Bowel endometriosis?: Hi hope everyone is... - Endometriosis UK

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Bowel endometriosis?

Jawaireyam
Jawaireyam

Hi hope everyone is well as they can be,

I wanted to ask if anyone has bowel endometriosis for definite and which kind of symptoms they were experiencing? As I’ve recently had an mri scan showing possible deep lesions in bowels, but they were not able to say for sure until they do a surgery which I’m waiting for at the moment. I wanted to see which kind of symptoms others were experiencing with bowel endometriosis?

Thank you x

50 Replies
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Hi there, I’ve just received MRI results showing adhesions involving my bowel too. The only symptoms I’ve had in relation to them is bowel movements that cause horrendous period pain only when I’m on my period. That’s the only link I’ve made between it all x

Thank you for replying! Oh really bless you I completely get you it can get very intense! As I’m really struggling with bowel movements all the time and the pain that comes alongside this, with periods and without. Oh right yeah, with my symptoms I feel like it’s getting more and more intense each day and can’t do much until surgery.

Thanks x

I have had bowel endo for years and had to have a bowel resection in July this year. Very intense surgery. Symptoms of bowel endo were excruciating internal and rectal pain, rectal bleeding, up to 10-15 bowel motions a day.

Jawaireyam
Jawaireyam in reply to Ollie2512

Thank you for replying, oh no bless you that must have been very daunting, I hope your well as you can be now, how was the recovery?, as my specialist are saying that due to the severity of my symptoms It may be a much complicated surgery. Oh right, i can relate as I’ve been getting really severe pains there too and it feels as if there is a lot of pressure always, was that the case with you? wow that is a lot bless you, as the more intense it’s getting the more bowel motions I have each day which is quite painful at times.

Thank you for sharing that, appreciate it and hope you are as well as you can be x

I had stage 4 recto vaginal endometriosis. I had surgery in February of this year. My rectum was pulled up and over my vagina on the inside (I had to look at a diagram and even then I’m still puzzled how that happened) and completely adhered them together. It was so Extensive it took over 3 hours. It was so bad they surgically pinned my ovaries to my abdomen for a week 🥴. That was a feeling I could have lived without (and the catheter lol).

When I had a period (I’ve medically stopped it for the past 3 years) every time I needed to have a bowel movement I would get a sharp shooting rectum pain that would take my breath away and I would black out for a moment. I would have diarrhea 6-8 times a day. I couldn’t eat any fruit or vegetables without them coming out without 40 minutes. Then as the years went on I would have the black out diarrhea on a daily basis.

Thank you for replying, wow that is a a massive ordeal you have been through, how was your recovery from the operation?, oh no bless you that sounds really complicated, I too have symptoms of recto vaginal endometriosis but since my last surgery everything has been more complicated and intense. I cannot believe that, I haven’t heard of anything like that seems so complicated and intense hope everything is well now?,

Oh wow yeah with period mine does also seem to get worse, although at the moment it is painful constantly with extreme amount of pressure and up to 6/7 bowel motions if not more a day, bless you that is very painful definitely if you were blacking out, as I also get really sharp pains which means I am unable to move. Yeah that is very intense, I also struggle with diarrhoea, constipation on a daily basis and just want the pains to stop.

How are you feeling now? Did the surgery help this? X

I’ve been suffering with excruciating pain and heavy periods for years. I had a uterine ablation in 2018 & it’s made the the problem 100x worse. Ended up with a tubo mass on my left Fallopian tube which I had removed in Feb. This surgery caused an infection which was treated for 3 mths unsuccessfully with over two mths of antibiotics and several dashes to hospital in ambulance due to uncontrollable pain. I was on morphine and everything you can think of. Ended up very poorly. The final dash was in mid July where I ended up with emergency 6 hour surgery. I had an awful abscess in my pelvis. I also had terrible adhesions which had taken over my right ovary, tube, appendix and my bowel. I ended up having the lot removed and my bowel respected. I thought that would be the end of it but no 😢. I’m due for more surgery on 04/11 to have biopsies of my womb and possibly a hysterectomy. Thankfully I’ve had my children but I’m only 41! It’s been a rough few years and I really hope they sort you out xx

Jawaireyam
Jawaireyam in reply to BeckyKbo

Hi Thank you for replying,

I’m so sorry to hear that, it is really such a horrible situation to be in, women on here are such an inspiration, aw bless you that is a lot to go through one thing after the other, oh wow I cannot believe that honestly, that is such a scary position to be in, omg bless you that is such a long surgery, how have you been since the operation?, I’m so sorry to hear that you have been through all this you really are an inspiration! So strong. Omg really that is so soon! Would you have preferred to have a hysterectomy in July rather then a surgery again?,

only 41!! I cannot believe that you have been through such a horrible experience, it makes me really sad that so many people go through things like this. I really hope everything works out for you and you finally get everything sorted as you deserve that!

