Anyone had an MRI found Endo in other places after lap??

[SJ0514]

Hi ladies, I just wondered if anyone has experienced the return of Endo after alblation. I had this on my left ovary in August 2023. My symptoms the last few months have got gradually unbearable especially around ovulation time and 2 weeks of pain before my period. don’t know if they would check your bowel during a lap as routine? I have classic bowel Endo symptoms rectal spasms & pain/ bowel movements 6 times a day and excruciating left side abdominal pain. Stomach is all over the place after sex too. I have suffered with IBS all my life and this is not just IBS! This month was worse than ever!

I have an appointment at Drs on Tuesday and wondered if they can refer for MRI or would I have to be referred back to Gynae then go from there. My aftercare was patient initiated check up and think you only have 6 months to do this.

Anyone know how much an MRI scan is private?

Thank you for reading and wish you ladies all the best xxx

[StaffieBunnyMum]

Time to take action and ask your drs to give you a referral for both at the same time. That way you'll already be on a waiting list and that can speed up the quest for answers. Don't let them waste your time. In the meantime I wish you patience. Never doubt your body or your feelings. Xxx

[SJ0514 in reply to StaffieBunnyMum]

Hi there StaffieBunnyMum thank you so much for your reply. I genuinely think they didn’t check my bowel at all. I think an MRI will give me more answers. I had a colonoscopy a couple of years ago which was clear, but apparently this wouldn’t show Endo on the bowel. This week has been awful 😢 I struggle with painkillers (only take paracetamol which doesn’t do much) as my stomach is so sensitive they make it worse. I have logged all my symptoms and hopefully they will refer me. All the very best to you & thanks again xx

[NeedsHelpx]

hi hun, if you read my bio it explains my history, I had the lap in OCT 2020 and was finally diagnosed with Endometriosis which was localised and small on my left side and was removed/dealt with during lap. I requested Hysterectomy was told that’s last resort and “doesn’t cure endo” I had to try all the recommendations to slow / stop the endo Pill, Mirena, Prostap, etc, to no avail, Actually made me worse. My periods, back and pelvic pain were unbearable, Pain management got involved DEC 22 ordered MRI and offered pain relief to assist while awaiting results. 4 weeks after my scan PM contacted me with results, my endometriosis had spread and now on bladder wall and infiltration of small bowl loops. Now I have been referred for the FULL TOTAL hysterectomy (cervix, uterus, ovaries, tubes) PM recommended Tapentadol slow release to manage my pain in short term while waiting for my surgery, WORKS AWESOME WITH PAIN, just can’t function normally day to day, leave you groggy and sleepy, been on them nearly 18 months. And I’m Still waiting for the surgery, I know my body and my family and partner all agree that since all the Endo “cures” I’ve rapidly declined and in 18 months while taking the “cures” it’s spread. GET PAIN MANAGEMENT INVOLVED, ALWAYS GO TO YOUR GP , GO TO WALK IN/A&E IF NECESSARY DONT SETTLE, PESTER and pester you shouldn’t have to suffer because the experts are involved,

[SJ0514 in reply to NeedsHelpx]

Hi there, so sorry you have and still are having a terrible time of it 😢 thank you so much for your reply. I did read your bio and mine sounds tame in comparison to what you are dealing with l, it’s awful xx I will keep on at them, I have to try to get it sorted as i feel like no one in the family understands. It’s really good to speak to others who have to deal with this horrible disease. I also have PCOS which was diagnosed in 2018, the radiographer showed me on the scan both my ovaries were plastered in cysts. I tried the mini pill for a few months, apart from hot flushes which did settle it did help but my facial hair was firing through worse than ever and my anxiety was through the roof!! I am 45 and I am on antibiotics as my cystic acne gets really bad.

I know they say it can’t cure everything but I would gladly have a hysterectomy as my hormones are the cause of all of my issues.

I wish you all the very best with your surgery and really hope it helps. I hear mix things but my friend had a full hysterectomy at 40 due to cysts, bleeding, acne etc. she said she feels the best she has for years!

Take care of yourself xx

[Endofitall]

So sorry to hear your troubles. Is it ablation rather than excision you had done? Ablation does not get rid of the “roots” of the endo so more likely it can return. Was your lap done by and endo specialist? The fact you’ve said ablation makes me think it wasn’t in which case they may not have spotted disease affecting the rectovaginal space/bowel etc in same way specialist would.

Beware that MRI doesn’t always pick up everything especially if done outside of specialist endo centre. The prep and interpretation are important. I didn’t have any contrast or bowel prep, and radiologist reading it was not specialist. I was told no DIE on scan. At lap tho I had severe rectovaginal disease.

[SJ0514 in reply to Endofitall]

Hi there thank you for your reply x

Yes, it was ablation and tbh I had read about it returning in as little as 6 months as it needs to be surgically removed! Lap wasn’t done by an Endo specialist- can you request to be referred to an Endo specialist from your GP if there is one in your area or is it only private clinics? I will need to look into it.

