Self-gaslighting

[Bramble_B]

Does anyone else drive themselves crazy in the good times? Sometimes I'll wake up with no pain and think, "maybe it's all in my head." Of course the trusty pain resurfaces but I'm struggling to shut down the cycle.

[Mindfullness4791]

Yes, all the time. I still don't have s firm diagnosis, despite having had a hysterectomy for Adeno and fibroids last year. Have you been diagnosed?

[Bramble_B in reply to Mindfullness4791]

Glad to know I'm not the only one! My endo specialist is certain it's what I have, exploratory lap in a couple months. But with NHS doctors not believing me for so long, I keep doubting my sanity.

[Mindfullness4791 in reply to Bramble_B]

I'm so sorry 😢 I know exactly how you feel x

[Bramble_B in reply to Mindfullness4791]

How are you feeling post-hysterectomy?

[Mindfullness4791 in reply to Bramble_B]

Honestly? Dreadful 😢 I've left my job and am a former shadow of myself. The pains are as bad as they were post surgery. The only positive with the fibroid gone, I don't have the crushing pressure. I'm waiting to see a bsge specialist. I don't think I ever realised how bad surgical menopause could be.

[Bramble_B in reply to Mindfullness4791]

I am so sorry to hear that. My heart absolutely breaks for you. And all that for a surgery that was meant to make a significant improvement I hope there's something in life pouring some happiness into your bucket? The universe owes you. Big time.

[Mindfullness4791 in reply to Bramble_B]

Thank you so much for your lovely message. It really means a lot. Its not where I thought I would be at 50 🥲I do yoga twice a week and I do think it helps. I really hope you get some answers too xx

[Bakewey in reply to Mindfullness4791]

How long ago was your surgery? My radical hysterectomy was in September and I’m only just celebrating 2 weeks of pain free living. It had been a slow process but I’m truly grateful to be out the other side.

If it’s more than 6 months, I’d suggest reaching out to the endo nurses and seeing what they can suggest.

Wishing you well🍀

[Sandib007 in reply to Mindfullness4791]

Exactly the same here 😔 they don’t prepare you for afterwards at all. I did as much research as I could at the time to prepare but that’s difficult when it sets off health anxiety, and they certainly don’t help with information. Take care of yourself 🥰

[Regenallotment]

yes! I’ve been saying to friends and family that some days I feel like a fraud. In 24 hours I can be feeling quite hopeless and flip to pain free. It’s very odd and I totally lose perspective and wonder if I’ve made it all up. I’ve had 2 lighter periods and can’t understand it after decades of flooding and clots. But it’s happened before so it’ll change again I’m sure. You definitely aren’t alone in this feeling.

[Bramble_B in reply to Regenallotment]

Thank you so much for sharing this, we are clearly not alone! There are some days when I'm grateful for the symptoms, because they affirm it's not all been a figment of my imagination. We've just gotta keep pushing for diagnosis I suppose. What we're experiencing IS real.

[JOSANDY40]

Hi, Yes it's a bit brain verses body! I find myself still with the good days, get excited then out of the blue a few hours or days of pain. Certainly it was worse when I was younger, 35 to 45 it was pain almost all the time. Sometimes one painkiller works better than another, that's always been odd I've thought. Generally I've always looked well then suddenly I look very ill yet felt ill hrs or days before. Unfortunately it's not a illnesses that others can generally see so the sympathy doesn't come. People think your making a fuss or 'she's ill again'. As times gone on friends don't want to know. People stop involving themselves with you cos your not fun! You either lie saying yes your well when your dosed up with painkillers or perhaps you cancel too often a evening out.

Well its normal to feel and think the way we are.

I still get in a panic when I let people down equally I get very stressed when I fear I have tests or yet again surgery like last year twice.

The important thing is to stay strong, try to be level headed, not get depressed, easy to say as I have.

You feel your not alone.

My best x

[Lunaloo123]

All the time! And it’s so hard to shake. But the pain comes back and is a reminder that it most definitely is not in our head!

This thing is bloody awful and it’s hard enough to get others to understand it, don’t doubt yourself too!

