg and none of what I eat seems to make a difference.

My specialist called yesterday and said my mri didn’t show anything but they were booking me in for a laparoscopy anyway. He then said that they wouldn’t be able to do anything about my bowel in that procedure and that I would have to go back to my gp to be referred separately to a bowel specialist to do their own checks (stool, blood, colonoscopy).

I really don’t know what to do and I feel so deflated because I just desperately want some answers and feel like I can’t keep living like this! I can’t take my usual painkillers (co-codamol or tramadol) because they make the bowel issues worse and I have the pain of my period as well as my tummy pain from the bowel with only paracetamol and naproxen that aren’t causing problems but don’t cut it at helping. I cannot take oestrogen because of a blood clotting disorder and I was on progesterone for a while but it had a terrible effect on my mental health which I don’t actually think I could handle right now!

Is there any supplements/ diet advice anyone has? And is it worth paying for a private investigation with a specialist to get more insight? Any advice/ help at all is welcome, thank you!

[Bespp]

Hiya, sorry to hear about all this you going through as is awful. Your post resonated with me a couple of years back when I was a veggie. Have you ever checked your iron and vit D levels? These were my 2 things that had really went down for me when I was a veggie and I had gone down the pain cycle you are describing. I have stage 4 endo in my bowl and everywhere else pretty much. I too try to stay gluten free when possible but I am not intolerant. Went to see a traditional chinese medicine specialist the other week and she strongly reccomend some wholegrains in my diet with the explanation that female body needs it. Since started eating meat, supplementing with vitamin D it is a bit more under management. Just wanted to share my journey with you.

[Matj2580 in reply to Bespp]

Thank you so much for your reply! I have kept track of my eating habits and I too am not completely intolerant to gluten it’s just that I’ve noticed it can effect symptoms so I decided to cut it out to try and ease that but I will definitely try swapping out to some wholegrains where I can! I have had blood tests in the past where all of my levels appear to be okay but the last one was a couple of years ago, I have a blood test with my GP booked for the 22nd which can hopefully shed some light on what/ if I need more of anything in my diet and then maybe I will speak to a professional too to help me plan what I can do! I really appreciate you taking the time to get back to me, it’s really nice to speak to people who have been in a similar position xx

[Dee_EndoUK Moderator Endometriosis UK]

Hi Matj2580

First of all, a really warm welcome to the forum. It's positive to hear that you've been referred for a laparoscopy as this really is the best way to diagnose endometriosis.

With regard to diet, it could be worth contacting your GP and requesting a referral to a nutritionist, available free to you on the NHS. They would be able to put together a dietary plan and provide guidance for you that is safe for your body. You may also want to take a look at the website for the British Association for Nutritional Therapy - bant.org.uk - for further information on finding a suitable nutritionist.

In addition, please consider joining one of our face-to-face support groups to discuss endometriosis and the issues you are facing with other sufferers. To see if there's one in your area, please visit endometriosis-uk.org/find-a...

Wishing you all the best x

[Matj2580 in reply to Dee_EndoUK]

Thank you so much for getting back to me, I didn’t realise that I could speak to a nutritionist through the nhs! I will definitely discuss it in my GP because I really think some professional planning would help me feel like I have direction. I did have a look at the face to face meet ups and I think I will try and join my closest one! Thank you so much for your help xx

[Purple_Badgers]

Hiya - sorry that all this is happening to you - it’s all really stressful and hard to deal with when you feel so unwell xxx I think the doc should be able to work with you & find painkillers that you can take without upsetting your bowels too much. I take a probiotic capsule every day (lifesaver!), buscopan for cramps (mostly on period, but other days too), I take lactulose when I feel constipated (especially during period) which softens things up & seems to gently encourage a bowel movement. I take nefopam for pain most days, except when I need to drive as they make me drowsy, but it’s my favourite option as it doesn’t upset my bowels. I take naproxen occasionally, but only if I’ve eaten something and always with omeprazole to protect my stomach as it can be really harsh. I also combine the painkillers that are safe to combine, such as paracetamol/nefopam or paracetamol/naproxen for extra relief. I don’t usually suffer with the diarrhoea part, so I have no specific advice for that. It might be worth having all the bowel investigations done first, to eliminate other causes for your issues? But I guess you’ll have this lap and if bowel endo is found you’ll need to be referred to a BSGE centre for further treatment, with bowel experts involved. Wishing you the very best of luck. Xxxx

[Matj2580 in reply to Purple_Badgers]

Hi, thank you so much for getting back to me! I am definitely going to ask my GP if nefopam would be a suitable substitute for me as I have worried about the effect naproxen has on my tummy, they changed my medication a while a go to mefenamic acid and all of my pain came back and it didn’t feel like it did anything so I had to go back to naproxen as we knew it worked I also make sure I’ve eaten food and use a stomach liner tablet! This month round has just been really difficult I am just ending my period now but I am on day 12 of not being able to go to the toilet, I have been taking lactulose for the last week and have also been given suppositorys which unfortunately had no effect, I was told to go to the hospital if they didn’t so I called 111 and they said the hospital wouldn’t do anything and gave me a GP appointment, they prescribed Cosmocol and unfortunately still nothing other than a very small amount of diarrhoea on two occasions over 12 days! The pain is constant with intermittent cramps and I feel at a loss as what to do, I guess I’m worried about having the lap now as the mri was clear and I probably wont be under a bowel specialist by that time because of how everything is taking longer in the nhs at the moment I’m worried of wasting the doctors time but at the same time I struggling with the mental effect of so much pain and discomfort for 2-3 weeks a month. Thank you so much for getting back to me it really does mean a lot xx

[EmB18]

Have you noticed if any foods make your symptoms worse? You mentioned eating plenty of fruit and veg which is a great source of anti-inflammatory nutrients for endo, but even though they are good for us, some of them may trigger bowel symptoms. Some people find it's vegetables like broccoli, cabbage, onions or garlic, so might be worth keeping a food diary and seeing if you notice any patterns.

[Matj2580 in reply to EmB18]

I have done food diary’s and tracked my eating to work out what could be having an effect but I have mainly focused on food groups and specific foods that I knew could instigate issues, I have never really though of fruits and veggies causing issues! I home cook most of the time so majority of my food has onion/ garlic so I will definitely do this because it could be an obvious addition that I’ve completely overlooked! Thank you so much!! Xx

[Vps1980 in reply to EmB18]

It’s such a shame that you react to those foods, as onion and garlic are anti inflammatory and anti histamine foods, histamine increases estrogen and vice versa, also broccoli reduces the bodies bad estrogens xx