Hi, this is my first post! I’d be grateful for any advice or experiences that may help. I’ve been going to the doctor with my symptoms for six years now (I’m 22) and, although I haven’t been officially diagnosed with endo, a doctor told me last year during an internal ultrasound that he would be surprised if I didn’t have it.
I now feel a little in limbo. I had a consultant appointment in November where I didn’t feel listened to at all and kept being told that it could be any number of issues, including bowel issues, despite no interest in further investigation to find out what these could be. I know my symptoms and I know that these are effected by my period and cycle, so bowel issues feel very unlikely.
I’m nauseous almost every day. I get pain every time I go to the toilet. I have pains in my legs that can happen any time but mostly during my period that travel all the way down to my ankles at times. During my period, before I went on birth control, I’d have issues with sickness and toilet issues. There are so many more things I could say.
There is also the fact that, reading other people’s stories, my pain has not reached a stage where I would require surgery (my heart goes out to every single one of you!). Sometimes it makes me wonder if I’m exaggerating the pain I do feel? I know that’s not true, but it’s difficult not to feel that way.
I suppose I’m looking for anyone who has endometriosis but not at the stage where they have yet needed surgery to describe some of their experiences? And also any advice on whether I should be pushing for a laparoscopy to diagnose and whether it’s worth it. I find the idea quite scary but not sure how else to get out of this stage of not knowing what to do about my pain and symptoms. Thanks so much in advance and I am sending a lot of love to anyone who reads this!
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My advice would be to have them investigate any unexplained pain. It’s not normal and just because it ‘could be anything’ doesn’t mean they should leave you without an answer to carry on as you are.
When I first went to my GP, I had ultrasound after ultrasound where everything looked fine. Fast forward seven years, during which I was told it’s in my head, it’s just ovulation pain, it’s IBS.. it’s actually Endo and Adeno that has progressed to stage four where multiple organs are tethered together and I’m awaiting first surgery. I’m 33, have not had the opportunity to even try to have children.
If you feel something isn’t right, don’t let them just pass you off. You’ve really got to dig in and force the issue. Keep a diary of symptoms, you shouldn’t have to but it really helped me to see if there were patterns etc. and made them take me more seriously. Request scans are reviewed/carried out by individuals with a specialism in endo/or have a special interest.
I obviously don’t want to scare you, just don’t blindly trust when they haven’t extensively investigated, I did and now it’s my biggest regret. If they’d done a proper investigation in the first instance I wouldn’t be in the state I’m in now and from the sounds of it you’re there.
If you’ve been referred request and MRI, that’s how I’ve been provisionally diagnosed.
I really appreciate you taking the time to reply! I think you’re right that the next step for me has to be to request an MRI as that is the natural progression from everything I’ve already had. I’ll get on that straight away, but can’t thank you enough for sharing your experience, it is very valuable to hear about. So sorry to hear that you’re awaiting surgery at the moment and wishing you the absolute best going forward! x
If my abysmal story can help anyone else get ahead of it and not end up like me I’m going to do absolutely everything I can to share and make sure my mistakes aren’t repeated.
Hi! Unfortunately, I and many other people can relate…
The self-doubt, the second-guessing of your own instincts about your body, the guilty feeling that you might be “making a fuss” or “wasting people’s time”.
It comes from years of having your pain, distress and discomfort ignored, dismissed and belittled by all sorts of people in your life.
It’s particularly harsh when we finally get an appointment with a professional person - who we were desperate to get access to, who we had faith in, who we trusted - who then fails to listen, does not acknowledge the negative impact on your life, does not trust that you understand anything about your body, does not seem to realise or care how hard it has been waiting for their help, refuses to acknowledge their own ignorance of your condition and to top it all off doesn’t actually offer any suitable solutions or next steps!!
The person you saw should have listened, sympathised, and worked with you to make a plan for a) controlling your symptoms & making you as comfortable as possible and b) investigating and treating the source of the problems.
