I had my first laparoscopy yesterday. My surgeon found a lot more Endometriosis than she was expecting as I was previously diagnosed with it from an MRI scan but not all of it showed up on that. It was found in the pouch of Douglas, between my womb and bowel, around my bladder, and around the front of my womb too. This has now all been removed by ablation and laser. I’ve also had the Mirena coil fitted. I have stage 3 Endometriosis.
During my laparoscopy they also found that I had interstitial cystitis, I was told that this is like IBS of the bladder. I wondered if anyone else had heard of it or has this condition as it is common to have both apparently. I’m going to have to go on a FODMAP diet and wondered if anyone else followed this diet too?
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Ive been sent home with an array of medications, ibuprofen, paracetamol, oramorph, codeine, naproxen, omeprazole, buscopan, senna, and an antibiotic.
I’ve been told that the lining of it has been damaged, nothing from what I’ve done it just correlates with Endometriosis. It’s very similar to Irritable bowel syndrome but it’s basically the bladder version of that. I just need to work out what drinks and food trigger it and try out a new diet recommended highly from my consultant xx
I followed the FODMAP diet for 3 months about 2 years ago. I would really do loads of research as I lost quite a bit of weight on it and I’m already fairly small. Portion size is really important and not all veggies are ok. As far as I believe FODMAP is not really a permanent solution but more of an Eli Marion diet to see what works for you and what doesn’t and also to rebalance the gut health. I now do an endo/anti inflammatory diet and find it works very well for me & I still get lots of nutrients. The book “A whole new you” by tia mowry is really good and defo worth a read as it’s centred around gut flora and Endo.
Also I get Cystitis it’s quite common and I find that a cranberry tablet once per day can help. It works wonders for me and if I forget to take it I know about it. Not 100% sure but cranberry clears the urineary tract of bad bacteria so 👍
I only weigh 7 and half stone so I definitely don’t want to lose anymore weight! I’ve lost a lot from being ill with Endometriosis and I’ve been struggling to put it back on healthily.
I’ve been advised by consultant to follow the FODMAP diet for as long as possible as she believes it will help me tremendously with my Endometriosis and irritable bladder syndrome. I haven’t heard of an Eli Marion diet? What’s that?
I’ll definitely have a look at the book as it sounds like what I may need.
I can’t tolerate cranberries as they make me sick so my consultant has told me not to take anything cranberry related as it just makes me worse even though it’s typically what helps.
I can't help too much with the other stuff, but Interstitial Cystitis (or as it is more commonly known as Painful Bladder Syndrome in the UK so it's not confused with infections) is something I've allegedly suffered with for years since childhood and was told I had it in 2012 after years of symptoms and being wrongly diagnosed with infections all the time, though I have never had the cystoscopy confirm it but I want to after sorting my Endo out, though I have all the common symptoms of it I do wonder if it is just Endo on my bladder. Did they say how they have diagnosed this if you haven't had a cystoscopy? They should refer you to a urologist too if they haven't already.
And please please please do NOT drink cranberry juice if you do have IC, it is one of the worst things you can have, it's like pouring salt into a wound! Any fruit juices are. It's not an infection so it doesn't help at all, your bladder lining is probably damaged with IC. I found these websites very helpful in explaining what it is and how to help:
I know one of those links says acidic food is a myth but I've found most acidic foods do indeed set it off with a few exceptions. I personally only really drink water and milk now but can have the odd drinks that I've discovered don't irritate my bladder over the years, can't touch any acidic drink especially fizzy pops, fruit juices, tea, coffee, alcohol etc without it causing a flare and they can be agony. Some people are lucky though and have a lot less triggers.
There's a few treatment options, most commonly used is bladder instillations, where they basically put a liquid medicine into the bladder via a catheter, get you to hold it for so long and then drain it out, so it sort of makes a layer in your bladder to protect it and relieve symptoms. There's the medication route with stuff like amitriptyline but I hated that as I gained so much weight I was nearly 20st and was just a zombie all the time. They can also do cystoscopy with hydrodistention every few months too, where they sort of stretch your bladder with fluid via catheter and somehow that is supposed to help but I never had it. But there is an off licence tablet medication you can request at the hospital from a urologist called Elmiron which tries to do the same thing as the instills, you take it continuously, but again that can have a lot of side effects and I didn't find it helped really.
Theres something you can buy yourself too call Prelief, they are tablets you take not long before having acidic food and drinks, now I did find these helped me quite a lot and I could eat and drink stuff without having a backlash! I've not bought them for years but I think they are easier to get hold of now than they used to be, they are well worth a try though.
I would start keeping a diary of what you eat and drink (if you do think that you indeed have IC) and what your bladder symptoms are like afterwards, it's well worth doing especially if you do see a urologist.
Anyway sorry for going on, I hope this helps somewhat!
Thank you so much for all of that! I had my operation two days ago and they thought Endometriosis was in my bladder so I had a cystoscopy whilst having my laparoscopy which diagnosed the painful bladder syndrome. I’m under a private hospital so I don’t know whether they will refer me to a urologist as it’s not the NHS.
I’ve been given a special diet to follow which says not to drink any fruit juices, fizzy drinks, alcohol etc! So far as it’s only been two days after my op I’ve been told to follow this diet and in four weeks when I see my consultant again she will review how I’m feeling etc. She said there are oral tablets she can give me if I’m struggling. I was told that interstitial cystitis was no fault of my own and it correlates commonly with Endometriosis as does IBS but I don’t have that.
I too have a similar story to sez1998. Do the things she suggested. Might I add... I use Cystex OTC at the drugstore. It calms my spasms when I have a flare. Drink tons of water and pee often. Don’t hold your pee and let it sit in your bladder for hours. The DMSO instillation does help (although not comfortable at the time). Also, stay away from acidic foods (tomatoes, citrus fruits, anything pickled or cured, chocolate, etc). A friend also says that a teaspoon of baking soda in 1 cup of water will calm down the pain as well. Good luck and welcome to my new normal:/
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