I have suspected endometriosis and have had 2 consultations, multiple blood tests and an MRI and now going to see a specialist and am waiting for a laparoscopy and also on a waitlist for a fertility clinic.
I am so anxious and worried all of the time; what if they don’t find anything? What if they do find something? Will the pain stop after surgery? What if something goes wrong? Can I have children? What if I’m making it all up and I’m just dramatic or have low pain tolerance? Why didn’t anyone listen to me years ago? Am I doing the right thing? And I am just so emotional all of the time! I go to sleep thinking about it, have nightmares about it and then wake up in the morning thinking about it.
I feel like a burden on my partner and my family because every moment of my day is taken up with a new worry about endometriosis or researching more and more, worrying that if I don’t know how to advocate for myself or ask the right questions then the surgery will go wrong and I’ll be in a worse off position than I am now. All of the consultations means I have to have time off of work as well and I’m worried they are going to think I’m not doing my job well enough (there are only three of us in the company).
I feel like my pain and worry is consuming me and people are going to get fed up of me or think I’m over dramatic. Has anyone else been here, is this normal?
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You're not being dramatic at all. I also have suspected endometriosis and currently trying to get further investigation. I've had all the same thoughts and feelings as you - am i being dramatic? What if people think I'm exaggerating? Maybe it isn't? What's going to happen. I'm lucky in that I'm not having kids so not needing fertility clinic etc but can't imagine how difficult that is. Please be reassured that what you describe is completely normal and to be expected.
Thank you so much, and thank you for sharing. It’s really helpful to hear I’m not the only one going through this, it’s hard to remember you’re not alone in these feelings until you hear from other people. I hope your investigations are helpful and provide you some more clarity
I’m so happy to hear this, what a brilliant step forward! I really hope this gives you more clarity and a reason behind your pain.
If it is at all helpful, I was recommended to push for an MRI before a laparoscopy if they do suspect endo as they can use the MRI as a kind of map for any surgery, and is less invasive in the first instance. But also if nothing shows up on the scan it doesn’t mean endo isn’t there, so still push for a diagnosis!
I have ALL of these and more! I had a gastro app the other day who told me my symptoms were ‘just ibs’. I cried in the appointment, i cried on the way home, I rang my mum in tears and cried for most of the afternoon, pulled myself together for a little bit but then again when my partner got home curled up on the bed in his arms in wild hysteria exclaiming I must be completely and utterly insane, questioning my reality, wondering if my brain is just making it all up, maybe I’m just a really weak pathetic person who can’t tolerate anything, will I ever be able to function properly, will I ever ‘recover’, what if there’s absolutely nothing physically wrong with me and my brain is just fucked, I’ve peaked and my life is ruined? (I’m only 34). My partner assured me none of the above was true, my pain is very real and I’m definitely not weak but far stronger than he or anyone he knows is! he was absolutely disgusted at how the dr had dismissed 6months of food diary’s to prove its not ‘just ibs’ but he was even more annoyed at himself for not coming with me to the appointment to fight for my case! He reminded me that the state of the nhs is a joke and disheartedly repeated that sadly woman’s health is completely ignored and under funded! And none of that is my fault. It is not in my head, there is something bizarre going on with my hormones/cycle/period/body and he sees me suffer unjustly because of it!
And then of course I feel incredibly guilty and a burden for putting all of this on him. But thankfully he doesn’t see it that way and feels guilty himself that he can’t do anything to help me!
It’s a vicious, sometimes delusionary cycle and doctors don’t seem to care for the impact not just the symptoms/pain we go through has on us and our day to day but how much our mental health is affected! And how insane their blasé gas lighting can make us feel!
I don’t know what I have. Every test I have come backs negative and I’m told I’m perfectly health.
Currently my cycle has changed and I am getting less pain/cramps/bleeding but the onslaught of other symptoms have increased. So again I’m questioning my reality and that maybe I don’t have anything wrong with me. But then I remember a couple weeks back I effectively collapsed in Aldi out of nowhere due to period type ovulation cramps and I didn’t know if I was going to faint, pass out, throw up, shit myself or all of the above! And then I remember back in December where I couldn’t get out of bed for 3 weeks due to severe abdominal pain/cramps and was permanently attached to a hot water bottle and any movement made me want to again faint/throw up/shit myself!
