Hi everyone ☺️ I got diagnosed with stage 2 endo after a lap last November. We're trying to conceive so haven't been prescribed any meds to manage the endo. Just waiting for an IVF appointment.
I've stopped eating gluten, not having caffeine or alcohol. Taking supplements. Eating well, sleeping well, exercising and built in nice activities to do each week to help with low mood.
Every month around ovulation I have what I would call a flare-up and I wanted to check if others have these symptoms and how they manage them.
The worst symptom is extreme fatigue then I have body aches, Joint pain, abdomen pain, chest pain, mouth ulcers, swollen sinus and diarrhea. Usually I have to take a couple of days off work.
In my pre-op they found I had low haemoglobin but folate, b12 and iron were all OK. I would expect the fatigue to be all the time if caused by the anaemia.
The GP is repeating my bloods tomorrow. I'm wondering if there's something going on in addition to the endo and don't want the GP to just write all my symptoms off as endo if caused by something else.
Would love to hear of similar experiences or if anyone has any advice.
Thanks ☺️ xx
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Bluebells86
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Although some of your symptoms sound familiar for Endo/periods etc., it’s always worth considering other things so the dr doesn’t get fixated on Endo, they seem to do that. Definitely worth checking with GP when you speak to them.
Hi. I have all the same symptoms as you. Iv ended up going private and I'm now having a colonoscopy and an mri to check for inflammatory bowel disease because apparently those stmptoms can be caused by that. I was originally told possible endometriosis but now maybe this. I'm really hoping to get an answer as the flare ups are so awful aren't they. I get the worst pains in my legs especially my calf muscles.
I also experience the same around ovulation too, especially the sinus pain and upset tummy - I believe it’s the shift in hormones, I also have Endo on the ovaries and around the pouch of Douglas. I don’t think the diarrhoea etc is related to ibd - in my opinion. My husband has ulcerative colitis and his symptoms are very very different.
Definitely worth speaking to the doctor though to rule anything else out. I find that drinking min 3 litres of water helps. Also keeping active and eating healthy. The water is definitely a game changer though, I’ve done 3 round of ivf and the nurses swear by water to combat the awful side effects of the hormones. You could also try acupuncture for some of the symptoms you’re experiencing.
Thank you, this is really helpful but sorry to hear you have similar.Since posting I've been to the GP and she's done a load of blood tests, just waiting for the results. If they come back clear I think I'll be more reassured that it's all linked to endo. It's just crazy that it can cause such random symptoms!
Since my diagnosis no one has sat me down and discussed my symptoms with me or helped me figure out how to manage them. I've done my own research but I sometimes feel a bit lost.
I'm having accupuncture to help with the fertility so will discuss this with her. I've tried gluten free but given up because it hasn't helped! I'm not having any caffeine or alcohol and eating very healthy, although during a flare-up that's hard!
I think I'll try and build in a bit more exercise and will definitely try the water!!
Thanks for the advice and good luck on your journey xx
I also just had full bloods done and everything came back normal ☹️ it’s so frustrating isn’t it. I hope you get some sort of answers.
With the sinus pain, I am wondering if it’s allergy related - I know around ovulation that oestrogen can increase histamin. I’ll link an article I just found which explains it a little. I do think it’s all ultimately linked to the endo and our immune response to things. But it’s really hard to manage, I totally get it. Most people feel energised and their best self around ovulation, not me, I’m miserable and feel like shit 🤣 definitely not in a ‘baby making’ mood.
I think gluten only really helps if you have an intolerance, I still eat gluten (only sourdough though) and lots with endo do. Same with dairy.
Thank you. I really hope the acupuncture eases things and you are on a super short road to pregnancy ♥️💫 xxxx
Aah thank you, I'll give it a read 😊 I got diagnosed with rhinitis 17 years ago, long before I was aware of endo but could well be linked, especially as that flares up at ovulation time too.
There's so much info out there it can get overwhelming but it really does help to know that I'm not alone, so thank you for that 😊 xxx
So interesting - I am sure allergies are linked and another reason why immune protocols with ivf are good for those with endo.
I attached another article, dust/pollen etc can also influence things. It really could be linked.
I’ve been working with a doctor for ages trying to get to the bottom of my symptoms as I often get awful sinus pain with ‘sicky’ migraines, plus like you upset tummy around ovulation. I also have heart palpitations and disturbed sleep. It’s all very interesting. Good luck xxxx
Omg, mind is blown!!! I have all but 3 of those histamine symptoms! I'm not sure that a GP would have ever made that link but at least it arms me with info for my next appt.
I think the more info we have the better!! Sometimes we just have to do the research ourselves sadly. My symptoms got a lot worse when I increased fermented and healthy foods into my diet thinking it would help fertility 🤣 like kefir, kombucha, avocado, spinach - like literally over consumption of high histamine foods - which is why I started to investigate things more.
I really hope you get to the bottom of things. Keep me posted ♥️
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