Rectal Endomitriosis

[Mclaughs]

I had a lap done 2 months ago and much of my endo was removed, I have so much relief in my bladder and reproductive organ area. Unfortunately, endo was found on my bowel/rectum and was unable to be removed. I am currently waiting for a consult with a colo/rectal surgeon (hello long wait!). My question is has anyone experienced similar symptoms with endo in this area: feeling of fullness in your rectum like you need to have a poo, pain like someone has kicked you right in the bottom, feeling of swelling/bruising in the anal/rectal area, lower back ache? If yes, anything you have tried to help? I am dying.

[Reggiefelix17]

Hi there sorry to hear they couldn’t touch the endo on bowel , I had surgery for this in June and yes I get all of what you are said !! Ans it’s bloody horrible !! But after surgery I’m like 60% better 😊

They removed a 4 cm endo lesion of my bowel right near my rectum... I’ve been left with a dual achey feeling in my bum if I sit to long or if I need to go pop but much better then before when I was dyeing !

Heath helps me and I’m on very good pro biotics which I do believe helps me so much x

[Mclaughs in reply to Reggiefelix17]

thank you so very much for replying! I'm so happy to hear that your surgery gave you some relief, I am not looking forward to having another surgery but if it helps even a little I think I'll do it. It's also really reassuring that you had similar symptoms, my general doctor had diagnosed me with IBS, possible internal hemorrhoids, etc. before I had my laparoscopy and finally confirmed my suspicions. ugh, just the most horrible disease, and so embarrassing, I can't tell everyone the reason I don't want to go do things is because my bottom hurts!

[Reggiefelix17 in reply to Mclaughs]

You are not alone I’ve suffered for so long with bottom issues I hate it I was losing stuff from my bum that no one should ever lose !

And they said oh it’s ibs ... then discovered I had endo all over my bowel

I will probably need more ops but for now I’m trying to stay positive 😊 I’m still in a bit of pain but the bum issues are so much better so I hope they can sort it for u honestly the pro biotics was a life changer !

I also had a hard time eating everything I have to be carful with anything that causes wind or upset in my bowel but that’s got better since surgery!

Keep me

Posted to how you get on because we all think we are alone in this journey but we are not x

[Mclaughs in reply to Reggiefelix17]

I will try the probiotics, honestly it couldn't hurt anything at this point to give it a go! I will definitely keep you updated, I am trying to be hopeful that the colo-rectal surgeon is helpful when I finally get my appointment. It is hard to remember sometimes that you aren't alone in this, I think this site is such a help in connecting with others who "get it"

[Reggiefelix17 in reply to Mclaughs]

Yes I know how it feels to want to try anything!

I hope something helps Soon ans they get you sorted . This is fab this site I’m also in a group on fb which is fairly good too , xx

[Marianna16 in reply to Reggiefelix17]

Hi hun, when you say you was losing stuff from your bottom can I ask what? I’m in a very similar situation and I’ve googled the hell out of my ‘symptom’ but nothing is coming up! X

[Reggiefelix17 in reply to Marianna16]

Hey yeah sure I was losing pus mucus and blood all the time and worst when I was on my period I had bowel infection all the time ... but since my op it’s much better !

[Marianna16 in reply to Reggiefelix17]

Oh my that’s exactly what I have! I never even thought it could be a symptom of bowel endo!! Thank you so much I’m going to follow it up with my GP and consultant ASAP x

[Reggiefelix17 in reply to Marianna16]

Yes it’s definitely the biggest symptom I had terrible I hope they sort you out I had a 4 cm end lesson on my bowel not in it on the out side behind my vaginal wall , x

[Marianna16 in reply to Reggiefelix17]

The mucus has only started the last couple of months but had ibs symptoms and bowel problems as long as I can remember x

[EKP31 in reply to Reggiefelix17]

Hi what probiotics do you take please? I have the same and also had 20cm of my bowel and rectum removed which was covered in endo but I still get really gassy / IBS like symptoms. Thanks

[Reggiefelix17 in reply to EKP31]

I take pro bio boost by neals yard at the moment but I believe they maybe changing them soon ,

I’m a distributor for them I honestly couldn’t be without Any pro biotics my first bowel consultant highly recommend I take some xx

[EKP31 in reply to Reggiefelix17]

Great thank you! Xx

[CelestialFluff]

Hi. Sorry to hear you are still in pain. I have some bowel endo and your symptoms sound familiar.