I know my body and I know somethings not right. For a long long time I was told my heavy painful periods were normal. For a long time I believed the docs and just took the pills they gave me to send me on my way. For a long time I ignored my body, convinced myself I was fine and pushed my poor body further than I should have because I took the docs advice as some godly code to live by. I regret it all. I knew when I was younger things weren’t right but I was too young to advocate for myself, my mum and the doctors are older wiser they must know better. When I fought again in my late teens/early twenties I was so exhausted I didn’t have the energy to fight more and just accepted that it is ‘all in my head’ and went through a decade of antidepressants/psychotics to try and ‘fix’ my symptoms. 4 years ago I’d had enough and again fought the dr exclaiming there was something wrong but wasn’t confident enough to argue when he exclaimed I couldn’t be having hormonal problems as I was ‘too young’. Here I am again, fighting to be heard, telling them that all their preconceived diagnosis and ideas about my health are wrong and that maybe if they’d just listened to me when I was younger I wouldn’t of wasted my entire life constantly battling symptoms and taking treatments that only mask the problem without even finding out what the problem is, let alone fixing it. And putting me in this complete mess.
It is infuriating. It is heartbreaking. It is soul destroying. So no, you are not alone, definitely not alone. I’ve read so many woman’s accounts on here that are too similar to mine and yours.
We have all been let down.
We have all been made to feel we are insane or making it up.
We have all been led to believe that our health isn’t important.
And we have all been told at some point or another that our pain, symptoms and suffering isn’t real.
But it is. And we have to keep fighting for ourselves, for each other and for the future of woman’s health. We don’t deserve this, we bear far too much of a burden being a woman anyway, we deserve better care, we deserve better treatment and we deserve to be heard and understood!
You will find a plethora of ladies here who can relate, and reaching out to each other like this is how we keep getting ourselves back up again and fighting to be heard, seen and treated appropriately.
You are 1000% definitely irrevocably not alone and all your feelings are valid. Even the ones that make you question your reality!
My Inbox is always open!
You are among womb warriors here and we each have a story that forms a part of the web of life that hopefully one day will be taken seriously by healthcare professionals!
Thank you so so much for your reply, you’ve reminded me there are so so many women who are in the same position as us, and the unfortunate fact is we are put in this position by lack of education on endometriosis and generally women’s health.
I have now emailed my MP with endometriosis UK’s email about endometriosis awareness month- I think, like you said, advocating for ourselves and other women might help me with all these thoughts and feelings- take back some control in any way I can I guess?
I’m so sorry for the pain and disbelief you are experiencing. Being constantly told you are wrong about your own body seems to be a common thread, and I think that’s what makes us all think we’re making it all up and going crazy!
I really appreciate your reply, it’s taken me out of the deep spiral I was getting myself in, and I really appreciate you sharing your story, it is extremely similar to mine and knowing there is a support group of women here is beyond reassuring.
Likewise my inbox is always open to you, and to anyone who just needs a chat!
Ladies you are incredible. Years ago we often got told that endometriosis was extremely rare or didn't exist. I was told by one doctor that I needed psychotherapy as I clearly "wanted something to be wrong with me". I've had doctors roll their eyes at me, sigh heavily, clearly annoyed with me. I've been told "I'm wasting their time" and I'm just "unlucky" with my periods and need to "toughen up". I distinctly remember saying to one doctor "I know something is wrong with me" and crying uncontrollably in his office whilst he looked at me dead eyed and glancing at the clock. I could go on and on. Male doctors and female doctors. Young doctors and old doctors. I've been armed with papers I've collected about endometriosis and once the Internet arrived, loads of evidence from there too, only to be sneered at, "have you been on doctor google again?" I've been scoffed at and belittled over and overI'm not a stupid woman - I've been made to feel stupid at times. If it had been the Victorian period I'd probably have been locked away in an asylum. Now I'm 52 I have no more fxxks to give (as the young ones say) and after 30 years of being told it's IBS (which I never believed) peri menopause kicked it off like a bomb until I ended up going for a hysterectomy. Then they found everything fused with stage 4 endo everywhere. They had to abandon the hysterectomy. I was very upset after waiting so long but I was also finally vindicated and the knowledge and relief that I had ALWAYS KNOWN my body was incredible. So, my message is to keep going. I'm in awe of this next generation of women. You are strong and fierce and you are finally putting endometriosis on the map. It's everywhere I look at the moment and it's not just confirmation bias. One in 7 women (they used to say 10 but they think that's a conservative estimate now) have this life long progressive disease and you are not shutting up and taking it lying down. Keep going x you are all amazing xxxx
I am so glad you finally got that diagnosis, it doesn’t take away the symptoms and years of pain and suffering before, and after, but a diagnosis in itself is so validating.
