Bowel endometriosis or not? : Hello new to... - Endometriosis UK

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Bowel endometriosis or not?

Adeno2020
Adeno2020

Hello new to this ... not really usually one for forums but don’t know where else to seek help.

Last year I got a diagnosis of adenomyosis after developing sepsis 3 weeks after giving birth (lucky ennough to catch pregnant and forever grateful). But for 4 years I’ve always been told doctors ‘think’ I have endo which now my gynae has said with my symptoms she don’t even need to do a lap to say I hve it (but obv for diagnosis she has too and is this year hopefully) but she’s that sure I have it. Anyway my question is... anyone who has endo on the bowel can you help me as I’m 70% sure I do ..

sometimes it can be a few days before I go or if I do it’s either loose or I’m constipated. I find when I’m about to have a bleed or I am bleeding and I go toilet i have this HORRIBLE SHOOTING pain up my bum that it shoots me off the toilet ?

I don’t know if it’s me being paranoid because for years when drs say it’s in you head you start to believe them ... but I was wondering if these are the symptoms ? Thankyou

70 Replies
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Hey,

I would be interested to hear what girls have to say on this.

I had a lap done by a "general" gyne and I'm certain she has missed some around my bowel. I have the same symptoms as you. Sharp shooting pains and the same pain straight after sex.

I called my local hospital and managed to speak to the clinical director. She agrees something else could be up so she's sending a letter the the BSGE clinic with the images from my lap.

xx

Adeno2020
Adeno2020
in reply to Stacey85

Sorry to hear that!! Yeah I hear so many stories of them missing it first time? I had an ovarian cyst removed and asked if they saw any and they told me they have to go in another way but it’s rubbish my surgeons weren’t even gynae surgeons though just a&e surgeons ... really thinking of going private ... hope you get it sorted

Stacey85
Stacey85
in reply to Adeno2020

I'm trying to decide if I should go for a private consultation. If my GP refers me then they can look at my records and all the images from my lap. I can't afford treatment private but I'm hoping they can give me the ammunition I need to head back into the NHS. XX

Adeno2020
Adeno2020
in reply to Stacey85

That’s what I’m thinking, my gynae rang earlier to say she now wants ANOTHER ultrasound before lap. When I only had one in feb... it’s ridiculous

If you see the right consultant that works in the NHS as well, they can add you to their NHS list.

When I had lap, the consultant discovered it all around the pouch of Douglas as well as other areas. He thought there wouldn’t be much at consultation, but confident it was there. Potentially now deeper.

Until last year I’d always managed periods, used to get constipation for the first couple of days and then period pain would ease.

It’s not in your head at all, please don’t let doctors do that.

Is your gynaecologist prepared to treat at the same time at lap, or just a look see? It might be worth suggesting MRI before lap to make sure nothing deeper shows, they may or may not.

After a year of hell, I went private in December, best money ever spent. Could have gone NHS for op, but sold stuff instead. I didn’t go through GP to see the consultant, went direct. He could see any tests I’d had done through GP.

Thts so reassuring ! I also question my self because yes I’m in pain but I see some ladies who mentions there unable to walk and I think can it be then as my pain isn’t quite that bad! My gynae hasn’t mentioned anything yet apart from if I still bleed after taking double dose of my mini pill until she sees me in July then she will send me for lap. I rang her secretary to say in 6 weeks I’ve had 3 bleeds .. and gynae rang me to say she wants to do ultra sound before lap but not said if it’s just to take a look or removal? Thanks for reply

Be aware endo won’t show on ultrasound, so she maybe looking for other things to rule out. Is she experienced surgeon for endo?

Pain levels vary so much and is very personal, don’t worry too much what others experience. Endo can be there, but doesn’t cause much pain in some women.

Keep a diary of anything that crops up, pain, bleeds etc.

Hope it’s not too long before you get sorted

I haven’t even met this gynae it’s such a long story but I’m under 3 gynaes one for suspected endo, one for my ovarian cyst and the 3rd for some cell changes ... so this gynaecologist I haven’t even met. I was sent in December via a two week referral for one gynae (to rule oUt cervical cancer) and I tried explain to the consultant that I have adenomyosis and suspected endo that’s why I’m always bleeding & he said he wouldn’t do anything for me just thankful this lady is different, I think I might ring the secretary back Monday as I had an ultrasound in February when they found my cyst can’t she use that surely. ? And could I ask her secretary if she’s specialises in endo?

