Symptoms really all endo related?

Hi everyone, I just wondered if anyone could give me any advise or info. I suffer many different symptoms from headache, pain, nausea, diarrhea, acid reflux, bleeding between periods, belching etc... My question is, does anyone know if this could all be endo related? Or possibly something else going on too? I've been to the doctors but they just gave me anti acids and don't do any tests. I'm worried that I have something else going on as well s the endo. I have stage 4 endo, Mainly affecting my bowel and womb and have recto-vaginal endo. I don't want to sound gross but another thing I'm concerned about is that some days I keep needing to go for a poop!! It's very annoying and is interfering with my life! My bowel is just all over the place. Does anyone else experience these symptoms? Thanks for reading!

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  • It could definitely all be endo related but I obviously can't say for certain. I have a lot of bowel symptoms - bloating, stomach cramps and needing to go the toilet a lot.

  • Thanks for you reply! It helps to know that I'm not the only one!

  • When I am on my period, I find I need to poo more often and sometimes relives my pain!

  • Hi Emmy. Oh yes you just described me! I have all the above symptoms and more which are worse on a period. My gynae told me endo upsets the whole system. I've been up half the night with gastric tummy pain and I'm due on. I have bouts of diarrhoea where going relieves the pain except I want to keep going and finally take Imodium or codeine. In fact my whole digestive system is up the spout! I do take Landoprazole for acid reflux which helps a lot. You're not alone. Take care hope today is a good day.

  • Hey, that is definitely somewhat reassuring knowing I'm not the only one! The lansoprezole are good, I just sometimes worry that there is another cause for some of the symptoms. I don't know about you but I find these symptoms (especially the diarhea and nausea) really disruptive and make getting on with a normal life pretty much impossible! I hope today is a good day for you too!

  • Yep it can get you down. Always need to know where s loo is always getting dizzy spells and nausea migraine tum pain joint pain you name it. After years of suffering endo the consultant told me endo disrupts the whole system I felt a bit reassured. I've always every day got something wrong lol!

  • Yea I really relate to the loo thing, I find that I suffer with anxiety now because I get worried about loos etc which then just makes you feel worse lol. My gynaecologist seemed unsure as to wether the acid reflux problems are related. Some doctors seem to think it's all endo related and then others say differently so it can be confusing. I always worry about cancers and stuff like that, it seems to me that endo can have a lot of similar symptoms to bowel and ovarian cancer etc so I always worry about those things. I've had ultrasounds and stuff so try to tell myself that if there was anything else going on in that area then hopefully they would spot it on the scan. Do you have regular ultrasounds and stuff?

  • Me too I have anxiety full stop lol. I was admitted to hospital twice and they diagnosed gastritis and then said "oh well you have endometriosis" as if to say that explains it. Yes I usually have transvaginal ultrasounds as have a mirena cool now and see my gynae every 6-8 months now. Hate ultrasounds as get panicky in case she says oh your endometriosis is back. I'm in peri menopause now so she said things should slow down a bit. I hope so!

  • 4 years ago when I was in grade 7 I was really naseaous, sick to my stomach, had really bad cramps and had diahrria the first and last day of my period which I thought was normal. First I was told it was acid reflux, they gave me tablets, they helped in the sense I could eat, but I lost complete and total appetite and all the other symptoms stayed. I was taken off of them then my doctor said I had electrolyte deficiency and needed more salt in my diet, once again the pain stayed, then I went to doctor after doctor who all told me it was in my head, so I believed them and lived with pain thinking I was crazy and eventually got used to it.Flash forward to last summer I developed really heavy bleeding and when I saw the doctor I was put on naxopren, I had no pain but I still had all the symptoms from before and then after 6 months I saw a gyn and she said I had endo.

    Your symptoms line up with what I've experienced from endo, please push to see a gyn and if your doctor won't have it see another one and explain your symptoms.

    Best wishes:)

  • My life is a shadow of what it was due to endo on my bowel and everywhere else. I stay either constipated or running to the loo. I don't like leaving home much. Your symptoms sound exactly like mine and I've had 3 surgeries. you are not alone.

  • Hi, i have the same type of endometriosis as you, I remember seeing posters about the condition and thinking 'at least I don't have that, just Ibs' and it turns out I have both. They are very linked I think. People don't understand when you say foods affect it so I find it's easier just to say I have lots of food allergies- they still just think I'm picky but it's just rotten feeling so ill. I allowed myself a glass of wine and a gluten free pizza on New Year's Eve and spent the first week of 2017 in agony, in my maternity jeans even though I'm not pregnant sadly!

    I just wanted to say that I feel your pain. You may want to get tested for H-pylori, which I think can be linked to benching and can cause gut issues and autoimmune issues. I asked to be tested for it as had heard it can be a trigger but my gp said I would be belching lots if I had that so she wouldn't test me. could be worth a try. My doc has given me laxido which helps with the constipation but I do feel that my endometriosis pains are getting worse. Mine is grade 4, in the 'pouch of Douglas'. I feel worst the week before my period when I also get lots of spotting. Can I ask if you get spotting due to your endometriosis?

  • Hi,

    So sorry to hear that you spent New Years ill, your not alone there though! I always struggle more at Christmas with all the foods and things! It's not fair is it everyone else enjoying everything and your just hoping that you feel okay!!

    I have been checked for H-pylori but that was a while back, I was convinced I had it but nothing showed! I wonder about stomach ulcer as they run In my family. I am now prescribed lansoprezole which are very helpful. I also have pouch of Douglas endo and yes I do always get quite bad spotting around a week after my period and it can almost be like my period is coming back, I get the crams with it too. I went to my doctor as I was concerned but she said it was most likely where my body hadn't expelled everything on my period. Have you had your spotting checked out?

  • Hiya, mine is a week before my period. I was worried that it's stopping implantation, My IVF consultant says that evidence has shows there's no such thing as short lute all phase and my doctor says there's no real way to test progesterone levels accurately as they'd need to test them throughout the month, so basically I have no idea what her my hormones are doing what they're supposed to after ovulation. The assumption seems to be that the endometriosis or adenomiosis is causing the spotting, or it's not been expelled properly from the last month, so similar to you, I do have a hysteroscopy booked for later in May though so maybe I will get some more info from that. I think it's all a bit of a complicated and unknown area but they're reluctant to say 'we don't know'. Hope you can get some answers and feel better soon xx

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