Endo/constipation : Does anyone else on... - Endometriosis UK

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Endo/constipation

Tessie70 profile image
Tessie70
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Does anyone else on here suffer with rather server constipation with they're endometriosis? 😕

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Tessie70 profile image
Tessie70
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Lovisa profile image
Lovisa

I do. Really frustrating and sore x

Tessie70 profile image
Tessie70 in reply to Lovisa

I'm sorry to hear this 😕

Do you get it all the time or just around your cycle?x

Lovisa profile image
Lovisa in reply to Tessie70

I'm constantly constipated, I'll maybe have a few days every few months where my bowels work everyday up to 5 times a day but then I'll go back to being clogged up again x

Tessie70 profile image
Tessie70 in reply to Lovisa

The gastro put me on purcalopride.

Its not a laxative, it helps work the nerves in your bowels.

It has helped I'm not as bad as I used to be. But I'm still not great before/after my cycle.

But from only managing to go once every 1-2 weeks. Now the most i don't go it 2-3 days. Sadly it can't be bought behind the counter, But.see if it'll help you atleast a little bit xx

Lovisa profile image
Lovisa in reply to Tessie70

Least something is working. I have a GP appointment next week so I'll ask about purcalopride, thanks so much for letting me know xx take care

Tessie70 profile image
Tessie70 in reply to Lovisa

I really hope it helps even just a little bit for you like it did for me. Anything has got to be better than nothing. But I do warn you the first few days of taking it I couldn't get off the toilet, and did black out a few times. I think it was because I was so blocked up. But I really hope it doesnt have the same effect. It's best to take it over a weekend when you haven't got work etc.

Fingers are crossed!! Let me know how you get on xxx

LolaLo3 profile image
LolaLo3

Hey yeah I do, I have just been diagnosed stage 4 and my bowel is also affected it’s is sitting over my tubes and left ovary which is covered in endo aswell as my ovaries.. so the pain is unbearable when I need the loo.. have you been checked for endo on bowel? X

Tessie70 profile image
Tessie70 in reply to LolaLo3

I haven't been checked for endo yet.

Been dragged from pillar to post. First Gyno not wanting to test me for it as it was to invasive and I was to young (24). But I went for a private consultation with a gyno and he reckoned he could feel a small area of scaring. So I've been forwarded back to the NHS to hopefully have a laparoscopy and find out for sure.

I don't know anything about the stages?

I'm guessing the higher the worse it is?

Sorry to hear that it also causing you so much pain.

Has anything they've done helped in anyway?x

StefaniaJW profile image
StefaniaJW in reply to LolaLo3

You need to get excision surgery performed by an endo specialist asap

Tessie70 profile image
Tessie70 in reply to StefaniaJW

When I got forwarded back to the gyno by the doctors I asked to be forwarded to a endometriosis one. And I had looked up that my local hospital did. But the doctor told me there was no such thing. So I've been forwarded else where 😓 but I've got to go through all the consultation again. So I'll talk to them and see if they've got anyone if they can bounce me back somewhere else.

Really getting fed up of being bounced around for this long

StefaniaJW profile image
StefaniaJW in reply to Tessie70

I'll contact you soon with names of endo excision surgeons. Are you from the US? What part?

Tessie70 profile image
Tessie70 in reply to StefaniaJW

I'm from the UK xx

Ash24601 profile image
Ash24601

Yes! I’ve been hospitalised countless times from it.

I had endo removed from both sides of my bowl last year. I am now awaiting another op as it left me with sharp rightside pain (which I didn’t have before).

It doesn’t necessarily mean bowel endo btw, as everything is so together near by endo on another organ could be having a knock on effect and bowels are very sensitive things.

For me I have to really try to find the right combination and timing of laxatives for them to work (learning that a combination of certain ones can have a better effect was life changing, it doesn’t have to be one or the other)

I have kept a food diary but my symptoms are daily despite what I eat (I’m 11 years into my endo journey). I find specific food doesn’t effect me (but I have a limited diet anyway) however I have to be careful with volume and fibre. I drink plenty of fluids before during and after my main meals.

I also try to move more unless it’s a really bad flare. I want to be an active person when endo isn’t disrupting that but if I am too ill to do my main sports I’ll go for a short walk on my lunch and I try to do daily yoga.

StefaniaJW profile image
StefaniaJW in reply to Ash24601

If you are back to being in pain after a year, it means the surgery was not excision surgery or was not performed by a specialist

Ash24601 profile image
Ash24601 in reply to StefaniaJW

Unfortunately I’m from wales and we only have one specialist and no access to England specialists.

However, I had this pain since the first night so they want to go back in to investigate.

StefaniaJW profile image
StefaniaJW in reply to Ash24601

I suggest you don't go in to "investigate" (unless they did something any surgeon can fix). The more surgery you get, the more surgery adhesions you get and if those who "investigate" are not specialists in excision surgery for endo, the risk is they might touch endo and then take those altered endometrial cells elsewhere (which can lead to new outbreaks in other parts of the body). My number 1 advice for women with endo is to ONLY let endo specialists touch them, otherwise the disease might get worse and spread faster.

Here in my country (Italy) endo specialists are not many, but those who are perform amazing surgery, with minimal risk of recurrences (also because women with endo are put on Visanne or other right after surgery to avoid them).

I've seen women with their intestine tied to their ovaries, endo on the bowel/ureters/bladder/ovaries conceive naturally after surgery.

