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Endometriosis UK
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Confused?! Is it possible to have endo symptoms without period? Damaged organs?

I currently haven’t had a period for at least two months, however I still get pain when going to the toilet and I can be constipated for a couple of days and then it can be normal. I also have a lot of pressure on my bottom (sorry tmi) of needing to go to the toilet but trying results in nothing, this can last all day and makes me very uncomfortable through the day.

Could this be IBS? Could endo have damaged my bowel or somewhere else and that’s why I still get pain/constipation when not on my period?

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Hi. 2 consultant have told me that my ibs has probably been miss diagnosed and is likely due to the endo and should improve after surgery. I think they are closely linked.

I have a lot of pain in my bowel which is nearly everyday throughout my whole cycle now. I don’t have any problems with urgency or feeling like I need to go but I have endo on my bowel.

Based on my own experiences it sounds like you could have ibs or you could have endo on your bowel. Get it checked, don’t leave it because as you probably know the worse it could get.

Try and monitor yourself to see if it’s food related or caused by stress. That might help you determine if it’s ibs or not.

Hope you feel better soon!

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Thank you for replying!

I’ve got a lap on the 22nd of this month but it’s a general gynaecologist who said he can only look at my woman’s bits basically! Which isn’t great because most of my symptoms are bowel related.

I’ve been told for the last two years that’s it IBS and been on many different tablets which haven’t helped at all!

I also went into hospital in July due to when I went to the toilet to do a number 2! (May be a bit TMI, sorry) it literally felt like I was giving birth and it was horrendous pain I was crying while on the toilet! Got told that it may be appendicitis and got sent home even though the pain was when I was going to the toilet!

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Oh no poor you, I totally sympathise.

It’s not great they sent you home for suspected appendicitis!

For about 6 years now I have had pain going to the loo, mainly for a wee but the last few years it’s painful in my bowel too. My pain is getting worse, literally the cramps are so bad my body was shaking yesterday and I couldn’t breath properly. It’s hoorendous so I know completely how you feel and also it’s quite scary! I have cried a lot sitting on the loo over the years.

I had a lap recently and he treated parts on my womb but also found endo on my bowel. The surgeon wouldn’t touch it and has instead referred me to a bowel Endo Specialist. Having the lap will be good, at least it will finally give you some clarity as to what’s going on and hopefully they can treat any superficial endo whilst their in there. If they find something more serious they might send you for an mri but then hopefully they’ll have a clear picture and know how to treat you.

I’m glad you’re getting it checked, my pain is definitely getting worse and I’d hate for that to happen to you. Hope your lap goes well, try not to worry (it definitely wasn’t as bad as I expected.) 😊

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Ps: if you don’t mind will you let me know how your lap goes? I’d be interested to hear what they find.

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It’s horrible! My life literally revolves around how I wake up and how my stomach feels that day to what I feel I can do!

How did your lap go? It’s great that they’ve referred you! What do you think you’ll next step will be?

I just want some answers, fed up of being in so much pain and living such an unpredictable life at the moment!

Thank you, I’ll definitely do a post once I’ve had my lap! This site is really helpful and it’s lovely to speak to people who have or are going through cause I don’t think anyone can truly understand that pain we go through!

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Hi, I passed out last year I was in that much pain sitting on the loo trying to go for nr2, I had my period at the time. Then l started to have pains just before opening my bowels and was going for a wee very often even when I wasn't on my period. Long story short after a transvaginal scan and ultrasound I was diagnosed with endo. I had a laparoscopy last month with 2 surgeons - an endo-specialist surgeon and bowel surgeon present who found endo on my bowel and a recto-vaginal nodule along with extensive scarring tissue and number of endometriotic cysts(stage 4 severe disease). I had the cysts and endo off my ovaries removed at the time and now waiting for 2nd lap next month to sort out the rest. I was lucky that endo hasn't penetrated my bowels yet so surgeon will only need to shave it off. I advise you get your bowels checked for endo too because if it is infiltrating it is a more complex surgery to get it removed which will require a colostomy bag post op for a few months etc.

Also worth looking into endometriosis diets to help with general wellbeing and bowel health.

Re no periods for 2 months - did you do a pregnancy test? :)

Hope your lap goes well x

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Thanks for letting me know some of your information and I hope you’re feeling better after going through all that, could I ask what some of your symptoms were?

I was also on my period when I went through that awful time! It was horrible! It is a worry when going to the toilet to what pain you may be in!

No pregnancy test - only 23 and not looking to have children yet! Changed my birth control as I was having erratic bleeding and it was so painful having periods and this has managed to stop them although last month I had a lot of brown discharge which was unusual!

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Definitely do a pregnancy test, just to rule that out. Any unusual bleeding (you mentioned brown discharge) should be followed up with a pregnancy test.

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Definitely not pregnant! Thank you for the advice though!

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My symptoms were heavy bleeding, very painful periods. I also had diarrhea and sometimes vomitting on first day of my period. Once I was at work stuck in the loo for ages being physically sick and having diarrhea at the same time (gladly sink was next to me so I wasn't sick all over the floor! My colleague had to call an ambulance..) Almost constantly bloated belly, pain during sex, lower belly pains mid cycle, fatigue.

I was advised to have mirena coil fitted after my lap next month to hopefully stop periods for good which would stop the pain and hopefully prevent endo from coming back. Because of my severe endo I might have a chance to get pregnant with ivf but probably never naturally.

