New, undiagnosed, help!

[Mumof2boys]

Hi,

I'm 21 and I've been having awful periods since they started, really heavy and painful, as a teenager I would often pass out and throw up from the pain. It all got worse when I had my first son, my periods got heavier and much more painful, I would be bedridden for the first few days. I fell pregnant again and we had another son. After he was born, it was yet again worse, Now however I have horrendous pain when I am not on my period, I am in pain most days, I bleed between periods, sometimes spotting, sometimes as heavy as my period. Sex has become painful and I bleed afterwards often.

I've been to the doctors, but been fobbed off with mefenamic acid. They finally did an ultrasound after a lot of pestering, and found polycystic ovarys, but told me that they aren't causing problems and that I do not have PCOS (which I can agree with as I don't have symptoms of that)

They want me to have swabs done, which isn't a problem, but I am unsure as to whether I can have them when spotting or bleeding as this is making it difficult for me to make an appointment. I feel like they aren't taking me seriously if I'm honest.

I'm bleeding now, my period isn't for a week and half (I'm on the pill so I'm pretty sure of when it will arrive) but I'm bleeding thick dark brown blood with very dark brown/ black clots in it.

I feel so lost, like no one is taking me seriously, like they just think that I am making a big deal out of my pain. I feel like the only person who really believes me is my husband, and that is because he is there to see it and has to pick up the pieces when I'm in a lot of pain.

Where do I go from here? Do I have Endo? Am I dying?! (okay not really but that is what it bloody feels like!)

[Cloudyrain]

Ah honey its horrible, and I think we have all been there.

As for the swabs (which I'm hoping includes a smear, regardless of your age it should always be done when people report unusual bleeding) that's pretty much standard procedure, as was an ultrasound. I would expect that once that is all done they will look at referring you to the hospital to see a consultant. Oh, and they should be able to do the swabs when you are spotting, as long as you aren't flooding.

Don't discount mefanamic acid (quite commonly given to endo sufferers) taken right it can give some relief. Taken with tranexamic acid and paracetomal it does help.

What you describe sounds like endo, but no one can tell until they do a laparoscopy. Unfortunately it takes an average of 7 to 10 years to get a diagnosis (it wad probably more like 13-15 years for me, and more for other ladies).

When you go back to your GP take a diary and go through exactly when you have been bleeding and how bad, and when the worst of the pain happens.

Good luck!x

[squidgy]

Oh bless you! I agree with what Cloudyrain said above and will try not to repeat what has already been said.

It took 14 years for me to get a diagnosis! That included being fobbed off by a gyno too who said it was just women's pains and some suffer more than others! Fat use that was! Not until a few years ago, aged 27 did a nice gyno say yes from what you describe you most likely have endo! What I am trying to say is, please do not give up pestering your gp! I know it is a pain and makes you feel a nuisance and that maybe you should just try cope and not bother them. But do bother them! It will take time as they do the swabs, ultra sounds etc. But remember you have a right to ask to be refered to a gyno. You know your body better than them.

Re the Mefenamic Acid, I too was prescribed this. Found it to help a little, but struggled to take the tablets as they are so huge! What I can say about them, which you may not have been told is to make sure you take them with food ( a main meal, not just a biscuit)! Or they will make you sick! You can also take paracetamol at the same time as the mefenamic acid which helps it too.

I am glad you have a supportive husband as especially when suffering with endo we all need someone close who is understanding. It is an emotional and physical rollercoaster ride.

I hope you get some answers soon and some brighter days are just around the corner for you x

[NewNana]

Bless your heart it all sounds so miserable for you. As the others are saying, keep up the pressure no one else will fight your corner, if you don't go back to dr they assume you're ok. The dark brown blood sounds classic of endo and the pain. Ask dr to be referred to specialist and if possible your husband go with you. Ultrasound cannot detect endo. I had 2 ultrasounds, a ct scan and a colonoscopy, they said prob irritable bowel but I knew it was gynae. Mention to the dr that u wonder if it may be endo maybe they need a push to consider it! Best of luck x

[Shellg934]

My diagnosisstarted in January last year but I have been having symptoms for 4/5 years. I hadn't heard anything since my ultrasound last summer and was also single since then so never chased it up as my problems occur mostly during and after sex. Now that I am with a new partner (3 months now!) I went back to my gp very frustrated. I have restored to using my private health cover through work and was seen by a specialist within a week and had my lap a month later. Personally, if you can afford it or have health cover I would recommend the private sector. If you have ever watched embarrassing bodies on channel 4, the patients only seen to get their answea after being referred to a private consultant!

I hope you get your diagnosis sooner rather than later.

X

[Mumof2boys]

Sorry for taking so long to reply. I've been in horrible pain. I'm still bleeding. I've been bleeding nearly 2 weeks now. I'm am off to the doctors tomorrow. I don't mean to discount the mefenamic, it gives me a LITTLE relief but it is still so painfull. I puked from the pain this morning. Still off to the gp in the AM, we'll see I guess!