Hi guys, Im really just looking for advice as I’m stuck in limbo waiting for a laparoscopy. My GP and Gyne have been great, both saying I tick all the boxes for endometriosis, so I’m on the wait list for a diagnostic laparoscopy. I’m still having all my usual symptoms: constipation, nausea, the horrendous pelvic pain that comes and goes, new stretch marks that are suspected to be from what’s happening underneath rather than my skin needing to stretch (has anyone else got these?) and my pain during sex is getting worse and worse. I recently had a really bad flare that lasted weeks with a lot of pain in my hips, lower back and around my left ovary area, I got an urgent scan (ultrasound and transvaginal) and nothing was found. I was told everything looks completely normal. After this I find myself questioning if my symptoms are even real, am I imagining it? Am I exaggerating? Is the dr who told me it’s just IBS right? I see a lot about other people fainting or vomiting from pain and because I don’t does that mean my pain isn’t bad? - I also know that if that was the case I wouldn’t have the severe pain during sex. I’m just really conflicted and mentally drained I suppose. Can anyone relate?
suspected endometriosis…doubting myself - Endometriosis UK
suspected endometriosis…doubting myself
I am sorry you're going through this. I had similar symptoms and back pain was so bad every day that I couldn't even sit.
My gyno said it wasn't endometriosis as there was nothing in the scan. I had a laparoscopy anyway and they were all shocked to find there stage 4 endometriosis. When I asked they told me it happens quite often that endometriosis won't show on the scan. Yet, it doesn't mean you don't have it. All the best.
Thanks for the support, it’s so hard to know what to think sometimes! X
Hi. All my ultrasound showed was cysts. After my lap surgery in jan mine is severe endo. Had a urgent mri which found my cysts were endemetriomas, ado, endo, fibroids. Im currently waiting fir hysterectomy.
My lap surgery was after 7 months as i was so bad i kept going to a&e and they let gynae no.
Then i got a canellation date.
Keep pushing for it and its not in your head
Thank you! And good for you going to hospital! What is it that happens symptom wise to make you go to hospital? Sometimes when pain is bad and I can still feel it after dihydrocodene I’ve thought about going in but thought they would just turn me away!
So my pain i would be crying and rocking in pain and most of us women have high pain tolerance so my husband knows when i just cant cope anymore. It would feel like awful labour pains round the front and in the back but ive had alot of issues on the lower right and they kept thinking my appendix or uti.I tried the drs a few times and was always told take stronger pain relief or cut out food/drinks. They would also say sounds like uti take antibiotics.
I had 8 weeks of antibiotics over xmas last year and when i had lap surgery in jan i had lost a stone coz meds made me sick. After water tests cane bavk from hospital they would say clear
I had done everything so now i really put my foot down coz this disease i feel not me and so lost and the wait for major surgery is silly
Endo will not always show on scans so don't beat yourself up about it, I had numerous ultrasounds with either cysts or endometriomas then a CT scan was clear nothing on it 6 month later I had a MRI which showed adhesions and possible endo The best way to be diagnosed is thru a lap
I can faint due to pain sometimes I don't I think it's how the body copes and respondes
Keep a positive mind (I know this is hard)
I wish you all the best and hope you get some answers from your lap x
Thank you, it was a bizarre feeling, I was almost disappointed there wasn’t the endometrioma on the scan that they were looking for as at least it would have reassured me as to what was going on- as awful as that sounds! Just got to play the long game waiting for the lap! Hope you’re keeping okay xx
I get what you mean. I had a similar journey and it made me question am I fighting for a gynaecology diagnosis when it could be something else. I then pushed to be seen by a bowel specialist who said it was not there department. I spent 6 month fighting it wasn't in my head with gynaecology they did a lap and found nothing and discharged me and said it wasn't related. I asked my GP to refer elsewhere for a second opinion but the wait list was over a year so I went private in between and got my diagnosis my GP then sent them an expedite with the new information I have my first endo nurse specialist app in Dec thru NHS. I am alot worse after ablation surgery than I was before surgery so I'm feeling scared on if they will take on board the private advise or not (I was recommended I have a hysterectomy) x
Hey, agree with everyone else it can’t always be seen in scans. Also, unfortunately as I understand most people aren’t specialists/have very little expertise when it comes to detecting endo so quite regularly get it wrong. You can get a scan with someone specialist privately for peace of mind but the lap is always going to be the most accurate for diagnosis.