I hope you are ok now and thanks for the info; can I just ask, did you had similar symptoms to mine with the rectovaginal Endo? xx

[Endofitall in reply to SJ0514]

No problem.

In England you should be able to be referred where you want via choose & book. Have a look at BSGE centres near you and ask GP to refer there. bsge.org.uk/centre/category...

My symptoms were definitely very similar. x

[Cocoacupid]

hun I was always told ibs I already had a coil in place I had a lap last year and they found severe endo my bowel has to have a total resection which I’m having in around eleven weeks now . I had an mri after my lap to as they couldn’t see how badly it effected my bowel and with an mri you see the organs clearly and all the surrounding tissue and blood vessels as it’s more clear. I’m having my pre op with coleractol surgeon end of April . My symptoms are still severe am always in the toilet I feel like I live in the loo. I would say though that I was worried about my bowel couple years or more ago and I was always told it’s the meds I’m on. Got so bad the dr was worried then I had inflammatory bowel disease took a stool sample near in my mind I don’t have a period and lots of blood in stool sample had a colonoscopy but they couldn’t find anything to give me my symptoms. This is because instead of crohns or ulcerated colitis being in the inside of the bowel endo is found more on the outside of the bowel. I also was told after my lap I had a frozen pelvis where all my organs had fused together because of the endo. I would go with your gut if you feel it’s more endo then get a referral as soon as possible. The waits for gynecologist specialist are lengthy. I was lucky though I saw a locum dr and she referred me to gynecologist I was having a lap three months after referral. I found though when you make a lot of noise your then listened to properly and they go down the right Chanel’s if you just settle for what they say. I had numerous trips to a and e in agony being sick and then dehydrated and all they wanted to do was pregnancy test when I said I’m not having relations I don’t have a bf they didn’t listen still did a test as they said in hospital it’s there protocol and then this other dr wanted to do endoscopy but I never had that done as it was the wrong dr to see at a and e in the first place. So from my symptoms worsening to then be seen by right people took from 2019 to 2023 I just had to push because if I hadn’t I may not be here today. I had seen gynecology back in my early 20 s when they found cysts on my ovary’s but it wasn’t a normal cyst we’re now looking back endomertiomas as the pain every month for me from ten years old to early 20 s got worse and worse every month to the point I saw the out of hours dr every month till I had a coil fitted but looking back that only masked symptoms till my body had had enough in 2019 . Please get someone to advocate for yourself. I think endometriosis is more common now as I remember one dr saying to me she thought I had it but nothing was then ever actioned. It took for me to move house and change drs to get the right diagnosis and see the right people. This is why the normal guidelines are between seven years or more but now a days it’s more common knowledge and it was just by chance saw locum and I had emergency lap referral which took three months to then have diagnostic surgery. In a drs mind they need to rule out everything. But you need to be strong and push as with an emergency referral you get pushed to the top of a list. X

[SJ0514 in reply to Cocoacupid]

Hi there, sorry to hear you have suffered for so long and thank you to everyone for sharing your stories x I really hope all goes well with your surgery and it gives you a better quality of life. It’s an awful disease that affects so many..

My friends relative who is the same age as me, has had numerous laps, surgery and they finally agreed to a full hysterectomy. The surgeon said it was the worst case of Endo he had ever seen it was everywhere 😢 she was in theatre for ten hours!! She is now back at work and feeling much better.

All the very best to you all xx

[Cocoacupid]

thank you I e been told it’s a hospital stay as my be under for at least 6-7 hours as will unfreeze my pelvic organs as well as doing extensive bowel surgery. Am so scared 😱 of getting sepsis again but I’m glad my mental health has no improved and gone back to normal. Sending lots of hugs and hope you get treated sooner rather than later. I’m in the south west but to wait for this surgery has been about a year and a couple months since my diagnostic surgery.

[SJ0514 in reply to Cocoacupid]

Ahh big hugs to you too thank u x wishing you a speedy recovery and be great to keep in touch. Just followed the link that Endofitall kindly sent to me and turns out Endo specialists at 2 hospitals both 20 mins away from me, so thanks for sharing that x I will take this to my Drs on Tuesday 😊 I am in Shropshire and I waited 7 months for lap from my appointment with the consultant.

Good luck, wishing you all the very best xxx

[Chronic21]

So after my first surgery recovery happened, 4 months free of pain after the recovery then I got pain again. My referals were to1 gynae

2 endo specialist

3 pain management clinic

4 pelvic floor physiotherapy

The likelihood of it showing on any scans is minimal and generally from what my specialist said usually it only show deep infiltrating endo.

Once you've been diagnosed its normally just managing symptoms as they arise.

I personally would ask to skip gynae and go straight to an endo specialist, they can do the other referals for you and make sure the people you see and also train in endomanagement.

[SJ0514 in reply to Chronic21]

Hi there, that sounds about the same for me. Probably 5 month much better then last 2 have been terrible again, if not worse than I had before! I only had one incision which was central, don’t they usually make 3 to look at other areas- anyone had this?

I am going to ask to be referred to Endo specialist at the hospital not that far from me, so fingers crossed!