So Much Pain! Seeking advice from people with endo x

So today I had to ring up work because of my period because I just couldn't move. I crawled upstairs when I needed to vomit. I've had severe pain and vomiting since I was 12 and my GPs gone from "it's because they've only just started" to "you'll be unsettled as you reach the end of puberty" and "it's your age". I'm 21 next month. I got sent for an ultra sound for polysistic ovaries (external) about a year ago. They never told me my results.... Oh, and although neither of the GP's have bothered to even touch my belly, nevermind any examinations I got told I probably have a small cervix and so the uterus struggles to come out so the cramps are worse and it will be fine once I have kids. (Bit rude, might not even want kids) I've been put on several types of the pill and my body did not react well. The gp doesn't really listen, gives me mefanamic acid, tells me I'm stressed and that I'll just have to "put up with it". So I always think I'm just being a whimp and push my way through the day but my mum admitted to me that she thought hers were bad but then she sees me and is shocked and thinks I should ask to be referred to see a consultant privately.

I've spoken to pharmacists which is how I found out about endo.

The other symptom I've read about is pain during sex but I don't know if I have this because I'm not sexually active and won't be any time soon.

So my question to you ladies is do you think going private? I wanted to ask this community I'm worried I'll spend all that money for my GP to be right -_- I know you're not doctors but many of you have had endo for years and wondered what you thought.

9 Replies

You shouldn't need to go private, with your symptoms your GP should refer you to a gynaecologist. Have you mentioned to your GP that you think you may have endo? X

I haven't only due to out GP having a shut down when you tell her what you think you have. My mum has degenerative spine where her discs slip frequently. My mum went to the Gp and said she thought another one had gone (shed already had 4 go previously). And the GP said no you need more exercise for your arms (my mum was stacking shelves for a living). However when she went to A&E a few weeks later she was told that she shouldn't be able to walk and that she had to wear a neck brace because of a very dangerous slipped disc!

GP s can be so annoying! But I may just go for it anyway and see what happens as clearly my other methods have not been working x

You have to be pushy with some GP's or go to another one. Ive been bolshy and told them what to write to the bsge centres too. It's such a shame to hear about what they say to you. Write it down and complain, especially when you do get a confirmed diagnosis, which I'm sure you will. Do not give up and you do not need to go private. X

Go back to your gp and tell her you want a referral to a gyne, try to get one on the bsge specialist centre list, but if you can't then a general gyne is ok to start with,

Say you think it could be endo and you need it to be investigated, if she says it can't be due to any reason, tell her you want her to put on your notes that she has ruled out endo and why?

She won't be able to do this, as there is no way of knowing until a laparoscopy has been carried out,

Good luck

Also have a read of a lady called Lindles posts on here

Sounds like a plan as she's a right arse! Thank you! xxx

You don't need to go private until you've tried another GP or sympathetic practice nurse (and yes, I think you need a gynae referral). Others have mentioned the bsge centres - if you can get to one of these it's a really good idea.

I was initially told by one GP at my practice that I had IBS and was menopausal and that's why my periods/bowel problems were so bad I couldn't leave the house. When I asked if it was endo, he said I didn't have the symptoms.

Another GP at the same practice immediately said endo and referred me, and not only do I have it, but it's severe and I've most likely had it for years. Gp's get this wrong all the time. So don't let that one GP put you off. Please try to get in to see someone else as soon as you can. It might be worth asking when you make an appointment if any of the GP's or nurses have a special interest in female health, as they will be more on the ball with this.

Good luck. x.

Def go to another GP. I changed GP practices as my old one kept saying I probably had a sti!!! I was so insulted. I'm so glad I changed Drs as my new one said straight away it could be endo and referred me to the hospital that day and a few months later I had a lap which found I had endo and not sti. You need to go with your gut instinct.

Like most of the ladies have said you have to be quite pushy with GPs. Tell the doctor you want to be referred to the hospital asap.

Hi there! Well the GP are usually ****. I had pains and everything for a long time and they never took it seriously, and they wouldn't even touch my belly. But the truth is that you won't know if she's right or not until being checked for it. I understand that she doesn't listen to you and your complains, but you might ask for checking your blood for CA-125 and CA1-99. These are cancer cells that usually are high in endo patients. Obviously, it is alarming because it can also mean cancer, but if your GP finds high values for these cells s/he'll have to check if it is endometriosis or what. You can read more about this online through a google search. If you're able to convince your GP to check these then you'll get your doctor's attention to check what are the reasons for having high values.

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