am I going crazy lol: Endometriosis?? I... - Endometriosis UK

Endometriosis UK

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am I going crazy lol

Littleone88 profile image
25 Replies

Endometriosis?? I feel like this is so much more than what it is. I suffer so bad with dizzyness and sickness and stomach cramps and constipation and then diarrhoea. I have hot flushes I’m constantly tired. Is this all endometriosis like they tell me. Or am I going thru something else as well. Been waiting to be seen since January for my review of my OP I had that’s made everything a lot worse. I stopped the pill for a few months which I admit did make it a lot worse but I’m back on it now about week 1 into it. And starting to feel a little better but still. Exhausted every single day. So fed up fellow endo fighters 😞

25 Replies
oceandaisies profile image
oceandaisies

So sorry that you’ve been having a difficult time with this. I can completely understand that feeling of ‘could this really be endo?!’ when all of these random symptoms pop up, it really can make you start to feel crazy. I’ve had a lot of digestive symptoms lately too which I never had connected to endo in the past, but from reading responses on here it seems very common. I don’t know if you’ve had any ruling out tests at the doctors for peace of mind, but it could be worth asking for stool/blood samples to be tested as I did find it reassuring when these came back OK for me whilst I wait to see the endo consultant. It seems endo can mimic so many other conditions. I really hope things will improve for you and that your appointment will be booked in soon and can help give you some answers x

Littleone88 profile image
Littleone88 in reply to oceandaisies

thank you, the drs say I maybe have IBS as well then send me away. Past few weeks have been awful. It use to be something that would happen a week before my period. But lately it just seems constant. That what made me worry it maybe something else, so frustrating being thrown pillar to post, and just being left in pain.

It definitely does nothing for our mental health does it that’s for sure. Hope your as well as can be. Xx

oceandaisies profile image
oceandaisies in reply to Littleone88

I can completely empathise with this, it’s been the same for me. My previously monthly symptoms also have become daily, and it’s very anxiety inducing for sure. I have also had IBS thrown at me many times, it feels like that’s just a diagnosis they like to slap on anything they don’t understand to be honest. I’ve started taking optibac probiotics daily which I do believe have helped somewhat with settling the digestive side of things in between periods, they are a little pricey though x

Littleone88 profile image
Littleone88 in reply to oceandaisies

I’m going to look at the pre-biotics for my tummy that used to help quite a lot, but yes like you said they’re very pricey! Yeah IBS is defo something they slap on easily enough because we don’t need no specific testing for it I presume, ♡

CPow17 profile image
CPow17

Urgh it sounds awful. Many of your symptoms overlap with mine: dizziness, fainting (repeatedly for short period eg 1 h) with intense pain, vomiting, diarrhoea, constipation, tiredness and lots and lots of pain. Certainly sounds like it could be endo! After mine was initially treated (laparoscopy) all symptoms improved dramatically.

Have you looked into the gluten and endo link? Sounds like you have many IBS symptoms which is really common with endo. There's a strong correlation between gluten intolerance and endo, maybe something to consider and it certainly wont magic away your symptoms but may make them much more manageable.

Good luck!

Littleone88 profile image
Littleone88 in reply to CPow17

it truly is a nightmare daily, trying to get kids to and from school is becoming more of a struggle when I’m nauseous and dizzy. It’s actually quite worrying. My periods have been so heavy lately I’m now anemic and on iron tablets. Feels never ending and like day by day I’m slowly but surely getting worse and worse and it terrifies me if I’m honest 😞 I had the surgery last year initially felt better. Then I came off the pill for a few months and that was it. Everything went downhill fast. Xx hope ur feeling well xx

Elloworm profile image
Elloworm in reply to Littleone88

Hey sorry you're suffering just a note to say I get dizzy and nauseous when I'm low on iron...have you have your levels checked recently?

Littleone88 profile image
Littleone88 in reply to Elloworm

yes I had them done a month ago and they was low just finished a month of prescribed iron tablets. Unsure whether I need more of a top up. Xx

Elloworm profile image
Elloworm in reply to Littleone88

I had to take them for three months then they did another test. I think you continue to take them until you test "normal" but if you suffering heavy bleeding every month then you should be given guidelines on how many to take IE. I take 200mg for a week during my period and test bloods annually.

Littleone88 profile image
Littleone88 in reply to Elloworm

I rang the Drs and spoke with Receptionist and was told as Iv finished the dose I can just take normal supplements from a store, baring in mind my Iron was 21 .. the normal range on mine says between 23 and 300.so I’m guessing the dr figured that would be enough. Xx

Hello there. If I was to bet, I'd say it's all Endo! I've been having weird symptoms too lately. Bloating, feeling sick, fatigue, abnormal bowels but I've had blood tests and all came back fine except from low iron which wasn't a surprise given the amount of blood I lose every month!

I too, over the last few days have been wondering if this is STILL endo or am I suffering from something new.. Either ways I bet endo has something to do with it! I was perfectly healthy before this ghastly condition took over my body and now I just feel so UNHEALTHY no matter what I do or what I eat. So I'd say it's all part of having Endo. However I'd say get checked out just incase it's something else. I'd be VERY surprised if it's not endo related I'll tell you that!

Really wishing you some peace and pain free days ahead. This condition really takes its toll. I've been suffering for 8 years and I'm at my wit's end. Really really fed up! But onwards and upwards I guess 😶

Wish you all the best! Xx

Littleone88 profile image
Littleone88 in reply to

thanks for your reply. Yes I had low iron on my last bloods which was last month just finished my ‘top up’ as they called it, but still feeling fatigued and rubbish. Maybe I’ll go to Holland and Barrett today and get myself some good iron tablets and stay ontop of it myself.