Wow, that’s a lot to keep track of. Do you know the gynaecologists name? Worth some research, but yes, I would ask the secretary. Maybe she also has the knowledge to bring everything under her guidance.

I did some research first, I’d initially just wanted to check on fibroids that showed on a renal scan, hadn’t considered endo at that point 😂. I had many years ago, but not since.

Can’t see why they couldn’t use the scan, save time, unless she wants to check if any changes.

I can’t remember her name although I know she’s a female and in Birmingham to my knowledge not many female gynaecologists? & no way said they found it when you wasn’t thinking about it ! Thankyou for all your advise I’m going to ring Monday firstly find out her name lol and ask the secretary then do some tea search too! You’ve helped me so much!

Let us know how you get on Monday.

I handed him notes I’d written for history, he asked a few questions, quick exam and said endo, fibroids too small, only way to check is op and if there would treat.

Did you have the op? And I will do

Had op on Feb, surly recent.

I’m sure you’ll find out all the info you need.

Hope your starting to feel better

Thank you. I have a bit of a longer road at present, on Zoladex for six months

Hope they start to work for you

Hiya - could you advise on the consultant you saw privately / the process? Thank you!

Hi

Initially I’d had an NHS referral, but it went to urogynaecology and to me wasn’t the right area. The admin in these departments decide which area they put the referral to.

I tried to get hold of the consultants secretary to maybe check. Thankfully no answer and did some research and came across the person I saw. He had his own website and tons of experience, including robotic surgery and ran the gynae department at one stage. Also specialises cancer. Unfortunately I can’t mention names here. I live on the Hampshire border. His secretary was great and booked the appointment. I had to wait a couple of weeks though. I didn’t need a GP referral, I did email a copy of the renal scan results. I have online access, you can set this up free of charge with your surgery. It was great to meet someone that was knowledgeable and confident in what they were saying. I wasn’t confident, which is why I wrote bullet notes of history. Much of which wouldn’t have been in GP notes anyway. I did print out the list of consultations I’d had at GP, wasn’t that interested in those.

Cost £200, and well worth it. I had hoped at op he was wrong, unfortunately life rarely works the way you hope 😂. It’s still the best decision I made to find out.

Let me know if you have other queries, just in case I’ve not thought of something.

That’s so good and fate made you find him!! How nice is it when you talk to a medic and they understand what your saying and not making you think your making it up!! I’m defo going to do bits of reasearch and you can’t put a number on your health can you! So glad it worked o it well for you! & really appreciate the all the advice and knowledge you’ve given me x x

It makes such a difference, trust your gut instincts.

I still have to convince GP surgery, I’m not convinced they’ve accepted it all, even with letters.

I’ve got an actual appointment Wednesday, going to take pics in as well. 🤣

Yes I shall and good luck for Wednesday!

Thank you. 😊

This GP is one when I saw her last year, suggested sepsis as I had a slightly raised temp. When she felt abdomen the pelvic area was tender, but gynae stuff wasn’t even dreamt about. 🤣

—just read other threads and saw you had sepsis mentioned, I’m assuming it was the favourite last year for possible diagnosis 😂

My blood test which was put as urgent took me three days to get the result. I could have been dead by then, but knew it wasn’t that anyway.

Hi I have stage 4 endo, my uterus, ovaries and bowel are all stuck together, I had an MRI to see how deep it's gone, when I have surgery to remove I will need a bowel specialist there too, your symptoms sound like some of mine, the pain when going to the toilet sometimes is horrendous and as u I am either loose or constipated! Oh the Joy's of being a woman 😲😔 I'm now on meds and the depo injection and that has helped with some of my symptoms, are u on any contraception or meds? Hope u get some answers sn and gd luck xx

Hiya thanks for replying! I’m glad you managed to get your diagnosis ! And yes the shooting pain while on the toilet is AWFUL to the point I dread going awhen it happens. Erm currently I’m on the mini pill can’t have combined because mom has blood clots on lungs but I take double dosage of it for two daily every day and still bleed. They want me to try the Mirena but I don’t want too... I know my body reacts badly to hormones and the risk with that is ovarian cysts, I’ve just had one removed in feb and dr thinks I hve another one on other cyst appear waiting for ultrasound scan xxx

LaurenG98
LaurenG98
in reply to Adeno2020

Hi,

I haven’t been diagnosed yet but suspected - I have the same pain and the pain in my abdomen is worst in the morning - I have seen a private GP and she told me in one session what it took 2 years for the NHS to tell me - ah what money does. Anyway she also suspects bowel endo and bladder endo. I have the mirena coil - it was so painful for the first day for me but it’s been a godsend for my pain. I was due to have my lap around now, but of course due to COVID-19 all non essential surgeries have been cancelled. Hopefully they find the right treatment for you!

