Anyone else experiencing or experienced similar?

[jcb12]

This is probably going to be a bit lengthy and ramble so I apologise and advance and also thank you for reading!

I’m 23 and I saw a gyne in May after having problems for the last atleast 5 years. I’ve FINALLY been referred for a lap but been waiting since the beginning of May and the wait where I am is around 9 months (or so I’ve been told by the gyne team at the hospital)

The symptoms I’ve been having have gone from hardly being there for a couple of days to absolutely unmanageable.

I spoke to my doctor last week as I just wanted some pain relief or something else to help but instead she’s sending me for blood tests and needing to provide a stool and urine sample to test for food intolerances (I had these done about a year ago and nothing came back!) so seems strange she’s doing them again but my question is, does anyone with Endo notice that there are certain things they can’t eat or can eat sometimes and other just not agree with you? I’ve also taken medication for IBS for the last 6 months but it seems to do absolutely nothing to help relieve anything.

I have days where I’m in so much pain and if I eat I either throw up instantly or end up with an upset tummy. I also quite often have sickness and upset tummy in the mornings almost as soon as I wake up and it’s getting to the point where I cannot cope anymore.

I’ve looked into going private for a lap but it’ll cost between £3-£8k and right now my boyfriend is trying to talk me into using some of our savings to have it done.

Can anyone offer any advice or has anyone been through similar? Just getting so fed up now😩😩

[Christin_a]

Hello

Yes there is something called the endo diet. It excludes alot of the common things that can causes issues like gluten, red meat etc.

I find certain things don't agree with me when I'm having a flare and I've only learnt this from trial and error and keeping a food diary.

As for going private just make sure that if you do go down this route the person doing it does have a specialist interest in endo. Do you know if you are suspected of having endo on your bowel or bladder? If so you'd need to ensure that they have the relevant surgeons on hand to deal with it if it is on either of those (I.e if on bowel it should be a colorectal surgeon who removes it from there especially if it's deep infiltrating)

[jcb12 in reply to Christin_a]

thank you so much for taking the time to read and reply!

I’ve done diary but I hadn’t noticed anything specifically so maybe I’ll have to start having another look and see.

They haven’t said specifically, in all honesty the gyne I saw wasn’t all that interested in what I had to say so I’m honestly not really sure... looking at symptoms and stuff online and things I’ve read Id say it sounds like bowel related but I really don’t know x

[the1in10woman]

Hi! I also experience what you have mentioned, I downloaded an app to track my cycle (moody month) and have been keeping track in there of the foods I’ve eaten that seem to be causing me an issue. For the last 6 or so months, when my period started I literally couldn’t keep anything down. I was beyond nauseous as if on a boat, and anytime I ate food it came straight out the other end so I totally feel your frustration for the last 40 or so days I’ve been caffeine, dairy and gluten free and found that it made a HUGE difference during this month. When I last spoke to my Gynae he explained with endo it’s common for some women to have these horrific IBS symptoms. During week 4 and then week 1 of my cycle I literally stick to a very clean (albeit boring) diet of white meat/ fish, salad and veg, water but it’s worth it for relief

[StefaniaJW]

1) Do not allow your GP or GYN to refer you to any specialist. You need a well-trained and highly experienced EXCISION (not ablation!!!) surgeon to perform the laparoscopy. Deny a diagnostic laparoscopy because you don't need a diagnosis, the diagnosis is clear from the clinical evaluation. You need all endometriosis to be removed. If the surgeon and his team is not skilled enough to face all endo stages (and in your case I fear it is at least up to the bowel given that you have IBS-like symptoms), you will have to undergo surgery again. We don't want that. We want you to get it done right the first time. There are a handful of surgeons in the UK that fit this description and who work within the NHS (you will get a wonderful lap without having to go private). Please contact me privately to get their names, I am not allowed to post them here.

2) Your IBS medicine isn't working because you don't have IBS. You have endo on the bowel. Your symptoms will not resolve until you get it removed from the bowel through thorough excision surgery.

3) With endometriosis, the best diet to follow is an elimination diet such as the Whole 30 or a Paleo AIP. You can, however, start with something more mild, such as getting rid of these foods: everything processed, everything fried, all cured and industrial meats, all dairy, refined flours and carbs, sweet goods and baked ones (bread, pasta, pizza, crackers, breadsticks, desserts, cakes, muffins, waffles, sugar snacks), gluten (if you feel better without it), all drinks containing alcohol and preservatives or colourings, coffee and milk chocolate.

You CAN eat: all freshly caught fish (especially mackerel and sardines), all veggies, raw, cooked and fermented (some people cannot stand nighshades though - so tomatoes, eggplant, bell peppers and potatoes), free-range eggs, grass-fed meat, all fruit (especially berries and pineapple), chia seeds are ok but flaxseeds are a big fat no-no, nuts if you are not allergic and they don't upset your gut. You can drink only water, homemade alcohol-free beet kvass, coconut milk, matcha green tea, herbal teas that don't contain any herb that affects hormonal levels. As far as dressings are concerned, you can have lime and lemon juice, extra virgin olive oil or coconu oil, marine salt, pepper (chili pepper should be avoided if the gut is really upset) and vinegar. You can have a small piece of very dark chocolate a few times a week if you have plenty of fish and veggies.

I hope this helps! Please do ask me any questions!!

[jcb12 in reply to StefaniaJW]

Hi thank you for your reply! I will drop you a direct message now☺️