The dreaded words from the ultrasound scan "everything looks fine!" 😖

[Heartof3]

I had it in my head to just listen to my body , all the pains i been going through & not the scan results, as I've heard scans don't pick everything up.. But i can't help but feel like I'm going crazy!

I could of sworn that i atleast had a cyst on my right ovary, I have nasty sharp stabbing pains & constant pressure in my womb. I'm so so greatful there was nothing sinister found but was hoping for some sort of answer.

I look like I'm 6 months pregnant & this burning aching pressure is now everyday & has stopped me enjoying my life.

My cycle goes like this.. ovulation is a dull heavy pressure in my womb & back with stabbing. My period is burning pressure pain in my womb & outside my vagina. The pains are everyday now but worse after any activities. I also have brain fog & dizziness 😖

I'm currently sat with a coffee in the hospital not wanting to go home & tell my family "the scan looked healthy" after they've been helping to look after me.

I wish i could just ignore this pain & live my life but everytime i have tried, I am left doubled over in awful pain that night.

I'm on the wait list for a laparoscopy but now my anxiety is telling me- Imagaine if the laparoscopy "all looks fine"

This is just physically & mentally, Isolating & draining 😞

[Elsiegreeneyes]

Aw I can completely empathise, I have been through this so many times. I was relieved when I was told after my lap they did find endo - it wasn't all in my head. I have a feeling I'm about to start the whole cycle again as my symptoms have changed recently and expecting to be getting referred for scans and tests and for things to come back as 'fine', despite feeling rubbish and suffering in pain all of the time.

Endo is a horrible thing to diagnose and to see what's going on - laps are so intrusive and awful. You know what is going on with your body, you know how much pain you are in and how it is affecting your (and your family's) life. It's difficult to stay strong and keep 'fighting' when you feel so sore and vulnerable. All I can say is just keep going and telling as many medical people as possible what you are experiencing and hopefully they will get to the bottom of it and support you in helping you manage the pain and the condition the best you can.

The best advice I was ever given was this;

"you know you have endo. you know it is never going to go away. you know that you are going to be living with this condition and in pain for the rest of your life. We can help give you tools and information, but you have to do what you can to manage your pain so that you can live the best life that you can"

I wish I had been told this earlier. Maybe if I had, I wouldn't have understood it as well as I did when I was told that last year - 11 years after symptoms became unbearable.

You know there is something going on with your body. Listen to yourself and stay true to you. Endo is not only tough physically but it takes a toll mentally and psychologically xxx

[Heartof3 in reply to Elsiegreeneyes]

Thank you so much for your encouraging words ❣It really is such a battle.

Mine has been horrendous since the birth of my Boy 4 years ago. I had a post partum endometrium infection that turned sepsis & have been suffering since. My cycles are like a rollercoaster, I can go from feeling like I have IBS then it will change to a feeling of a UTI then comes the heavy pressure feeling, like me insides are falling out with a sharp feeling around my right ovary.

I had a prolapse surgery nearly a year ago

& these pains have peaked to a point where I can't walk far. It's like my pelvis is only happy if i lay in bed.

I have no friends left because I am always letting them down. This site defo helps, Thank you to lovely people like you❣ x

[AllthatGlitters]

Hello your pain is real so don’t feel bad about telling your family nothing was found on the scan. I was given an ultrasound scan in the beginning and nothing was found. I was then referred to gynaecology for a transvaginal scan which showed cysts on the ovaries. A lap also showed endometriosis. Don’t give up hope. It seems the ultrasound scan isn’t good at picking up endo or adeno anyway x

[Heartof3 in reply to AllthatGlitters]

Hiya, I had both scans, abdominal & vaginal.. nothing showed.

I am on the list for a Lap, I just have so much going around in my mind from it all. So draining isn't it xx

[AllthatGlitters in reply to Heartof3]

Yes it is but a lap will give you a diagnosis or not, I also had an MRI for adenomyosis x

[Heartof3 in reply to AllthatGlitters]

I don't no why they bother with scans for these things. MRI defi seems better x

[AllthatGlitters in reply to Heartof3]

Yep my MRI and laparoscopy gave me the answers I was looking for. Hope you get the same xx

[Heartof3 in reply to AllthatGlitters]

Thank you ❣ x

[Kricam78]

Hi Heartof3,

I know it's easy for me to say but don't worry about the scan - mine was also normal but a few weeks later a lap showed endo between my uterus and bowel, behind my cervix, on ligaments and showed my left ovary was stuck to my bowel and pelvis. I'm definitely not the only one who had this experience.

