Really Struggling 😰: Hello Everyone, I... - Endometriosis UK

Endometriosis UK

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Really Struggling 😰

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Hello Everyone,

I have not been diagnosed with endometriosis, but I'm currently struggling so much with symptoms and I want to ask for advice and whether anyone here has had a similar experience.

I will try to keep this as short as possible but I appreciate anyone who reads or has any advice for me.

I'm 26, no children/pregnancies. I have never had a regular period. I used to go months without any and have always struggled with heavy bleeding.

The past 3 years or so have been extremely difficult. I started with extremely heavy bleeding more or less each month and in the past 9 months I have had constant bleeding. It varies from light spotting to bleeding so heavily I can't leave the house. But there is some bleeding every single day. It's completely erratic and I have no warning when I will get a sudden heavy bleed. Might last a day, might last a week. I can't cope with this anymore.

I have taken tranexamic acid the past 5 or so months but it seems to lighten the bleeding while I take it then the bleeding is even worse when I stop.

I have tried cerazette for just over 3 weeks but am currently in so much pain and experiencing an extremely heavy bleed right now that I have decided to stop taking it. I don't know whether it's the tranexamic acid or the pill that's causing the pain.

I have had a pelvic ultrasound that has only shown small cysts and an enlarged left ovary.

My GP has said the cause is dysfunctional bleeding and that a referral to a gynaecologist is not necessary as they will just try to treat me with the same medication or coil.

Do my symptoms sound similar to anything any of you have experienced? My doctor has never mentioned endometriosis so I feel stupid even bringing it up.

Thanks in advance for any advice 😰

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Hi, I am 24 and I have endo also I get cysts and have had it for years now! I totally understand what your going throw.

I have the heavy periods never knowing when or how long for and always painful, I also have pain even when I am off. I am currently taking zapain and mefenamic acid which helps every now and then but not all the time, also makes you tired and can knock you out!

The only thing that you can do is keep going back asking for pain killers and trying lots of different pills or coils, nothing more can help apart from seeing gynaecologist just in case you do have it and then they may just need to zap it and it could be all good. Which I am current going throw.

I feel you should totally bring up endo and go see the gynaecologist! It was the best thing to have happened I have had 3 operations a year but was pain free for 2 years but sadly having to have another operation.

I hope this helped.

C2691 in reply to Emgriff10

Thank you so much for your reply. Just feel like as there is no one in my family with endometriosis, they might not listen to me. I've read so many stories about people taking 7+years to get diagnosed. I feel stupid bringing it up but I think I will definitely mention it at my next appointment. Thank you 😊

Keep a pain diary. You can google on. Scans don't show up endometriosis that well so keep pestering your doctor to refer you for a laporoscopy.

C2691 in reply to sanchia46

Thank you. Just so hard when the dr is saying no, you don't need a gynaecologist, but according to google and this forum, I do! 😩

Honestly, get yourself referred to a gynae doc, ask to be tested for endo which does mean a laparoscopy. That's all I did, I gave up on my GP's, going back and forth all the time. I had my operation 8 weeks ago, and it's a confirmed endometriosis. I'm only 21 and so happy I got this diagnosed this early, I just kept nagging x

C2691 in reply to Abs123

Thank you, for your reply. Did you have similar symptoms to me at all? With the heavy un expected bleeding or were your symptoms mostly pain related? X

Abs123 in reply to C2691

No I had it all. Was going back and forth for 2 years! Only contraceptive that works for me is the patch, it really does keep on top of the pain! My op was about 8 weeks ago, for about 5 weeks my pain was gone, and it's starting to come back again 😫. But good luck with everything and get onto those gynae doctors! Xx

Bless you, your experience is similar to mine. It's so unfair that you have to put up with this pain and live your life around medication. I'm 22 and know all too well that doctors will dismiss symptoms and not listen. I think you're being fobbed off with hormone treatment that will suppress things rather than dealing with the cause, leaving you not knowing what is going on in your body. Definitely keep a pain and period diary, don't be afraid to persist, ask again and again for a referral as your scan results are not putting you at ease, get some stronger medication, see all the doctors in the surgery if you need to until you find one that will refer you. You know your body better than anyone and the cause of your pain needs to be found. I ended up being so desperate I had a private gynae consultation then the consultant wrote a full report, assessment and recommendation to my gp so they had to act on it. The process is unbearably slow and sometimes it feels like all control is taken away from you but you will get your answers eventually. Take care xxx

C2691 in reply to Char11

Thank you so much, I feel like it may have to come to paying to go private with me too. I find it incredibly difficult to just hear the doctor say my diagnosis is dysfunctional bleeding and there is no other reason for it. So far it's been 2 separate GPs who have told me there is no need for a gynaecologist. 😩

Char11 in reply to C2691

It's awful isn't it, I felt so mad having to spend my own money because I wasn't getting the care I needed on the nhs :/ however you can choose your consultant and it definitely speeds up the process. Oh bless you, this sounds so similar to my experience! Dysfunctional bleeding is just one part of it, they don't know for sure that this is the only problem. I really hope you get the answers you need soon, you shouldn't have to put up with this

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