Feel like I'm going crazy : Hi ladies... - Endometriosis UK

Endometriosis UK
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Feel like I'm going crazy

Cb1984
Cb1984

Hi ladies tonight I have got to breaking point and reading all ur post I know I'm not.

I'm waiting to have a laparoscopy to check to see if I have endometriosis iv been told theres nothing wrong from so many people that u start to think its all in your head but it's not I have pain all the time to the point sometimes that iv been in a and e to them say theres nothing wrong to go back to my doctor I have bowel problems some I go to much then I go the other way pain during sex and after. Iv had the pill which didmt agree also the marina coil which was horrendous to be fitted and then had to come out due to the pain it gave me all the time I feel sick and also this week iv had stabbing pains in my tummy rumbling and extream bloating I look like I'm having twins and not to mention mood swing horrid period sorry to go on just need to know I'm not going mad xx

34 Replies
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Hi your not alone or going mad for years I had the same experience of people telling me it’s nothing just get on with it sort of attitude, I finally found the right gynaecologist and he did the lap 3rd time lucky and he found endometriosis and adeno, hope you get your lap soon 🤞 xx

Cb1984
Cb1984 in reply to Lou93

Thank you so much I read people systoms and I'm yes that's what I feel but for a short second you always think the worse as it's not normal if had internal scans the normal ones that have shown nothing but this carmt all be normal e en told it's ibs which might be but dosnt explain the rest of it thanku never spoke to anyone who has been diagnosed before so feel a relief to get it out xx

Lou93
Lou93 in reply to Cb1984

No problem at all I find it helpful on this site to speak to ladies who have an idea of what I go through and relate to, I’ve had plenty of normal ultrasound scans had another today and they said it’s normal but it doesn’t always show on scans, I’ve had clear MRI scans also in the past, had surgery 5 years ago under general gynaecology and they said nothings wrong and unfortunately we have to fight to get a diagnosis and not feel like we’re going mad so I know how you feel.

I would chase the hospital about your lap, and yes my dr who I see now who diagnosed me said don’t let anyone tell you that you have ibs as you don’t, I also have issues with my bowel etc and my last lap was a year ago but now my pains have returned, I hope you get your lap soon to see what’s going on and ask for someone who specialises in endometriosis xxx

Cb1984
Cb1984 in reply to Lou93

I will chase it up and yes I was at burton but they didnt listen to me so went to good hope they have finally said yes to a lap after being referred twice to them hope u get on ok as well thankyou again x

Lou93
Lou93 in reply to Cb1984

You too xx

You aren’t crazy that’s for sure. If you saw my post earlier, the pain nurse at A&E is one of the only medical professionals to have said it’s not in my head. Even the GP’s after diagnosis have never said anything.

The gynaecologist understands, at least comes across that way.

The only way for diagnosis is a lap unfortunately.

I don’t know what you’ve been given for pain but go back to GP and discuss further, take someone along if you can. Possibly something to calm hormones down, maybe blood test to check levels (GP’s very reluctant to do this though)

Good luck

Cb1984
Cb1984 in reply to Moon_maiden

They have given me some pain meds for when I'm on my period menothesic acid or however its spelt lol but nothing but the usual when not even now I'm getting tense pains higher in tummy then get loads of gas this is the new thing this week it comes along with pain in my sides and round my back I dont have much faith in the specialist I have atm I think he only agreed to keep me quite during my lockdown phone consultation. I agree my hormones are all over the place and it's even affected me further where iv had medication to help with my anxiety .

Moon_maiden
Moon_maiden in reply to Cb1984

Is the consultant a specialist in Endometriosis? If not, maybe ask GP for a second opinion. I think lockdown has been exasperating for some hospital staff, but it hasn’t come across well for us.

Do you think you have anxiety or it’s hormones and frustration?

I had a pill in December that really helped settle hormones down, it was a progesterone one. I think Zoladex has had this effect as well.

You know how you feel, if it’s GP telling you it’s anxiety, go back if you don’t think the same way.

