Undiagnosed rectovaginal endometriosis? Please help!

[Gemc93x]

Hi everyone,

Since the age of 16 I’ve had what I thought were two separate issues. Pain during intercourse/when trying to use a tampon and pain during urination, and then anal fissures. I’ve been dealing with all three for 8 years now. Ive had swabs and scans etc and no vaginal infection. I’ve recently got a referral to gynae for the vaginal/urethral issues as my GP thinks it could be endo. My apt is the end of June. I’m currently seeing a colorectal surgeon for my anal fissures and have been for the past year, having previously seen a surgeon in 2013 and getting no where. My surgeon has no doubt that I’ve had anal fissures in the past as he can see where they have healed. But there has been a few occasions where he says I’m still healed and has discharged me, even though I’m still having pain. He just keeps saying he can’t help me if he can’t see anything to fix. The problem is, I’m in excruciating pain every day when having a BM. This pain occurs when I feel the need to go, and whilst I’m going. The pain can then last from 10 minutes to 24 hours or more. I was due to have surgery for an active fissure in April, however when I woke from the anaesthetic he told me that I had healed and that I didn’t have the ‘tightness’ associated with fissures. I saw him again today, crying as I was in so much pain. He examined me and said he can’t see anything, just healed fissures. I was so frustrated, how can I be in so much pain with no fissure anymore? My partner said when I got home, is it possible to have Endo in the rectum? I have done some research and apparently it is! Obviously I haven’t even seen a gynae consultant yet so I can’t be sure if I even have endo anywhere, but does this sound like it could be rectovaginal endo? Anyone out there with similar symptoms? I’ve never noticed if it’s worse with my periods but then I’ve never written it down. But I was on my period last week and I will say that my anal symptoms were a lot worse than previous weeks.

Is it possible for rectovaginal endo to cause anal fissures at times, as well as be responsible for fissure like pain in the absence of any actual fissures? Could it be that endo pain cause me to tense up etc and mimic anal pain, which in turn leads to actual fissures because I’m tensing? My surgeon hasn’t got a clue what’s causing my pain and is getting a colleague to examine me. I might suggest this next time I’m there.

I do have period cramps which sometimes require a hot water bottle but I never thought they were more painful than anyone else experiences.

Thanks I’m advance!

[Riverchick]

Hi gem,

What is pointing to Endo in ur mind? I would probably try dealing with the constipation firstly(I assume ur suffering as u have fissures) and see if that helps ur other symptoms at all.

[Gemc93x in reply to Riverchick]

Hi thanks for the reply, just the fact my GP thinks I have it and I’ve got all the symptoms of rectovaginal endo/bowel endo, from doing some research. And since my colorectal surgeon is at a loss as to what’s causing my anal pain if I haven’t got any fissures currently. I ensure I’m not constipated by drinking 3 litres of water a day and plenty fruit and veg so that’s not an issue, but still getting fissure like pain but no fissure can currently be seen.

[Catness]

Hi Gem,

I have endo in the bowel and whilst I don’t have fissures I do have what I described to my consultant as ‘shooty bum pain’ which feels like a red hot poker going straight up the bum! It’s a debilitating pain that takes my breath away. He knew what I was on about straight away and apparently it’s a very common symptom of endo in the bowel/ rectum. If you do suspect this could be the culprit then I would ask for a referral to a specialist endo centre (search here for one in your area bsge.org.uk/centre/) or consider paying to see a private endo specialist who deals with more complex endo cases (search for the private hospitals in your area and then look on their websites at the consultants and find one with good experience in endo). Perhaps even paying for the initial consultation to discuss your symptoms may be a huge help as you will get a good idea as to whether it could be endo or not and how best to proceed xxx

[Gemc93x in reply to Catness]

Hi thanks so much xx

[tiredBFmum in reply to Catness]

@catness - oh the joy of 'shooty bum pain' - had this at the weekend and had to drive for 2 hours to visit someone in hospital.

[Starry]

Hey, big, big Hugs. That sounds very difficult to deal with. I had a 3.5cm recto vaginal endo nodule. I used to periodically faint on the loo from it and I had dyspareunia forever but not all that many 'classic' endo symptoms, fatigue being my main one so it does seem a possibility worth exploring.

Other possibilities may be to explore... Could healed fissures have cause nerve pain somehow perhaps due to past inflammatory responses ? Or could you have developed neuropathic pain from the pain transmission system channels getting overloaded (see retrain pain.org for a better explanation) I had both these types of pain after my surgery.

Just a few thoughts. Thinking of you xxx

[Gemc93x in reply to Starry]

Hi Starry thank you, it is very hard to deal with. Yeah I’ve had dyspareunia forever too and I also suffer from fatigue, but never thought it was due to a condition just thought I’m always really tired for some reason! Yeah it’s possible that it is nerve pain after having fissures, it’s so hard to know what’s going on! Xx

[Starry in reply to Gemc93x]

Hugs xx. Yes I wrote myself off as just a low energy person for decades.

Bsge centre is definitely the best place to diagnose likely deep recto vaginal endo. Perhaps worth a private initial consult with a view to seeing if they'd take you onto the NHS list?

bsge.org.uk/centre/

I found this description of rv endo type quite definitive for my symptoms, it was when the penny dropped.

endopaedia.info/subtype14.html

[Gemc93x in reply to Starry]

Thank you! I’m going to look into how much it would cost for an initial consultation then see if I could go onto the NHS list. Thanks for linking that description, that def sounds like my symptoms xx

[Starry in reply to Gemc93x]

Mine was about £170ish that was 2 years ago and it varies by surgeon

[tiredBFmum in reply to Starry]

Starry Hi Starry - how was the nodule diagnosed please? Is that only viewable during a lap or can they do that through rectal finger examination or vaginal exam or anything please?

