Fed up!

I'm 20, I've had Endo for 5 years but only got it diagnosed when I had a Laparoscopy done this October. I've had a constant battle with doctors to get help. To start off with they were adamant that my symptoms were Gastro not Gynae related no matter how much I told them otherwise. They dictated to me what was wrong with me instead of listening to what I was actually going through! So for 5 years I was diagnosed with everything from ulcers and hernias to intolerances to IBS, they even tried to tell me it was all in my head at one point, I took every peppermint oil capsule, mebeverine, omeprazole, laprazole, even laxatives! you name it I took it all in favour of the "trial by error" method.

No thank you! So finally last year I got a new doctor and in one meeting she got it! I described my symptoms and she said straight away "I think you've got endometriosis" and the wheels were set in motion, I finally knew what I had, treatment would start and I would stop being in agonising pain, stop feeling exhausted all the time, stop feeling sick and bloated and dizzy, right?

WRONG. After repeated scans and tests (never understood why they repeated them if the only way to actually see if you have Endo is through investigative surgery!) it took 9 months for me to actually get the surgery. In that 9 months. I lost my job, because I was too sick to work. I lost my house because I had no money because I couldn't work. I moved back in with my hateful hag of a mother. My hateful hag of a mother left me with nowhere to go because she couldn't take the time to understand I wasn't lazy, that yes, I am very sick, no I do not choose to be like this, who wants to spend every day writhing in pain in bed all day?! So I ended up moving in with my partner and his parents.

2 months after my operation. I'm still no better off, the doctors aren't very forthcoming with how to alleviate my symptoms apparently I have to wait 10 weeks for my post op appointment!!! how I should cope with what my life has become. I feel like my entire life has been destroyed by this illness and that people are so hesitant to help and give support. I'm sure I'm not the only person who feels like this either. How do you carry on with an illness no one understands, no one WANTS to understand, and is so invisible that people don't notice how debilitating it is! Just think your "lazy" or a "hyperchondriact" or even that it's "just period pain, it's normal.."

JUST PERIOD PAIN?! What so it's normal for me to feel like I'm being penetrated by a burning hot poker repeatedly every month is it? Or should I say near enough everyday! BULLSHIT! Being in pain is not normal! Not that level of pain and for it to be all the time, Doctors should take it a bit more seriously.

Sorry for the nonsense rant, there were just a few things I needed to get off my chest, I've been dealing with this alone for a very long time and feel like I'm finally among people who know what the hell im going through right now! if your still reading thank you for taking the time and any tips, methods, recipes, absolutely any information on how to help myself or to help others understand, especially finding a job that's understanding of my condition, would be most appreciated!!

15 Replies

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  • Aw bless you I feel your pain it's terrible isn't it, I haven't been offered any sort of help just painkillers and says I should go on the depo injection. I'm in agony at the minute and bleeding is really bad this happens to me nearly after every time I have sex it's so depressing. Does an op help at all has anything helped you X

  • yeah thats all they offer me is "pain management", sorry no but giving me painkillers isn't sorting the problem out :/. its been nearly 2 months since my op, and i can no longer have sex, it just hurts more and more everytime, after my first post-op period, i just didnt stop bleeding until i went back to my GP and they've put me on Cerazette (mini pill) to help my Mirena coil to control the bleeding. it worked it stopped the bleeding, but now i have a HUGE influx of hormones in my body and i literally feel like im ready to mentally break down, fly off the rail, crash into despair, from the slightest thing!

    Honestly the only thing that has helped me is Cannabis. even my Pain Therapist has said if i didn't consume it, my symptoms would be a damn sight worse there is a big positive correlation with cannabis and endo its definitely worth looking into, but you also have to stick to your guns and be very open minded about it because people are still very anti-cannabis. the health benefits from it are amazing though :-)

  • Hey I totally know how you feel! I'm 21 and i feel like i am in the same situation really. It's so frustrating! if you ever wanna talk feel free to message me x

  • thank you that's so kind of you :-)

    same goes to you! sometimes even just venting to someone who understands is better than keeping it all bottled up or trying to explain to people who can only sympathise. x

  • I went to the doctor in agony, was told it was my appendix and to rest.

    Next I went to a+e and was told I may have had a cyst burst.

    I saw my GP, he told me I was constipated and gave me 2 weeks of laxatives.

    I then saw another GP who said it sounded like endometriosis, he sent me for ultrasounds and pelvic xrays.

    Im waiting for a lap date, hopefully it will be soon.

    Just know that there are always people here who are willing to share and help as much as they can.

    Hope you're having a pain free day x

  • thats awful! misdiagnosis is the most frustrating part of it, especially if the doctors actually paid attention to the symptoms we describe it could be picked up a lot sooner.

    best of luck for your lap :) hopefully it will be soon its not nice waiting ages

    thank you very much, you too :-) x

  • Hi Willow, do you know if they removed any endo, or was it just diagnostic, and where was it found?

  • hi Tboag, yeah they removed 2 different types of endo from both my ovaries and behind the uterosacral ligament among other things that they found that im not too sure about as theres little to no information about them at all

  • And your still in pain, the same as before or less?

    And what 2 different types?

  • Im not 100% sure if the types are the correct terms for it, on my discharge letter it said one was superficial and the other was vesicular.

    yeah I'm still in pain, sometimes its the same and sometimes its worse, a lot worse but never less :(

  • I think both types are considered mild, but was you seen by a specialist at a BSGE centre or a general gyne,

  • vesicular is endo of the urinary tract, superficial is inbetween mild and moderate. id hate to think what severe endo feels like if this is bad enough :(

    It was done by an endo specialist

  • Endo can be mild but cause extremely pain or severe with little pain,

  • I'm really sorry it has taken you such a long time to get a diagnosis. Sad about your mum not supporting you, I can't imagine how that feels. My mum also has endo so she is my rock. Hope you get on well with your partners parents.

    If you haven't already invest in a heat pad, it is like a little version of an electric blanket. I go to bed with mine and it automatically turns off after 3 hours.

    If your partners parents house had a bath. Make use out of it. Epsom salts are meant to be good.

    In terms of drugs I haven't found one that takes away my pain (although I have never been prescribed opioids) I'm always getting codeine slung at me and it doesn't really help. Only takes the edge off.

    When I had a cyst the size of a grapefruit I was told I was constipated and full of poo. I was sent home with laxatives. And a few days later my cyst burst and I needed an emergency op.

    I have read several posts in here about the endo diet. You might want to try? I personally haven't tried it and think life is too short to give up food I love!

    Oh and I am also on the pill (Yasmin), I guess it does help because during my 7 days pill free I am in a lot more pain.

    And no need to apologise for the rant, it is good to get things off your chest. And I have found the online communities so supportive x

  • Certainly sympathise with you honey, the good thing about ranting/ asking questions on here is that we all understand.

    So many women are affected by this condition yet hardly anyone you speak to has heard of it so you have to repeat yourself over and over again!! They think that because you've had an operation that you're fixed! But there's no cure! It's really wrong that so many women are suffering for so long and that there isn't more support available.

    Sending you hugs xx

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