What is the next step? Bowel/Bladder

[kittcait2021]

Hi all, this is a wonderful community and I am grateful to be apart of it now.

I feel hopeless and lost, I don't know what the next step is.

I've had extreme period pain my whole life and all the symptoms of endometriosis. I saw a gynaecologist who examined me with an ultrasound scan and found nothing, she said the only next step is a laparoscopy but I fear that I have that operation and they find nothing again?

I've had constipation which has been severe - 3.5 years now. I poo maybe once a week and it's never a full evacuation, there's always blood in my stool or on the toilet bowl - never on the paper... Sometimes it gets better when my period arrives. My periods are heavy but have become shorter? Like two days of heavy bleeding? And the month before that my period was all just dark brown blood clots and spotting and gave me a pregnancy scare.

The worst sympton of all is my bladder. Every. Single. Time. I have my urine tested it's negative for an infection. This has been going on a year now and is getting worse... I have constant pressure on my bladder, it always feels full, and it stinks of chicken/beef broth (embarassing, I have no idea why this is)

I just need some advice on what to do next. The gynae said only a laparaoscopy after giving me a scan but it seems so severe for something the scan can't find.

[Roobs33]

Heya,

Sorry you are having pain and horrible symptoms. Things can really vary symptom wise with Endometriosis and pain levels.

Last year I had severe pain in my left side which showed a large ovarian cyst on an ultrasound scan. I had plenty of other endometriosis lesions when they actually did the laparoscopy that couldn’t be picked up via a scan. My sister had multiple scans throughout the years which never showed anything and when she eventually pushed to have a laparoscopy she was diagnosed with endometriosis and adenomyosis. So a scan definitely can’t give you the full picture of what is going on.

I’ve just had a laparoscopy yesterday (my second this year), and although it’s proper surgery the recovery isn’t too bad. Although of course this can be different for different cases. I also have endometriosis on my bowel which will require further surgery (but a different kind of surgery with a bowel surgeon). I recently had an MRI to show the extent of where the bowel endometriosis was. Maybe you could request an MRI before going ahead with a laparoscopy as this would show if any of your organs are stuck with endo and also if stuck to your bowel. It won’t show small lesions but will show if anything is warped.

The bowel symptoms I get are needing to go a lot when I wake up. I can never really empty my bowel all at once. I also get period like cramps before needing to to and also blood during my period.

During my last period it was much lighter, and I got extreme constipation which then turned into a horrible urine infection. My GP told me that one can irritate the other which might be what is happening to you. I was worried I had bladder endo but luckily I don’t, and I don’t think it’s particularly common. So it could just be the constipation irritation. I’ve been following an anti inflammatory diet since jan which I think has definitely helped me feel less bloated and have less pain. Sorry for such a long message, and I hope you get some answers soon. I guess it’s always good to find out exactly what is going on so you can move forward with whatever treatment you might need. Here if you need to chat, let me know how you get on x

[kittcait2021 in reply to Roobs33]

Roobs, thank you so much for your fast, detailed, personal, compassionate response.

Sorry to hear the rigmarole you and your sister had to endure for answers, I can't believe how archaic the system is in regards to women's health! My little sister had an ultrasound years ago and diagnosed with PCOS, I'm starting to wonder if it could actually be endo along with me... She is 7 years younger, could anything be done to prevent her getting to my stage? (If I have endo that is)

You're recovering and already replying to me, that is so lovely of you, thank you.

The gynae asked if I wanted to be referred for a laparoscopy and to the urology department. I declined the former with my reasoning being to see what the urology department find first but now I may ask my GP to put me on the waiting list anyway as I know it's long.

Don't be sorry for the long message the more detail the better especially given the similarity of symptoms, grateful for your advice and candidness. Wishing you the speediest recovery <3 X

[CryBaby91]

Hi Kittcait, I'm going to echo what Roobs said scans usually don't show endometriosis up, that's not to say they can't because yes there are people who have said it's been found that way, but 9 times out of 10 you'll hear that someone's scan was clear and when they had the op they found the endo! So please don't write yourself off, I did that for years and convinced myself that I couldn't possibly have endo because I've had a million ultrasound scans and that surely would have shown it up. That and I believed that if I had endo when I had my cesarean they would have told me, found out 5 years later that actually they wouldn't because it was an emergency one! So now I'm left in a bad way, my symptoms are out of control and I'm having to pay for private treatment to speed up the process please don't ignore it, have the op and get some answers. They wouldn't suggest it if they didn't have a good reason chick xxx

[kittcait2021 in reply to CryBaby91]

Thank you for your speedy response. Awful to hear your symptoms getting worse and outrageous that you're having to go private to get the care you deserve. I think I'm going to try push for a scan and get put on the waiting list for a laparoscopy If I can. Appreciate you sharing your story and advice <3 xxxx