The medical guidelines (NICE) for endo actually stipulate that practitioners shouldn't rely on ultrasound or even MRI when they show as normal and women are experiencing typical endo symptoms, hence why you're on the waiting list for a lap. I do understand why you're worrying though because I had the same thoughts as you right up to being wheeled into the theatre.

[Heartof3 in reply to Kricam78]

Aww thank you for your reply.It's nice to know I am not alone.

It's crazy when our bodies are in a cycle of pain that stops us enjoying life, only to be told "everything's fine" it just adds more confusion & loneliness.

I was hoping it's a simple cyst as most my pain is in my right side but whatever it is I'm not given up. We know our Bodies aye ❣

[Lily1986]

I totally relate to this. Endo doesn’t often show on scans, I’ve had countless come back “normal” and then when I’ve had laparoscopies it’s been discovered each time that I have reoccurring stage 4 endo and adeno that has obliterated my bowel, ligaments, ureters, pod and everything distorted out of place by dense adhesions. Had left ovary and both tubes removed.I don’t trust scans one bit, they’ve never been accurate in my experience.

Don’t let the medical world gas light you into thinking everything is normal when you know and can feel damn well it isn’t.

I will never forgive them for the 13-15 years they dismissed me (and still do even with a diagnosis and infertile), this disease has ruined every aspect of my life.

Message me any time, I can relate to the daily pain and the isolation so would be happy to be in contact with you. Xxx

[Heartof3 in reply to Lily1986]

I'm sorry to hear u have been through all this, it's really not fair 😞 Thank u for your encouraging words.

I have also been battling for years.

My pains have been bad since the birth of my son 4 years ago but life controlling since I had prolapse surgery a year ago, so not sure if this has added to scarring? But it's just awful.

I'm always here if u want to chat too, anytime ❣ x

[Fipp]

Hello heart of3 I echo all above and would just ad that adenomyosis can be missed on mri or transvag depending on whether a specialist in this area is reading results. For this reason I insisted on a specialist referral and adeno was found. Yet no endo and in wait list for lap. But yes I doubt myself also and worry that I will make things worse with a lap or even trying hrt now as I am at menopause. I read that a lap is the only way but with the wait lists and self doubts it’s easy to loose my nerve. This is from an accumulation of being dismissed and not heard for years like many of us . Just told it’s ibs. I have all symptoms you describe and more- less so now maybe with meno but again I doubt myself here as I eat less to compensate and although I don’t bleed anymore still swell up etc , dragging, ligament pulls.

So I’m sending A sista hug to you and us all for the exhausting process we each feel- due to no biometric non evasive testing and lack in research ; compared to erectile dystfunction) we trudge on. It’s both discriminatory and political- unnecessary and yes marginalising in terms of good care and having a normal life!

Big squeeze x

[Heartof3 in reply to Fipp]

Aww thank u so much for your kind words.Do u no what caused your adenomyosis ?

My doctor is thinking I have adenomyosis from an endometrium infection that turned sepsis after birth.

I also had prolapse surgery last year which seems to cause instant pain with any exersise I do, including walking.

My pain used to be bad with my monthly cycle but now it's all the time 😖

I'm forever guessing what could of made it worse & if it's endo or scaring.

It's such a battle isn't it.

Xx

[Escapologygirl]

I am in exactly the same way and as of this afternoon I need longer have a job.

[Heartof3 in reply to Escapologygirl]

Oh nooo 😞 I hope you're ok ❣

[Littlebug77]

Wishing you the best I’m currently at this point and feel hopeless stay positive you’ve got this

[Heartof3 in reply to Littlebug77]

Bless u 😞 it's awful isn't it. Stay strong. Always here if u need a chat.