Things that I have found that have provided some relief are: not getting constipated (apologies TMI!), pregabalin (stopped the nerve pain...), yoga (to stretch stuff in there - evidently with endo we end up tight and tense in our pelvis which makes sense!), plant based diet - I was desperate and cut out dairy and meat. Took a few months but pain levels definitely reduced- think it is meant to reduce inflammation.

I think different things work for different people and you may have already tried some of this but if not you never know! Hope things improve for you. Xxx

[Mclaughs in reply to CelestialFluff]

The not getting constipated thing seems nearly impossible, I can't seem to have a normal BM to save my life, if I take anything for constipation I go WAY in the other direction (if you know what I mean). I am already gluten free, as I have coeliac, and I don't eat red meat, but I could give not eating dairy a try! I'll also look into pregabalin, I think it might be close to gapabentin, which my provider won't prescribe me anymore because he feels like people "over-use" it, very frustrating.

[mel5479]

Hi I was diagnosed with this too when I had my lap in July to drain a cyst from ovary. I also have the same symptoms and I get a burning sensation in the bowel as if someone is scraping your insides. I was diagnosed with mild endo in 2009 but on my lap this year it's severe widespread with adenymosis too. I was meant to have it all cut away yesterday and a hysterectomy but I postponed as am told there is no cure. I also am waiting on a bronchoscopy as they think it's on my air ways. Currently on decapeptyl which has eased the symptoms you are experiencing but the side effects are horrible

[PaoPetite]

Sorry to hear you are in pain... my ad others Endo sisters say we all have experienced similar to worst symptoms. Be patient and try to be positive (it is very hard to do so) when they found I had rectal Endo I waited for a whole year and that was was going to be operation #5! All of the symptoms you described I had but I also feel constipated and when finally opening my bowls the pain was and is unbearable as endometriosis symptoms are returning after almost 2 years pain free! The last operation was done by an Endo specialist and after the op I felt like a new person, having Endo it’s the most exhausting devastating experience a woman goes through and we somehow need to survive the pain. By the way having said all the above reducing diary products and red meat helped a little bit and also taking CBD drops helped me a lot. Try everting your can and see what your body accepts the best, some people say exercise... it didn’t help me because of the Endo attached to my nerve in the rectum so any enforced movement ended up in a massive flair up.. yoga didn’t help either, but I still tried everything I was recommended in this platform in my case CBD was my only relieved.

I hope you find the best option to cope with the pain.

All the best xx

[Mclaughs in reply to PaoPetite]

hi! thank you so much for replying! I had no idea CBD was available here in the UK?? I am an American living in the UK, and someone told me I couldn't get it here - is there shops or online or only dr. prescribed? I lived in a state in the US where marijuana was legal and so I have used all sorts of products for pain management and I did find it effective, better than pills.

[PaoPetite in reply to Mclaughs]

Yes! Marijuana was the only natural medicine that controlled my pains! You find CBD in Holland & Barret but also I was so desperate with pain that I had to ask a friend of mine to get me marijuana 🙈 I am always embarrassed to say it (being illegal and all that) I never smoked it in my life, but I tried as tea I boiled it as if it was any other herb 🌿, let it rest for a few mins and the 🍵 worked wonders!!!!

How long are you going to be in the Uk for? Are you in private care or NHS? NHS will take ages for you to get treated!! I moved to Germany a few months ago to have IVF treatment because as you may know endometriosis also causes infertility, when I was diagnosed the first time back in 2014 the doctors never mentioned the possibility of me being infertile or that endo will return or that for a fact Endometriosis is not curable!!!! Thanks to that I cant conceive naturally anymore if they would have told me there first time when it was mild I would have tried to get pregnant straight away! Anyway long story short I am here in Germany, I have been seen by the specialists in a matter of a week time! the endo specialist!!!! Non Th gynaecologist! a week!!! 👏🏻 Explained the situation and they gave me two options, to have another operation straight away within two days or go under IVF I chose IVF! all in a matter of a week! The treatment starts in January and went to see the doctor in November!!!! I had to wait for a abdominal ultrasound for two bloody months! Here the gynaecologist has the ultrasound machine in the practice! Oh and by the way IVF under the NHS wasn’t possible because it’s for people without children ONLY! And you have 2 tries only! despite the fact that my husband doesn’t have any children I couldn’t get the treatment because I do 🤷🏻‍♀️, here in Germany you can have as many IVF treatments as you choose to have as many as appropriate for your circumstances regardless whether you have a child or not! So I am very happy on that sense! Yes it’s not free but it’s not expensive either I think is similar to the USA...just to give you an idea, I am paying for the medical insurance here as much as I paid taxes in the UK 🤷🏻‍♀️ towards all these services but I still had to wait for over two years suffering to the core with pain, loosing my job eventually, only because the so called “ NHS policy it’s different” having to wait for a simple ultrasound for two months!!!! Or an MRI?! An that’s for urgent cases ... now that’s of course my experience, but I haven’t heard a single case of endometriosis that had been treated within two months of being diagnosed 🤷🏻‍♀️, that’s my a personal advice only, how long to wait to see the colorectal specialist? Like 3 months? 6 months? that’s how long I waited to see the colorectal specialist! Hopefully it’s not much longer in your case! Once you see him probably you will