I never in my life when I was told I had endo would I have imagined it to cause havoc so badly on my body. I feel a different person to who I was only a few years ago. I’m with you on the Really really fed up part. We can only keep fighting this, ♡ sending love and positive Vibes 💫

in reply to Littleone88

Thank you. 😊

Yes this condition is relentless and I understand exactly what you mean about feeling like a different person. They didn't mention to me in hospital that endometriosis could be one of the complications of having a C-Section. That would have been the decent thing to do. When I questioned them later on the answer was " Well it's a rare complication"! Well it isn't is it? It seems to be more common than they're willing to admit.

.As for iron levels the tablets are making me sick so I'm taking Blackstrap Molasses which I bought from Holland and Barrett and although it's slower, I'm already seeing an improvement in my iron levels without the ghastly side effects of iron tablets.

Like you said, we can only keep fighting this thing. Taking each day as it comes

Hugs xx

Littleone88 profile image
Littleone88 in reply to

yes I had horrible side effects with iron tablets. Not to mention the black stools hideous lol sorry TMI. I’ll look into slow releasing ones, I order magnesium supplements from Holland and Barrett. Also, I find them good for muscle aches and pains. It’s a never ending list of things isn’t it 😞 xxx

in reply to Littleone88

Yes. Never ending 😫 lol. God help us....

Jgp1 profile image
Jgp1

So sorry you are suffering eventually I did see a dietician (through a GP referral) change of drastic diet changes did help with some symptoms (and surgery).But recently I have been seeing a private nutritionist who has improved my bowel issues so much and I have been able to introduce some foods back into my diet slowly ( not sure if GP can refer).100% think it is all Endo relates re diet and it makes me so sad still after all these years still hearing IBS to blame!!!!

Think gluten for me did cause the bloating,constipation,headaches etc so was the first one to eliminate.

X

Littleone88 profile image
Littleone88 in reply to Jgp1

okay thank you that’s helpful info. I will look into seeing a nutritionist maybe gp can refer or even maybe Gyno can if it benefits endo. I struggle with food as im a fussy veggie, I love dairy and breads/pasta, and sometimes I’m good with Veg/fruit lol, with being nauseous, I’m struggling to find anything to eat at the moment it’s tourure. Xx

Jgp1 profile image
Jgp1

GP can prescribe anti sickness/nausea tabs aswell (didn't realise for many years) obviously check re other meds/side effects etc but definitely work.Peppermint/ginger products/foods help a little.Small meals&often etc,soups, smoothies or build up drinks(if you can tolerate) prevent weight loss.xx

Littleone88 profile image
Littleone88 in reply to Jgp1

Yes, I have anti-sickness tablets from Doctors . I only realised a few weeks ago as well. They’re definitely been a lifesaver the last few days! I’m trying little and often it’s just trying to remember this endo has definitely given me a hate for food it’s become a battle I struggle daily with. I use to love food. Just seems to cause me pain so maybe smoothie drinks with proteins in are a good pick as u say to prevent more weight loss. Thank you ♡ xxx

Jgp1 profile image
Jgp1

I eventually paid privately for a nutritionist who I found myself she has been amazing. Happy to share information (not sure we can on here).Obviously we shouldn't have to pay but sometimes it's the only way forward.x

Rewe profile image
Rewe

Hi there, really sorry to hear about all your symptoms and no wonder you're overwhelmed. Since my diagnosis I've been doing a bit of research into nutrition and endo, as so many bodily systems are affected. That's helped me to feel a bit more in control of managing it. There are some good accounts on Instagram with detailed info about vitamins and minerals, probiotics/gut health and anti-inflammatory foods that can help all kinds of symptoms. I'm no expert and it can be hard to work out what is legitimate advice but overall I have found using my own common sense and reading/listening to nutrition advice so helpful. All the best with your journey and I hope you find some easing of your symptoms soon x

TogetherWeAreStrong profile image
TogetherWeAreStrongModerator

💚Thank you for your honest contribution, it's really helped me today x

Great advice and information
poppy75 profile image
poppy75

hey there. From my experience at least what you’ve described all sounds like Endo. It’s rather more than pelvic pain and heavy periods innit? I tell people along with grinding, drag you to the floor contractions, knifing pain, ‘electric’ pain (prob nerve pain) I also feel like I’m paralytically drunk and have proper flu. I burn up, dizziness, vomiting, affects my vision and spatial awareness, pass out when it’s at its worst. It can feel like it’s taken over your whole body. Always good to get a full blood count done though just in case. Re iron - I was severely anaemic this time last year. The prescription iron pills made me ill. Ended up eating iron rich food with every meal and taking these chewable high strength iron supplements that are way gentler on the stomach. I’m now just slightly anaemic and demanding another test in 3 months (they’ve been testing every 3 months but now saying I’m in the safe zone). It’s called Nature’s Plus Chewable Iron.

Littleone88 profile image
Littleone88 in reply to poppy75

lovely thank you will look into them, I did get some more gentle iron tablets from Holland and barrett.

Everything u said down to a tea feel them all, it’s so so much to handle, just seems to be a new symptom every week to add to it. I’m 34, and ready to part with it all, try a hysterectomy and prey it works. Feel it’s the only choice I’m left with, to stop the pains once and for all. Sending you love and healthy vibes 💫

poppy75 profile image
poppy75

I’m 47 now, 17 when it started. I honestly thought I was dying as it was so all encompassing on top of horrific pain. Do lots of research before hysterectomy- if you have adenomyosis (which I also have) it can help that but with Endo it depends where you have it. Wouldn’t want you to go through that and then still suffer with Endo. Find a bsge Endo specialist for mri and laparoscopy so you definitely know whether hysterectomy could help. Take care xx

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