You could talk to Fred Bloggs in the street and get the same conclusion as your consultant came up with! Basically just a shrug of the shoulders, how would I know, could be anything, leave me alone! Aargh, it makes me so angry!! 😡 [Rant over]
If you go back to your GP, they should be able to get you referred to a gynae with a special interest in endometriosis. Your GP should also be working with you to find a combination of painkillers and things like anti-nausea, anti-cramps, laxative or anti-diarrhoea meds etc so that you can function day to day.
An MRI is the new first line for diagnosis, rather than going straight into a laparoscopy. That’s not to say that you will definitely get a diagnosis from the MRI, as sometimes endo still can’t be seen (or it’s missed as the person interpreting the scan hasn’t got the expertise…) In which case, the presence of endo still might only be confirmed after surgery.
Be kind to yourself. Fight for yourself as if it was happening to your best friend or a close relative. It is NOT OK for you to be left in limbo, suffering, with neither answers nor relief. You deserve as much help and support as anyone else and it is your legal right to access appropriate care.
Obviously I hate that others feel the same way, but it is also comforting to know that I’m not alone in the self-doubt. I was also very angry after that appointment! And very shocked, but you’re spot on that I need to push for an MRI and not let it go. I think I was so demoralised after that doctor that I didn’t want to do anything about it, but this has given me the push I’ve needed to do something about it and not accept poor care without a fight. But you’ve no idea how much it means to read these words and to feel a sense of community about it. I’ve felt quite alone with it for a long time! So thank you, thank you, thank you. I’ll definitely start treating myself like it’s happening to my best friend, that’s great advice! Wishing you all the very very best in return x
Keep pursuing a diagnosis, I’d suggest you ask GP for an MRI, the consultant should have arranged this last year. We don’t want operations but it’s the only way to get a confirmed diagnosis if nothing shows on scans. Ultrasound can show it but the person has to be specialist to see it.
You aren’t imagining the pain and don’t let any dr tell you that, it’s not in your head.
I agree, the consensus seems to be to get that MRI that I should have had, I think I was too demoralised at the time but it’s definitely the next step I need to pursue. Thank you for your kind words, wishing you the very best.
Hi! I feel like we are in similar positions. I'm 24 and I've also been going to the GP for a few years with symptoms, though the first few times I went I didn't even think about endo (and clearly neither did my GP lol). I haven't been diagnosed yet, but when I had a phone appointment with a gynae, they suspected endo. I've had an ultrasound and a referral to gastroenterology so far, but I'm also hoping to go back to gynae and get an MRI scan or something like that. Luckily the gastroenterologist agreed that it's probably endo. I've never had an internal ultrasound and I'm more scared of that than getting a laparoscopy - what's it like?
And yeah I agree the not knowing is not nice at all. I like to think of it like this: they haven't ruled it out, and (like you) a medical professional suspects it too, so I'm going to assume I have it unless they rule it out. Obviously it's not confirmed, but thinking like that gives me a bit more confidence when I'm speaking about it.
I catch myself think similar things sometimes, but I try to think if I would think that way about other people, and no I wouldn't, so that helps. Also when you see people with symptoms you think are worse than yours - it might just be the case that their condition presents itself differently or has progressed further, that doesn't mean your symptoms are less valid.
The need for surgery doesn't necessarily correlate with pain, so please don't feel like you need to suffer more to be entitled to that. It sounds like you have enough to deal with! Sometimes you have to be a bit pushy when it comes to this kind of thing, but referring to guidelines etc. can help back you up. The NICE Guidelines help a lot I think (nice.org.uk/guidance/ng73) and it's worth seeing if your hospital is a BSGE accredited endo centre (bsge.org.uk/centre/category...
