Rectal pain/bowel endometriosis

[Trinity613]

Hello,

I have been suffering excruciating pain before a bowel mouvement in the rectum area, every time I have my period. I am 38 and never experienced this before. It’s been going on for 7 months now and it gets worse each month. It’s worse than giving birth, it feels like I am being stabbed and electrocuted at the same time, this morning I almost fainted from the pain. My dr said he will refer me to a gastroenterologist. Do you think I could have bowel endometriosis even though I don’t have heavy periods and regular period pain? Is a gastroenterologist able to help?

[Moon_maiden]

It's a good idea to rule out anything else. I went through scans and gastro last year, but nothing showed. Have you been diagnosed with Endo? The fact it coincides with a period it could be.

For years I did have bad period pain and it would effect bowel movement. Endo was diagnosed on the pouch of douglas and the bowel.

[Trinity613 in reply to Moon_maiden]

Thank you for your reply. Can I ask how you were diagnosed with endometriosis ? I am almost sure it is what I have since this pain only happens when I have my period. Can a gastroenterologist recognise bowel endo? Also is it possible to have endometriosis only in the rectum area? Or could it be that I have it in my uterus but it is only painful in my rectum? I am really confused and need to find a solution asap, I am petrified of the next bout of pain, I might faint and my children who are already traumatised by my screams, will be very scared …

[Moon_maiden in reply to Trinity613]

I never went to a GP about period pain after being told, late teens, that I should have a baby and it would go. I’m 53. Back in 2019 I had constant wanting to go to loo and pain in abdomen and pelvis kept increasing. Eventually after I don’t know how many appointments my GP referred for a bladder scan, that showed nothing apart from fibroids and enlarged uterus. I still had a fight for referral and insisted. They tend not to refuse at that point. This ended up at urogynaecology and that didn’t seem right. I decided to see a Gynae privately, this gave me a choice of who. I saw a very experienced Gynae who was really nice and diagnosed Endo, I only wanted to discuss the fibroids as I thought they were the issue. At lap, could have gone NHS or private, sold stuff to go private and he confirmed Endo but could only get to certain areas because of enlarged uterus to treat. Fibroids became multiple not the three that showed on scan. He saw Endo on the bowel which still has to be dealt with.Unlikely gastro would recognise Endo but not out of the realms of possibility. It’s worth ruling out but not effecting other avenues either. This is why it can take so long for diagnosis.

The only sure fire way to diagnose Endo is with op and Gynae who knows what to look for as it can be different colours as well.

As I’d managed for forty odd years with coping something tipped it over the edge to become a real issue, so I’d say yes it could be causing an irritation somewhere. We know, or at least pretty sure, a little can cause a lot of pain and a lot not much pain. I’ve seen info that if it’s near the bowel it can cause problems. It’s a very unpredictable disease.

Don’t let them allow your age to come into play and that’s why the are not considering Endo, I’m proof it can be diagnosed later.

What painkillers do you take?

[Trinity613 in reply to Moon_maiden]

I take ibuprofen and phloroglucinol. Because I have very irregular period I never know when it’s going to come so by the time I take painkillers I m already in agony. Fortunately once I have gone to the toilet the pain is almost gone. I never knew endo could be seen by an MRI, I always thought it was only through a laparoscopy that it could be detected. I had a transvaginal scan where nothing came up except 1 burst corpus luteum cyst and another cyst they said could be a dermoid one. Could it be that it was a endometria and the sonographer took it for a dermoid cyst? I am desperate to know asap because not only the pain is unbearable but I would like to have 1 last baby before my fertile days are gone…

[Moon_maiden in reply to Trinity613]

Hadn’t heard of phloroglucinol before, are you based in the UK or US? Only asking from the perspective of asking GP, I can’t find a UK brand name. The recommendation to me in the past is to start the painkillers regularly a few days in advance, they get time to build up in the hope of preventing more severe pain.

The gold standard is still an op but sometimes seen on scan. Can be seen on ultrasound if the person looking at results has had specific training, which unfortunately is rare. It’s very possible the scan was misinterpreted, even MRI can be misinterpreted. It’s the main reason they should only be used alongside an op not instead of. At the moment they are using them as excuses not to do the op they should be. There’s now a train of thought going around that treatment should be non op based due to potential build up of scar adhesions.

Once I’ve had next op we’ll know if last consultant was right or was covering up his mistake.

You’ve every right to want to explore every opportunity to have a baby. There are very good Endo/fertility experts around.

