Advice needed.very worried :(

[pusheen]

Hello,

I am 25 years old.I have had agonising periods where I may vomit/black out since I was 13. My cycle however has always been between 25-31 days.I fully understand they arent meant to be like clockwork.Never had one thats been ok painwise. Somehow lately theyve gotten worse, I am now bleeding inbetween periods. This particular one started on the 21st day of my cycle - very severe back pain and lightheadedness.Problem is I know the bleeding I currently have which is too heavy to qualify as "spotting" is not my period.I know my body, I know this is not my period.

Spoke to the dr and she said she thinks im just having an early period and that "Im a worrier". I cant cope with 3 weeks out of the month being completely exhausted/in pain/unable to do normal routines.1 week for horrendous pms 2nd week for irregular bleeding and back pain and third week for heavy and excrutiating periods.I wish someone would listen and understand that my pain is not normal and my life is steadily getting worse because my whole life revolves around my menstrual cycle? Its tough for my partner aswell

I dont know what to do .Please help x

P.s pregnancy test =negative

[Hidden]

I was in your situation and because the GP wouldn't do anything to help I ended up going for a Well Woman scan with Ultrasound direct. They are £99 but it was well worth it for me because they found masses on my scan which turned out to be endometriomas. When I went back to the GP with the scan result I was taken seriously and referred immediately to a gynaecologist. It might be worthwhile considering doing the same because your symptoms sound very similar to the ones I had xxx

[pusheen in reply to Hidden]

Thankyou so much thats a really helpful option! Im going to look into it right now, bless you for your help xx

[Hidden]

Sorry to hear about everything you're going through. i had a similar problem I started my periods when I was 13 and it wasn't until I was 20 that I got diagnosed and that was after researching and finding and endometriosis specialist in Essex (5 hours drive from where I lived at the time!) and thankfully my parents paid for me to see him. (I'm 29 now and still dealing with stuff it doesn't magically go away, had my 5th surgery on Friday just gone) For 7 years I was back and fourth to my go, in and out of hospital blacking out with the pain the same as you. I was vomiting, shaking, hot sweats l, cold sweats, then I started getting pins and needles feeling all over my body and in my face and having panic attacks because I knew the pain was coming and I couldn't bare it anymore. One FEMALE gp even told my mum that I was making it up to get time off school!! (My mum went nuts then because she was always the one who was helping me and looking after me when I was ill) I could cope with having an exceptionally heavy period it was the pain that was the problem for me. It was controlling my life and affecting me at school, college, then uni, and I was having to take time off all the time.

I felt I got nowhere with the NHS it was a real let down until I'd been seen privately. However saying that I have been under NHS care ever since and they have been really good.

It sounds easier said than done but I would go back to your GP and demand that they refer you the gyne dept at your local hospital. Obviously something isn't right, whether it be endometriosis or something else. Some of the other ladies on here have posted details of the endometriosis specialist hospitals that you can be referred to but unless you know it's that it might be something else then maybe your local hospital will be the best place to start. It's a long process and appointments don't happen very quickly. Once you get a hospital appointment more than likely you will go there and discuss what's happening with the doctor, then they'll probably suggest you go back for some scans, ultra sound scans and internal ultra sound scans etc, then if they still can't find anything they'll probably want to do a laparascopic surgery. I'm not saying this is definitely what will happen obviously but this is the general route thing a take. I imagine you will have to wait a while inbetween each appointment as well which I know isn't great to hear but at least it will be a start and you can try to start getting somewhere with it all. You just need to make sure your gp refers you as you can't do anything else unless they do.

I really wish you good luck and I hope you get somewhere with it. I understand your frustrations and upset with it all as it is awful. So good luck and be firm with them! take care xxx

[pusheen in reply to Hidden]

Wow i genuinely feel comforted reading this. I was always marked as someone who was trying to get out of school even while i was vomiting into a bowl infront of my dad.lead me to believe this was all in my head right from the start will keep persisting for treatment thankyou xx

[applebird]

This happened to me; I bled every day for 18 months before my go would refer me to gynae. Go back say your periods are taking over your life, you're in pain and bleeding between periods, esp if it increases after sex. Say you want a referral to gynae preferably an endometriosis specialist. If they refuse see someone else and say you've had enough.

bsge.org.uk/ec-BSGE-accredi...

Start a symptoms diary; date in margin, list of symptoms along the top (I.e. Bleeding, pain (1-10), bowel issues etc. - see Endo resolved website for list of symptoms) then it's easy to tick those you're having on a particular day. If you use excel it's prob quicker to do it there then print out or you can do it by hand, have a section for other comments like if things are more severe or anything unusual for you. Or you can just have a normal diary and write out what's going on, up to you. All of this will be useful when you see a consultant.

endo-resolved.com/symptoms....

Could be a good idea to go for well woman scan. Though most Endo will not show up on ultrasound - things like an endometrioma will. The only way to diagnose is by laparoscopy, sometimes can be seen on mri too.

As another poster mentioned you can go private; if you want to it is about £150 for a consult. You could look for a doc (in the bsge list above) who works at your local Endo centre - then find out where they work privately in your area. Bring your symptoms diary etc to the appointment. If they suspect you have Endo they could do something like write a letter to the gp stating their opinion, which could give gp a kick up the bum and quicken your progress through nhs - if consultant has already seen you then you could be booked straight for lap. Just ask consultant's advice, tell them everything even if it's embarrassing - they will have heard it all before.

Good luck xx

[Sarahlloyd78]

Hi

Poor you!

I would try a different doctor. The first doctor I went to see about similar symptoms to yours was the doctor assigned to my family when we moved to the area. He just fobbed me off and didn't seem concerned. I wasn't convinced as like most of us women we know our bodies and how we feel at certain times of the month.

I decided to opt to see a lady doctor - just to see if she would take a different view on my symptoms which she did. So it might be worth seeing a different doctor.

Hopefully you'll have some answers to the horrible pains etc soon x