Hi love, I’m really sorry that you feel unheard by the professionals when it’s their duty to investigate patient’s concerns regarding their health and symptoms. I’d recommend pushing for a laparoscopy as that’s the only definitive way that they’d be able to diagnose you with endometriosis and see what stage it’s at too. I went to my gp with concerns about my pain and how long my menstrual cycle is when I was around your age too and I feel like a lot of the time they try to dismiss you because of your age, they don’t really listen to you and dismiss you, blaming the pain on other things, and often gaslight you. I’d say that it would be best if you write down a list of your symptoms and take them with you when you go to see your doctor. I was referred for an ultrasound after listing what my symptoms were and my doctor immediately suspected endometriosis so she wasn’t surprised when my scans came back and there was a chocolate cyst on my left ovary. Even then, sometimes ultrasounds don’t pick up low density endometrial tissue, so if they try to tell you that the scans are clear, fight for your right to get a referral for a laparoscopic examination as that is the only way to confirm whether it is endometriosis or not. I wish you all the best ❤️
When I first went in my early to mid 20s I was told I was far to young to possibly have any 'women's problems'. Turns out they were wrong and I've probably had endo the whole time. Wish i'd be stronger to push for more at an earlier age.
I’m really sorry to hear about your experience it’s honestly such a shame that they cause medical trauma and distrust by not listening to patients when they tell them what they’re suffering through. I was lucky because I work in healthcare myself so when I mentioned my extensive knowledge, they took me a lot more seriously but it shouldn’t have to come down to that.
Definately not. I'm sure they only reffered me because I had Leukaemia in 2020 and so did a CA125 blood test that came back super high and were scared of ovarian cancer. I don't think they'd have done that blood test under normal circumstances and if i'd not got a previous history of cancer as I must have had stuff show up on scans before I had cancer.
I can totally relate to this. I'be just been diagnosed with stage 4 endometriosis after more or less 15 years of telling them something was wrong. I would definately keep going back if its really bothering you because I find it affects both my physical and mental health equally.
Having found out there really is something wrong and It's not in my head has been really good for me. It was just reassuring that I really wasn't making it up.
I guess there is always the option to get a private consulatation (although costly), to get a 2nd opinion.
Don't give up though and keep telling them there is something wrong. If you think you need to know either way then i'd definately tell them this and see what they suggest.
You have to look after all of your health and not just the physical bits sometimes and pushing for a diagnosis and then getting a firm one can sometimes be the most relief ever.
I agree with all this amazing advice. I was like you but was dismissed again and again. Now I'm 51 with stage 4 endometriosis, unable to gave a hysterectomy because it's totally fused. I'm on zoladex and still bleeding. There are so many things I'd have done differently if I'd known it was endometriosis. Please don't normalise pain and keep pushing for a diagnosis xxx
Just agreeing with everyone to push for an MRI. I went from "normal ultrasound" three years ago to a laparoscopy last month, no inbetween even though I've been asking for an MRI. I still have no answers for my incredibly heavy and painful periods as they didn't find endo during the lap. They did find severe adhesions which they've put down to my c-section 15 years ago, and the heavy bleeding to perimenopause. Unsatisfied with this as my heavy periods have been life-long, I'm now seeing a specialist next week and will be demanding an MRI to look for adenomyosis or anything else that could have been missed.
Hello! I was diagnosed with stage 4 endo a few weeks ago via laparoscopy after 8 years. My ultrasound and MRI were all clear and I was gaslighted often due to this.
I like you, wasn't in a lot of pain, although yours sounds much worse and more frequent than mine tbh. My pain was/is mostly during sex. I was fobbed off many times, one of which was for potential bowel issues as I sometimes get pain when I poo. After 8 years, a gyno finally referred me for a laparoscopy. I had suggested this many times before and was told I couldn't have endo due to the scans or if I did it was superficial. I figured I may aswell see what's going on in there if I can as I was also struggling with infertility. It was the best decision I made. Beforehand, there times when I doubted that I had endo or what my pain could be. Turns out, my uterus was adhered to my bowel and one of ovaries were adhered to my uterus, all due to endo, at the most severe stage. The pain during sex and when pooing was a direct result of the endo which had glued my bowel and uterus together.
