Is it all in my head like the doctor said?Am I chasing my tail? Or just completely insane?

[Kelpiestryder]

A bit of a long rant from utter frustration and feeling entirely lost/given up hope of finding out what’s wrong….

I’ve just had my pelvic and tv ultrasound and told I am completely healthy, perfect in fact.

Which yes is lovely but I sat in my car after the appointment in tears of frustration, despair and hopelessness. How can I be perfectly healthy and have so many symptoms/pain? Is it all in my head? Am I insane?

I’ve always had what I suspected where bad periods, id need to change my tampon between lessons at school, felt completely exhausted not just during but before and after and was on pain killers that really didn’t seem to work but I was told it was all normal, here have some birth control pills and off you go.

Between 13-28 I was on numerous contraceptives, my last was the mirena coil, because pills simply weren’t enough, it did quell my pain somewhat and stopped my periods but at 28 I thought shit, what am doing to my body and had it taken out! (Back to nature and all that)

Since then things have gotten progressively worse, at first I figured it was my body/hormones stabilising after a lifetime of synthetic hormones and thought nothing of it. But 3 years ago, I decided something wasnt quite right especially after I was deemed ‘unfit to work’ as a postie because I was exhausted and constantly in pain/needing to take prolonged sick days. At first I thought I might be going into perimenopause at 31 due to all the symptoms, my doctor told me that was near impossible but sent me for pelvic ultrasound to shut me up, and of course it came back normal, perfectly healthy so I let it go and assumed what I was going through was normal and accepted my new diagnosis of chronic fatigue syndrome.

Well the past 3 years have been shit, the past year horrific and I’ve been scurrying around begging my new doctor (who thankfully is a lot more sympathetic) to find the cause as to why I am in so much pain and exhausted ALL THE TIME!

My periods were every 18 days, lasted a week, I would get about 3 days in the midst of my cycle of no symptoms before they all started up again. It then extended to 24 days with 5 days bleed and now it’s changed again to 28 days with 3 days bleeding and I’m passing almost golfball size clots…hence why the doctor send me for ultrasound to look for cysts, fibroids etc etc but NOTHING.

I have constant pelvic pain, almost like periods cramps but mostly just a deep constant ache. Oh and sometime pain during or after sex..which is no fun.

Chronic lower back pain

When I do have my period my cramps literally drop me to the floor, I have to sit down or crawl. Someone saw me once and said I looked like was really sick or dying and wanted to call me an ambulance..but I was just completely drained, it was day 2 of my period.

I get hives/itchy skin, headache, hot flushes, dizziness, blurry vision, nausea. Insane mood swings and emotional upheaval where sometimes I am simultaneously crying and laughing not knowing which one I’m feeling!

I have painful bowel movements, which radiates down my legs, mostly constipated before period and then diarrhoea afterwards. Get the random butt electric shot pains too. Hurts when I wee sometimes or have a full bladder, multiple utis that come and go for a day or so but nothing serious enough to warrant antibiotics!

I have pain like many describe as if one of my ovaries have burst or an organ has ruptured. Stabbing like pains that come out of nowhere, stop me in my tracks and this isn’t all during my period but all the time and randomly!

The bloating. Oh the fucking bloating after I eat anything. No allergies or intolerance or ibs ever until the past couple years after having the coil out. Now it’s bloating after every meal and cramping. I am 2 weeks post period and this seems to be the sweet spot where I get a couple days where the bloat is minimumal but I know full well it’s gonna come round soon and I’ll look full term pregnant all the time and struggle to pass gas!

Saw a naturopath, for a while who told me I have the worst case of sibo she’s ever encountered and she has no idea how to rid me off it so I’ve stopped seeing her after months of trying all sorts of bizarre supplements, diets, regimes etc with no results or change.

And I’m exhausted and look ill for 3 or so weeks, again couple days respite in the middle of my cycle and then bam back to it. So many people have told me I look unwell, have been worried I might pass out on them etc even my partner says I look like shit (in the nicest caring way possible). To which I do look like shit, I’m either pale as a ghost or red/flushed and rashy depending on where I am in my cycle! I barely recognise my face anymore!

So many times my partner has wanted to take me to the hospital over the past 6months because he can’t believe how much I am hurting, curled up in a ball crying out, but I’ve not let him, because the one time we did go I was told I was wasting precious doctors time as there was nothing wrong with me. I constantly have a hot water bottle on me.

I’d never thought much of endometriosis, knew of it, but didn’t think i would have it, however reading a lot of posts on here I keep going, ah yes, that’s me, I have that too, same here which got me thinking that maybe that is what I’m going through and seeing as things have got progressively worse the past year (and particularly couple years since coming of birth control) especially around my period as I’ve been paying more attention to it, I really thought that something would come up on the ultrasound…even though I know it doesn’t always show up. But it didn’t.

So I’m now here questioning my reality, wondering how truely insane I am, thinking maybe I just have a really crap pain threshold despite all my life thinking it was pretty high. Maybe it is all in my head? Maybe I’m really weak? Maybe I should just sit down and re evaluate wether everybody just feels like this and that life is just really hard, painful, miserable and exhausting?