Adeno2020
Adeno2020
in reply to LaurenG98

Hi!

Yes it’s amazing what money does and it’s sad! The risks of the mirena coil like cysts I already suffer from and have a family history my sister has had 3 removed and also had endo my mom had a hysterectomy young too so don’t really want to try the coil. I had implant like when I was 14 and bled constantly ! Hope it’s not too long then you have your lap done

LaurenG98
LaurenG98
in reply to Adeno2020

Ah thank you - I also had the implant but was bleeding almost every day for year so they put me on the pill as well to regulate my periods (this was not fun for my weight - and we’re talking for 4 years). Periods were the worst part 100%. If they can get you on a contraceptive that reduces bleeding that’s the best treatment - I’ve found anyway. I had 5 gastroscopies and a colonoscopy in 2 years through the nhs so don’t get me wrong they checked all the right areas, it just took so long. They put me on mirena suspecting endometriosis but weren’t going to refer me for diagnosis - I thought this was really weird and requested a different doctor refer me to gynae and she did. They thought I had Crohns until the colonoscopy came back fine. It’s been a rollercoaster and I really felt like I was losing my mind. It was painful to go to the loo and some nights I woke up with awful bowel cramp - the worst part with this was I knew it was coming 3 hours before it happened and there’s nothing you can do but try to sleep until it happens. It was one night I decided to google endometriosis and bowel problems that I came across a scientific study on it. I’m convinced that’s what I have. It’s funny it isn’t until you come across it that you realise you’ve had symptoms for a long time and didn’t even realise because we’re women and just assume whatever amount of pain comes with having a period is normal!

Adeno2020
Adeno2020
in reply to LaurenG98

Aw that’s strange but at least she referred you on, and it’s good to know they checked the right things. I don’t mind how long I have to wait because I can see the finish line but when you can’t see that diag lap then it’s really frustrating, even if my gynae gave me a date for end of next year I’d be happy but been told I will have one to then she wants to do a scan first even though I had one in feb🙈 tbf my gynae I’ve got now seems the best I’ve had so far even with wanting another scan lol but I had one who told me I got sepsis because I had a baby young (at 22) and my pain is part of being a woman thankfully my mom came and said I’m never to go back to her. Then in feb I was admitted to a&e suspected appendicitis but surgeons done ultrasound scan and I had a cyst they referred me to gynae but gynae wouldn’t touch me they said even though cyst was leaking into pelvis so basic surgeons had to do ovarian cyst ablation so when I asked if endo was found out of curiosity they said they have to go in a different way but found out it’s not that reason they just don’t know what they’re looking for I’m just thankful they sorted out my cyst. So even getting gynae by me to do basic things that a surgeon even requested for them do is a big job in its self! X

LaurenG98
LaurenG98
in reply to Adeno2020

Ah thats terrible - hopefully after COVID-19 they’ll get their butts in gear and get you diagnosed! I felt like I had to do a lot of suggesting with mine to lead them on the track. Fingers crossed for you! X

Adeno2020
Adeno2020
in reply to LaurenG98

Thankyou! And so glad you got the right care in the end! I’m such a laid back person and not one for complaining I think that’s why drs take that for granted abit lol x

I'm on the depo injection as I cant take the combined pill due to my weight and the mini pill only worked when I breast fed my children otherwise I just bleed on it, the hospital wanted me to have the mirena coil but I said no! And went for the depo. Cysts are awful and when the rupture its agany 😢! I hope u get ur ultrasound scan sn and it all turns out ok, gd luck and I'll be thinking of you xx

This is such a lovely message Thankyou! Means a lot! Yes there are agony! I remember the surgeons on the ward when I was admitted just looking at me thinking you can’t be in that much pain! But there mortifying! Thankyou again stay safe !x

I’ve been diagnosed with severe diffuse bowel endo amongst all the other stage 4 endo I have and am getting a bowel resection at my next surgery (hopefully later this year but all up in the air because of covid19). I’ve also been diagnosed with a 5cm rectal nodule

My symptoms are:

- severe internal and external pain with bowel movements

-rectal bleeding with every bowel movement

-severe rectal pain

-severe diarrhoea, sometimes up to 15 times a day, sometimes wakes me up at night

-stabbing pain when I sit down

-incomplete feeling

-feeling I need to have a bowel movement and just passing blood

(These symptoms are every day, multiples times a day)

Because my surgery has been cancelled because of covid 19 I’m down to eating one meal a day to try and manage these symptoms. As well as some meds like gastro stop.

