Endometriosis UK
36,146 members32,125 posts

Very Frustrated!!!! :(

Hi girlies,

Hope this finds you well and as pain free as possible!

So for a while now I've been having problems with endo and my gynae's (yes I've gone through a few) don't seem to want to tell me what's going on. Well, I've found out a lot from the little bits they've given away and found out that not all is as peachy as they say it is.

To start off, I have had an MRI which said I have a retroflexed womb. This on it's own causes many problems (like not many results on google lol) I've found out that you have to have internal scans all the time to investigate as they cannot find it due to it being folded back on your spine and also if I were to get pregnant, I would have internal ultrasounds until 20 weeks gestation as the baby won't be seen until then which on average is when it flips forward. Also if my womb gets caught on my spine and doesn't flip it can cause miscarriage, still birth or stunted growth.

Also on the MRI they found out my womb was smaller than it should be by 1.5cm, making it 3.5cm instead of 5cm. I was told that it was because of the implant but no one else has said it's because of this and on the internet it is nowhere to be found. So I googled what causes a womb to be small and it's just because my womb didn't form properly in my mum's womb when she was pregnant with me. So there's no scary cause behind it BUT it means that my womb won't stretch enough for me to go to full gestation and I will give birth around 27 to 32 weeks, so about 6-8 months pregnant. Hopefully my womb is stretchy and this own't happen or at least I get to 32+ weeks.

Yet another thing is I've been struggling with really bad lower back pains radiating into my hips and thighs. I sometimes feel like I'm losing circulation around my calves and I've been told this is muscle related and nothing to do with endo. Again they were wrong as I've found out its caused by endo on the sciatic nerve. This is rare but quite common at the same time, I know that's contradicting but what I mean is, doctors don't diagnose it because they don't know it grows there so when they do, they say its rare to get it there but in actual fact alot of us have it on the sciatic nerve but don't get it diagnosed meaning it's quite common but doctors think its rare.

So ladies, if I were you, I'd mostly take what the doctors and gynae's say with a pinch of salt as I've always told them what's wrong with me and then they've had to reluctantly agree with me. You know you're bodies better than anyone else does, you're in sync with yourself and you know when you've got a cold, no one needs to tell you that so why do we always rely on doctors to tell us what, in our hearts, we know is true.

I hope this has helped at least a few of you beautiful ladies and that you can all find something that will help you soldier on.

Thanks for reading,

Leya :) x

7 Replies

Thankyou Hun and yes iv had the same problem, iv been told i have Endo but that's it!! Know one wants to tell me were or what the bloody hell is going on, as i know what ever is happening to me isn't normal, but they just like to shove a crap load of medication in you and send you on your way and not explain a thing to you.

I hope they finally give you the answers you are looking for.

I have found that most of the time doctors don't know what they are dealing with or talking about, so it becomes really confusing when you have several different doctors all telling you different things that contradict one another.

Sorry for my language they really irritate me.


No worries about the language, I have given up on doctors and gynae's and I've gotta go in Feb to see one but if I do go, I'm gonna ask to be discharged as she won't give me notes about anything she's found out. I stopped taking meds about 2 months ago as they just weren't helping so like I say, we know our bodies best and we shouldn't listen to our docs if they say everything's fine as there may be something they're not telling you, like with me, it was because of the man doing the MRI who told me about my womb being retroflexed and being a lot smaller than it should be, when she spoke to me she said everything was normal. Hope you get some help though and that what they tell you is correct and not just fobbing you off :)


Thankyou Hun and its sad we have to go threw all off this with different doctors and them lying to you just so we can get a bit of help to make us feel better and to find what the cause of it all is. I hate the system they seem to be working on at the moment. They just don't listen to patients at all and they always look statistics, not what is actually happening


Exactly, I was watching Casualty and they were going on about how GP's fob off patients or the waiting time is insanely long and so people go to A&E to get help that the GP's should be giving, but they just don't care enough and unfortunately I think way too many hospitals are becoming the same way.


Yes they are and its sd really, we need more passionate people back in doing these jobs and people that enjoy what they do and care for the patients that they see every single day rather than pushing them aside and no one gets any were


I can't understand why the consultant won't let you see your notes, mine has shown me after I started asking what stage I have and where it is as no one told me after my lap. There wasn't a lot recorded which was frustrating but I was glad just to see it. The ladies in my support group mentioned to me about PALS. It might be worth getting in touch with them if you feel the gynae is hiding something as you can access your notes through them x


I have been in touch with PALS alot about negligence, not being told their would be internals done without permission and this also and all they say is "I'm afraid there's nothing we can do." So I have got fed up with that, think I will just sit in the doctors office until I get what I want.


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