Thank you so much really appreciate it, best of luck for the surgery hope everything works out for you too! Xx

BeckyKbo
BeckyKbo in reply to Jawaireyam

Hi. Not been good since surgery. In constant pain and bleeding. Been in bed for the last few days in agony and away with the fairies on pain killers. I really hope the surgery next week gives me some relief xx

Jawaireyam
Jawaireyam in reply to BeckyKbo

Bless you it is really awful to go through, and especially being in pain all the time and not being able to find the right relief! I hope so too! Best of luck I really hope everything goes well for you and it does get better! Good luck xxx

Hello.

I have stage 4 endometriosis which has obliterated my bowel, nerves, ligaments, pelvic side wall and pouch of Douglas. My womb is attached to my bowel and pulled the bowel out of place.

I too have pain every day now.

The bowel pain is excruciating before and during a movement. I can be ok one minute then this horrible spiky pain stops me in my tracks and then remains that way. Once I’ve made my way to the bathroom I have to grip on to the sink and deep breath to stop me passing out, I go very sweaty, very weak and feel like I could vomit due to pain and it’s just awful

With diarrhoea which I get frequently it’s even more intense and when I’m constipated it increases the amount of pain I’m in all day already as it puts a lot of pressure on the problematic area.

I’ve had four operations so far, two have been extensive excision and the last took 6 hours and they moved my left ovary and both tubes that was 2 years ago and I’ve had an mri scan over the summer which has confirmed it is back again and involving the bowel.

I don’t eat any fruit or fruit juice at all now because it makes things much worse but do try have some salad or vegetables each tea.

Red meat seems to really upset my system too so I avoid that as much as possible.

Best wishes to you. Feel free to message me if you ever want to chat xxx

Jawaireyam
Jawaireyam in reply to Lily1986

Thank you for replying, and oh wow really that seems really painful, I’m also going through stage 4 and awaiting another surgery for this. I can relate to this so much as that’s literally what’s been happening with me, and bless you, it is really awful and horrible experience to go through and I begin being sick after as I just cannot tolerate it at times due to the severity of it.

That makes sense as diarrhoea for me is more or less each day too and as soon as I’m constipated it gets even more intense and I feel like I have so much pressure 24/7 that affects even passing wind.

Oh wow that is a lot to go through and still having to go through it again after all this,

Are you awaiting another surgery now??

yeah that’s makes sense as I’m intolerant to a lot of things right now, and have to be careful but any type of food can trigger it at times. That’s good, as once you know what to avoid it does help.

Thank you so much, I really do appreciate it knowing that others also are going through similar situations as I have been really struggling. I will do thank you so much. Good luck to you too xxx

Lily1986
Lily1986 in reply to Jawaireyam

Aw thank you, yeah it definitely helps to know there are others going through the same thing because it can be very lonely when no one close to you understands. Only people who have experienced it know how disabling it is.

My last appointment my consultant advised that further surgery would be total hysterectomy and very high risk so it was just left that I’d see pain management and have procedures for bladder issues.

However since that appointment I’ve suffered more regular rectal bleeding with my cycle and also whenever I experience a back spasm which I mentioned to secretary and now booked in for another appointment with endo specialist next week so unsure what the outcome of that will be.

Have you got a date for your surgery? Or has it all been put on hold due to covid crisis? Xxx

Jawaireyam
Jawaireyam in reply to Lily1986

Yes I completely agree with you! it really is, you can have a great support network around you but still feel lonely, as only the people who are going through it can really sympathise!

Oh really no way that is massive and yeah it is a huge risk, at the end of the day you know what it is right for you and the pain that your in, I was waiting to see a bladder surgeon also regarding issues but haven’t seen one yet.

