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Endometriosis UK
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Looking for Some Support/Ideas Please?

Hello Ladies,

Looking for a bit of support and wondering what people would recommend in terms of pain support and just generally trying to be a bit more comfortable when bloating/constipation/ spasms occur and what people with similar symptoms were diagnosed with - where your Endo was?

I’ve not had my lap yet but my GP and women’s health physio are both suspecting Endo. I’m currently an urgent referral but have been waiting 6 weeks and still haven’t heard anything.

I’ve had two really bad episodes of pain which left me unable to sit on my bottom for most of the day and that pain killers just wouldn’t touch. The pain was excruciating and I couldn’t walk at all.

For years I’ve had tummy problems that they put down to IBS- I’ve had colonoscopy and endoscopy and I’ve had internal examinations of my bladder as well with no concluding results. I’ve had ultrasounds which again have been clear. I have persistent UTIs and when I pee my bladder feels like your skin when someone Chinese burns you- it feels as if it’s stretched from the inside? It’s a weird feeling but really uncomfortable. I have really bad urgency and embarrassingly so have wet myself a few times in the past year due to pelvic floor problems- my physio said my muscles are all too tense which is the opposite to most pelvic floor problems- I also get recurring kidney pain which can be sharp or dull. Wondering if the kidney pain is common with others?

I’ve also recently been going from being really constipated to then having the runs and it’s just making me feel rubbish.

My GP started me on Mefenamic Acid and I’m not sure if it helps or not? It makes me feel super bloated and at times I have no appetite at all. Wondering if others have experienced this? Or whether they think it helps?

Sorry for this very long winded post just wondering what people have tried that’s helped as I’m getting impatient waiting and I feel as though my symptoms are getting worse.

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Hey xx

It was bladder problems that drove me to the gp and led to my rv endo diagnosis. I spent a long time thinking I was having a kidney infection.

If your symptoms worsen do keep lobbying and ensure that everyone is aware so that you stay visible and at the right place in the queue.

I found reducing my fodmap intake, avoiding my trigger foods (a food diary can help identify them but commonly things like gluten, dairy, red meat, refined sugar, soya, additives in processed foods) and a good probiotic did help my bloating to a reasonable degree.

I had interstitial cystitis and found antihistamines, organic towels and changing to paraben sles free toiletries (using none on the sensitive area) and extra care on wiping helped, eased my burning problems.

I found retrain pain.org very useful resource for chronic pain management. I'm now on pregabalin for post op nerve pain, and use a u shaped cushion my physio recommended which means there is no pressure on my coxxyx to trigger coxxodynia.

Just some ideas, and of course we are all different so they may or may not help. Xx

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If you don’t mind me asking was your endo very bad when you had your lap? That’s a big worry of mine that they go in and it’s bad- I’ve been having these pains for about 9 years but never put them all together until I met and became friends with someone with endo, so I owe my recent investigation to her really!

I hadn’t thought of the antihistamines- I have also been thought to possibly have interstitial cystitis but again it’s not been confirmed or denied just a “oh you might have” by the GP so I think I’ll definitely give that a go along with a big diet change!

It might be worth mentioning as well when my pain was excruciating last month I went for acupuncture and although it increased my flow, the pain was almost instantly reduced - almost as if it directed the blood the right way out of my body, my tummy felt less bloated and I was able to get comfortable.

Just now a lot of things for me a trial and error but finding this site and the support from lovely people like yourself replying is definitely helping!

Thank you for taking the time to reply! Honestly, means a lot! 💕

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Firstly endo symptoms and severity dont necessarily match so try not to worry. Stress has a big very physical impact on the body I have learned in my 2 yead endo journey and depressss the immune system.

I had my symptoms lifelong but never linked them. My gp found a sizeable lump even before my lap so i was always looking at severe recto vaginal endo, just didnt know it.

It meant that but for an ovarian cyst they couldnt diagnose and treat at the same time unfortunately.

I had a deep infiltrating 3.5cm rv nodule attaching bowel to vagina and adhesions but sigmoid and cystoscopy revealed no endo inside the bowel or bladder. I also had it on my utero sacral ligaments only had two small plaques on my bladder. If you have bowel involvement and arent already i would definitely reccomed to go to a bsge centre rather than general gynae. I benefitted a lot from having the same surgeon with the advanced endo training.

When i came round i was told i was facing more surgery but was reluctant. I tried all the hormone treatments but it just got worse, apparently rv endo is often hormone resistant.

I had the surgery about a year ago and it did resolve my neck pain, bladder problems and improved my bowel situation. My dyspareunia is still a problem as i needed a vaginal repair (better than than it having grown the other way into my bowel! ) but finally showing some sign of improvement and gone from impossible to merely moderately painful, i have some residual nerve pain in my coxxcyx but that is very manageable these days.

