I've been dealing with extremely painful periods for years and am pretty sure I have endo symptoms. I'm currently trying to get a diagnosis but don't know when to stop.
A couple of years ago I had an ultrasound that came back clear so the GP said there's no point pushing further as the treatment is the same – so I left it and managed to convince myself the pain is in my head. I've since gone on the pill (with no breaks) and, whilst I still experience pain, it is much much more manageable.
Then last year saw a video from someone showing their experience (lying on the floor in a ball, rocking back and forth, throwing up etc) and it shocked me as it was my exact experience and convinced me to try again.
I've now been referred to a gynaecologist. I've had 1 appointment in which I got extremely emotional as he didn't ask me anything about my experience/symptoms and said I was probably just one of those people who had bad periods/it's unlikely we'll find anything.
He sent me for another ultrasound, which again came back clear. I was told during the ultrasound that because everything was clear if it was endo it was very mild.
So, I have a follow up tomorrow and can't decide whether to push for surgery or not. I think the doctor will try persuade me otherwise (in my last appointment he was incredulous that I would want surgery). I can't help but feel intense guilt if they found nothing. Is it worth putting myself through surgery even if it is mild?
Also if they find nothing it'll make me feel like I've been lying about the pain etc. Thanks for reading
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hattie1108
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Identical experience. I’ve been told repeatedly “oh but we treat with hormones whether we find it or not, so what’s the point of doing surgery?”
I had a Gynae appt yesterday where I also got very emotional because I was sick of her pushing depo on me. I want to know either way, I don’t want to indefinitely take contraception to mask something that’s either getting worse or might even not be there at all. The only thing that seemed to stop her in her tracks was asking “so, are there not any benefits of laparoscopy then?” Because they’re obligated to tell you all pros and cons.
I have crippling periods, I feel sick, I rock, I can’t stay standing up, I’m dizzy, I have 2am baths, they wipe me out. While she understood this, again, she said “even without endo, we treat heavy period conditions with hormones”
She said “we seem to have [depo] treatment that’s working, so I don’t see why we should change that” and I had to say that it only works as I don’t have periods, it’s all just paused, as soon as I’m off it, they’re back again. I can’t stay on depo forever. I’m pushing for surgery so I know if I have endo, I don’t want to walk around believing I have this horrific disease if I don’t. I want it removing if it’s there. I want to rule it out, surgery might not work, but for a lot of women, it does. Honestly you’re not alone, I’m having the exact same problem
Thank you for your reply – it's so good (though very frustrating and sad) to hear that I'm not alone in my experiences. I did push for surgery today and I'm now on the waiting list so feeling very nervous but hoping for some answers. It was a better appointment than I was expecting, though could I still feel them trying to persuade me against it. I hope you manage to get somewhere as well!
Hiya Hattie1108,It is so incredibly frustrating trying to get answers and a diagnosis unfortunately it appears the battle is endless, begging for appointments, waiting for appointments, not being taken seriously by so call medical professionals….
My advice would be to never give up, hold your head up high and be strong and confident about what you want even if you have to ask for a second opinion. You have to keep pushing and even if you have laparoscopy and they don’t find anything then at least you would know and can then be investigated for other things, you have nothing to feel bad about, you have pain and you want to know why. You know your own body so you know if something is wrong.
Thanks so much, I'm now on the waiting list for a laparoscopy so fingers crossed for some answers 🤞 everyone's replies on here helped me have the confidence to say that's what I want so thank you xxx
Hi Hattie. I'm so sorry to hear that you (and others) have had this experience. You are always entitled to ask for a second opinion. As I understand it (from a specialist nurse who set up an endometriosis clinic in Norfolk) it doesn't always show up on an ultrasound, especially if that ultrasound isn't conducted by a specialist nurse sonographer. It would be more likely to show up on mri. The pain that people experience doesn't always match to the degree of severity if the disease so even if you had 'mild' endometriosis it could still be incredibly painful. I obviously have no idea if it's endometriosis but there is clearly something going on and you are entitled to treatment. If you are not already referred to an endometriosis specialist centre can you perhaps get your GP to refer you to one? You can actually ask your GP to refer you to a specific centre in your area. The main issue as I understand it with surgery is that they try and remove all the infiltrations but they leave scar tissue which can cause adhesions and they can grow back. That might be why Consultants are reluctant to do surgery and any surgery comes with risks due to the general anesthesia. That said, you are entitled to have a decent quality of life and be able to work. I would be very clear about how this is affecting you and keep pushing for some treatment. Even if it is not endometriosis, throwing up with pain is not 'just bad periods'. Best of luck and don't let them fob you off.
Thank you for this information! Yes it seems like such a difficult thing to get diagnosed/treat even with the surgery and I can completely see how surgery is complicated. I had a better experience in my appointment today and I have now been put on the waiting list, but yes I'm feeling pretty nervous about it all – whether it's the right thing to do, the possibility that it'll achieve nothing etc. But anyway, I will cross that bridge when I get to it!
Firstly, Endo can not be seen on a scan. You need a laparoscopy. Never stop pushing for answers an never feel guilty for wanting answers. If your consultant doesn't want to do the surgery, then find another consultant who will be willing to do it. To be honest, the sound of this consultant isn't filling me with confidence. I saw a consultant back in 2015, had a laparoscopy and they 'didn't find anything'. Years on I have just been diagnosed with stage 4. Even my private consultant was questioning my surgery from 2015 - I think it was there all a long. Sometimes you don't just see it, you have to search for it. Make sure you have a consultant that will look in great detail and not just do the surgery to tick a box.
Thank you for this, it really helped! I did indeed push for the laparoscopy and am now on the waiting list. My consultant actually said it wouldn't be him doing the surgery, so I'm hoping I'll get more information about who is doing it/where it'll be. Feeling very nervous but hopefully getting somewhere now x
The ‘professionals’ always try to put us off pushing for things or going for surgery because they want the waiting list down. My advice is yes push for it because once your on the list for surgery the wait is long anyway and has got even worse since covid! I’m on the list waiting for surgery to see if I have endo or not and I’ve been waiting for years, I was on the list before covid and I’m still waiting now… they always try to say oh it’s probably just a bad period or whatever crap but listen to your body. You know best and often they will try to put u off things to get rid of u and off their list and off the gynacology list. Also don’t feel guilty if they did surgery and don’t find anything because you deserve to know and should to listened to.
oh wow, I'm sorry you've had to wait so long! Well I'm now joining you on that list... which does feel like a bit of progress, though I'm pretty nervous about it all 🥴 Do you know how much notice you're expecting to get before the op?
Keep pushing! Don't let any doctor try to minimize you or your pain. I just got my diagnosis last week. All my ultrasounds were clear, but my laparoscopy showed my uterus is attached to my bladder by endo and is lifting it up, along with endo elsewhere and possible Adenomyosis. I need surgery which I have been referred to someone more specialist for. The gyne that found it out right said she didn't want to do it, and guess what, if she hadn't my endo would have gotten worse and my surgery more complicated. They don't always know best.
And I just want to say, if they don't find anything it doesn't mean you don't have endo, and if you have a tiny amount, it can be more painful than stage 4 in another person. People have invisible pain all the time; migraine, back pain, they're not made to feel crazy or dubbed a liar because their problem isn't visible in a scan or test result.
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