Oh bless you, I realised with each cycle I had also had more and more rectal bleeding aswell which i didn’t get before, but they said I just have to wait for the surgery in the meantime. That’s good hopefully they can help you a bit more, or do some sort of procedure to see the extent of it.

No I haven’t got one yet, I’ve been on a waiting list for the past couple of months, I spoke to my consultant last week who said he would put a request in to get the surgery sooner but can’t tell me more due to covid, it is really hard due to covid everything is delayed for everyone and real struggle!

All the best xxx

Hi there,

The cramp of period pain is basically all around that area mine was a really high intense cramp and constipation also happens.

Until they do the actual lap this is when they cans determine it.

I had bowel, bladder and it was around my kidneys.

Wishing you the best of luck with your investigation.

All I can advise is having pain killers ready when the pain starts.

Thanks 🙏

Hi thank you for replying.

Bless you, yes that is how I’ve been getting it I suppose as I do keep getting such bad cramps and extreme amount of pressure and pain which I really struggle with. Oh right okay Likewise, as I’m awaiting another surgery to confirm and see what else is going on there.

Oh really around your kidneys? As I’ve been struggling with severe pain in my kidneys and the doctors have put it as endo related because they couldn’t find anything else. May I ask which kind of symptoms you were experiencing for kidney related??

Thank you so much, you too, yeah that is what I have been trying I am also on hormonal injections to decrease the pain but haven’t had much luck so far. X

It’s always been pain that’s the main issue and also urge to pee a lot when I’m due on and on my period.

I got a late diagnosis age 41 and suffered for so many years living on painkillers for the duration of my period.

Lost too much blood and then got anemia so make sure you replace with good iron supplements with high b12 too.

My pain Got so bad I had to go to A&E wasn’t sure if I had an early miscarriage.

It was only then my operation got fast tracked and I then got diagnosed after my long operation I have stage 3 endo.

Work on stress and diet and pain management and good supplements a good B complex is really good.

All the best is a horrible disease that we have to put up with - I’m waiting for another lap as it’s returned 2 years later 🙄

Take Care x

Hi I have had endometriosis both on the outside and the inside of my bowel.

Outside: diarrhoea, more bowel movements than normal. Lots of pain during bowel movement when on my period.

Fixed colon due to endo on the outside of my bowel: stabbing pains 6 times a day and excruciating pain when passing stools every time. Diarrhoea. Nausea

Endo on the inside of the bowel: stabbing pain when opening bowel every time. Bleeding from backpassage during periods. Diarrhoea. Many many food intolerances developed. Nausea.

Hope they sort it for you. Its a tough one to handle.

Thank you for replying I really appreciate it,

Oh right yeah that makes sense as on the outside that is exactly what I have been experiencing too! And some days it has been getting worse each day, oh really bless you it is really horrible to go through this, as the pain literally makes me sick due to the excruciating and stabbing pains all the time.

I literally feel like I can sympathise on this one, as i more or less have the same symptoms as you and have gotten intolerant to a lot of foods and things I wasn’t intolerant to beforehand.

Thank you so much, I really appreciate it as I know I’m not the only one with these symptoms and other people are also going through this. Yes it really is really tough to handle but we all got this!

Thank you so much x

I'm really sorry to hear that but you're right, we are not alone. Have you found anything that helps with the food intolerances? Have you tried probiotics, that helped me a bit. Has your GP referred you to a dietician? Worth asking if you have a lot of foods you can't eat.

I also take Pycnogenol (80mg a day) takes one month to kick in. It really helps with endo period pain. It is an anti inflammatory so may also help with bowel pain. I think reducing the inflammation helped me eat more foods.

Worth also having a look at serrapeptase:

endo-resolved.com/serrapept...

These plasters help quite a bit with day to day endo pain, they were recommended by my Chinese medicine specialist.

amazon.co.uk/dp/B07H4NQD3L/...

They have herbs that help endo pain and inflammation symptoms.

If you can afford it worth seeing a traditional Chinese medicine specialist. Happy to send you my TCM doctor details via DM if you are in London

Good luck with it all xx

Thank you so much and it makes it more bearable knowing that there are so many people going through it and we all are strong enough to get through!