To be fair I changed my lifestyle which helped ease the pain considerably. I've lost a stone through eating healthily and generally eating in smaller portions and also do pilates and high intensity interval training for fat burning. Since I lost weight my bowel pains haven't been as bad and I also feel stronger physically and mentally. All this helped me personally.

Btw husband didn't take my 'period pains' seriously until he found me passed out on the bathroom floor last year! First gynae consultant I saw told me they were just period pains and I simply needed to have a baby and the pain would just go away afterwards..

I'm just happy now I'm having the op which will get me back to living normally again. :)

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So nice to read that what you’re doing is making you feel better in yourself and about yourself!

I can also match my symptoms with yours! It’s such a horrible thing to go through!

I was also advised on the Mirena but am very unsure as I’ve read a lot of negatives about it.

I agree with the eating, I recently joined slimming world and eating more fresh food and making my own sauces etc has helped a lot. I did feel very unwell over Christmas because I ate a lot of stuff I don’t usually and also drank alcohol!

My boyfriend is sympathetic to a point haha! I don’t think he understands all the girl stuff!

My first gynaecologist told me that I was getting all this pain because I broke my leg and my muscles had to compensate and that’s why I get the pain which me and my mother walked out completely mind boggled and not agreeing with what she said, unfortunately.

Hopefully the op gives you some sort of normality back into your life! X

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Endo thats severe can cause permanent damage and lead to chronic pain that doesnt just correlate with periods. My pain is constant. I have chronic pelvic pain. My IBS was endo and not IBS. It took over a 15 years for a proper diagnosis so the damage has been done!

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Wow, I’m sorry it took so long for you to get a diagnosis! This has been going on for about three years now and I’m finally at a place to see if I have it!

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Probably longer tbh but just as much as my fault, aa well as Drs. I had painful, irregular periods in my teens. I was popped on pill. I was diagnosed with 'IBS' at 17. I had investigations into my bladder/kidneys when i was in my early 20 cuz i kept passing blood clots, getting infections. I had one Kidney stented, didnt do the other. Then by 28 i was waking up in night passing out, throwing up in agony. Lived with that until i was 31 where blunt forced trauma led to PID. Drs thought i had an STI. Lap confirmed stage 4 deep infiltrating endometriosis of all my female organs, bladder and bowel. After the PID my pain went from inconsistent to consistent!

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Funny enough though, all along, my symptoms of endo never correlated with my period. I had severe symptoms at any point of my cycle, probably mainly outside my period. Hence why I and Drs never thought about Endo. So its definitely not just a 'painful period' disease

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That’s what was concerning me, I haven’t had a “proper period” had spotting and unusual discharge or when I was going for a number 2 I would have blood when I wiped but I still have the pain in my stomach, especially bowel related! When I’m not on my period!

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My periods got lighter and longer over the years too. To point it was mainly brown discharge. I read somewhere that lighter periods correlate with worse disease. No idea if its true or not. But i sure havent had heavy periods with endo.

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I wouldn’t say my periods are heavy but I could be on for 3 weeks, it ruined my sexual relationship with my boyfriend because I would be on my period for so long, then I thought I was no longer on and then would bleed after sex. It just really put me of doing it after that!

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I am 40 now and only now seeking help and advice for really bad pains when I need to go to the toilet (number 2) i too have had "IBS" since my teens but nothing has ever helped it, no one ever mentioned Endo until I had my Son via emergency C section and they mentioned it. I have never had heavy or super painful periods, if anything they are long but light, brown discharge mostly, and then one really heavy one every few months. If anything having my son has made things worse but that could be lack of sleep, diet or loads of things!

I have my first gyne appt in a couple of weeks and i dont hold out much hope as it seems even the gyne consultants dont have a clue what endo is or what to do about it! My GP gave me Noriday to stop my periods but that made me bleed 26 days out of 30 so I just stopped it yesterday. Pains are worse but my hormones much be all over the place.

I am researching diet and supplements to possibly help, I hope that I would get an end to this when I hit menopause in a few years but reading on here I now know this might not be the case if it is on my bowels?

I hope you get on ok, keep us posted and I would welcome any advice too!

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Hi, how did your lap go today? X

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Had my pre op today, op is on Monday next week! X

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hi, how did it go yesterday?

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They found no endo. Was diagnosed with pelvic congestion syndrome which I had never heard of and after some research it does Link in to all my symptoms. Still recovering and resting but so nice to have some answers!

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wow ok, it's good to be diagnosed though and you will now get help :) x

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Hi there. My endo pain came with upper abdominal pains some days and severe nausea sometimes and lower back pain sometimes and not related to my period. It took a while to be diagnosed. I also had to empty my bowels 3 Times a day and a pressure feeling in my rectum that came and went. I also would be woken at night by cramping central abdominal pain. I had lots of gastroscopies and colonoscopies before they realized it was endo. The episodes would go for about 6 weeks at a time. Then I would be ok for a few months and then I would feel it coming back and think “ oh no here it comes” before I had 6 miserable weeks. I would also lose weight as es-tu g made the pain worse. Emptying my Bowels helped the pain. It’s a wierd disease . It can imitate lots of other conditions. That’s why 80% of women with endo are told they have irritable bowel syndrome before they are fisnlly correctly diagnosed. Progesterone helped me amazingly so I have been lucky such an easy tablet works so well. I as better in days.

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