There’s also a good article worth reading from a very good endo specialist - I tried to post it here but not working so google ‘ when ibs is really bowel endometriosis’ by dr sinervo

Adeno2020
Adeno2020
in reply to Ollie2512

Aww that’s so awful your going through that!! I’ve only ever had blood on stool like twice and that was last year and not since, although when I’m bleeding sometimes it does look like blood in stool... I’ll have a look at that article. Peoples symptoms are so different I understand but it’s good to just have an idea! Hope you start to feel better after your op and good luck

Hope you get it sorted soon. The not eating much is frustrating.

The bleeding must be awful, I haven’t experienced that yet.

I’ll check out the article, thank you for mentioning.

I stopped the laxido for a couple of days, bowels definitely not working properly.

Take care

zowzie47
zowzie47
in reply to Ollie2512

I was like this also, had hysterectomy 3 years ago improved after but he said my bowel was nearly completely stuck together he removed all the scar tissue from my bowel and all my other bits were so stuck it took 8 hours with a further 4 at least to do the rest but he just did what he had to to get all my bits out, was still in pain was offered colostomy which I refused and the keto diet is working for me which makes me think I had more than one thing going on

Hi have had very similar symptoms to what you described. I also have had sepsis due my then undiagnosed Endometrios. However when they operated on me to remove the infection i was just told i had stage 4 and frozen pelvis they had also managed to drain at cyst. So like you I don’t really know and sometimes worry about my bowl and bladder for that matter.

I hope they find where your problem area’s are and you get it all removed xx

Adeno2020
Adeno2020
in reply to JoBTW74

Aw how awful! My sepsis was from a uterus infection that was left and I think it has a lot to do with my adenomyosis ... Are cysts associated with endo because I see a lot of us have had them? And Thankyou hope they get to sort yours out! Xxx

JoBTW74
JoBTW74
in reply to Adeno2020

Hi I’m not sure really but does seam to be a recurring thing that comes out on this forum. I am try to treat my with the pill as the operation is high risk of ending up with a colostomy bag! Which I don’t think I would cope well with. I am holding out for the menopause when hopefully it will all calm down naturally.

Although I would definitely had the operation if the surgeon had been more optimistic about there not being complications xx

Good luck for yours x

Adeno2020
Adeno2020
in reply to JoBTW74

Yes I see what you mean! I’m considering if they mention it again the hysterectomy, at 23 I’ll be waiting a good while for natural menopause, and I’ve already been fortunate ennough to hve a baby girl so I’ll be ok with that decision although it’s frustrating it will cure my adeno but not endo .. so really is it worth it.

JoBTW74
JoBTW74
in reply to Adeno2020

I wouldn’t want to go for a hysterectomy at 23 as like you say doesn’t cure the endo. Try some other options first .. I have had some good results with taking a double dose progesterone only pill. Its not a constant cure but can give months of relief from a lot of the symptoms xx

Adeno2020
Adeno2020
in reply to JoBTW74

I’m currently doing double dose of mini pill but I suffer low blood pressure and having dizzy spells on it there not sure if it’s that or low iron still but with the Covid can’t be sure till blood test done

Sorry to hear what you’re going through, I think I have had endo attaches to my bowels since 2010 because of the severe pain I ho through when on bleed or I want to open my bowels, so in 2014 I was referred to the gynaecologist who asked me to go for MRI, and bmmm it was endo attached to my bowels and the only solution was to remove my uterus to get to the endo but I refused because I was hoping to get pregnant, years after can’t get pregnant still in severe pain like a labour pain, going to the loo to do number 2 is like nightmare, so I use laxatives or suppository to let it ease out without straining, last week I spoke to another doctor to prescribe me declofenac suppository which has helped me a bit more for the rectum pain, ask my any question if you want more clarity , good luck