I literally have lost the will to fight anymore. Maybe there is nothing physically wrong with me and I need to just pull my socks up and put some big girl pants on and get on with things instead.

[Tangoandmax]

Firstly, YOU ARE NOT INSANE!

It’s like finding a needle in a haystack getting a endometriosis diagnosis, it’s appalling. It took me eight years. I had scan after scan after scan which all said I was perfectly normal. The gaslighting is absolutely real - and atrocious. I had extensive endo, and organs stuck together by the time I found a consultant who listened to me.

A standard sonographer is not trained enough to locate/spot endometriosis, unless you have chocolate cysts caused by endo. Unless you do have this very obvious (easily visible) sign, they are more than likely missing it. Do you know if the person scanning was a specialist or at least someone with a special interest? If it wasn’t either one of those, I’d ask for a second opinion/scan with someone experienced.

Whatever you do please do not lose hope. They will continue to fob you off as long as you allow it. You’ve got to advocate for yourself because no-one else is going to. And when it boils down to it, they’re paid to look after people, to investigate what’s wrong - find the problem and fix it. A clear scan does not mean nothing is wrong, it means they haven’t established a cause and further investigation is required - don’t let them forget that!

Best advice I can give you is record everything. Bleeding, symptoms.. everything. They take people more seriously when they can physically see how much symptoms are impacting your life. Xx

[Kelpiestryder in reply to Tangoandmax]

Thanks for reading and taking the time to reply!

I feel like I’ve been gas lit my entire life, telling me my symptoms/pain is all down to depression/anxiety/mental disorders but I’m literally the happiest I’ve ever been with my life just physically my body is screaming at me!

The sonograoher was honestly lovely, I don’t think she had a special interest/training in endo but she did know all about it and at the end said I’m really happy to tell you nothing is wrong from what I can see but I am really sorry I’ve not found endo and encouraged me to go back to my doctor and reiterate that just because she couldn’t find anything doesn’t mean it’s not there somewhere. I mentioned I’d thought about going private and she thought that would be a good idea if I can afford it!

I am just so tired of advocating for myself. Luckily my partner is really supportive and reassured me the pain he sees me in is real and it’s not in my head, but it’s exhausting going the gp for endless tests and then all coming back ‘normal’!

I do keep a symptoms journal, I was referred to an emergency gastro July last year, have been pestering them and clawed my way to get an app for end of Feb... Apparently the consultant doesn’t deem me an emergency despite my doctors support and I literally cannot wait to slap 6months of food journals and pain symptoms on his desk and say go on try and bullshit me and diagnose me with ibs I dare you because here’s 8months of gluten free, dairy free, sugar free and low fod map dieting with re-introductions of supposed ‘trigger’ foods documentation with absolutely no change in symptoms! At least then maybe someone will send me for an mri bowel and rule out the scariest of causes!

Again thank you for your reply it’s really helpful being encouraged to not loose hope and once again be reminded by actual endo warriors that just because a scan came back normal does not mean it’s not there!

🙏💚🖤

[stephkp]

Hi, I agree with what had been said and I’ve included the NICE guidelines for diagnosing endo for you to go back to the doctors with. Laparoscopy is the standard for diagnostics and don’t be afraid to advocate for yourself.

From my own experience, I had been diagnosed with stage 4 endo then had a baby and a return and worsening of symptoms 6 weeks post delivery. A scan said there was nothing wrong with me, and as you’ve experienced told I’m fine. I pushed to see an actual specialist who did an MRi and they diagnosed me with deep infiltrating endo, that had eaten right through my bowel and I had to have a bowel resection and a hysterectomy. I had also been previously diagnosed with adenomyosis, which could be another possibility for you and extremely hard to see on scans. It’s usually picked up post hysterectomy. Don’t give up hope. It’s not in your head.

I also like to point out to doctors that the amount of endo a person has, doesn’t correlate to levels of pain. You can have a person with a tiny spot that is in excruciating pain, and someone else that has a frozen pelvis and had none.

Here if you need a chat or a vent xx

NICE guidelines

Do not exclude the possibility of endometriosis if the abdominal or pelvic examination and ultrasound scan are normal, and recognise that referral may still be necessary even with a normal scan. [2017, amended 2024]

1.5.5

Refer women or people with symptoms of, or confirmed, endometriosis to a gynaecology service (see the recommendation on gynaecology services) for further investigation and management if:

initial treatment is not effective, is not tolerated or is contraindicated, or

they have symptoms of endometriosis which have a detrimental impact on activities of daily living, or

they have persistent or recurrent symptoms of endometriosis, or

they have pelvic signs of endometriosis, but deep endometriosis is not suspected. [2017, amended 2024]

[MontsJ in reply to stephkp]

Was also going to signpost you to the NICE guidelines Kelpiestryder if you are in the UK. Here’s the link with the details listed above - nice.org.uk/guidance/ng73/c...