PLEASE do not let anyone touch you unless they know what they're doing. Go to a foreign country if necessary.

Ash24601 profile image
Ash24601 in reply to StefaniaJW

He is an endo specialist and private is not an option, they have to go in as I regularly get obstructions so they are worried adhesions are blocking my bowel

StefaniaJW profile image
StefaniaJW in reply to Ash24601

If you regularly get obstructions, it's either because you are not cleaned well when they get in or because your body forms adhesions incredibly quickly. If the latter is what's causing the trouble, I suggest you take nattokinase or serraptase or go for visanne. Dieting, regular sleep and exercise are just as important too

Worriedwarrior profile image
Worriedwarrior in reply to Ash24601

Hey Ash24601, I'm also from Wales, having surgery in August. Can I ask where you had surgery done?

Ash24601 profile image
Ash24601 in reply to Worriedwarrior

Hi, good luck with your surgery! I try to keep personal details low on here as I don’t want my bad luck to worry anyone (as we all likely know the same drs lol) but I’ll be happy to chat via pm

Worriedwarrior profile image
Worriedwarrior in reply to Ash24601

Awesome, would love to hear any experience good or bad hun, drop me a msg! X

StefaniaJW profile image
StefaniaJW

Absolutely yes! 1) Endo is connected to intestinal imbalance, so you might suffer from constipation, diarrhea or both. Take probiotics for at least a month and change your diet by eliminating all processed and refined grains and animal proteins and switch to fresh fish, free-range eggs, pastured meats, LOTS of in-season fruit and especially raw vegetables (at least three servings a day). Drink at least 2 liters of water. Do mild work outs at least three times a week (preferably 5) such as walking, gentle swimming or light yoga. 2) It could be intestinal/Douglas pouch endometriosis. Taking hormonal drugs that help stop endometriosis from growing or getting surgery can help in extreme cases.

Char411 profile image
Char411

I suffer from both constipation and diarrhea but more so constipation. I don’t have endo on my bowel but I do have it in my pouch of Douglas and rectum and a redundant colon. I take magnesium citrate twice a day which helps and keeps it manageable

LolaLo3 profile image
LolaLo3 in reply to Char411

Hi , can I ask where you get the magnesium citrate from? Im trying everything I possible can for my loo trouble’s .. I’m waiting for my op so till then I’m trying everything. Thank’s xx

Char411 profile image
Char411 in reply to LolaLo3

Magnesium Citrate 200mg 180 Tablets by Nutribioticals - 6 Month Supply of Magnesium Tablets, that’s the one I get and it’s from amazon. I also take bromelain which is a natural supplement in tablet form derived from pineapple stem that’s good for your digestive system. It was recommended to me and I’ve found it pretty good.

I feel your pain, constipation is the worst.... I dread it. Try hot water with lemon in the mornings too wake up your digestive system.

Hope it works for you and good luck with your op. I had mine in May and i haven’t noticed many benefits yet apart from no more passing menstrual blood when I open my bowels on my period.

All the best xx

Hi Tessie, I have found a good probiotic helps, bought from my local health shop. I take a powder form everyday (1/2 a teaspoon) and noticed an improvement on my bowel movements by the 3rd day and keeps improving ever since. I’ve also heard taking a magnesium supplement can help.

Test21 profile image
Test21

You should get yourself checked for this. Endometriosis can grow in your bowel but also in the cavity next to your rectum. Have you have an endoscopy yet?

Tessie70 profile image
Tessie70 in reply to Test21

I've had this problems for a few years now.

Seriously bad pains before and at the beginning of my cycle

Long cycles , spotting inbetween.

Bowel movements were awful and I kidney stones. Kept collapsing?

So first I was under urology, then my doctor said last year it sounds like endometriosis. Forwarded me to a gyno, she stuck me on the mini pill and discharged me, didn't want to do lapascopry as it was harmful as I was young . It stayed at bay for 3months then got terribly worse again. Then was forwarded for the gastro. They couldn't find anything wrong. Tried loads of diets nothing helped.

I decided to go for a private consultation with a gyno, he said he could feel a small amount of scaring. And now I'm just waiting to be forwarded back onto the nhs for another consultation with a different gyno to then hopefully get the ball rolling again.

1Tia1A profile image
1Tia1A

Hola Tessie,

I am so sorry that you are experiencing this. To answer your question...

OH YESSSSS!!! 😨 Too many times I have strained so hard that I saw orange stars, green clovers and the new blue diamonds of "Lucky Charms". I even start sweating and have to take my cloths off at times. Then there are other times that I just sit there and count the bathroom tiles on the floor. Now, I have hemeroids and my rectum swells making it even more difficult to go.

I really haven't come across any natural remedies to help. So, I eat a lot of veggies, seafood and fruits...soft foods. I drink a lot of water, etc plenty of exercise and take stool softeners. Fo the swelling in my rectum, i lubricate it with castor oil. That takes away the swelling and aching. I also have gastroparesis which is basically a very slow digestive system from top to bottom... There is nothing much that I can do but, this has been a big help for me. I pray that this helps you. Sending healing energy to you from across the miles. 💕💖💕

Cupcake1617 profile image
Cupcake1617

I do but it’s mainly from taking medication for the pain and for such a long time, my GP tried me on senna which didn’t do much and then gave me a sachet you mix into water which has been better x

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