[Starry in reply to tiredBFmum]

My gp did a manual vaginal exam and felt the lump as it was quite large. I then had the cancer blood test which was OK and was referred to a have an ultrasound and see a gynaecologist with probable severe deep rv endo. First gynae was useless and misdiagnosed me then I found my local bsge surgeon and saw him privately. He ordered a mri and diagnostic lap. Mine only showed partially on an mri and was a decent size, there is not yet a definitive scan for it to be viewable to diagnose unfortunately, which is why diagnostic lap by a properly trained endo gynae is the gold standard. After the lap which confirmed endo on the bowel attaching it to vaginal as well as bladder, ligaments pelvis and 1ovary, I also had a sigmoidoscopy with a camera with the bsge colorectal surgeon to rule out endo having infiltatrated inside the bowel wall.

[Strawbery1985an]

Hi. Yes Ive had the same problems. I knew I had Endo and after over 10 years got a specialist who does removal of Endo by laparoscopic excision surgery. Finally got it done 6 weeks ago. Still have lots of pain but I’m told it can take a while to heal. But he did find Endo! Just like I kept telling everyone all along!

[Gemc93x in reply to Strawbery1985an]

Hi thanks for the reply! Glad you finally got to have your surgery after all that time that’s what I keep reading, that it can take ages to actually get a diagnosis, so I’m not expecting to get anywhere right away when I mention the possibility of endo. If you don’t mind me asking did you have the anal problems as well as the vaginal problems? X

[Sfarre]

I'm sorry to hear about what you have been going through. I did have symptoms a bit like this and they found some endometriosis in my bowel and pouch of Douglas on a laparoscopy two weeks ago. I get severe stabbing pains in my bum, bleeding in my stools and also constipation before and during my period with cramping pain. Sorry definitely tmi but telling you this in case it helps!

[RhiannonT]

Hi. I've had the exact same issues as you for years (bowel problems- blood in stools, severe pain with BMS, rectal pain, very very painful periods, hot and cold flushes, back pain, joint pain, chronic fatigue, pelvic pain, cramps etc etc), all the classic endo symptoms. I was also diagnosed with an anal fissure in December. Like yourself I've got a very good diet of fruit and vegetables and drink lots so I don't get constipation. Anyway, I was fobbed off for years with 'IBS', finally went back to GP in February as pain getting horrendous. I mentioned all this to her and she immediately mentioned endometriosis. I've got an appointment with a gynecologist on the 20th of May. But looking online and reading all the great posts on this forum I think it's very likely I have Endometriosis with bowel involvement somehow. My GP is fairly certain too. Please fight for your corner, and make sure you emphasize to the gynaecologist how difficult things are. Don't let them fob you off, only YOU know what pain you're going through and you know when something is not right with your body. Xx

[Gemc93x in reply to RhiannonT]

Hi thanks for your reply, this sounds exactly like me, the more I read on here the more sure I am this is what I have. Yeah your right about not being fobbed off! Need to go with a strong mind xx

[RhiannonT in reply to Gemc93x]

Definitely! Spoke to my GP again last night and again she mentioned endo. Good luck with everything. 😊 Xx

[Gemc93x in reply to RhiannonT]

You too 😊 fingers crossed we both get a diagnosis! xx

[Vespa99]

Hi Gem,

I’m not sure you’ll even see this as your post is 8 months old, but I was wondering how you are and what you found out - hoping you got a diagnosis and pain relief?

I’ve had similar sounding anal symptoms to you for the last 5 years, minus the fissure diagnosis (I was examined and they found nothing), though it did come on after a gastro and a small external haemorrhoid, though same colo-rectal surgeon said definitely not the cause of my pain years later...

One year in I was diagnosed loosely with pudendal neuralgia, I say loosely because I never had the diagnostic nerve block - was too afraid of aggravating it. Things settled a bit slowly over the next two years with osteo, acupuncture, herbs and supplements, diet etc, but anal pain always there if stool a bit dry or a bit loose and even if normal. I’m definitely not constipated as go a minimum of twice a day, sometimes more which doesn’t help, but it’s virtually always painful and on a bad day pain never ceases until I wake up the next day, but it soon start all over again! On a good day it settles and very occasionally I can feel ‘normal’ down there. It ALWAYS is worse the week before and during the first few days of my horrible periods, and I have finally realised around ovulation too.

Things got worse again 5 months ago, at the same time as my periods got terrible and ibs symptoms increased. Specialist now has diagnosed endometriosis ‘clinically’ and is sure after examination it’s in the pouch of Douglas. I’m having surgery in next few months to diagnose and excise, but am suffering so much right now and none of the old ‘nerve pain’ things I do are helping - which is weird. I’ve tried lots of medications, but nothing touches it. I use CBD oil too which helps everything else, but never the anal pain.

Sorry for the long life story, I’m pretty sure I’m dealing with endo down there somewhere and now, 5 years later, pelvic floor muscle tightness and nerve issues. Just wondering how you’re going now?

My fingers are crossed for you!