Help! Endo symptoms

[Rose153]

Hello, I've been on this forum all morning and it has been really helpful. I am really hoping someone can let me know if they have similar symptoms.

I have suffered from heavy painful periods since I started at 11 years old. Nothing helped until I went onto the pill at 19. My periods got lighter and easier through my 20s and early 30s when I was on and off the pill until getting pregnant at 34. For the past 6 years they have become totally horrific again, terrible pain, flooding, clots and more recently bowel issues. Sorry if this is TMI but on the day before and 1st day of period I am getting a build up of wind and pain, like I am about to have a bowel movement, but only mucus comes out of my bum. I also have a lot of pain in my back and pelvis and have a constant feeling of needing to poo, and everything seems to be on fire. I am completely bloated, my abdomen is so painful, getting up from sitting hurts, laughing hurts... More often than not I am straining to have a bowel movement. During my period when I have a bowel movement the spasms are horrendous and I have to wait until they pass before I can go, also it hurts to pee too, not stingy but a general achy pain. I now have a constant feeling in my bum like there is something stuck, even after I have had a bowel movement outwith my period. It is there all the time. I am not constipated as I go every morning but I never feel like I have emptied my bowels fully. My GP has been super, I have had full blood count, liver and kidney tests, stool test, rectal exam and everything clear. She wanted me to have an ultrasound for suspected fibroids and yesterday I saw a consultant radiologist who diagnosed a 4.5cm cyst on my left ovary and he suspects endo or Adenomyosis. He did an abdominal and vaginal ultrasound and was very thorough, he showed me everything, took his time and had a good look. He zoomed in on the cyst and explained that the white lines on it were pointing to endo, he also looked at other parts and said he thought they were lesions. I was a bit shocked so didn't take it all in. He has written to my GP saying I should be referred to gyne for help and wants to see me in 8 weeks to check on the cyst. He was really fantastic, but said that he could only see so much using the ultrasound. Sorry for the long post. I am just looking for a bit of reassurance really. Thank you for reading if you have gotten this far!! xx

[Crazycatladyjones]

Hello I am in the same boat as you. I am waiting to see gyne now to see how to go forward. My bowles and pain are horrific! I just sp upset thinking it could be a long wait for a diagnisos or treatment just popping painkillers and trying not to crack up its so hard isnt it.

[Rose153 in reply to Crazycatladyjones]

Thank you for your reply and so sorry you are in so much pain. I was so convinced I had bowel cancer or something. My GP seems fairly certain it's not and with the endo shock yesterday, I just don't know. I have already changed my diet to gluten free, no dairy, mostly plant based and that is helping somewhat, but it seems like my bowles (sorry TMI) want to move but my butt says.. NOPE!

[Crazycatladyjones in reply to Rose153]

Same I have always suffered with IBS but about 2 yrs ago a GO told me about the FODMAP diet once I started that it was a great breakthough and my tummy had bever been so flat and no more bad wind or constipation. then I got my contracptive inplant out Dec 2020 I had this 12 years and barley had a period at all. Since Dec my bowles have bene awful bloating pain one side stools much looser but stool sample and bloods were ok like you I thought bowle cancer but then after making a diary of when its all happening it all llinks with my cycle. During the proeods I cant pass stools without crying in pain as it feels like the worse pain up my bottom ever. I feel like my bowle is in a huge knot on my left side and am constatnly bloates. Thats when I saw GP again who suspected Endo. Just a waiting game now... nothing helps though Im taking buscopan and paracetomaol/ ibuprofen I cant take anything stronger than that. My diet is great and still follow the whole fodmap thing and even tried probotics no differnce at all its so hard just want answers now x

[Rose153 in reply to Crazycatladyjones]

Yes, this is the same. I have been using Symprove probiotic and it might be helping, but it could be cutting out of gluten etc. I think I have strained so much I have caused an internal hem. Fingers crossed we both get the answers we need. x

[Crazycatladyjones in reply to Rose153]

Yes differently take care and let me know how you get on xxxx

[Rose153 in reply to Crazycatladyjones]

Yes you too xx

[Charlieuk87]

Hi Ladies, I've suffered with the same pain the last few years - light IBS but mostly linked to my cycle too. When I started my diagnosis journey, I was referred to a Gyne but also passed to a Gastroenterologist. I had several investigative procedures (none of which are particularly nice) . I had a colonoscopy and an endoscopy but then also had a defecating proctogram (you lie in a MRI, they put a clear gel in your bottom and you push it out - in essence pooping in a MRI) - it was horrific and so embarrassing) BUT it gave me a diagnosis. As well as Endo, which is attaching my bowels to other organs, my bowel muscles don't turn on in the right order, so when the body tries to defecate, it pushes stool in different directions instead of down/out - causing the pain/gas/bloating. A light laxative, FODMAP diet and a 'squatty potty' (husbands term for a little stool you put your feet up on to better align your bowels) may help.

So there you go, I'm onboard the TMI train and hope it helps

[Rose153 in reply to Charlieuk87]

Thank you for this reply. This is really helpful. The pain is right at my tailbone with a feeling of needing to pass wind or have a bowel moment constantly. I'm glad you got a diagnosis! Will definitely try the stool tip!

[Crazycatladyjones in reply to Charlieuk87]

Goodness me! Im waiting to speak to GP again when my bloods come back so I wil lse eif there is anymore tests or investigstions also to check bowels.