Adeno2020
Adeno2020
in reply to Omoty

Hi aw that’s so awful you have those horrible symptoms. I have adenomyosis too and only way to get rid of that is hysterectomy and I’m at the point where I’m considering it I’m only 23!! But I’ve managed to have a beautiful daughter and I’m happy with that. Could it still be endo if it’s isn’t painful every time? Sometimes it just feels like pressure at the very bottom of back and others times them horrible shooting pains up my bum only way to describe, I’ve have blood in stool only twice but hard to tel when on period so could be more ... I don’t always go everyday and then sometimes it’s hard to go and sometimes not so much diarhoea that I can’t hold it in but loose sorry tmi. Could this be endo on bowel ?

Hi that’s exactly how I was for years and years for me .., since having a hysterectomy it has now gone that type of endo pain

Adeno2020
Adeno2020
in reply to Nia7

Hi!

I’m considering having hysterectomy but nervous as it will cure adeno but not endo ? My first step will be my lap I think and make the descion from there but trying to get them to do it sooner is ridiculous. I just wanted to make sure that these things wasn’t in my head and I wasn’t making them fit so thanks ladies !

Moon_maiden
Moon_maiden
in reply to Nia7

I want one now, I think. Did you have any bowel issues when you had it done?

hey, I had my lap done, I had endo around my bowel, bladder ,behind my womb as well as around tubes and ovaries.

my pain has always been soo bad that I'm crippled over from i was 15, now 29 and was only this year i got help, cause my gps weren't listening i paid privately 2c a gyne and had op on his, if u can afford to do that I honestly would!

I never had pain during sex, but I got pains and still do when trying to go to the toilet also, and they told me for yrs it was ibs (which it wasn't was endo).

your not being paranoid, see a diff gp or pay privately if you can for gyne. best thing I've ever done x

Adeno2020
Adeno2020
in reply to Lousie29

Sorry to hear that you suffered all that time! I was actually fortunate to see an amazing local doctor a few years ago who sent me for tests but fell pregnant and had to move Gp surgeries!! I’m really considering even having consultation with private hospital and go from there I think Birmingham have a endo specialist hospital ? X I was also told few months ago I’ve got ibs and I know for sure it isn’t xx

Lousie29
Lousie29
in reply to Adeno2020

I live in northern ireland and i paid to see a private gyne, honestly you know your body and if your not happy with advice yiur being given i would 100% go to the private gyne specialist.

that's great that you have that, we don't have that over here unfortunately. Do u mind me asking what the specialist clinic in Birmingham is called? x

Adeno2020
Adeno2020
in reply to Lousie29

Sorry just realised I replied but to the post not your comment sorry! It’s called the endometriosis clinic here’s the link theendometriosisclinic.com

Lousie29
Lousie29
in reply to Adeno2020

thank you:) x

I think I will do that too once Covid is over !! And yeah sure it’s actually called the endometriosis clinic I’ll try send the link

theendometriosisclinic.com

Hello Adeno.

I am nearly 6 weeks on from a Total abdominal hysterectomy which was carried out due to the following

1) painful periods, intermittent bleeding

2) ultrasound showed cysts only ovaries, fibroids

3) CT scan to see if there were any other areas showing as suspicious other than my womb

3) a hysteroscopy which showed a poly

Most importantly this was all fast tracked due to my original visit, and the first thing they did was a Ca125 blood test which was over 200 when it should be 30

This test could be high because of cancer, fibroids or endometriosis

The primary concern was cancer with having cysts

Once in theatre, my consultant found level 4 severe endometriosis everywhere! My bladder, bowel, Fallopian tubes , ovaries , appendix, vagina wall! She managed to remove all of the endo adhesions off the bladder and bowel with no damage . It was easier to remove the appendix and I was already prepared for a full hysterectomy anyway including my ovaries , so all

the endo in these areas is gone

My point is, my endo was serious, I didn’t have any of the symptoms you have said , apart from serious debilitating period cramping and blood clotting . I never had problems with my bowel, I never had painful sex . Yet, there it was! A silent assassin ! Endo can’t really ever be truly seen until you are operated on . Your symptoms do sound serious , I am surprised they haven’t done a blood test to see if that is raised as a starter (by the way, I don’t have cancer from my biopsies )

My gynaecologist did say to was a possibility of it being endometriosis (only have all my tests) , but I am sure we were all surprised by the findings . My GP who originally referred me even said, if it wasn’t for the blessing of cysts being found on the ultrasound at Christmas and the blood test , I think I would be still under investigation because the traditional abundance of such serious endometriosis especially on my bowel didn’t show as symptom

Yet, you have a lot of symptoms !

