Endometriosis and the bowel

[ElliceSamara]

Hello again fellow warriors!

I’m looking for advice from anyone who has had endometriosis/endometrium on the bowel/inside the bowels?

I had been misdiagnosed with IBS and then appendicitis, before being diagnosed with endometriosis during the removal of my appendix (which was covered with endo I may add!)

Since then I’ve recovered well, my pain did subside for a few months but has recently made a very sudden come back ☹️. My main concern is that I believe I have it on my bowels... the reason I feel this way is:

* Pain during penetrative sex, extremely bad

* Diarrhea/constipation

* Severe intestinal cramps

* Pain during some bowel movements

I’m not sure how I can get through my consultant during these times. In my follow up appointment in May, he asked me to continue my progesterone only pill for another 3 months (I obviously will!) and then if they haven’t subsided, I may have to have another lap.

I’m desperate for the bowel pain and complications to stop, they drive me insane!

How do I approach my GP for this in the pandemic?! I just want it over with.

[Renee2]

Hi ElliceSamara,

I know what it feels like, it can be unbearable at times. Hang in there girl!

I’m not an expert, but what helps me:

Buscopan and magnesium for cramps/spasms ,

Macrogol or similar for constipation and for

pain meds Naproxen/ Feminax.

I found out by recommendations by my doctors as well as trying out certain things. If you could discuss with your GP/consultant and maybe give these a go? Also, give it some time to see how you get on.

Take care,

Renee2

[Moon_maiden]

I have it, but still waiting to find out plans to deal with it.

Either speak to your gynaecologist or if you feel you aren’t getting anywhere your GP and ask for referral to a BSGE centre.

I know how you feel, I’m taking Laxido and lactulose everyday, if I don’t it causes more pain, etc. Now trying Tramadol with paracetamol. Need to give it a few days to see if it’s working.

Ask GP for referral to the pain clinic if they aren’t prepared to help sufficiently.

Ignore covid stuff they are still working.

Good luck

[Imyogi]

Hey, I feel your pain. I’m in pain everyday since my surgery and tubal removal. Naproxen didn’t even touch the pain and I already take magnesium, peppermint tea, CBD oil and nothing is helping.

I recently had a prostrap injection which is basically a false menopause, your hormones get cut off. I’m less than a week in and it appears to have eased the pain but it’s still really bad, doubled over, not sleeping, affecting my ability to concentrate, bowels all over the place etc

My diagnosis so far was that I have severe Endo with an obliterated Douglas pouch - meaning there’s no gap between my uterus and my bowels, they’re fused together with Endo. I’ve also just had a scan which shows a 6cm cyst which was missed during surgery due to it all being a mess in there. Waiting to hear next steps and in the meantime I’m on cocodamol which is the only thing that takes most of the pain away.

If the pain is bad, you need to go back to your doctor. Pain is so hard to communicate and often underestimated. Good luck x

[Anastasia17]

I have managed my bowels symptoms /diarrhoea /IBS-D by putting myself on an exclusion diet since May 2019. It has helped me tremendously in reducing the pain, pressure on the bowels, diarrhoea, feeling drained, the level of inflammation in my body. It is not a given as I still fancy 'normal' food but if I do, I know I will pay for it. My diet is free from : gluten, dairy, soya, caffeine, chocolate (contains both milk and soya), brown rice, apples, tomato purée, hot spices. Instead, I have gluten free pasta, bread, cakes, flour, coconut /oat /almond milk, vegan chocolate, decaff coffee, rice, sweet potato, potatoes, quinoa, salad, I have reduced meat but not stopped it. I complement with magnesium glycenate, a good quality probiotics, vitamin D, C, iron. It has reduced the bloating too.

Hope you find what suits you.

[ElliceSamara in reply to Anastasia17]

Hi Anastasia,

Thank you so much for your response. I had tried FODMAP for 7/8 months which did help, but then I did have a horrendous flare up which lasted weeks so it did put me off trying it. (I’m a real foodie and was so disappointed to cut out coffee and heavily iced cakes!)

I think I’ll give this a go. Thank you again. X

[Anastasia17]

You can still have coffee via decaff coffee 😊☕.

Have you asked to be referred to a dietetician to guide you and identify which food your body reacts to. Having this support could also help you. 😊

[conkercat]

Hi, I had endo in appendix and damaged bowel. After my appendix was removed i suffered withe horrendous IBS. A friend gave me some Kefir to try and for me, made a huge difference

[LavenderLady12]

Hi, I have endometriosis and sluggish bowel syndrome so I get backed up quite a lot, and my endometriosis normally attaches to my bowel. It causes a lot of pain and adds to the Endo bloat. I would say avoid things like naproxen because they cause constipation, and stick to paracetamol based painkillers (zapain takes the edge off for me). Heat pads often help and I use dulcolax for a few days when constipated. This is an area I think doctors are pretty bad at. I'm still struggling with painful sex myself, and swinging between diarroeah and constipation is awful. For me, cutting out food that makes me bloat out has been so helpful, weirdly things like white versus purple potatoes, white versus brown rice and cutting out all meat has been so helpful.

Sorry if that's not much help, but stick with it, it will get better xxx

[Anastasia17 in reply to LavenderLady12]

I reacted badly to brown rice when I kept emptying myself through the day over 4 consecutive days. I have since learnt that brown rice has a component that actually irritates the bowels so is best avoided for us ladies with sensitive bowels. I was trying to be healthier, what a disaster! Back on white rice, I make it healthier by adding either green beans or green peas, no more problems! 💚