Recto vaginal/ bowel Endo - Help

[Char411]

Hi all, this is my fault first post so bear with me.

I’m 38 and have had heavy irregular painful periods since I was 13, being on the pill regulated, lightened them and made them manageable. Over the past year things have spiralled. My main symptoms being left sided pelvic pain, chronic lower backache(which I have suffered on and off since being 17) left leg pain, nerve pain, nausea and bowel problems alternating between diarrhoea, constipation, sometimes not having the urge to go at all and sometimes going 3 times a day.. I honestly hate the constipation the most The past several months I also pass menstrual blood through my back passage whilst opening my bowels. Only happens on my period and is definitely menstrual blood and I also get a stabbing pain in my rectum which is unbearable. I have been seen by a gastroenterologist who said my symptoms sound like recto vaginal endo. I had an endoscopy, a colonoscopy, a pelvic ultrasound, an abdominal ultrasound and full works blood test. All of which were clear. I saw a general gynecologist yesterday who said it sounds like recto vaginal/bowel endo and therefore he isn’t skilled enough to deal with it so he has referred me for an MRI and to a specialist endo centre. I am in pain most days with it seeming to get worse just as my period is finishing. Does anybody else have these symptoms as I feel like I’m going crazy sometimes and it seems to get slightly worse each month. I honestly feel like an old woman. Does anyone have any ideas what I can expect for the future as I’m feeling pretty down about it at the minute and although my partner and friends try to understand and are supportive, they don’t really and I feel so isolated sometimes. Thank you in advance ladies x

[Hidden]

I had all the symptoms you describe with bells on and was diagnosed with severe endo including a large RV nodule. It was also on my bladder and ureter and my ovaries were stuck to the back of my uterus, which was stuck to my bowel, which was all then stuck together to the pelvic sidewall on the right. I had a hydrosalpinx in my right tube and I also had adenomyosis. The constant anxiety, the checking for bleeding every time I went to the loo, the pain, all of it did make me feel like I was losing the plot, especially as my GP insisted I had IBS and that my periods were normal.

I eventually had a hysterectomy and oophorectomy and excision at a bsge centre in march and I am doing really well, so there is light at the end of the tunnel even though it doesn't always feel like it. x.

[Char411 in reply to Hidden]

Thank you so much for replying, it’s nice to know that I’m not alone. I’m so glad things have improved for you. Oh I know that anxiety it’s part of my daily life now, checking for spotting or any more changes and the anxiety of never knowing what’s going to happen with my bowels. Hopefully after the MRI I’ll get some definitive answers and be able to move forward and not feel like I’m losing my mind and my life xx

[Hidden]

Hi char411, you really are not alone. I've had these symptoms too. The nausea is worse than ever for me just now, and I think that some of that may be condition related, but also partly anxiety as i feel this whole thing is driving me crazy too, it's taken over my life. I've been under colorectal surgeons for over a year due to my symptoms being primarily GI related, and it has taken this long, a cancer scare, multiple endoscopic procedures and failed or inconclusive biopsies, uss, ct, mri, to only now get a referall to a specialist endometriosis centre, as the last biopsy (fifth attempt) finally showed evidence of endometriosis in my bowel. This came as more of a surprise to the doctors than to me, as I suspected this all along, but was dismissed as very unlikely by them. Unfortunately there is a wait of at least 8 weeks to be seen at my nearest bsge centre, and I've got to the point where I'm not prepared to wait anymore, I've waited long enough with no treatment, just test after test, in the meantime, like you, I'm feeling worse with every month that passes by, so I am paying to see a private specialist this week for some advice (one who works at an endo centre), so am hoping for an idea of what's next. It's good that you have been referred to a specialist centre, I hope your wait is not too long. So sorry mine is not a more positive story like joreilly's - I'm hoping for that light at the end of the tunnel very soon! But what I can say is you are not crazy and you are not alone, beleive me I know the struggle is real, and lots of other ladies on here will relate too. Good luck Xx

[Char411 in reply to Hidden]

I’m sorry you’ve had such a terrible time. It’s astonishing it takes this long to get anywhere, we should be listened to more. We know our own bodies. I think the anxiety partly comes from the not knowing and being scared of the worst case scenario. I really hope you get some answers this week and a plan for moving forward. Thank goodness us ladies have each other. Please keep me updated Hidden xx

[Abi_97]