At the moment I haven’t, as I have lost my appetite completely but I found being gluten, dairy and being lactose free has helped calming it. I didn’t know I was intolerant but found out during my pcos journey that I was and was told to go gluten and dairy free as that had a huge impact. Oh really that is good that it helped you a bit, as I haven’t tried probiotic just yet but it is definitely on the list as some other people have told me to try it out!

I haven’t actually asked my doctor to refer me but I will mention it in my next appointment as it will be worth asking most definitely. Thank you

Oh right I haven’t actually come across them before , can you get them over the counter?

Yes I found that anti- flammatory medications and home remedies helped me a bit to reduce the pains at times. Yes definitely, as the days I take some anti flammatories I’m able to stomach food.

Aw thank you so much I cannot tell you how much I appreciate this! I will definitely check all these out and be purchasing if I can as I do need some other things.

That’s great thank you so much, I’m not in London but it isn’t far from me which I may think about but thank you will definitely contact you if I need to.

Thank you so much! This means a lot to me and really appreciate the support and advice.

Best of wishes xx

Hi, hope it all works out. Might be worth trying a few things for relief while you're waiting for your operation. They are all available over the counter. Holland and Barratt sell them, Natures Best website is good too. Many other sellers also x

Thank you so much really do appreciate the support and advice!, definitely I have been really confused as to what would work best and what I would need so definitely will be trying these out!, that’s great thank you will be looking into them and see what there is.

Thank you for your help! X

I was experiencing needing the bathroom very frequently alot of days like 5 mins after I went in the morning. It's very painful but I now suffer from hemorrhoids too, although when I finally got my hospital appointment for my lancroscopy on 1st September they lazored off what they found, but I now have the coil fitted too. I was getting very sharp cramps alot where I couldn't move some days, I had to get the ambulance out once as I was worried and thought I may of had bowel cancer,luckily I haven't. My bowels still give me alot of pain but I've not long had the endoscopy,

Try some hot baths I find that helps with anything, wheat bags.

Jawaireyam
Jawaireyam in reply to Witty91

Thank you for replying,

I’m sorry to hear that hope your well as you can be,

That seems very intense and a horrible situation to be in, and yes I can relate as i went from opening my bowels once to being so much more frequent within a day and in 20/30 mins.

Oh bless you that is a lot, and oh that’s good that they did and how you finding the coil? And yeah I get you as some days it does get really extreme to the extent that I begin being sick and feel like I will collapse, and yeah it is better to be safe and knowing as anything can happen.

How you managing the bowel pains? As yeah I have been trying to do that as no medication has helped, I’m also on the injection which has started to decrease it a bit.

Thank you so much I really appreciate it x

I have had a nasty bowel endometriosis since 2008,the pain is like going through labour pain, this year I was off sick for 5 weeks, it’s attached to my uterus, so the only option is to have everything removed which i refused, so what I did the past 4 months is to stop drinking coffee and guess what touch wood, my period just comes and goes without a single pain. Wish you luck

Jawaireyam
Jawaireyam in reply to Omoty

I’m so sorry to hear that, bless you it is really horrible to go through all that for years on end without proper treatment either. Wow I can say it is really extreme but I didn’t think would can be as bad as labour pain!, that makes sense as mine is too apparently but I’m not sure the severity of it until the operation, and really no way that’s really good! I’m not a coffee drinker as such but I’m so glad that helped you and actually helped reduce your pain!

Thank you so much you too! X

Hi, I have stage 4 recto vaginal endometriosis. I had bleeding from my bum during my period for about 20 years. Thought it was normal. In my mid-30s pain started getting unbearable - bowel movements were excruciating when I was bleeding and I also used to get shooting pains up my bum at random times. Endometriosis wasn’t just on my bowel and the pain got worse and worse including painful bowel movements all the time and constant pelvic pain. I go to the loo 3-5 times a day and do have issues sometimes with diarrhoea but I try to avoid processed foods which helps me.

I was diagnosed with irritable bowel syndrome in my 20s, which in hindsight was probably the endometriosis.

Hope you get your surgery soon. I found it much better once I had a diagnosis. Got referred to a really good specialist and had excision surgery about 18 months ago. I still have symptoms and will need more surgery but it really has helped.

