Waiting too long..

[Annmurry]

hi all, I have had really bad periods from the age of 9 to be point where I actually couldn't do anything. I would have to go to sleep just so that the pain would go away and sometimes I couldn't sleep. So all those years I would go to the doctor and say I'm in pain and as I suffer with depression they would always bring it down to anxiety. Now considering I do suffer from anxiety I knew the pain wasn't from that. So 22 years on I'm struggling with pain in the middle of my tummy the side. Pain in my legs. I had my little boy last year and the pain eased while I was pregnant now my periods are back again. The pain is back with vengeance. Am I being over dramatic or is this really bad to be this ignored? I have been referred for a gynaecologist and have a scan on Monday, but the pain is getting worse, I'm worried its serious and too many years too late.

[JeanOsborne]

Hi you sound like me except I've never been able to have children. Started periods at 8 years old . Would be rolling round the floor screaming in agony to be told it was just normal for me or it can't be that bad or made to feel like I was making it up.

It wasn't until I was 40, married and had been ttc for 4years that a new GP decided something was wrong. He suspected fibroids. Had ultrasound in October 2014 where it showed a 6 cm endometrioma. Had diagnostic lap in July 2015 where it had grown to 11cm. Both ovaries were severely damaged, both tubes were blocked, bowel was badly stuck to uterus pulling it backwards and uteras were also stuck to uterus.

Had TAH, BSO and excision in March this year. And feel so much better.

I know that had someone believed me this could have been avoided and I probably could have had children.

You are not being over dramatic and no you shouldn't have been ignored all this time. Hopefully now you will get the help that you deserve. I want you to know that you are not the only one to have suffered at the hands of ignorant and neglectful doctors.

Do you know whether your gynaecologist is a general gynaecologist or are you with a BSGE centre? I only ask because the chances are that if it is endo, then it is more than likely to be severe(stage4), as it has been left so long untreated, and must only be treated at a BSGE centre. This is nhs guidelines.

So if you are with a general gynaecologist and they offer a lap you need to make sure that if they do find that you do have severe endo that they don't do anything, but instead refer you to a centre so you can then get the best and correct treatment.

If you have any questions I'm more than happy to try and answer them if I can.

I'm sorry you are going through this but you've come to a good site for support.

I don't think I could have got through this without the help and support of everyone on here.

I'm here any time you need to talk.

Take care.

[Annmurry in reply to JeanOsborne]

thank you so much for your reply. I actually found a post I wrote on here two years ago of my old doctors ignoring me. I think my scan on Monday decides which way they will go. My auntie suffered the same and was unable to have children. It took 5 years to discover hers. She also found that it can run in the family. She has told me to mention all this. I think it may have spread as my bowels are really bad. The doctor a couple of weeks ago pressed on my sides where it hurts and then pressed the middle and I almost screamed the surgery down and then the weekend just gone. I was rolling around in agony. The thing is I don't know if my pain is serious enough for them now. Cos as soon as they read mental health they're minds change. Which is sad

[JeanOsborne in reply to Annmurry]

Is an ultrasound scan you are having?

[Annmurry]

Yes. ive had one before, just hope something comes up, because although I don't want anything wrong, I cannot live like this

[JeanOsborne]

Endo very rarely shows up on ultrasound unless it is very severe and even then it will depend on the experience of the sonographer. So if it shows nothing don't be put off.

You need to push for a laparoscopy, as this is they only real way to confirm endo.

Whatever happens don't give up until you have answers.

In regards to mental health I do know what you mean . I've suffered with depression for many many years.

It's thought that the inflammation that endo causes may actually be a contributor to depression.

I must admit that since my op I have felt more stable if that makes sense.

Yes definitely mention family history of endo and if you're not already , make a diary of symptoms to show how it effects you..

I wish you luck and if ever you want to talk I'm here.

[Annmurry in reply to JeanOsborne]

thank you. Yes mainly I feel depression has increased most likely because I feel no one is really listening to me. People use to say even family members. She's always ill. She's a bit of hypochondriac and it's like no I have been in pain for years and been ignored by each and everyone of you.