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Possible endometriosis, what should I do next?

Posted , 3 users are following.

annakaty
annakaty

Hi, I am new to this group but I have come here for advice as to what to do next as I am getting completely desperate about what to do.

I'm 21 yrs old and my periods first starting at age 14 they have always been excruciating. Paracetamol and ibuprofen never work although when I was younger a low dose of cocodamol would help as they weren't as bad then.

Now they have got even worse and I'm not coping with it anymore. I went to the GP early this year who told me that lots of people get this and prescribed me mefenamic acid and cocodamol. My periods are now so bad I seriously consider going to A&E due to the severity of the pain - passing out, throwing up, bed ridden, almost hallucinating, feverishness and wanting to die to get away from the pain. This last period I took the mefenamic acid for 3/4 days beforehand as the pain before has got a lot worse than it used to be (can't always take it before as my periods have always been irregular). I took half the dose (so 250mg) as the full dose messes with my stomach/digestive system. When I found out my period had started I immediately took the full dose as well as 15/500 of cocodamol. This didn't help and the pain was almost as excruciating as normal within the hour so after two hours I took a second dose of both which finally worked. Generally after the painful week beforehand (where I wake most nights in pain) and the first day, I am able to manage the pain with just a half or full dose of mefenamic acid. The period before last's timing was unexpected and I was so sick I couldn't keep any pain meds down so was a writhing, throwing up, passing out mess until it subsided.

The GP mentioned endometriois but told me there isn't any point in diagnosing me properly as they can't do anything anyway. I don't really want to go back again but I'm so desperate for some help. I'm scared because I really don't feel like she takes me seriously because I'm refusing hormonal treatments (e.g the pill) and because she keeps telling me it's normal and nothing to worry about. I really feel like something is wrong to cause such intense pain. My Mum thinks I should push for a referral to a gynecologist. Any advice??

1 like, 4 replies

4 Replies

  • jayme
    jayme annakaty

    Posted

    Hi there,

    Sorry to hear about all your trouble, I have endo so I know the pain you're going through. It is real and you're not making it up. I had to push to get into the system. I am not in the uk so hospital systems may be different but I went to see my doctor about the severe pain I was having and after many trips to a&e in tears because I couldn't handle the pain anymore, my gp finally suggested it may be endo. I was told that unless I tried the pill for 3-6 months and it didn't solve things then she wouldn't be able to put through a referral as they wouldn't see me. I too, didn't want to go on the pill at all but eventually did it as it really was my only option. The pill however didn't help me and unfortunately made me bleed for longer than two weeks at a time despite missing the sugar pills in an attempt to stop my period. This often does work for people with endo though so it may be worth a shot. Once that was over I was referred to a gyn and then from there put on the waiting list for a diagnostic laparoscopy which confirmed endo and it was removed at the same. It would be worth pushing to go see a gyn because it is no fun being in pain all the time and definitely takes effect on everything else in your life. All the best with everything and I hope this helped a little.

    • annakaty
      annakaty jayme

      Posted

      Thank you for replying.

      I think when I can no longer get mefenamic acid which does help with the pain sometimes I will try to push for a referral .

  • georgiahope1412
    georgiahope1412 annakaty

    Posted

    Hey,

    I have had the exact same problems although i have been on every type of contreception to try and help it and non of them work. I had to push my doctor to refer me to a gyne and even then he said i was fine and brushed me off. It carried on so i asked my GP if he could send me for a second opinion with another gyne. im still in the process of getting a dyagnosis but that would be my advice to you if its still going on.

    hope this heled !!

    • annakaty
      annakaty georgiahope1412

      Posted

      Thank you for responding. I am still having trouble although manage the pain when I take mefenamic acid for a week before and take two 500mg tablets an hour apart on the day my period starts. I'm now on tablets to protect my stomach as the pain killers were affecting them. They are also apparently stopping making mefenamic acid so then I'll be really stuck. I keep mentioning it when I go to my GP for other things but she doesn't seem to take it seriously and I'm not assertive so I struggle to push it. I'll see how things go the next few months I guess.

      I did try the pill but I didn't get on with it as I started gaining weight which I couldn't deal with. Also going on contraception is a very short term solution as I will be wanting children in a few year and I want to deal with this before then!

      Really hope you fget a diagnosis and some form of help for this that works.

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