Jawaireyam
Jawaireyam in reply to ferns80

Hi hope your well thank you for replying,

Wow that’s a very long period of time, I thought that was normal aswell until I started to get a lot more off it and raised the question to my consultant, and aw bless you I’m sorry to hear that must have been really horrible, yeah omg I can relate to that as I randomly get such bad shooting pains from the back the pain is so extreme and I can’t even do anything to help it at the time, and I definitely can relate, as I have constant pelvic pain which I cannot sit or stand in one place more then a certain period of time. That’s definitely true, as I’ve also started to lean off processed food as it has more of an impact when I do. That’s really horrible to go through, as my bowel movements are similar so painful and have to go up to 5/6 times each day.

Yes it most liked was, as they do definitely get mistaken with IBS as I was told that before I had my scan and I knew it wasn’t that.

Thank you so much! That is so true as I have been referred and ever since they have helped me so much within a space of 5 months so grateful for that. That’s really good to hear that it has helped, wish you all the best and hope it gets better soon! X

Hello, I hope you’re doing okay. I have stage 4 bowel & colorectal endometriosis.

I’m waiting for surgery to separate my bowel from my uterus, then I can have my hysterectomy. My symptoms range from a very tight, low, bearing down pain all around my lower back & around to my lower belly. Sometimes, I feel a burning sensation but at other times, a hot water bottle does seem to help a little. I regularly have a twisting, scraping, pulling sensation. It just feels like barbed wire is wrapped around everything inside & someone is pulling it tighter & not letting go. Every time I have a bowel motion, the pain is just sickening, it’s like this thing has a tight grip hold on my bowel, the pain is relentless.

Jawaireyam
Jawaireyam in reply to helby2507

Hi thank you hope your okay too, oh bless you. I’ve also got stage 4 but haven’t been diagnosed with bowel until my surgery which I’m waiting for at the moment.

How long have you been waiting for surgery? I’m sorry to hear that as it is really horrible to go through that. And oh right I can definitely relate to that, as sometimes mine starts of low bearing and then gets more extreme at times, and that’s good it helps a little, I found that that tens machine helped a bit but that’s about it, as I’m on injections and that has only begun to decrease the pain to an extent.

Aw bless you that must be really difficult to bare, as it really does feel like that sometimes and I do get you as I have to be physically sick as I cannot tolerate it at times it really is sickening and a struggle.

Do you use anything else for the pain??

Wish you all the best x

Hi there,

Reading all these comments makes me want to scream at the world that there is no research into this. How is this allowed to happen to us?

... anyway, I had my lap last October which found my bowels and ovaries stuck together in some places. I have stage 4 and the found it in other places too but my pain is nowhere near as bad as other people. I have a terrible stomach, it doesn't really matter what I eat I just fluctuate between constipation and diarrhea with maybe a few good weeks here and there. I find Swedish Bitters has really helped me on that front, so would recommend giving it a whirl! I get "spiky" and kind of pulling pains down around my colon as food moves through my bowels. For years I spent ages googling bowel cancer and every GP made me take an sti test when I insisted this wasn't right or normal - not fun.

Other symptoms include the 'hot poker' rectum pain. It's super sharp but thankfully short so is manageable. Also as soon as I need the loo, even for a pee, if I don't go asap I'll be doubled over in pain, these are like gripping cramps and I need to push against a solid surface to manage it. Also causes dizziness but I think that might be my body panicking.

For me, getting diagnosed was the most pshycologically positive thing that happened in years: I'm not crazy, I don't have cancer / IBS / chrones / STIs and I totally understand all the pains and what's happening.

Hope this helps in some way. Sending love.

Hi hope your well as you can be,

Yeah I am completely on the same page as you, I cannot believe so many people are going through this and there isn’t even enough awareness or research! Really grateful for the awareness this week all over the media and news!

Oh right how have you been since the operation?, and yeah bless you, I’ve also got a wide spread everywhere and awaiting surgery, and aw bless you it is really horrible going through this all the time, I would say mine is like that with my bowel movement being one or the other. Oh really thank you for that I never heard of that so will definitely look into that!, yeah it is really draining not knowing what is wrong and being mistakenly diagnosed with other things. Yes you should always go with your gut as at the end of the day only you know your body well and what’s wrong!

