what next?? Adenomyosis, endo and now found on colon

[NBeanie1978]

so I’m wondering if anyone has been in the same position and can tell me what happened to them.

Suffered severe heavy bleeding and debilitating pain and finally got diagnosed with adenomyosis a year ago and recurring endo having had some removed previously. Laparoscopy in Jan this year to remove endo, do an ablation to stop bleeding and fit coil. Coil did nothing for the pain and actually created more and the bearing down pressure in the rectum continued with pain passing stools and blood which was more obvious so returned to gynae. They said even though the rectal bleeding coincides with cycle can’t be endo related as they’d have seen it on the laparoscopy!! Referred to colorectal. Yesterday had an attempted flexible sigmoidoscopy mid period, saw bruising internal, endo, sigmoid colon so swollen couldn’t get the scope through. Sent images to consultant and had a call same afternoon to return today to repeat to get biopsies, use a smaller scope to try and get through as it’s already been sent to mdt.

does anyone know what will happen next or can give me an idea on timescale? Should I be looking at bowel surgery and will they finally do hysterectomy? Would they do both together?

sorry for all the questions I’m just not sure what to expect next. Has anyone else been in the same situation?

[Stomacron]

I'm in my 70s now, so please take that into account when I tell you what happened to me. As we age, some people's skin tissue can become more fragile, and that might explain my experience. I had a hysterectomy when I was in my late 30's, the surgeon told me then that he had done his best to remove lesions but that he had been unable to access all of them, so I knew that adhesions still existed. I lived with the pain and discomfort of those colon adhesions, in spite of no longer having menstrual periods. The pain was also evident when I was emptying my bladder and I assumed that there were lesions on it too. In my late 60s I suffered a number of fistulae from my colon to my bladder and my colon to my vagina which resulted in fecal matter coming out through my vagina. After some negotiations and delays, I was eventually fitted with a stoma. During the operation, the surgeon removed my appendix, removed the sigmoid colon and fitted the stoma on the left side of my abdomen. He told me that the whole of my abdominal organs were stuck together which explained how the fistulae had happened. I am now mostly free of pain, but have to contend with stoma bags and urinary problems. My suggestion to you and all women diagnosed with endometriosis is to keep fighting for your body, do it as soon as you can and as a group we should be pushing for more research into this debilitating and hidden disability. Good luck and keep fighting.

[Joonaspryte in reply to Stomacron]

Omg you poor lady, I'm 58 and just been diagnosed, I had tubes, ovaries and complete hysterectomy 16 years ago.I had an extremely agonising colonoscopy, a month ago, which was the third attempt due to blockage, the pain was awful, but they managed 12 biopsies. Lessons should be learnt from your case, I am learning so much about endometriosis, and from medical journals, papers, case studies etc

And yes....we are either being gaslighted or they really don't know enough to treat us accordingly.

So I'm in the process of writing everything I have learnt down, with references. Armed with these, I am not gonna let them do this again.

[Pelvic_pain]

I have very recently been diagnosed with adenomyosis, endometriosis, I have 2 endometriomas, plus endo on my bowel. My family is complete so I am due a full hysterectomy including tubes & ovaries as well as disc excision on my bowel in October. It's with MDT, so hoping they will get everything

[NBeanie1978 in reply to Pelvic_pain]

I’ve been told that the colorectal surgeon sent it straight to MDT from the images alone before biopsy was taken. Does that mean they are more likely to do everything

[Pelvic_pain in reply to NBeanie1978]

I would say that if they can do everything and you are happy with the care plan advised, then they will. It depends how complex it is as sometimes everything can't be done at once

[Cocoacupid]

hun I had a frozen pelvis with endo on my bowel I was only allowed to have excision surgery as they thought they may have had to do a bowel resection which they didn’t in the end I was told I eouldnt be able to have both done together as too many internal wounds and as I got sepsis after my diagnostic lab I would highly likely get it again if I had both done together. I had surgery back in early may back to severe pain again and having a really hard time with pain and almost passing out from pushing my bowels out. I drink loads and still backed up to eye balls. I was told they were pretty sure everything removed. But pain down below pain in hips lower back rectum you name it. Sometimes though it may be possible to have both but it would depend on your surgeon etc. I had to wait a year for my surgery. At first things were easier now nope. I hate this disease. Have coil but get extreme cramping on that. And have even had periods on the coil . I’m not much younger than your self. As lots more women diagnosed the waits are ridiculous and the back log from Covid . Some areas depending where you are in the country are quicker then others. The wait is normally long so they make sure you have the right surgeons in surgery like coleractal and endo gynecologist consultant nurses etc. also with exercison the surgery can be very long . The injection I had to put me in a medical menopause I bleed on but also mood dropped so low. No one suggested add back hrt . Just make sure you advocate for yourself or have some help fight your corner etc. take care . Also on Facebook a endometriosis guidance and information group lots of information and help during this time etc x