Have the date of the procedure which will take another 2/3 months depending how complicated your result is after being seen my e colorectal specialist.

All the best darling I really really hope you find the best option to ease your pain.

Xxxx

[Mclaughs in reply to PaoPetite]

I know the stigma attached to marijuana is bad, I don't care, if it's something that helps with the pain of this horrible, ugly disease then do it! haha.

We were both diagnosed around the same time, 2013 for me. I had symptoms for many years before that but because I had a baby conceived naturally (I was very young and think my disease hadn't progressed as much) doctors dismissed endomitriosis for a long time. I'm so sorry you are dealing with the infertility associated with it, but so so glad you are able to get the treatment you need in Germany!

I'm in a weird situation with healthcare because I'm seen at a US military hospital (that's why were here - 2 years left) and I can get care quickly through them for general things, and their gyn did my most recent lap, but any "specialist" I am lumped in with NHS which I'm sorry to say I feel is absolute rubbish. I was diagnosed with coeliac and it took me nearly 6 months to get in with the GI doc here and the colorectal office hasn't even let me know when they CAN see me even though my stuff was referred over to them in Oct. It's very frustrating, I know I'm not dying, but my discomfort keeps me from living the life I would like to.

[TB71]

I had a lot removed from my bowels 30 years ago. Surgery wasn’t as advanced then. I still suffer but probiotics do help keep the intestines in better working order and a lot less wind. Over the years I’ve learnt which foods increase pain and need to go urgently! I cut down on wholewheat and barley products almost completely then introduced them gradually. I’m now peri-menopausal and having to deal with new issues. So I’ve found going on almost a total plant base diet has really helped. Red meat is so hard to digest and puts too much pressure on the intestines!

[sazood]

Hi I’m in a similar situation to you. I find that heat pads can help sometimes and I have also invested in a tens machine for some relief. Definitely worth a try. Good luck.

[magz25]

Hi there! Yes i have the exact same diagnosed september 2018 3 years AFTER my hysterectomy! I didnt have my ovaries removed during the hysterectomy, but after finding the endo in my bowel in sept, first thought it was bowel cancer, same symptoms, they sent me back to a gynae to remove my ovaries and lesions and found i had extensive endo in my pelvis and omental and bowel3.5cm lesion. So now im still waiting for mri and bowel surgeon appointment to sort out my bowel problems and pain! I so get what you saying its really crappy they symptons and have changed my life completely!

I wish they had sorted my bowel during my ovary removal but he felt it was too risky and long op.

I have never had endo before my hysterectomy so how i ended up like this who knows🤷‍♀️ I had a hysterectomy due yo large fibroids and adhesions after four ceasars and heavy bleeding that i had to have 2 blood transfusions!

But your not alone, and unfortunately our nhs trust has major long waiting times and endo is not on top of the list!

Good luck and let us know how you get on!

[Mclaughs in reply to magz25]

I wish they could have taken care of mine while already in surgery too! I understand now though that gyn docs are just not practiced enough in that area and a specialist really needs to be the one to take care of it. Can I ask what the MRI is for? Can they see the endo with that? I've been told no imaging can see endo?

[Alita88]

Hello I had a 14cm long x 6cm diameter endometriosis adhesion on my rectum. they excised it and performed a rectal resection which made me have an ileostomy for 6 months. I also had endo on many other areas. first scan after surgery, no endo, they did a great job. I talk from my own experience, the relief is just that, relief, the cells are there and will continue to grow any time you bleed. I had horrible pain for two years and I kept searching solace in pain relief (natural, chemical whatever) and the problem kept growing month after month. Get it excised if you can, your specialist will say what's the best option but if hormonal therapy doesn't work don't wait too long for op or you'll end up like me while blissfully thinking all sorts of stuff will "cure" you or give you temporary relief. And believe me I tried everything! lots of money wasted as well. good luck!