Thank you for sharing that, as I also get that at times it is so sharp that I cannot tolerate it going from the back. I completely get you on that it is super painful! As if I don’t go straight away it increases in pain massively and it is so painful, with both bladder and Bowles.

Yeah I get you it can be, I also experience sudden dizziness and being light headed as soon as the pain becomes stronger it is really a struggle for us!.

Definitely that is so true as you know your body well and you know when something is wrong!, as when you have a diagnosis atleast you can work around it and when you don’t it does have a massive Impact mentally too. Definitely a great mindset to have too!

Thank you so much it really did and I really appreciate it! Wish you all the best x

All of these replies are interesting to read. I’ve been having pain and spotting bleeding between my periods but putting off a laparoscopy. I had fibroids remover but my pain is still there. It was mentioned that I could have some endometriosis and I get bowel and rectal pain that comes before my period. I read Someone said about pain that stops you in your tracks when opening your bowels and I can completely relate- I have found that buscopan helps me as it’s something that stops bowel cramping. Has anyone found this helps them too?

Hey! I’ve never had an MRI but I have had 2 surgeries for endometriosis - both of which involved my bowel, first of which was about 4 years ago. First time around my bowel was apparently “stuck to” my pelvis. Sheesh.

Symptoms I get:

- pain often during and after bowel movements (like my insides aren’t happy adjusting to the loss of poo they’re enduring)

- grotty feeling in my stomach unless I have the diet of a saint and drink 19 pints of water an hour forever and ever amen

- big time nausea and vomiting, loads and loads (actually the reason I went to see the GP who referred me for endo), it’s a never ending nausea sickness love story

- classic endo symptoms: extreme period pain (with extreme bowel movements), pain before period, etc. No pain during sex until recently though.

Just loads of bowel issues, all the time. Feeling physically anxious from it before realising what’s causing the anxiety, but nothing appears to be happening.

Just sat here I have weird pulling pains across my stomach, above my belly button - who knows! I’ve had heaps of tests done and they always come back with nothing abnormal.

Hope this is helpful. Best of luck and endo warrior love to you, it sucks a bunch. Xxx

Hey hope your well,

I’m sorry to hear that you have been through that, it is really horrible to go through. Honestly people here are such an inspiration!

How have you been since your surgery?, wow that does seem really intense surgery to have.

Yes! I can relate to that as before and after I would be in pain definitely much more if I don’t go straight away! As it strains so badly, literally that’s true! And I’m so bad at keeping up with diet and water due to loss of appetite and nausea all the time so I’m unable to keep it up.

Aw bless you definitely! Really that is good as I didn’t think they would refer just for sickness! I’ve been on so many anti sickness as I just feel sick from the moment I get up till I go back to bed it really is it an adventurous journey aha!.

Yeah the classic symptoms aha I can definitely relate, I’m on injections but still get really bad pain more or less everyday but it has decreased to an extent!

I definitely was really confused as I didn’t know if my Symptoms were actually bowel related and so many people have helped on here!

Bless you that is! I get surgical pains a lot from previous surgery and was told lesions were attached on there! As literally the same I’ve had so many tests and usually apart from the two conditions I have everything looks the fine.

Thank you so much it does help! You too! So grateful for the support from everyone, everyone is such an inspiration! Wish you all the best xxx

Mine isn’t confirmed as I haven’t been able to get an MRI or lap during COVID, but I have many symptoms of bladder and bowel endometriosis and multiple healthcare providers seem pretty sure I have some kind of endo. Things that have helped my bowel symptoms are pureeing fruits and veggies (like smoothies) so that I’m not ending up asking my intestines to process chunks, quercetin (it’s an antioxidant and I was shocked how much my symptoms improved a few days after starting it), and probiotics- a LOT of probiotics.

Have you been evaluated for small intestinal bacterial overgrowth (SIBO)? There’s some studies that an imbalanced gut microbiome or “leaky” gut can make endometriosis worse, as it creates inflammation and worsens nutrient deficiencies. A naturopath found that I have it through a stool sample and recommended specific probiotics plus a few other things to try to clear it up (remains to be seen if it completely works but I’m having less diarrhea so that’s something). There’s also an antibiotic you can try for SIBO - it’s much more treatable than endometriosis itself so I figured it’s worth a try to see if it alleviates my symptoms.