An ultrasound would show if anything else is going on though ? Ask about the blood test .

This might not be Endometriosis

Sorry if I missed this, but have you had one?

I think you need to push back or change doctor ! I can not fault the thoroughness of how my case was handled

Googling is not the best, when you read something it heightens any symptoms you have .

Adeno2020
Adeno2020
in reply to 45Bumbleb

Thankyou to reapsonding and how awful sorry you had to go through that but glad you managed to get it sorted. I never ever even knew what endo was or adeno until my gl said the symptoms I was having indictaed it at that time it was painful cycles, I’d bleed 3 weeks out of a month and clots .. that was 3-4 years ago and only since last year I’ve started with the bowel problems. Previously I used to get thrush a lot and lots of water infections (some kidney) but don’t hve troubles with bladder currently. I had ovarian cyst removed feb and they think I have another one on other ovary now waiting for scan maybe this is the scan my gynae is waiting for before lap? I also got tested for cancer as had a lesion on the cervix which shows abnormalities but biopsy came back clear thankfully but still no one has done bloods? Only bloods I’ve had took was feb when I was admitted to a&e they thought I had appendicitis but was my cyst leaking into pelvis. I’d imagine they’d need to test for a specific thing on bloods? Xx

Oh my goodness! You have been through the mill! I consider myself really lucky to be honest , not only did I get fast tracked but I think left much longer the Endometriosis would have really gotten hold of my organs! I never really knew much about Endo but I am horrified to learn it can come back but taking steps to avoid that with my consultant. Yes, it sounds like you are waiting for ultrasounds and a CT scan . I would ask about the blood test , that was my deal breaker ! That’s when things really got moving In the process

Wishing you lots of luck ! This forum is brilliant. I posted my first question on Thursday as I’m in a surgical induced menopause now (I am 45 ) and keen to hear about natural remedies for menopause symptoms. HRT is a no go to start with the endometriosis needs chance to regress

Had some nice replies

Wishing you the best of luck! I hope they get in there and get you sorted so you feel like a new woman (the consultant used those words , when she came to see me post op, she said ‘with all that’s been removed, the severity of the endometriosis - you are definitely going to feel like a new woman ! It really stayed with me, you forget the years of suffering you tolerate when you get used it pain!) .....and on the road to recovery ! Xx

Adeno2020
Adeno2020
in reply to 45Bumbleb

Yes I only posted this post yesterday & already had so many lovely and helpful replies! This platform is so good because although I have Support from my partner I don’t feel like people understand how painful and mentally frustrating it is unless you deal with it yourself ! I’m definitely going to ask about this blood test! And ring my gynae secretary on Monday to confirm what tests she waiting to do, I hope you find some natural remedies to help you! Al this medication we have to take it’s okay being fed it b it how annoying is it to rely on something artificially made. ? Take care x

I was told for years they couldn't find anything I had blood test, internals, scan, ops including ablation, I had a lot of pain doctor told me it was all in my head and nearly died of a gangrenous appendix, didn't bother with doctor after that each time I was nearly passing out with pain I went to Aand E the pain I had I can only discribe as a red hot poker being shoved up my rear in the end they agreed I could have a hysterectomy, when they did the hysterectomy instead of taking 3 to 4 hours it took 8 and he said I had such severe endometriosis he could have done another 4 hours of removing scar tissue but didn't think my body could take it, he said my bowel was almost completely stuck together. For a couple of months I was OK then I was in pain (not as much) again when I saw the specialist he felt I wasn't in enough pain to do more surgery but did offer a colostomy or to take paracetamol(bearing in mind I am a nice person really when he said I wasn't in enough pain I told him to shove a red hot poker up his backside and see if paracetamol worked for him) I am now doing keto diet and for some reason can only presume something else was also happening I've got no pain. From my first op ( D and C and lapioscopy) to them finding endometriosis was 24 years

Adeno2020
Adeno2020
in reply to zowzie47

Omg that’s so awful and so glad you managed to have a good suregeon who explained what he don’t in end sorry you’ve had on going symptoms! Drs have literally told me that many time’s it’s in my head I begin to believe them! I think I’m going to have to start being more stubborn with them!! Just haven’t got it in me lol OMG that took so long 24 years!