Stay strong and enjoy the days when you don’t have as much pain ❤️

[Cold_swimmer]

yes, in fact the self gas lighting is worse than any medical gaslighting I’ve ever experienced. I think my delay in getting care has been partly my own gas lighting as I’ve been very lucky and not felt I’ve had to fight, more just wait with long waiting lists. I have delayed things because of the good days. My husband has been my greatest advocate as he sees the switch from fine to agony frequently and reminds me that it’s not normal and that it is significant.

I only had very minor endo identified and removed on laparoscopy and I have a few small fibroids so I feel like my bleeding most days and frequent cramp attacks are disproportionate which contributes to the self-gaslighting. I’m now on the waiting list for hysterectomy as all other treatment has failed but all of the stories I read are of people with huge fibroids and severe endometriosis.

So, I see you, and feel it too, the self-gaslighting is awful. Sending love.

[RedCat24]

All the time. Iv been medical gaslight all thru and still am by specialist who keeps shutting some symptoms down saying its not connected, I think it is. I had to go private for my diagnosis and wen I saw specialist she spoke to me like I hadn't been diagnosed and told me it couldn't be endo and could be something else in a different department, iv had bowels all cleared and endo found during private lap. I'm in pain everyday don't work as I lost my job due to pain and always look pale. 2 and half years now. I find it hard to shake and sit and cry alot

[Kelpiestryder in reply to RedCat24]

Your reply resonated with me (as they all did)! But I constantly look in the mirror and don’t recognise myself I look either pale (where have all my freckles gone?!), yellow or red/blotchy! I’ve actually had a cancer nurse (one of the things I’ve ruled out) sit down with me in the waiting room and ask if I felt ok or if I was going to pass out because I looked so tired and pale, she offered me a hot drink too because she was genuinely worried I was going to keel over on her..funnily enough this was on a ‘good’ day where I didn’t think I looked so ghostly (on a separate occasion I’ve had a cancer patient remark that I looked exhausted too) point is even a cancer nurse (and patient) who didn’t know me thought I looked ill so why doesn’t my doctor?

I spend my good days feeling guilty and that it must all be ‘in my head’ or ‘not that bad’ and my personal favourite ‘there’s nothing wrong with me’ and then I cry and get upset over how much time I’ve wasted trying to find answers and how pathetic I must be…

Then I spend my bad days crying, depressed and so hopeless because what in the actual fuck is my body doing and why is no one doing anything about it?

You can’t win! I too am unable to work and it is so infuriating! Hurts even more when people ask me what I do ‘for a living’ and I have to explain I’m unable to work due to sickness and they just look at me like I’m some waste of existence or worse don’t believe that I’m sick because obviously they only see me on good days!!

Hugs from my reproductive organs to yours 💚🖤

[RedCat24 in reply to Kelpiestryder]

I feel you. I actually do pass out too. It's happened twice in public whilst out with my partner, very nice members of the public helped him once get me out of view by carrying me out of sight with him an adult on each arm and leg 😞. I always say why me. Iv been with my partner 18years and I'm so grateful he's been my everything, iv lost friends because I don't have strength to go out. Some people just don't understand. Sending you love 💛

[Fipp]

Truly my heart breaks for us all. I absolutely gas light myself and the lack of timely care plan and no information given to help guide me , when i do get a conversation with consultant , just seems to go round in circles and compounds me more into disbeliveing myself. I am at menopause now and cant decide if i am bad enough to have the big hysrectomy. Terrified that it will cause more problems for me ( even though they say i defo have adenomyosis) As for my 1 lap a year and a half ago ( no endo found and no follow up ever) . Yet brief conversation with a consultatnt ive never met before- didnt do my laps says most like i have endo too just not found! my sore achy bladder and frequency /bloating/exhaustion despite hrt seems to be bat and balled between urology with both saying go to them! jeez! Thank you for sharing as resonated greatly bwith how i feel too. big squeezes ton yee all x

[RedCat24 in reply to Fipp]

Can I ask what your bladder symptoms are. I'm struggling to get a urology referral, not under a consultant but a endo specialist nurse who says its not endo related and to ask GP to send to urology 😞 x