I would be VERY surprised if you don’t have endo. You are going to have to advocate for yourself. Ask to be referred ideal to an endometriosis centre, you are more likely to see a BSGE consultant. You need a lap ideally +/- an MRI, make sure the person doing surgery on you plans to do EXCISION and not ABLATION. If you have scope to go private I can recommend a could excellent doctors, depending on where you live.

I’m sorry you are experiencing such pain, and in top feeling not believed or validated.

X

[Kelpiestryder in reply to MontsJ]

Thank you!

Mind me asking why you’d be ‘very surprised’ I don’t have endo…ask because sometimes I feel like an imposter and making it up/hoping it’s something it’s not, so interested to know what part of my symptoms lead you to endo?

Yeah bsge was my next request, not just gynae I want an endo specialist! I’ll wait if I have to or save and go private! And yes have read to avoid ablation! I think mine isn’t just pelvic region but elsewhere in my body but I don’t know so hopefully that means I’ll get a multi disciplinary team!

I had a mri on my back/neck/head back in Nov for back pain, all they found was l4/5 disc starting to prolapse, but I’ve read elsewhere of woman that have had other body part mris, nothing to do with endo, and the told they have endo, if I had it wouldn’t it of shown up on my mri?

I am in mid wales…terrible place to live for health care! Only place I know of to go for endo specialist is Cardiff!! But if you know of anyone else please do let me know!!

Thank you for taking the time to reply! The support is really appreciated and I am feeling a lot less helpless today having 3 endo warriors all reassure me that it’s unlikely it is in my head!

🖤💚🙏

[MontsJ in reply to Kelpiestryder]

Sorry for the late reply. I’d be surprised if you don’t have it as you tick so many boxes.

MRI doesn’t specifically diagnose as the changes seen in MRI can be caused by other conditions, as well as the fact that subtle changes could be missed. My MRI report summarised ‘features consistent with deep infiltrating endometriosis ’, and my MRI was read by someone specialised in looking for endo.

An MRI is only going to show features of it if they did a full pelvic MRI. Some people may have it picked up coincidentally if they’re for example having their lower back MRI’d and the full pelvis is included. When they do an MRI they localise in the area of interest as it takes so long.

I’ve just had a look on the BSGE website and there are a couple of BSGE accredited endo centres - bsge.org.uk/centre/category...

Lots of love and support your way x

[Kelpiestryder in reply to stephkp]

Thank you for the reply! And for posting the nice guidelines, honestly not sure why I didn’t think of looking into that, reassuring to see that it too says even if ultrasound and mri come back clear does not mean it’s not present!

I had thought about adenomyosis too but it’s all been a bit much just trying to get myself heard! I won’t get a hysterectomy only 34, and it’ll be a while for a lap so how would one go about chasing adeno? Or is it literally onl post hysterectomy?

I had been holding out on this scan showing something, even if just very small but has also said if nothing came of this then I would demand bsge referral or track down an nhs/private endo specialist to get there opinion! Luckily my new gp did a year in women’s emergency health so she is actually listening, I just hope the negative scan doesn’t deter her!

I’m sorry you weren’t listened to either! I’m pretty sure my sister has the same, she’s had ‘ibs’ her whole life but never found the ‘cause’ for it, she had two complicated pregnancies due to blocked fallopian tubes (though they never told her why/how it was blocked) and since she had her c section she’s got a whole host of new symptoms for her ibs that are worse than ever!

I swear to god, when (if) I get some strength back I’m going to do a shit tonne of fundraising for endo and scream from rooftops because none of this is right! The sonography told me endo is one of the top 20painful diseases on the nhs…and yet they wonder why we are in so much pain from ‘periods’. It’s a joke!

Thank you for your support and posting the relevant guidelines much appreciated! It’s so reassuring hearing all the similar stories from other woman, even if we are all in pain!!!

💚🙏🖤

[stephkp]

A specialist ultrasonographer may be able to detect it or possibly may show on an MRI. I completely understand not wanting a hysterectomy at 34. I was 34 when I had mine, mainly down to lack of options and advancement of disease but I think you need to have more information and diagnoses before taking such a permanent step, that potentially may not be the complete cause of all your symptoms. IBS tends to be the main misdiagnosis of endo so it wouldn’t be surprising if your sister did have it.

You may struggle to be seen in a bsge centre to begin with as they tend to be very strict on their criteria for appointments, usually it’s diagnosed grade 3/4 that the see. If you fo into the BSGE website they give you a list of clinics and also the docs that work at them.

If you can afford it, you could potentially find an endo specialist to see for a private consultation and then ask to be referred back to the nhs on their service. You would just need to ensure they do work within the nhs as well as not all do.

It really sucks that we have to fight so hard for people to listen especially when there is so much out their about endo and how many women it affects and the pain we go through, for doctors to still be saying there’s nothing wrong, you’re fine. If men had to put up with a 10th of this, it would be solved in a week x

[Hannah818]

Hi sorry if this has already been suggested, your symptoms sounds alot like mine. Have you had a pelvic and abdo MRI ? This is what finally showed up how much endo and where for myself (stage 4 ,kissing ovaries with bowel involvement) , best of luck, took me four visits to gp and a letter to gynae to get MRI