Hey! Yes I had that for years and was told by my doctors that the pain was all in my head and that there was nothing wrong with me. When I finally got a doctor who would listen and he did a lap he said the endo has wrapped around my bowels and was squeezing it off so every time I had a bowel movement it felt like I was in labor or had razor blades up my bum. I ended up having 6 laps to have endo removed along with ovarian systs removed before my doctor said he wouldn’t do any more and that I needed a total hysterectomy. After 2 babies I finally did it 10 years ago and it was the best decision I’ve made

Omg that sound so horrific! Sorry you went through that but glad to hear your in a better position now ! X

Hey,

I get that pain when going to the loo and during my period and my lap in Oct 18 found my uterus was attached to my bowel.

The pain is horrendous sometimes. It feels like period pains but that I need to go to the loo at the same time. Took me AGES to get anyone to listen to me!

Thanks for getting back to me I’m so happy to know so many other girls have same symptoms and gives me howl I might actually get A diagnosis I just want the answer to it and for people to stop making it sound like it’s made up! I don’t get it every time just I’d say 6/10 I go? X

I have it on my bowel. They saw it on my laparoscopy, but couldn’t remove it due to it’s position. I’m having another operation to remove it, but two specialist have to be involved. My symptoms are extremely painful shooting pain in my bum and up my back and in between my ribs, however, I go to the toilet at least 3 times a day and I am rarely constipated. I do bleed from my bottom as well. I hope you get everything sorted soon.

Hi I’ve only over last few days have also been having these pains in my ribs, and it’s associates with my back and abdominal pain I get... and I get the shooting pains and sometimes I can go like 2+ times a day and sometimes I don’t go for a few days .... I’m glad they found yours for you and your getting it sorted! X

Hi,

Along with others areas, I had stage 4 endo ablated from my sigmoid colon few months ago. Bowel adhesions adhered bowel to my pelvic wall and an ovary also.

I never thought I had endo, just bad periods 😣 and was fobbed off by GPs with "just your genetics" etc.

Never suffered from constipation or loose stools at all...BUT I had almost daily rectal shooting pain, like...sorry all for the tmi...a knife stuck up my bum. It would stop me in my tracks, and leave you breathless. I was told it was proctalgia, nerve pain in anus and rectum and just a thing people get. It was worst during ovulation or period times and going to loo at those times was difficult pain wise.

I also had incredible pain during sex like a stabbing pain over to that side of my lower pelvis.

Now I know this was very obviously the bowel endo shouting at me! My bowel would have been unable to flex due to adhesions, a kink had formed in the bowel too and which remains for me too due to scar tissue causing it to structure but I can live with it and good diet etc.

Reality of all this...the whole area of missed or misdiagnosis yet many docs don't want to open us up for no reason. I really hope you get some easing of symptoms.

My advice and something I'm grateful for;

if they are quite sure its endo and on bowel make sure you are with a gynae surgeon who specialises in endo, as you don't want anyone operating and involving bowel without experience or assistance/cross functional advice of a colorectal surgeon.

Stay well xx

Adeno2020
Adeno2020
in reply to edonn

seconds ago

Thankyou for responding it’s so reassuring to know ladies experience similar things! You saying that I also sometimes get the same pains up my bum when doing normal activity like sitting or walking (very occasionally though) mainly when opening bowel but yes that’s how I’d be scribe it like a knife stabbing up it! I will demand I see a gynae who specialises in it. My gynae has told me she don’t need to open me up to say I have it as strong symptoms she’s certain is it so hopefully I can have it in paper soon and some symptom reliefs x You too xx

Hi, I recently had hysterectomy and was prepped for bowel surgery at the same time and they said I had it on my bowel, diagnosed from a precious lap. After my op, they said it wasn't as bad as they thought and I didnt need bowel surgery. They said the amount of endo there wont cause me pain. I have however had pain still. Especially when I need the toilet. Like you I struggle to go but then cant get off toilet a couple of days later. Sounds like to me you have it, comparing to my own experience. Good luck x

Thankyou for responding sorry to hear that t would of made sense to of just killed the two birds with one stone wouldn’t it! But I guess it ain’t them who have to live with the pain as if we know then medics should know endo just grows ... hope you get it sorted soon and thanks for the reasurance I’m ringing my gynae sec tomorrow to tell her!

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