[Fipp in reply to RedCat24]

Hi Redcat . My symptoms are bladder ache… a feeling of not having emptied my bladder fully even when I’ve just been! Frequent trips to the loo( especially in the mornings or before bed and more so if a meal bloats me out ( feeling more pressure on bladder and no patterns re food after many years or diets trying to figure) . So if I have an ibs reaction ( or I am feeling swollen in my stomach - sometimes having avoided food for fear or making worse!)…my bladder feels irritated. I mostly feel I have to squeeze to release and can feel relieved sometimes if food intake has been going well. A feeling like I have an infection, soreness on my left side or pressure pushing on my bladder. Sometimes I can go up to 15-20 times a day and other days less but often with a holding on feeling and no result ( or a little) when I try… so often a constant feeling of needing the loo . Just always being aware of achiness in that area of my tummy.

So I asked my gp for a urologist referral a while back- eventually they agreed to then urology reject saying it sounded like gynae would be more appropriate. I suggested I now keep a bladder diary , which I haven’t done yet( as I find it exhausting always logging my symptoms for near a decade with no relief as yet other than HRT helping a little more with night sweats/ mood spikes and joint pain). Again as I write my doubts surface as to whether I’m making a big deal of it all as I maybe up once or twice in the night but I am not leaking and sometimes not up in night but bursting when I wake or ignoring semi urges when going to bed( as surely not I’ve just been!) I am trying not to drink after 10 pm to help ease this. Sometimes there is a sudden urgency and I guess it also affects how much I want to drink and when as a drink seems to go straight through me . And also some days / weeks I notice all symptoms less so I think because it’s intermittent ( weekly basis I think!) urology don’t class as their department and now refer back to gynae. Really hope that helps ( sorry if sounds muddled) and be interested to hear your symptoms also or if you can relate? Big squeeze 🤗

[RedCat24 in reply to Fipp]

My symptoms are constant toilet trips whether its a full bladder or not. I have to go at least 3 times during the night the full bladder pain wakes me up, I also have like urethra tip pain urinating which is now becoming more just in general pain, it's like a shock type pain sometimes, uti symptoms and never shows one. I have mentioned this to my endo nurse who said its unlikely connected and to get GP to do a urology referral (don't know why she couldn't do it but hey who knows) love sending back to you 🥰💕

[thebird1 in reply to Fipp]

Hi, I have bladder symptoms just like yours. The coil has helped a lot with this. They suggested referral to urology if coil didn't work. Sometimes, during a flare up I still have moderate bladder symptoms. It used to be awful when ovulating and menstruating. I sometimes feel as though I'm leaking urine even when I know I'm not!

Find your triggers.....I've cut out caffeine, alcohol, orange juice and orange squash ( citrus generally). I think that's helped. Also constipation makes bladder symptoms worse. They are very real symptoms. I read the other day that bladder symptoms are often due to endo on utero sacral ligaments.

Before being in medical menopause I tried estrogen gel ( low dose) which flared symptoms up to the point that I went to see GP and urgent care X3 in one week thinking I'd got a UTI. I had four lots of antibiotics in the autumn for a UTI. I had one positive test and X3 negative but had awful pain.

I did some pelvic floor release exercises on U tube and instantly had some relief. I no longer felt in spasm. It may not be the answer but might help offer some relief x

[Blackdog22]

my friend had to point out to me that I was gaslighting myself. Really not helpful if the longed for doc appt lands on a good day as I then downplay and almost can’t remember how bad a bad day can be. It’s definitely delayed me asking for help, it took daily pain for me to consider “bothering” a gp.

I’m trying to keep a diary through the bearable app at the moment. I think tracking what meds I take and when is helping me see the reality

[Mindfullness4791]

I was thinking about this thread, as I'm in another flare. If this is all in my head, then I need locking up!

[Bramble_B in reply to Mindfullness4791]

Right?! If it's in our heads, we're very powerful witches 😅

[Mindfullness4791 in reply to Bramble_B]

😀😀

[Em0000]

Yes, constantly even after two surgeries I still think, wait, what if I've made it all up!

I think because lots of us were told we were making it up or making a big deal out of it.