Sadly I developed meningitis subsequently, which was a random isolated thing, which has left me with persistent issues, but for that the surgery would overall be a pretty good success story.

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It sounds like you’ve had a really tough journey so far, I hope it gets easier for you.

That’s really helpful about the BSGE Centre I’ll definitely look into that as well!

I get a lot of spinal pain, just wondering did they say why your neck was sore because of the endo? Was it inflammation related?

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Sorry that's an auto correct typo, should have read back pain

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I’m in the same position as you but I was reading your post and sounded like I was writing it about myself. A lot of the symptoms you have I would have myself. I am waiting on lap too. I spent considerable amount time googling hollistic approaches when my world was turned upside down with endometriosis and so I switched to a plant based diet and cut out all meat/dairy and processed foods. Switched to almond milk gluten free cheese ( if I craved it) I couldn’t believe the reduction in pain for my periods the rectal pain you mentioned was dramatically reduced most months. It took about 2/3 periods after I switched to see a difference. I would also take Pycnogenol which is a tree bark supplement and can help with heavy periods. I would take mefanamic on day 1 of my period as it’s usually the worst but I would agree not sure if it works as I would have to still take parocetomol with it. I have to say tho my pain has significantly reduced eating plant based. I loved meat too but if it reduces the pain it was a sacrifice I was willing to make. Don’t get me wrong I indulge in cheese once in a while or processed fast food but a while later regret it but 99% of the time I would stick to it. We have to enjoy ourselves after all. I find exercise /yoga does help too. I do still live in pain but it’s massively reduced.

The cystitis is only something that has recently in the last few months has escalated. I found lots of herbal tea and I take a small glass of cranberry juice first thing in the morning.

A lot of people can’t understand my sudden “veggie” transformation because I don’t tell them the real reason why but you just got to find what’s right for you. Good luck x

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I think it’s hard as well, my boyfriend has been really supportive except the diet front! He keeps saying why change everything when you don’t even know if you have something! That can be hard as I think people don’t understand the daily feeling of being bloated, constipated(or having the runs), agonising pains that you don’t know when they are coming or how long they will last so for me it makes sense!

I will ask how you’re going without cheese? I love cheese 🙈😂 I think I will keep a good diary though, I’d tried in the past as I was told I had IBS I took a diary to the dietician and she couldn’t find any link with my pains, which now in a way makes sense! I do know that pasta and pizzas make me look about 9 months pregnant so I have limited these foods a lot!

Do you still eat fish? I think I’ll try the tree supplement too, I have a great wee health food store where I live and I went in before and the guy was great he gave me magnesium, omega 3 tablets and raspberry red leaf tea (caffeine free) and I think it has helped!

I’d said in my reply above as well, I got acupuncture when my pain was the worst I’d ever had last month and I feel it definitely helped, my flow was heavier but pain was much much less. I’m trying to find more natural ways than packing myself with medication as my tummy can’t always cope with them either so sometimes feel like it’s a vicious circle!

Thank you for your reply! I hope you get your lap soon and you can move forward! Positive vibes 💕

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I know what you mean my bf is supportive although he has Haitis hernia and Ibs and I try to convert him as I think the inflammatory diet style does work wonders but he doesn’t budge lol! It’s hard when all the docs and consultants diagnose you and you don’t really know but really once you get your head around it, it becomes well I might have this let’s work on the now and the pain relief... that was the case for me. Nearly a year later I’m still waiting. The consultant told me his waiting list was at two years so I knew I was in it for the long haul so I had to look into other ways and I wasn’t keen on full time medication. I find the gluten free cheese is ok but you just find a new food to fill the void. I did eat fish a handful of times but eventually I just gave it up as it goes through the same types of production as meat (hormones etc). I worked on a cattle farm in Australia and they pump hormones into the cows and looking back now adding hormones to my diet wasn’t helping. I must try the leaf tea thank you for that. I Also take omega 3 too. I did try Bowen therapy and that def helped the bloating for a bit then came back as I didn’t keep going.

It only took for my period to come when I first lived with my friend and I was lying on the bathroom floor not able to move with the rectal pain that she said that’s not right I googled it and that’s where I first heard about endo and suddenly all the pain/symptoms I had for years that was “just bad period pain” all made so much sense. Anyway sorry for the rambling if you find any other good tips please do let me know :) x

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So I went to the health food store, asked the owner if he new about Endo and he did - he was great advising the raspberry leaf tea I’ve been drinking and he’s given me magnesium, turmeric, Tumbiotix and calcium tablets - I also got the Pycnogenol you’d mentioned so I’ll see if it helps!

I’ve not heard of the Bowen therapy so I’ll have a look at that too 😊 thanks for your help! x

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Must look into some of them thanks for sharing :) hope you find your pain relief soon x

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