The pain nurse yesterday said sometimes they’d prescribe antidepressants for pain, which I have read about, but with sleep apnoea they don’t.

Ahh you’ve really been through the wars ❤️

For YEARS I was told it was all in my head and then when I eventually got diagnosed with endo I thought I would feel better to know I wasn’t imagining it, but I ended up going into a very deep depression.

You are not mad, and you are not alone!

You will 100% get through this and I’m so sorry you’re having such a rough time.

Don’t let the bastards grind you down, there is light at the end of the tunnel xxxx

You are so lovely last night was the first night in so long I went to sleep when I was meant to not lay counting sheep as i couldn't sleep from stress be able to see and talk to u all helps to know that yes u are in pain but so is someone else u are not alone and that we can get through together thanku pinkyandthebrain xxxx

❤️

I’m just so sorry you’re enduring all this. I too have bowel problems, pain in my side and back. It can be worse at the end of my period when the hormones are beginning to rise again. I too was diagnosed with IBS. It was all as a result of endo on my bowel wall. So not only did it cause Ibs which causes pain within itself, but obviously the endo itself causes pain. Your problem sounds so similar. I have the mirena coil which has helped immensely. But there are other hormone methods that you can have as I’m sure you’re aware. So hope they sort you soon. It’s crap being a women sometimes isn’t it!!🤣🤦🏼‍♀️Xx

Cb1984
Cb1984 in reply to RunningMum11

Thank so glad to hear this yes they said I have ibs I get bad pain in my right side going round to my back alot of the time this week it's been a tense and release pain in my tummy bloating the feeling full but sick with it and then yesterday I ballooned so sorry your going through this too.

The trouble I have is I'm not good on the hormone based related treatment my body dosemt cope well with it for some reason so I'm struggling to find something to help me atm but will get there think it's going to be a battle but hearing other people my journey so far is small been fighting with doctors for 3 years but it's getting progressively worse xxx

RunningMum11
RunningMum11 in reply to Cb1984

A positive may be that, when you are having your laparoscopy and they see your endo, they may treat what they can whilst they are there. This will relieve some of your symptoms making it all more bearable. I do feel for you. Just know you’re not on your own😊xx

Cb1984
Cb1984 in reply to RunningMum11

Thankyou so much I would say u dont know what it means to mean but u do 10 fold xx

Great advice and support from people so far, so I will just add that...you aren't going crazy. Far from it, you are empowered enough to be seeking out help and support from others. You are taking great care of yourself as best you can, trying to get answers. Waiting is so hard I know, and this year is just so crazy.

If you can dig inside a little while you wait, try a meditations app, some mindfulness and yoga, it will help. It will not remove this pain, it won't make symptoms disappear but it helps you cope and can bring relief. Even if/when you have a diagnose you will learn they are a huge support, so I'd get started now and try benefit from them during your wait.

Keep a little journal too if you aren't already, jot down pain levels each day, some food diary info is good too but also use it to track how often you feel unwell. It's a good process to help you feel relief but also it's an amazing tool to take out when you do speak to the docs/gynae next.

"Look...here's my last cycle, here's a pattern I've noticed with this, or that, here's what does/doesn't work so far"

Feel well, be kind to yourself, and keep up the support seeking x

Cb1984
Cb1984 in reply to edonn

Thanku so much yes I really need to do a journal brought one but nothing added yet always forget and do something else xxx

GUILTY of this too.

This might sound over the top, but I've set a little area of my spare room almost like a 'treatment' space. I make sure to go there in morning and evening. It has my homeopathic stuff I take, my probiotics, my yoga mat for yoga and my pelvic physio, my journal and yes....a whiteboard with a month view.

I am the biggest procrastinator but set myself up with this approach a few months back and consider it like a prescription I have to stick to. I tick off when I've done things in week...or not. Then if I haven't had a good few days I can see and say "ah, ok, so 3 days where I haven't done any pelvic physio or drank few litres of water, no wonder I am not sleeping well with pain".