I second the recommendation for pycnogenol - it didn’t do much for me but there’s early research that it can help with endo and it doesn’t have a lot of side effects.

Hi thank you for replying back, oh really that is annoying as due to covid everything has been delayed! Do you know when you will be able to get seen??

Oh bless you, it is the not knowing that is the worst as being surrounded by so much pain constantly and not having a diagnosis but once they do mri or the laparoscopy they should be able to give you some sort of insight of what’s happening!

Yea I found that helped me at times, but these days I have a complete loss of appetite cannot eat without gagging, oh right I will look into that thank you and yes I have been told by a few people about probiotics and how they have helped them!

No I haven’t, I was told that they I would need a colonoscopy but haven’t been told when as of yet, oh right I didn’t know that, and wow yeah that’s great I mean every little thing that can help is amazing! Yeah definitely it is, where did you get the antibiotic from?

Yes! I was told about also which is on my list for trying as anything in this moment of time will be helpful! Yes that’s the thing it doesn’t work for everyone.

Thank you so much! I really appreciate the advice and everything means a lot! wish you all the best! Xx

I’m feeling much better due to the measures I previously mentioned, and since I’m in the States with bad private insurance, a lap or MRI could wind up really expensive, so I’ve decided not to risk the surgery. I could probably get one in two or three months if things get worse. Every gynecologist I’ve talked to is concerned that a lap could actually cause more pain for me.

You’d most likely need a prescription for the antibiotic, and you probably would need some kind of test first. I’m not sure how that works since my naturopath is the one who found it.

I’m doing an intensive naturopathic program to get my gut microbiome in check. I was put on a lot of strong mood stabilizers when I was in graduate school years ago and my naturopath believes that there is a chance that they threw off my body’s ability to properly process medications and toxins (one of the medications could even worsen period pain). I also had an IUD that was somehow part of the problem and having it removed has been helpful (now I’m having periods again for the first time in over three years, but they’re bearable so far). I’m also doing intensive Eye Movement Desensitization Reprocessing Therapy (EMDR) to try to address past trauma - a huge percentage of women with endo have some kind of childhood trauma and there are theories that the body stores the pain if it isn’t processed. I think some of these things are helping and I’m trying to stay positive. One benefit of COVID is that I’ve actually had time to do weekly therapy.

I have had rectal bleeding for: 40 years. It was like having a period out of the bowel. I had a hysterectomy at: 28 years old due to severe endometriosis. I still have rectal bleeding. They said the lining of my bowel was very thin, and that I have a rectal ulcer. Even though they haven't said it is endo in my bowel the symptoms are like the reason I had my hysterectomy.

Jawaireyam
Jawaireyam in reply to ourmolly

Thank you for replying,

I’m so sorry to hear that you have been going through that for so many years it is really horrible, and oh wow bless you that is a lot for a 28 year old to go through, was that the last resort a full hysterectomy? How have you been since the operation?, aw bless you it does really suck, still having that bleeding and going through that still. Yes as only you know your body and you know when something is not right!

Will you be having further treatment such as scans or surgery for this?

I really hope things get sorted out for you too, wish you all the best xx

Hi had excision surgery for stage 4 which was found on my bowels. My symptoms were similar to ibs, I had constant diarrhea and pain in rectum when I would have my period or bowel movements during a period. After my surgery my symptoms went away.

Jawaireyam
Jawaireyam in reply to Staples7

Hi thank you for replying,

Oh bless you I’m sorry to hear that when did you have your surgery? How have you been since?, yes I can relate as it was the same with me! As they are both so similar it often gets mistaken for IBS, yes my bowel motions each day are all over the place from constipation, diarrhoea, stools and extreme amount of pressure which causes such intense pain! Bless you it is a really horrible situation to be in, oh wow that’s really good I’m really glad that it has! This gives me hope as I really need something done as each day it is getting worse!

Thank you so much, definitely gives me more hope that after my surgery it may get better, best of luck xxx

Staples7
Staples7 in reply to Jawaireyam

Hi, I had my surgery a little over two years ago. I know it’s such a terrible thing women have to go through on a daily basis. What’s amazing is knowing after my surgery once removed I did not know how bad I was feeling since I was so use to it and than all my symptoms went away. Best of luck to you are you seeing a endometriosis specialist? Make sure it’s excised not ablation.