We've got this ❣

[Watermelon22]

I absolutely feel your pain! And I'm already diagnosed but have not seen a specialist since having my children who are now 6 and 7. I've had a recent flare in symptoms but now mostly bowel related. After a 'normal scan' and a few pain free days I'm feeling as though I've imagined the flare up. I know I haven't but it's amazing how much it gets in your head! I'm dreading seeing the specialist now especially if I'm having a good day. Isn't it amazing how we wish for bad days so we don't seem so crazy lol! Sending you lots of well wishes and reminding you that you're not alone on this journey xo

[Heartof3 in reply to Watermelon22]

Omg yes! I've just been having exactly the same convo with my partner! I totally relate to everything u have just said!

Did u find your pains got more frequent after having your children?

X

[Watermelon22]

Its so nice to know you're not the only one feeling this way...although it's certainly not nice to go through. Mine pains settled for a little while after having my children with the occasional 'bad month' but they've got increasingly worse. My period cramps have never been quite as painful as what they were before but I'm definitely concerned about my bowel now. I have pains and pressure every month. A literal pain in the arse haha! It also feels like my insides are going to fall out although thankfully a thorough (but very painful) pelvic exam have reassured me they definitely aren't falling out. Thank god lol! Ovulation time is also particularly painful. I bloat up like a balloon and feel like a giant walking bruise. The kind of bruise that goes really deep down into my pelvic organs. My gp was lovely and really understanding but my normal scan results have made me really doubt myself. The pelvic exam made me feel slightly less mad due to the severe pain when she applied pressure toward the back. I know the pains are there. And yet I'm telling myself I've imagined them because I'm OK right now. Ugh. It took me so long to work up the nerve to book an appointment too. I wanted to be absolutely sure that I wasn't overacting even though my partner kept pushing me knowing that the bad days were absolutely NOT normal. He's seen me through both of my excision surgerys in the past so you'd think I'd give him a little more credit. Oops. It's just so hard to explain to people about that little voice in the back of your head that tells you that you've got it all wrong. It's there though and it's worse than the pain in my arse haha! Xo

[Pinklady83 in reply to Watermelon22]

Omg I thought I wrote this post I’m exactly the same! Ovulating pains are awful as for period pains that’s like contractions and I’m petrified it’s affected my bowels… I’m literally in tears tonight with the pain I have in my bowel area… tramadol hasn’t even helped … slightest movement is horrendous need this lap appointment to hurry the f**k up Send hugs to you all x

[Heartof3 in reply to Watermelon22]

Aww i hear u! It's a vicious circle isn't it!

I get exactly the same symptoms as u when i ovulate. I had my hair done at my local salon last week, I was sat in the salon chair trying to ignore my ovulation pains but they got so bad & crampy like my whole pelvis had seezed up. i had to walk out half way through with soaken wet hair coz i couldn't bare it anymore. As i was walking home it felt like something was stabbing my right ovary. I got home & broke down to my partner then stayed in bed for 2 day's as pain was shooting into my right pelvic area everytime i put my foot down to walk. Today I am walking around fine, although i still have a slight pressure in my womb. I no that in atleast a weeks time this pressure will build up again & burn as it gets closer to my period 😖 it's the same cycle every time. But today, like u, I feel like i almost dreamt it 😏 x

[Pinklady83]

As said above I’m the same as you hun this is bloody horrible and disgusting we have to wait so long! I do wish I could afford to go private My partner like yours is so supportive, he’s not long told me he’s ringing an ambulance coz the pain I’m in tonight I said no way ! I can’t as he has a broken leg and busted ankle no way could I leave him with the kids , going to have a smoke and try the oral morphine soon to try sleep x

[Heartof3 in reply to Pinklady83]

I hear u 😞 it's just shit isn't it.Bless u.

Oh bloody he'll, sound like u got it all going on.

Nice combo 👌 Hopfully that atleast takes the edge off it for u x

[Pinklady83 in reply to Heartof3]

The trammies have only just taken the edge of the pain still in agony ! Morphine time tho as I mentioned lol So do you get pain bowel area pain as well as the crippling contraction like period pains in belly and back! Then the awful pain with ovulating as well hun?

Where you from etc ? X

[Heartof3 in reply to Pinklady83]

Hope u managed to sleep ok? My pain in mainly in my womb,bladder & right side of ovary & back pain.

It feels like painful pressure & sharp stabbing pains. Always worse at ovulation & period. I tend to get awful burning pains on my period, I used to think it was a bad UTI with IBS at first but all that had been rulled out.