[Rose153]

Hi there, so sorry you are suffering, I can relate. I have endometriosis and it was the extreme bowel pain, mucus and blood from bottom every month that triggered me to go to the GP. This was in March last year. She was very good and ran lots of blood and stool tests, all of which were clear. As I had very heavy periods and pain too, she sent me for an ultrasound. The wait was ages so I decided to pay privately and saw an excellent radiographer who saw a cyst and suspected adenomyosis, he recommended I see a gyne and had MRI, he at that point, suspected endometriosis. This is uncommon as you cannot usually see endo on ultrasounds or even MRIs. I saw an endo specialist and had an MRI, which showed extensive endo, in pouch of douglas, ovary, c section scar and rectum. That would explain the cyclic pain and other issues. I had a lap in July and the suspicion was confirmed. My womb was stuck to my bowel, the pouch of douglas was obliterated, the ovary had a massive cyst. It was a mess. My surgeon excised the endo, freed up the womb and reconstructed the ovary. I had the mirena put in at the same time to stop the bleeding and help with adenomyosis. The healing has been long and hard. I still have pain and I still get mucus and blood. The electric shock type pain has gone however. I have recently had a flexi sigmoidoscopy to check the rectum and lower bowel, it was clear, so the issues I have still are from endo. I also have a slight rectocele and pelvic floor dysfunction. However I am working with an excellent PT for this. I am also doing the anti inflammatory diet, no wheat, gluten, dairy, refined sugar, caffiene and alcohol. Although the past two weeks have gone out the window, but I am really suffering becasue of it! I think you should see the gastro first, and if they can rule everything else out, you should push to see gyne. Keep a diary of all you symptoms as this will help to prove it is cyclical. It is a horrendous thing, and I am sorry you are going through it. xx

[Ronsk]

Hi there,

I also gave the same pain prior and during bowel movement. Mri shows I have a big lumpy mass of endo between my uterus and rectum which my stool presses on when passing through. I had a colonoscopy to sure out it infiltrating the walls of my bowel and there were no signs..

[Coffina]

HI , I Am so sorry you are going through this. Your post brought memories . BAD ONES! when painkillers over the years have wrecked my insides but my endo cramps were also so intense I went suicidal , I saw no point in living in that much pain. I tried every pain killer I could I was on tratadol and Omeprazol was a MUST. However, after one failed (suicidal ) attempt and many fainting episodes all over the city due to fainting episodes due to the pain. I decided I needed to fight this battle differently. I went to Psicotherapy , that helped me strengthen my will power resiliency and anxiety of having to endure pain and living without taking pain killers. I completely changed my life style, it was not easy and it was a long process , I needed support and I started asking for it , which I was not doing before. No improvement came about magically and immediately ( like the initial effect that pain killers used to provide seem my early teens).. I am now in my early 40s I was in my thirties when I was formally diagnosed with endo, but by then I had changed my diet. Antinflamatory diet was a good start ( endo diet) but I went further I eliminated all kind of animal product especially processed one, in fact, I eventually became vegan, gluten and soja free. To start with. ( I know it sounds crazy) but it worked for me to reduce inflamation and severe cramp . I felt so much better with the stomach problems and scrucinated bowel movement. I started eating more green vegetables, beetroot papaya in massive amounts and non processed food ( even vegan one ) its was fantastic for my endo problems, I also started taking generous dosis of Magnesium as I founded it relaxes the muscles/ organs. Over the years, I have tried many of them , the best are in powder , citrate, taurine, glicinate etc. They are all good for me. Most pain killers gave me constipation so that also helped me with that. As "pain killer" I used to take regular te of ginger root and Turmeric root with grounded black Pepercorn lots of it! Every hour when going through an episode of pain.. You can find this combination in pills now a days but in the initial stages when you are trying to heal your inside is better to take everything in natural form. You can use papaya to coat your stomach and fight accid in your stomach. Along with that, I also found that robing soothing oils in my skin/ womb like lavender. Camomile etc , and resting at home during pain episodes with a bottle of hot water and taking it easy its important , but I understand not everybody has the luxury to be in bed as there is always a job to maintain, children to look after and other duties that don't allow many ladies to do this. As my endo was quite bad and I refused more laparoscopies as I believe it increased my pain (and they made me come back to painkillers.) I started taking "endovan", that was a game changer but in time I needed more to control my pain so I started LDN. I combined the two of them as my treatment. A massive life changer! LDN, Low dosis of Naltrexobe it has an effect on the opioids receptor of our bodies . You have to do your own research on that, all that I can say is that is working for me but I need to stick to my antinflamatory diet for it to work properly. I am now slowly returning to a more flexible diet /life style BUT I remain gluten free dairy free and I eat as much organic natural products as possible. I occasionally take the odd pain killer but I don't really depend on them At all. If you feel you want to try and have question let me know and we can have a chat about it. Xxx