Jawaireyam
Jawaireyam in reply to Staples7

Omg I’m so glad to hear that! A lot of women have told me this that they didn’t even know what normal felt like after! As they were surrounded by this never ending pain beforehand so this deffo gives me a lot more hope! Thank you so much, yes I am seeing a endometriosis specialist mainly a whole team and just waiting for surgery and a few more scans yet! Oh right thanks yeah definitely

Best wishes to you xx

Staples7
Staples7 in reply to Jawaireyam

Best of luck to you!! I hope you start to feel better after surgery, glad your going to a specialist!

I was diagnosed with Bowel endometriosis last September. They found it in my bowel through doing a flexible sigmoidoscopy (camera in your lower bowel/rectum) then did a biopsy. This was done as my doctor referred me to the gastroenterology department first, due to my bowel symptoms being the most severe with blood and mucus discharge and constipation/diarrhoea, as well as loss of appetite and the debilitating pain where I couldn't even stand. I was in so much pain I used to scald myself with a hot water bottle to relieve the symptoms, but even that didn't cut it. The pain even got so bad that I was throwing up and spent days lying on the sofa/bed. That's pretty much the crux of my symptoms, oh and bloating! But I would be happily bloated every day for the rest of my life over any other symptom of this disease.

It was that team that then referred me to gynaecology after they confirmed endometrial tissue in my bowel. Because of Covid everything has been delayed but hopefully having surgery early next year which will involve a bowel resection to remove the part of my bowel with endometrial tissue as well as the rest of the endometriosis that's outside my bowel on my womb, vagina and pelvic cavity. Sorry to hear you've got it there too.

Hi there, I have recently been diagnosed with severe endometriosis affecting my bowels.

I have had extremely painful periods for about a year now, the worst part is the back pain that I get in my lower right back which seems to spread out across the whole of my lower back and sometimes bum cheek.

When opening my bowels the pain is so bad that it makes me vomit. I also completely lose my appetite about a day or two before my period and takes about a week before I feel like I can eat properly again.

I was on the contraceptive pill for 10 years and decided to come off it in March this year, however that’s when I started getting bowel problems (I think it must have been suppressing the symptoms). Since then I have had very frequent bowel movements everyday (about 15 times a day), sometimes solid stool, sometimes just mucus.

It’s so debilitating and I’m so sorry you’ve had to go through this too. Hoping you get some answers soon. X

Jawaireyam
Jawaireyam in reply to Emmygem

Hi,

Thank you for getting back to me I really appreciate it,

Oh really bless you, I’m so sorry to hear that you have been going through that because it is really horrible at times and very draining.

My symptoms have been getting worse recently, and I’ve had extreme back pain from lower radiating up to my upper back I was thinking to go a&e but I am not sure they will do much.

Aw bless you I really struggle with Nausea but not physically being sick as such, I also get pain sometimes just before or after emptying my bowels. Omg that is a lot! I think as mine is just beginning to get worse so I have up to 6 motions a day, I’ve been on the injection so I’m not sure why I’m still struggling with pain, I have different motions everyday aswell.

Thank you so much, the doctors said they will do surgery but they might not look at the bowels and I am not sure what to do as the pain is so bad and I feel like I’m not being heard properly.

Thank you best wishes to you too xx

I have bowel endo, and my symptoms include: Horrific cramping during period, cramping and pain during ovulation, extreme mood swings, chronic depression that fluctuates throughout the month (making me feel like a psycho), anxiety, horrible bowel movements during my period, sharp and stabbing pains in my rectum during those BMs, pain to the point of throwing up and having full body shakes, hormonal imbalance (high estrogen and very low progesterone), very heavy periods with a lot of clotting, irregular cycle (my full month cycle lenght is usually 35+ days), irritable bowel syndrome is a huge symptom, chronic fatigue syndrome, insomnia, ovarian cysts, breast cysts. There is more that I could write. I had my first surgery last December, and it did lessen the amount of pain that I was having, but now (11 months later) the pain is back in full swing. I thought I was going to have to go to the ER last night because of a bowel movement. The pain is not as extreme for everyone, so I always like to say: Even if you THINK for a split second that you have endo, get checked and start seeking answers and help. You are not alone, and you should be listened to. Stay Strong!

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