Please tell me it's not all in my head - Endometriosis UK

Endometriosis UK

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Please tell me it's not all in my head

ash32 profile image
9 Replies

I have just found this forum and I feel like I need to share.

My pain started 5 years ago, I ended up at the out of hours doctor and he sent me to A&E with suspected cysts. This was completely dismissed once I got there (didn't even do an ultrasound and treated me like I couldn't be having the pain I described). My GP referred me for a ultrasound, which came back clear. The pain didn't go away and it tended to be in the middle of my cycle so the GP decided it might be Mittleschmerz.

Cue 2 years later and I eventually get referred to Gynae, they did external and internal ultrasounds which again were clear. The consultant said it was a general surgery issue not gynae and the matter never went any further. He did recommend taking a break from the pill, I followed this advice and ended up with 12 months of irregular bleeding and pain.

The pain became not as regular and there didn't seem to be a pattern to it.

Recently it has really ramped up again, sometimes it is halfway during my cycle and then the couple of days before and during my period. I was almost in tears just sitting at my desk in work, I was having bad cramps, these sharp shooting pains and also pain up my back passage. I have been referred again to Gynae but I am worried that it will get dismissed again. I am 32yo and doesn't seem right that I am in this pain and expected to get on with it. I have IBS so i get the bowel symptoms and i never have any energy. Somebody suggested that I have endo, I have always assumed that there would be a more definite pattern and regularity to the pain when you have endo.

Would be really good to hear from others made to feel it is all in their imagination.

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ash32
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9 Replies
Glondon1 profile image
Glondon1

Believe me it's not in your head Hun, these health care professionals just seem to be brushing off our symptoms as general women's health when it's much much deeper..right now I'm in pain and in two minds as to whether or not I should I take a trip to a&e because I already know what they'll say x

ash32 profile image
ash32 in reply to Glondon1

It's ridiculous isn't what we'll put up with! Did you go to A&E?

Glondon1 profile image
Glondon1 in reply to ash32

No I didn't, took some pain relief and decided to make an appointment with GP tomorrow x

ash32 profile image
ash32 in reply to Glondon1

Hope you feel better!

Disneygirl profile image
Disneygirl

This sounds almost exactly the same as my experience. years of being made to feel like you are just useless and complaining for the sake of it. I was diagnosed 2 years ago but had already been suffering for 10 years before they did a laperoscopy discovering all the endo. The problem was the pain didn't end there for me so I'm really sorry but I can't give any advice, all I can tell you is it is definitely not in your head. I think it's awful that so many of us lovely kind and understanding girls are made to feel like a massive inconvenience and like we are making excuses when the reality is we have been dealing with severe pain for years and keeping it together. You're doing the best you can so good for you and good luck with your diagnosis and treatment from here on in x

saffieb profile image
saffieb

I'm really sorry that you've been made to feel like this. It's totally unfair. It's certainly not in your mind. I have found IBS symptoms can aggreviate my endo symptoms which interfere with the cyclical pattern. If I am bloated or constipated with IBS then when the movement occurs I can feel a bowel movement for hours and its agony. The pain is worse at the start of my cycle but will occur at any point if I am having an IBS flare up. During the middle of our cycles we ovulate and you may also get pain associated with that. Even though your pain might have no cyclic pattern, it's certainly not in your head. Try recording the pain you're in over a few months and go bk to your gp. I know this can be scary as they have been dismissive in the past. Good luck 🍀

ash32 profile image
ash32

Thanks ladies, I think my issue is that sometimes the pain is manageable and I tell myself just to suck it up and get on with it. Then there's the times when it's agony and I get angry that we're expected to think this is normal and not worth investigating.

BeckyR84 profile image
BeckyR84

Look at my previous posts I am in exactly the same position as you! I am on very strong pain relief daily including morphine patches considering they say there is nothing wrong with me!

ash32 profile image
ash32 in reply to BeckyR84

I've just read your posts, absolutely heartbreaking you've been through so much! How are you feeling about the 2nd laparoscopy?

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