I also get really dizzy & tired & ridiculously bloated.

I'm from Weymouth. Where abouts r u from? X

[Dogmad6]

I was just reading this thread and a lot of it is like reading about myself years ago. Re your question about your situation getting worse after having children, yes that definitely happened with me although it was pretty bad before.

I wish I had known years ago that scans hardly ever show anything wrong if you have endometriosis. I don't even know why they bother to waste resources doing ultrasounds. Then they tell you that you've 'just' got IBS and make out like you're a wimp! I actually had widespread endometriosis and still suffer now although better than I was after lots of operations.

Try and stay strong and keep fighting. XX

[Heartof3 in reply to Dogmad6]

Thank u so much for your message. It means alot, especially knowing i am not alone.Looking back I now no my periods are linked to this, back before I had kids i used to have awful stabbing pains up my bum when trying to open my bowels (sorry tmi 🙈) I also would get so dizzy & tired & never felt quite right. I've often struggled with low iron too.

Each of my 3 children my pains have definitely been more questionable but palmed off medical professionals as "bad periods, painful ovulation,anxiety & low iron, virtigo & even trapped wind 🙈

I gave up & got on with it. But since I had my son 4 years ago, I had a nasty endometrial infection. Pelvic floor dysfunction. A prolapse that was repared a year ago with hope that my pains would get better but now they're just life rulingly painful 😖

I'm glad you're doing abit better. Still a battle tho aye 😏 x

[Dogmad6 in reply to Heartof3]

Yes still a battle and especially with the horrific stabbing pains up the bum and other bowel symptoms. I hope you can get to a point where things are at least better some of the time. It's a horrendous illness. xx

[Knina]

Sorry that you are in such pain. My pains are gradually getting worse despite having Mirena. Scan and ultrasound do not show anything. I met with the doctor yesterday and she told me that it might be due to nerve pain. That muscles are very tight and it affects nerves. I will try another meds to relax muscles and ease my nerve pain. Maybe after that I will be able to tolerate PT. Have any of the doctors discussed it with you?

This disease is bringing me to my knees mentally. I am so tried of not having answers and unpredictability of pain...But life is going on. Hang in there. Maybe lap will resolve many of your pains!

[Heartof3 in reply to Knina]

Oh bless u 😞 sorry u are in pain too. It's awful isn't it. Do u mean pelvic muscles?

I do physio thearapy for my pelvic floor dysfunction, is that whatu mean? X

[Knina in reply to Heartof3]

Yes, pt for pelvic floor. I cannot tolerate at all. My hope that new meds will help me. I do not like medications though

[Heartof3 in reply to Knina]

Is your pain from pelvic floor dysfunction? Do they think u have endometriosis too? I don't like medication either, they make me feel so dizzy & tired x

[Knina in reply to Heartof3]

I have been diagnosed with endometriosis 16 years ago and endosalpingeosis 2 years ago. Last lap did not find any Endo. One doctor said I most likely have microscopic Endo and endosalpingeosis. Treatment for both is the same.

[Heartof3 in reply to Knina]

Bless u.Hope you're doing well x

[Chester28]

Aww so sorry you went through this, I honestly feel for you. Don’t ever feel it is in your head only you know your body no one else knows what you are going through.

Also in some scans they sometimes don’t show up, so hopefully when you have the lap they will see something so it will give you answers and explains the pain your in.

I am happy that they are still proceeding with treatment and you are on the waiting list of lap and hopefully won’t be too long of a wait 🙏❤️ Xxx

[Heartof3 in reply to Chester28]

Aww Thank u Hun.So true.

I hope you're ok & not in too much pain ❣ x

[Chester28 in reply to Heartof3]

No problem at all always here if you ever need a chat ❤️

Yeah not too bad thank you managed to finally get diagnosed and they can confirm I have endometriosis, so now on a treatment plan and on the road for getting surgery too 🙏❤️. So relieved as I can’t carry on with the pain much longer so I do completely sympathise with you as it is horrible 😞❤️

[Heartof3 in reply to Chester28]

Aww I'm so pleased for u! Not pleased you're in pain 😢 But Thank god u finally got answers.. your battle is now a diagnosis & step in the right direction. Always here if u want to chat too.