Hi you are not alone at the start I was tested for everything even asked if I was bulimic( I'm young and lost over 2 stones in weight the doctors was like ahh must be in her head and bringing it on herself) finally I was daignosed with anxiety and ibs but then I went to a different doctor (female one) who straight away said thats endo 😮 I have bleeding through my back passage and pain whilst I'm on my period I was always told its normal (recently I'm doing it when I'm not on but I've had the coil in and its made me bleed constantly) 🤦🏼‍♀️ I have endo in the pouch of Douglas I may have it on my bowel but nobody explained my letter to me after my lap all i understand from it is theres nodules in the pouch of douglas 😮 I also have the nausea bloating gas and constipation and pain during sex 🤔 The nausea is the worst for me because either one week I'm able to eat anything the next week I cant eat anything without feeling nauseous or I eat chocolate as normal and get painful gas 😭 I recently fell ill with a cold it made me constantly bloat and have nausea then I tried peppermint oil tablets and senocalm they are working miracles for me I actually read people with ibs actually felt hardly any nausea after taking peppermint oil tablets for 2 weeks I'm hoping it will work for me 🙏🏼 My period pains actually got worse after being on the pill 😭 I think you have to find what hormone treatment works for you currently the coil is working wonders for my period pain (not everyday but you cant win them all) So what you can expect is trying out different hormone techniques they may even suggested a hysterectomy also for the nausea like me you can try the endo diet cutting out gluten cutting out non bovine dairy and eating lots of veggies 😊 Hope that helps you are not alone or crazy 😮

[Char411 in reply to Abi_97]

Thank you for your response. I’m currently have a nausea day and kicking myself for running out of colpermin and peppermints. I’m sorry you’re having a rough time too. It’s so frustrating isn’t it. I’ve had a good week bowel wise but today I’m constipated again which I detest, makes me feel awful. Are you under a specialist and did they excise any of your Endo during your lap? I have tried the Endo diet and did feel better cutting out gluten and dairy, I initially cut out gluten as my mum is a celiac and we thought that could be my problem at the start but I’ve tested negative. I too suffer IBS symptoms and anxiety, my GI doctor said that’s due to the Endo. What’s the next steps for you? I’m waiting for my MRI and follow up at Endo specialist centre xxx

[Abi_97 in reply to Char411]

Oh no 😮 Is theres someone that can get you some peppermints? Have you tried wearing travel sickness bands? I dont know if they work but they are a comfort for me because I know part of my nausea is endo but part is anxiety 😭 What pill are you on? Because I just read from somebody on here progestogen pill only and coil work the most effective 🤔 I had a lap they told me before hand if they found endo they would remove but I woke up to find they had found extensive nodules but didnt remove it on the 6th this month I went for my mri after I rang the hospital to book an appointment to see a specialist but they hadnt released any dates so I'm waiting for their call 🤔 I have a feeling I will have to talk to my doctor next thursday when I go for a coil check up because it will have been nearly 2 weeks 😮 So far best remedies for me have been the diet, peppermint, hot water bottle and the coil its made my periods so much easier 😊 Xxx

[Char411]

My son got me some and it’s eased a little bit. I’m on Yasmin, it’s the only one I’ve been able to take as others give me migraines awfully. I find that peppermint, my heatpad and tramacet make things manageable. My periods aren’t too heavy thanks to the pill but they do last 7 to 11 days and start with old brown blood. I find that if I sip flat coke it can ease nausea too, a nurse gave me that tip and it’s always stopped bouts of vomiting. I might look into the travel sickness bands, thank you and oddly enough I do suffer travel sickness haha but that’s a good idea using them when not travelling. My anxiety has only developed over the past 2 years I used to be very relaxed and chilled out. It’s sad looking back at the person I used to be to what I’ve become now, guess I shouldn’t moan there’s people in a lot worse situations. How did you find the MRI, I’m not sure what to expect? Xxx

[Abi_97 in reply to Char411]

Thanks for the coke tip luckily I dont ever get vomiting a few women seem to but I have a phobia of sick I think it stops me from being sick 😂 I have travel sickness as well I normally take the tablets though someone once though suggested I should take them for nausea but dont think thats healthy 😮 I used to be tough but I'm only 20 and scared of the world I dont know what I'm going to be like when I leave uni 😭 We are allowed to moan a bit though 😉 The MRI was boring and loud 😂 They say you are only in for 25 minutes but its more like 40minutes 😂Also I hope you are not costraphobic (Sorry rubbish spelling) Xxx

[Char411 in reply to Abi_97]

You’re braver than you think.. look at the battle your fighting. I am slightly claustrophobic 😣😣 but my gynecologist said I could go in feet first so hopefully that will happen, not really looking forward to it but hopefully it’s another step in the right direction. I am glad you are getting a diagnosis early so many women are dismissed especially younger ones. I have seen ladies on here talk about anti sickness tablets they get from their GP, I might look into that. My mum used to have them so might be worth asking about xx

[Abi_97 in reply to Char411]

Thank you you sweetie 😊 Ohhh thats good you could always close you eyes if you hate it and just focus on the music they will play 😮 At least you should only need one op if they are doing an MRI first 😮 Yeah I'm glad I am though if I had money for everytime a doctor told me it was in my head I would be rich 😂 Ohhh I might look into that as well I know when I went for my first lap I told them about my phobia and they dosed me with a load of anti sickness tablets which didnt stop the nausea but at least I wasnt sick 😂Xxx