Also I don’t faint or throw up with pain and I have confirmed endo through lap. My main issue has always been pain during/after sex, this intense cramping that increases in intensity and is almost unbearable at the peak but fades away in about 5/10 mins. I also have bladder infection type symptoms. Have never had heavy periods or particularly painful periods. The condition is different for everyone so I definitely wouldn’t rule it out because your symptoms aren’t like others.
thank you so much for this, it’s good to know I’m not different to everyone! It’s hard to know what to think sometimes!
Big time, I’m constantly questioning if new symptoms are something else, that’s the nature of the condition unfortunately. It’s very unsettling.
It’s a hard road, but people like you being supportive are making it so much better! X
This post totally hit the nail on the head for me! I have been passed about between gynae and gastro for almost 10 years now. I have a diagnosis for coeliac disease, IBS and polycystic ovaries. I am waiting for another gynae app now in December after jumping through hoops for over a year until they agreed that I exhausted all other options. Some days my pain and other symptoms are so bad I feel so done and like I can’t even function as a human being anymore. Other times I question whether I’m a hypochondriac! I am terrified that I eventually get tested for endo and it’s clear because then I’m still in limbo! I’ve been tested for so many things and most have been clear. It’s very frustrating and debilitating! X
So sorry to hear what a hard time you’ve had, it sounds awful! I feel the same in that if they don’t find anything on the lap what the hell is wrong with me! Hopefully you get your answers soon! Xx
I think this is a really common concern. I was really anxious before my lap (and we were spending a lot of money on it). My scans had been normal (though turns out MRI was not done with right protocol to see my main issues). I felt worse thr closer it got. I remember saying to my DH as I waited to go in how worried I was. I remember how emotional I was when the surgeon came to me in recovery to say what he’d found - he knew that’s what patients are most anxious to hear - that it is there! We aren’t making it up. I had severe rectovaginal endometriosis excised at that lap. Best of luck to you
It seems there are so many mistakes and things made around endo since so few people specialise in it still. So sorry that happened to you! Thanks for your support! X
going through this too I was told today it’s endometriosis and adenomyosis
Said I had a fibroid too,
Got to go back in 8 weeks need to decide if I should have one of the 3 options below .
Coil
Pill
Injections
I am 42 I’d rather just have hysterectomy
Is that really the only change that comes from getting the answers? Just more talk of coil and pills? 😭xx
Having a diagnostic laproscopy is the way they will see the actual extent visually during surgery.
Had loads of scans and nothing showed unless something is sticking.
I had stage 4 endo and was FOBBED off all my menstrual life, until I was 35!!!
The last time ut happened prior to diagnosis at 35... I was sobbing in a GP office for the 5th time in a month because the pain was constant, and told it was all in my mind, and I had mental health issues, 24/7 pain does put the pressure on both mental and physical wellbeing! Then got
asked if I had a job like that should make a differnecd?? ( I work in MENTAL HEALTH)
so many ways to demean me
But long story short after the diagnostic Lap the GP called me themselves to APOLOGISE, one of the worst cases they had seen. Then Had surgery they were nicer to me after that, but seriously?
Don't doubt yourself the lap wil reveal all.
Wow that’s absolutely shocking! I’m so sorry they were so awful to you! I’ve had a dr ask if I’ve ever been abused because if I had then the mental toll of sexual abuse was the reason I was having pain during sex I.e. pain in my head 🥲 so insulting!! So happy that they apologised to you- that’s almost unheard of! Thanks for the reassurance! Xx
Honestly so glad I came across your post! I have literally been searching for someone in the same boat!! I first got rushed to a&e in Feb, suspected appendicitis so they removed it, whilst in recovery I got severely poorly from peritoneal fluid leaking so was in hospital for two weeks, just to find out the histology of appendix was absolutely fine so was never the problem anyway. Two weeks later took myself back in same pains, this happened three times.. still had no answers they were literally just guessing the third time treating me for PID etc 🥺 anyway it all died down for months, then two months ago all started severe again exactly like your symptoms! CT has been clear, so has abdominal ultrasound and internal, blood tests, urine dip, literally all clear! Colonoscopy showed I had diverticulosis but would not cause symptoms like this Dr said. So finally had referral for gynae which will take 18 weeks 😩 currently living in pain, can't wear jeans or anything I'm so so so bloated always, constant pain, back aches constantly weeing aswell which is so strange!! 😴 I'm just hoping when i see them they just go straight in and say diagnostic laparoscopy because I literally can't take any more waiting for scans 😩 I wish you all the best 🙏❤️🩹 keep us updated xxx
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