Now someone does believe my pain, I have kind of convinced myself that I’ve gaslit them into believing me because why do they believe me after so many doctors have told me I’m wrong?
I truly do think I would also be locked in asylum if we were back in the Victorian era, we would have been neighbours! I kept being told by doctors that it was anxiety or depression after crying in their office, or that I had low pain tolerance (including after an ambulance trip to A&E for the pain and loss of blood and clots on my period) and after years of trying to get help you kind of lose your faith and momentum. I’m so glad you didn’t lose it, you are proof to me and to anyone else reading, you really do know your body best, and what you are feeling is all so real!
Thank you so much for fighting for what you knew to be true and I hope that the momentum just keeps on coming for generations xxx
You poor poor things. I can’t imagine how disruptive this is for you all !! I’m in a similar situation but with my 15 year old daughter. Shes so ill with it, it’s up and down and I just don’t know what I’m doing. I’m trying desperately to advocate for her but have this constant feeling I’m being judged for being over sympathetic or just a bit extra about it. But she can’t get out of bed with cramps some days. She’s currently having n a break from her pill for a few days. She got sent home from school day 1. Day 2 I kept her home and day 3 she had to go to school. She made it through the day so that’s great …. We’re going for day 4 at school but the period has now started and you know what that means. Now I’ll have to fight the school for her to be let out of lesson so she can change her pad every 45 minutes.
I actually got to the point the other day and I came to the realisation that if no one believes us or thinks we should be doing things another way then they think I’m/were lying about it, and we’re not. I hate the judgement around it all. I’m guilty of feeling empathy for her, maybe too much , but what I’m finding out now is not many do have sympathy and understanding so she’ll (and all of you guys) will have mine.
It’s such a battle, I have no idea what I’m doing, let alone how my poor baby feels. It’s one step forward and 20 back. I thank you all for being so open and although it’s utterly grim it’s good to know we’re all in the same boat. Any advice appreciated
I’m sorry to hear your daughter is going through this. I was 13 when my symptoms started and I am now 26 and only just got doctors to take my symptoms seriously after my partner and I are struggling to conceive.
I also had trouble at school, especially because I was told I just had a low pain threshold and every woman struggled with the pain I had. Your daughter is very lucky to have a parent like you fighting her corner.
I’m not sure how far you have managed to get with a doctor? I was also put onto the pill at 16 but personally, this did not help me at all. This is absolutely not the case for everyone, and this is just my own experience, but for me, the pill made my periods a lot heavier, I bled for more days than not and was in a lot of pain. I tried most pills and in the end had to stop taking them. I only raise this because the pill isn’t right for everybody, there are other ways, tranexamic acid, for example, can help with heavy periods and talking to your doctor to try and get a referral to a gynaecologist, taking a diary of symptoms over your daughter’s cycle and explaining if you think it may be endometriosis could help too. Your doctor might also be able to write a note to school to explain her absence/reasonable adjustments.
I also recommend talking to endometriosis UK. They have a brilliant helpline and nurse service and can provide you with more information/how to advocate for your daughter.
Oh my goodness you have really been thought it ! i really feel for you , especially now i can see first hand the effects it has on life, and being so young and having to deal with it too
We were so very lucky to have an incredible doctor who put us on the path to diagnosis, she was amazing but she has since left and moved to Australia. The new one we have has been kind and supportive but not quite so on it. This week has been awful, so we are going back and hopefully will get some anti inflamatories or something as pain killers aren't touching it. Thank you for all of your advice, i've got a dairy on the go and will be wary of the pill. I was in the health food shop the otherday and was speaking to the homeopathist there, a young lady over heard and said she has the injections and she has had the best results for that. It is so tricky though as everyone's body is different.
My thoughts are with you !! You kindness has gone a long way today ! Thank you
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At last, a diagnosis that makes sense. Don't know whether to laugh or cry...
thinking about turning down surgery, eager to hear from others who may have experience with making this choice?
Feeling like a failure... normal? 
Feeling like less of a wife, mother and woman! 
How to get diagnosis