We've got this 💪❣

[Chester28 in reply to Heartof3]

Yeah so relieved, I still have some more questions but when I get to see the specialist I am sure they will give me more information ❤️.

Aww thank you lovely and always here if you ever want a chat too ❤️

Yes we sure have got this 💪 ❤️

[Heartof3]

**UPDATE** my doctor rang me & said my scan revealed a mass of Pelvic congestion. The nurse scanning me missed this but was picked up when it was sent to the specialst after.

[Riverchick in reply to Heartof3]

Hi heartof3, I’ve just been reading this thread and as I believe I may have pelvic congestion I am really interested to know who diagnosed the pelvic congestion, what kind of specialist , endo specialist?

[Heartof3 in reply to Riverchick]

Hi Riverchick,

I went for a scan to look around my pelvis to see what was causing me so much pain. I was so disopointented when the nurse sent me upstairs to the "training accademy " so i guess one of nurses was learning?

The scan felt like it took ages & felt so uncomfortable, i had both abdominal & internal scan.

Anyway, they told me everything looked fine but they have to sent it all off to the specialst to double check.

Not long after i recieved a phone call to say that i have significant pelvic congestion, mostly to my right which is where i experience most of my pain.

It's crazy how much pelvic congestion share similar symptoms of endo. And it's sad how theres hardly any help or advice on it.

I have a laparoscopy next week as i can hardly walk & also suffer with cysts.

How are you coping? Here if you ever need a chat xx

[Riverchick]

Thanks for replying xI had a transvaginal us about 4 months ago (I’ve been really suffering with lft sided pelvic pain) and like you was very surprised when the radiologist said there wasn’t any cysts, I usually always have lft sided cysts, then a couple wks ago I had an mri on my back and they’ve found a large adnexal cyst. Now dr referring me for another scan of pelvis (not sure what type of scan).

As far as the pelvic congestion I feel I have symptoms and when I mentioned to last gynea registra I get visible veins on pelvis, he told me I have them inside aswell , so asked if it could be pelvic congestion and he just said some consultants don’t believe in it (I presume the lead consultant of that clinic doesn’t) I’ve been seeing her for years !

I mentioned it when I was being seen by urogynea in pelvic floor clinic and she just said it could be”.

Im now being referred back to endo/pelvic pain clinic and have specifically asked not to see same consultants team but I don’t know where to ask to be referred to.

I put a post up on here for any recommendations of endo/pelvic pain clinic in London but had no answers yet….. if you or anyone else reading has any hospitals or consultants to recommend please pm me as if you post it on here they can remove it, but any advice on how to find a bsge qualified consultant would be appreciated, I’ve looked on website and can find the clinics but not sure which one would be best and not sure if all consultants working in them are bsge certified.

[Heartof3]

That's so disheartening when they say they don't believe in it, especially when there's proof & so many people suffering with it. Apparently pelvic congestion is more common on the left side! Mines on the right. I also get cysts that come & go too.

Theres no way we're feeling all this chronic pain for no reason.

Mine stops me doing anything, simple walks which is longer than 10 mins kills me.

I'm due on my period at the mo, i feel lile i have a nasty uti & opening my bowels hurts. I receiveda call yesterday to say that my operation has been cancelled till end of may😔

It's all such a battle isn't it.

Unfortunately i dnt live near london or have any recommendations, sorry.

Hopfully someone reads this & can point you in the right direction though x

[Echo1999]

This message spoke out to me so boldly I feel I could have written it myself! My scans have also came back fine, despite a small ovarian cyst that they have dismissed as nothing.. I just wanted to say that you're not alone and this whole community is here for you. I'm awaiting a lap as well and the daily pain and symptoms are really testing me lately. Just hold on, find relief where you can, and know that you are much more than this terrible disease, and that your pain is valid regardless of a diagnosis Message! Message any time you need to talk, lots of hugs honey xx

[Heartof3 in reply to Echo1999]

Ahh thank u so much. I am currently recovering from my laparoscopy. I have adenomyosis.

Always here if u need a chat too x

[Echo1999 in reply to Heartof3]

So happy for you that you have answers now, hope your recovery is going well x

[Heartof3 in reply to Echo1999]

Aww thank u. Hopefully your Lap isn't too long to wait now 🤞 x