Can anyone please shed some light?

Hi ladies, will try not to make this too long. I've had awful pain with my periods since a few months after they started. Been in and out of my GP with various strengths prescriptions, mefenamic acid, naproxen, cocodamol etc. My GP believes I have endo and referred me to consultants who reluctantly did a laparoscopy nearly 2 years ago.

Apparently they found no sign of endo, whcih i found rather gutting, as this pain has been going on for 10 years now, and it gradually gets worse. Where i used to have agony with my period for 5-6 days and then dull pain for a couple, a period is now agony the whole way through, i get ovulation pain, build up pain and pain after. I had the mirena fitted in april and was getting strong contractions every day and bleeding constantly (though not heavy) until i had it out in august. now on cerazette which has (for the time being at least) stopped my periods but i'm still getting pain.

My main symptoms are: pain throughout the month,agony with a period, short cycle (27 days max though it differs quite a lot) and a longer than average bleed (normally 8-9 days), bleeding after sex, pain with sex and occassionally cramping after, sometimes dark blood before fresh (? weird...), lower back pain and a burning hot pain in my front pelvis, sharp pain in groin lines, sometimes a sticking pain that spreads up my vagina, and is crippling. I also have a low blood pressure, though i'm not sure if that's related, and hair loss :-( I can actually get handfuls of hair out most days, though i'm never left with bald patches thank goodness.

I have just moved so changing GP's hoping for a second opinion, but does anyone have any idea?? The consultants just look at me and sigh like I'm making it up or wasting their time, but I'm sure if they felt like this even half the time they would not be quiet about it.

Any advice or experience would be much appreciated, I'm newly married and at my wits end. My husband is really helpful and understanding, such a blessing but this is no great way to live! Take care x

5 Replies

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  • Hi

    Sorry to hear you are going through so hard time. I know how it feels to be newly married and not be able to have some fun with your man, my probs with endo started within months after I got married last year, quite tough time!

    Find a good endo specialist/gynae and if you can afford it go private so you wont waste any time at all. GPs dont know anything about these things most of the times and we have all been there when you feel that the doctor doesnt care or doesnt know what to do.

    Best of luck x

  • It took me 17 years to persist and get a diagnosis. Keep going. You know your body!!

  • I finally had a lap in June and was told there was no sign of endo, I had adhesions but they thought it might not be endo (wtf!), then they did an MRI and decided actually it was stage 4 endo! Sorry you're going through this, but please keep trying and don't let them fob you off x

  • Hi ladies,

    Thanks so much for your responses. jojo777 - I'm looking into going private at leats for a consultation, have jsut foudn the phone number of a specialist not far from me so will give that route a go.

    17 years is such a long hard wait! You are an inpsiration LAE33, will keep pressing on.

    And doodah - how did you manage to convince them to go ahead with an MRI? I think thats my next route, before I ask for a 2nd lap. Thanks all for your encouragement, I will keep fighting!!! Did any one of you find a way of convincing them to listen to you/ did something you say make them sit up and realise that they needed to look further?

    My next hosp consultation isn't til Feb so I'm going to try this private consultant first. XX

  • I have pretty much the same symptoms as you, they found a couple of small patches of endo which were removed and didn't grow back (thankfully). My symptoms didn't go though and I've now been diagnosed with adenomyosis which they would also find with a MRI or sometimes an internal ultrasound. Hope this helps x

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