Worth a try!

Cb1984
Cb1984 in reply to edonn

I think its amazing focus and something I really need to start thankyou xx

Moon_maiden
Moon_maiden in reply to edonn

What homeopathic remedies are you taking?

edonn
edonn in reply to Moon_maiden

Hi, I use Bush Womens essence and have done for few years, particularly helpful in my view for any issues e women face with our cycle, endo or no endo. I also take a digestive licquesence to help bowel overall, I have bowel endo. I also take a B complex licquesence for overall nervous system etc.

I’m 46 and I first went to my gp at 23 with really painful periods. I was told it was normal and to get on with it. I had two children ( thankfully) and then just lived with really heavy painful periods. It wasn’t until the pain started happening a lot more frequently that I went back and asked for help. I went through all the IBS, different pills, coil, ablation etc and finally I have in January this year had an MRI which showed that I have endometriosis, adenomyosis , three cysts , blocked Fallopian tubes and bowel loops.

Genuinely if you feel you have it keep fighting because I wish I had. I’m now facing major surgery and surgical menopause and I wish I had been given different options earlier.

Cb1984
Cb1984 in reply to annieorrell

Omg I'm so sorry that your going through all this, I refuse to stop fight to let someone tell me that im ok when I know my body isn't right makes me so cross and sad I really hope everything goes well for you with ur op. X x x x

Thank you ! I hope you get the answers you need soon! Coronavirus doesn’t help any of us but things seem to be getting back to normal in the nhs xx

Cb1984
Cb1984 in reply to annieorrell

Thanku xxx

You are definitely NOT going mad. For years I was told” pain?? How can you be in pain when you have the Mirena coils and no periods?” After one Lap the horrible consultant shouted down the recovery ward so everyone could hear “ you haven’t got Endo, the pain is caused because you are constipated, it’s IBS”

Never let anybody tell you otherwise you know your own body you know the difference between stomach pain and endo pain.

Find good consultant and stick with them. Good luck 😄

Cb1984
Cb1984 in reply to Judd123

Thankyou so much carmt believe how you have been treated xxx

Judd123
Judd123 in reply to Cb1984

I was young and naive and now realise I should have listened to my body and told the consultant just what I thought about his diagnosis!! Do your own research ask questions and never take NO for an answer 😄

Cb1984
Cb1984 in reply to Judd123

Thankyou so much xx

You are not going mad I can assure you, I was made to feel like that by endometriosis consultant & GP, even after my hysterectomy after a few months got pain back 🤦‍♀️🤦‍♀️, & they’re we’re like - you shouldn’t be 🤷‍♀️, I started to question myself?? But it came at the same time as my painful 😖 episodes in my cycle, they then done another laparoscopy & I had areas of adhesions & my bowel was stuck to the wall of my stomach which should’ve been separated when they did the hysterectomy but didn’t!!.

Trust your instincts, I know have pain back again a few months after they removed all the adhesions - but I’m at a loss as to why & how with everything gynae removed & endo adhesions all removed - no ovaries... so why?? Will this ever stop?? 😡

So trust yourself - you know your body, good luck & hope you get some answers soon & relief from it all, I will say I tried having reflexology & reiki just before both of these painful episodes & it was amazing & helped so much - so worth a try.

Cb1984
Cb1984 in reply to Gingernut74

Thank you xxx

Hi

I was sent home with nothing by my GP over and over . It took me years to get the diagnosis . Maybe try to go private , if you can or go to o e of the Baltic countries for thorough, affordable tests.

It’s not in your head .

Hope you get it sorted soon x

Cb1984
Cb1984 in reply to Novouralsk78

Thanku xx

I'm so glad you said this- if feel like I'm going mad sometimes too! And while other people keep telling me, I'm not, and as kind, as they are to say it, it's so difficult to explain the disparity between feeling totally okay one day and like you're on death's door the next.

I'm also waiting on a diagnosis, it's no fun at all. I'm hoping this forum will help it to feel less lonely and help us support one another!

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