Waiting for MRI to see if endometriosis impalnts have infiltrated my bowel

[Mummywithendo2020]

Hi everyone. So, I am sitting here with a glass of wine thinking about how awful this year has been and what I have to look forward to. I had a laparoscopy and hysteroscopy on the 31st October. I was diagnosed with endometriosis but I didn't realise the extent until last week at my post op appointment. I saw the photographs from the laparoscopy and was shocked at thr amount of implants/spots there were. (Behind womb) I was refered to a different consultant the next day who had referred me for and MRI to see how deep the endometriosis is and if it has infliltrated my bowel. I am pretty concerned as when I am opening my bowel the pain is getting worse. If anyone has been through excision surgery and bowel surgery can you tell me how the recovery was? Thank you. X

[Noz29]

I wanna tell you my story. I'm 36. Dutch. Endometriomas were found in both ovaries in august by accident. I was having a spinal mri for severe sciatica and they found them. I went to gyno. Had another MRI for deep endo. I was diagnosed with kissing ovaries. A 6.5 cm cyst left and a 4.4 cm cyst right. My gyno said she couldn't see any deep endo on the MRI. But we all know that kissing ovaries mean.. Severe endo. I felt like my gyno had no idea what she's talking about so I went for a 2nd opinion elsewhere. This gyno saw deep endo on my bowel on the ultrasound. It hadn't infiltrated much but it was there. She also told me my bowel was stuck to the back of my uterus. Which means my anatomy is f*cked. It could eplain my backpains. But cysts in general can explain. I hadn't heard of stuck bowel before. I had no idea I had endo. I'm not convinced my sciatic nerve is involved as well. Since there is no other explanation for my horrible sciatica, hip and backpains. Gyno said it wasn't visible on mri so it's not there. But these words are all a big mistake.

And what I've learned from ultrasound and mri is that if something is seen on ultrasound, it is even wayyyyy more severe on lap. And if mri doesn't show any deep endo or lesions, it doesn't mean it isn't there. They can miss them easily. The only thing an mri is good for, is for cysts bigger than a cm. The rest is just a guess. It even depends on what type of MRI they're using and how full your bladder and bowels are during test. It can effect nerves and muscles and by saying it is 't there cause its not on the MRI is just wrong. They should be prepared for the worst if there's cysts. And when there's bilateral cysts it's prob even worse. Type 2 cysts are very hard to excise apparanlty. And do way more damage to the ovary

My gyno said.. If it's in your bowel we're not doing surgery. I was in shock. That didnt sound like someone who knows what they're doing. On the other hand, they might be honest and better tell me up front. But then they shouldn't call themselves a specialst center. Since I haven't received any info on fertility or surgery I'm going for a 3rd opinion if necessary. I feel that these cysts can't stay inside of my ovaries. The pain is getting worse.

I've noticed that most girls are so relieved when they've finally had their endo diagnosis after many years. I wasn't counting on a diagnosis and it was thrown in my lap just like that with all the horrors that go along with it. I'm very worried of how severe my endo is. I've been in pain since 2017,but that's the backpains. I considered my painful and heavy periods normal. Since I didn't know any better. My cycles have always been regular. So I had no idea. It was in the back of my head at times. When I had to cancel appointments and was throwing up because of pain. But my gp always told me I was just too sensitive.

The depo shot I used from 2009 till 2013 worked for me. At least in stopping my menses. The pain was gone! But the side effects were horrible. Gaining weight, I had to pee the entire day, depression.. Brrrr I had to quit. It took more than a year to get my periods back. Since these cysts weren't found on ultrasound in 2015,they must've formed after that. I believe in 2017,that was when my backpains started.

I think you shouldn't rely on MRI too much. It's probably there. I can't tell you about surgery. Cause I haven't had one yet. I am very worried about fertility. Since I want to keep it. But there's women who can get back to work in 2 weeks. Some in 3 weeks but some suffer for months afterwards. I think with severe endo you should think in the region of months. You mentioned deep endo. If you have deep endo recovery will go slower. In my opinion. Take care! Be your own advocate. Read books, join the foundation, do 2nd and 3rd opinions, gynos don't know enough. No one does. ❤️

[Mummywithendo2020 in reply to Noz29]

Thank you for your reply. I had a diagnostic laparoscopy and saw the pictures of the endometriosis implants but the consultant referred me to a specialist who is questioning bowel involvement and said the MRI would show this. He is definitely doing excision surgery to remove the endo in pelvis. I hope you get better soon. X

[plotments]

I'm currently waiting for a hysterectomy and removal of bowel endo so would be interested in your replies.Just wanted to let you know I was recently given new tablets by my Dr to help with painful bowel spasms....Alverine. audomnal forte. I've tried buscopan and colpermin in the past and they never made a difference but this tablet is a great help.

[Mummywithendo2020 in reply to plotments]

Thank you! I will try that. X

[Anna_EndoUK Moderator]

Hi Mummywithendo2020

I’m sorry to hear that you are feeling sad at the moment :-(. I do not have any experience with bowel surgery, but hopefully some of the women on here can give tell you about their experiences - but it's worth remembering that recovery is different for everyone.

In the meantime, if you feel it would help to speak to someone about how you are feeling you could ring our Helpline on 0808 808 2227, it is open tomorrow from 10 am - 12 pm and 7 pm - 9 pm. You can find the opening times for the rest of the week on the Endometriosis UK website: endometriosis-uk.org/helpline. The Helpline volunteers have experience of endometriosis themselves, so will completely understand how you are feeling.

Also, Noz29 is correct, unfortunately endometriosis doesn't always show up on MRIs or ultrasound scans, regardless of how severe it is :-(.

I hope you're feeling better soon xx

[Noodle1984]

I’m so sorry you’re struggling. I had stage 4 recto vaginal Endo removed in February of this year. I’ve had painful periods since I was super young, I started my period at 10. My surgery and recovery were super hard. But I have 18 chronic illnesses so it’s hard on my poor body. My surgery was over 3 hours long to remove my rectum from being pulled up and over my vagina. I legit had to look up a diagram to understand and I’m still not sure lol. But I would have diarrhea 8 to 10 times a day and would black out from the pain.

I had a pelvic specific mri before my surgery and nothing suspect was picked up (other than adenomyosis). Also had a colonoscopy that showed nothing. I had a couple of trans vaginal ultrasounds done by an Endo specialist that picked up some Endo but that’s the only test (out of countless ultra sounds). Just because it’s severe Endo doesn’t always mean it will show up on scans sadly.