I am newly diagnosed… 30th December 2021 I underwent a lap which diagnosed bladder Endometriosis (it’s apparently been removed) and I have dense adhesions attaching my bowel to my abdominal wall. Unfortunately, the adhesions were not treated and the surgeon did not refer me on to anyone else.
My GP is fighting my corner as he has been dealing with my pain management for the last year or so. I’m hoping to be referred to a specialist soon…
Has anyone else got the same as me? I’m unsure what to expect, what is normal and what will happen next or even what my best options are.
My bladder still isn’t right, I’m retaining urine which causes pain and have difficulty starting. I have dribbles and have to keep trying by rocking back and forth before squeezing.
The bowel adhesions are on the right side but I always get agonising left sided pain when waste is moving through my bowel. It’s like a sharp ache which radiates down my side, back and leg. I have tried everything to relieve this pain from tramadol, heat patches, amitriptyline to eating a soft food diet. Nothing helps. Is there anything else I can do or is this it?
I feel so deflated, I am in pain every single day and it’s really having a big impact on my ability to care for my children and hold down a career. I understand that surgery can cause further adhesions, but there is also a chance it may relieve the pain I am in. What’s your experience with treatment for adhesions?!
Thank you for taking the time to read my depressing post!
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Ccn2018
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I'm exactly the same mine is my bladder and bowels especially through the night I'm waking up through the night needing to wee and I've never been like that I'm having flare ups constantly but I'm also on injections that stop my body from producing estrogen but it's making me so fed up all these flare ups it's untrue 🥺
I’m so sorry you’re in the same shitty situation!!! Mine seems to be a constant flare up, I don’t remember the last time I had a day without any pain.
Can I ask, what do the injections are supposed to do? I’ve just had the mirena fitted but hasn’t changed anything pain wise, just makes me bleed constantly!
It basically stops the pain well so they say and stops you producing estrogen endometriosis thrives of estrogen but I wouldn't even bother asking for it I've heard so many girls say it made them alot worse my first injection it was brilliant not one flare up but I'm on my 4th one this month and I'm having flare ups constantly even if I eat certain foods to its such a crap condition because not alot of people understand how badly it affects us because its not visible x
are you on Zoladex? Did it settle? I’m about to have my 3rd injection and have had nothing big severe pain since I started. It’s like one huge flare and the worst flare I’ve ever had! I’ve been in a&e with it and now on morphine - I’m seriously losing the will to live!!
So sorry that your going through this I’ve been like this for a year now and they’ve got me on morphine for the pain I can’t eat and I’m in constant pain I can’t sit in my bum for more than 10 minutes without feeling so I’ll and sick that I have to lie down I’m having trouble weeing and pooing I’ve lost 2 stone and haven’t been to work since December last year good job I’ve still got my job I spend my life either sleeping or lying in bed with a long hot water bottle between my legs and up the back and front this eases the pain I’m supposed to be seeing the consultant to talk about surgery but he’s cancelled my last 3 appointments it’s like torture sitting waiting for appointments to come On my mri it showed that my POD had obliterated he sent me a diagnosis and then keeps cancelling my apps when he knows how poorly I am it’s pure neglect xx
how are things now Mel? It’s crazy to think that you responded to my post a year ago and I’m now in your position - off work and on morphine, in significant pain. Have you had any further treatment? How have you got through this? It’s so so awful
I had bowel adhesions removed last March. It took a few hours of surgery (I had a hysterectomy too as I had adenomysis) and needed a bowel surgeon as well as a specialist endo surgeon. You might need to get your GP to refer you to a specialist endo centre for them to look at it, they can hopefully use the images from your first op.
I was in constant pain too. Couldn’t sit down for long, couldn’t travel in a car. The injections did help, I had Prostap, they reduced the size of my uterus before it was removed (they called it bulky in my first op, nice! 😊 ) but I had a horrible bleed two weeks in and that is a possible side effect. It was tough. Don’t know what else to recommend. Electric heat pads are good, if you don’t have one already. I also listened to the audiobook Mindfulness for Health. It’s got some really interesting stuff about how pain impacts the body. I realised I was holding my body really tense because I knew the pain would come. It helped to use some of their relaxation stuff.
Really hope you get the support you need. Keep fighting x
I am also newly diagnosed in December. I’ve got stage 4 which has spread to my bladder (my ureters), womb, ovaries and my bowel.
For my next steps I’ve been advised that I need an MRI which I’m actually getting on Wednesday morning - they’ve said that this will detect how deep my bladder / bowel adhesions are. I know that my bowel is stuck to the back of my womb as the surgeon said she couldn’t touch that. They also advised that my POD had been obliterated but I’m not even sure what this means 😂.
I don’t really have advice as I’m trying to figure out what’s best as well but just to let you know you’re not alone ❤️. My bladder can flare up, it’s awful. I nearly peed myself on a dog walk the other week 😂 I have to laugh or I’ll cry haha. X
Hi -Sounds similar to my condition. I have stage 4 Endo and fibroids in my womb. The fibroids are so big in my womb that this is causing pressure on my bladder. I have been advised to have a hysterectomy. However because my bowel and womb are fused together this cannot be done via laparoscopy and I will need surgery which scares me ! Sorry for not giving any solutions but I know sometimes it helps to know your not alone. xx
I had stomach ache and went to out of hours. They took blood tests and an X-ray, I got told that, I was constipated and was given laxatives. I had a ultrasound and was told I had a complex cystic lesion that was sinister 17.9 cm. I had surgery in October 2021. I woke up from having open surgery to be told, that, they couldn’t removed my cyst as it had took all the space from my hysterectomy and was around my back, and wrapped it self around my bowel and everything was stuck. I’ve had more CT scans with contrast and it shows an adhesion going through my rectum and my vagina stump . I have asked to go to a different hospital and have an appointment in 4 weeks. Had a CT scan with contrast yesterday and awaiting another ultrasound. I’m on heavy pain killers and laxatives at the moment but, I can’t keep taking them and this is playing havoc with the base of my back and pains in my stomach. Hopefully, they will sort it soon. Hope everything goes well with you.
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