Endometriosis UK
34,657 members30,912 posts

At a loss, any advise would be greatly appreciated

I'm 25 and have been suffering from terrible periods for the past 3 years (ish). They seem to be getting worse and worse with every passing one. I've been on every type of contraceptive available (bar the injection, however I am a genetic migraine sufferer so I am not allowed this as it causes migraines). I've had the coil, implant, mini pill and combined pill. I've been palmed off by every doctor I've ever seen. One suggested endo, and sent me to a specialist who basically told me I was too young and he wasn't prepared to do anything else about it. It has gotten to the point where I can no longer have sex without being in awful pain, I can't even use tampons anymore because of the pain.

I get pain on my front, in my back and the top of my legs (this is a new development within the last 6 months or so). I am terribly irregular, however this has always been the case, and my periods are so heavy for so long that I have to take iron tablets daily to prevent anemia (again) After passing out through a single glazed door, I have found it easier to stay on top of my levels rather than do as the doctors would prefer and wait until my levels are non-existent before doing tests (as they have done three times now.

I genuinely am at my wits end, currently laid here with all the usual pain (yet without a period).

Has anyone else experienced anything like this? I really don't know what else to do, other than taking out private insurance and trying to get further towards some form of diagnosis that way.

The NHS doctors I have seen (in three surgerys and two counties) just seem to make you feel like you're making the entire thing up and you cannot possibly be as bad as you say.

2 Replies

Demand that you GP refers you to an endometriosis specialist. There is a list here (text list below the map). Some are private but look for the ones with NHS in the email. bsge.org/clinic

You GP can not refuse a referral, although they may try.

I had years of being told it was just normal period problems, IBS, wasn't eating enough fibre etc. I wasn't diagnosed until I was 47 and then only after I realised what I'd got and got the specialist list from this forum.


It's shocking that this tale continues to be told! I was fobbed off at your age continually, finally diagnosed 12yrs later!!

My symptoms became so bad, I had to become an advocate for my own health. I suggest serious diet changes and lots of foods, herbs, and spices that are great to reduce inflammation. Avoid gluten and excessive amount of sugar. I also avoid diary and red meat.

Find a good specialist near to you and request your GP refers you. I travelled two hours to mine but it's worth it to meet someone who knows what your having to cope with. Don't let them get you down or fob you off. If you're unhappy with your treatment find another. A MRI by a specialist centre will show deep Endo but a Laparoscopy is really the only way. But I can't stress how important it is to been seen by a specialist in the field, who are trained to spot what an average gynaecologist would miss. Good luck and I hope you get the help you need soon.



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