I know surgery can be scary but honestly, in my experience it really wasn't bad at all. What is it that you're finding scary about itwhen you consider it? The hospital staff were also lovely (Bury St Edmunds). The stitches are very small and recovery was quick. For most women, you're in and out the same day. One important thing to consider is who is doing the surgery, I made sure to ask the surgeon what her experience was with diagnosing endo via laps etc. Surgery finally gave me answers... try to look it that way instead of using levels of pain as the rationale whether to have the surgery or not. xx
I quite literally feel your pain sista! Pain-free sex is something everyone takes for granted, so frustrating and really massively impacts quality of life, doesn't it. When did your pain start? If you're with a partner, I hope they are super empathetic and caring about it.
I inititally had vulvar vestibulitis where the skin at the entrance tore during sex and then finally got surgery for that after 12 years, only to discover that I also had pain deep inside! 8 years later, find out the deep pain is our good ole' friend endo. Can't catch a break with sex lol.
I couldn't help but chuckle with your question 'Did they separate your organs yet?' Isn't it crazy what we are experiencing with endo and how dismissed we are by professionals when things like that are happening in our bodies!! During the lap, the surgeon removed the ovary from the uterus but she said the bowel adhesion was too complex for her to do and that she thought the endo had gone deep into my bowel walls too. GREAT! She said I would need another lap with a bowel surgeon and said she would send me for another MRI even my last one showed absolutely nothing. I haven't gotten an appointment for that yet. The lap was about 5 weeks ago!
Well a Ultrasound might show it but really having Keyhole Surgery is better, even then with some people it's not conclusive. If you have had it 6yrs then one or another test should show it.Get another doctor I feel!
Get a referral to a Endometriosis Clinic not just a Gynaecologist.
get a second opinion! Surgery can help to get answers however my consultant recently told me that the guidelines have recently changed because so many women including me have surgery but there’s no sign of endo but they still have symptoms and still experience a lot of pain etc. the consultant agreed that endo cannot always be seen. She’s the 3rd consultant I have seen and is the first one that has actually listened to me … she’s requested a blood test to check my ovary reserve as I only have 1 ovary as I had a big cyst so lost my other ovary. I will then have an ultrasound scan as I have a cyst on my current ovary causing a lot of pain and then she will do surgery to remove endo if it’s seen and to remove the cyst. Everyone feels different about surgery. When I had my first surgery and was told there was no sign of endo I was crying so so much, I felt like I was grieving. I know that sounds crazy but I have all the symptoms and I just want answers and for someone to believe me. It’s a horrible cycle Cus the doctors don’t give us stronger medication without a diagnosis. It’s all a nightmare. I would suggest surgery to hopefully give you answers but with these new guidelines your surgery could be ‘clear’ but you could have endo it just might not be seen in surgery. It’s all confusing and I don’t think there’s a perfect answer for you but I would defo push for a 2nd opinion and maybe request an ultrasound scan or MRI as sometimes an MRI can show endo if it’s severe but again that doesn’t always happen but if u had a cyst in your ovary at all it would show that so I would suggest that but it’s up to you 🤍xxx sending hugs
Hi there, I’m so sorry, you should not have to be struggling to be heard at all, it really upsets me to hear. Sadly it was also my experience that my complaints about pain weren’t listened to either, and getting to the point of them agreeing to even do the laparoscopic diagnostics is not straightforward. I struggled for 5 years just to get to that point, and then something else happened, my appendix burst and since it’s been removed, my pain has subsided. I was convinced it was endometriosis up to that point, and tbh I could still have it elsewhere, but no one ever checked my appendix and I had had multiple ultrasound and MRI scans over the 5 years (and hysteroscopies and mirena coil and Prostap injection), but it wasn’t even checked. The surgeon who eventually removed it said it looked like it had been leaking for some time!
So if you do still have your appendix, I suggest that you ask them to check it by ct scan (not ultrasound, mine didn’t show up on ultrasound even after it had ruptured!) before you go down the lap route. A scan is far less invasive than an operation, and a quicker way to rule out appendix issues. 🧡
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it’s honestly such a shame that they cause medical trauma and distrust by not listening to patients when they tell them what they’re suffering through. I was lucky because I work in healthcare myself so when I mentioned my extensive knowledge, they took me a lot more seriously but it shouldn’t have to come down to that.
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