no one believes my pain and exhaustion

this is my story, i have been diagnosed with endometriosis in 2003, had 2 operations within 6 months and surgeon told me if i want to have a family i have to start now, i was in relationship. when i told him about this he forbid me to even attempt to get pregnant as he said " i was not fit enough to be a mother". so i left him. six months later my brother introduced me to a guy and we started dating, after a month he took me to hospital for my post op checkup and the doctor repeated the same thing, i don't have the time to wait, the longer i wait the less chances i have to get pregnant, so on the way home he asked me to try for a baby, well it took us nearly a year but i had my baby boy in 2010. when he was six months we tried again unfortunately i miscarried before 12 weeks, but we tried again s3 months later and same thing happened then in 2012 my endo got really bad i had another laparoscopy and had mirena coil put in but hat made things worse, i asked to be seen by my gyne doctor, and he took the coil out same day and told me to try to get pregnant and after i have my baby to come back to him for discussion and treatment plan. in 2013 i managed to get pregnant and had my baby girl in january following year. but my gp did not listen to what i was saying, what i wanted, one gp put me back on the pill which i did not want, went to another gp she got me to see family planing clinic and i told them that i don't want to have anymore children, i just want to be able to be mum to these two that i have, they put an implant in my arm which should have stopped endometriosis from spreading. after four months as i just started to look for work the pain came back with vengeance. went to gp he still refused to send me back to my gynecologist, instead he did ultrasound scan which showed dermoid cyst and enlarged ovaries so he send me to oncology, this christmas i was a wreck, i was crying all the time everyone around me was scared to even talk to me, whole family though i have cancer, just before new year i went back to oncology for the test results, no cancer but i had extensive endometriosis and my gp had to make emergency referral to endo specialist, that did not happen i was in so much pain that i could not walk and was becoming suicidal. i just did not want my children to see me like this. one weekend it was so bad my partner had to take me to A&E for psychiatric emergency help. i was given morphine and got to see emergency gynecologist. he was surprised that gp was keeping me on very low dose of oxycodone and there was no referral for consultant. they arranged everything for me, and increased the painkiller, gp was still not happy to give that to me but eventually they did. but it made me very nauseous. last month the pain was so bad the painkiller did not help and i was vomiting so bad that i started bringing up blood. when ambulance came i was barely conscious, A&E doctors was shocked that gp did not give me anti sickness meds and anti constipation because my bowels was blocked. well i changed gp but this one is even worse. couple days went to get my oxycodone and he started asking all kind of questions why when and how do i know. i have told that i have stage four endometriosis and adenomyosis he told me that it doesn't mean anything to him its just words, at that time i really wanted to just end my life and be done with it, no one believes me how bad the pain is, how exhausted i am, just brushing my hair i get tired, i cant go to park with kids, cant even be on my own at home with them as i keep falling asleep all the time, i keep injuring my self when in cooking. so my partner is now staying at home to look after me and the children and he is going bonkers. he hates seeing me like this. we have not had any intimacy for nearly a year. our relationship is nearly at breaking point but we both are still not giving up. we have two wonderful children, i just dont know how long i will last. my first appointment with endo specialist is in mid april and i am really scared that he wont believe me.

3 Replies

  • Oh my goodness! I'm so sorry you have been through all of that! GP's make my blood boil, they are the real reason why diagnosis takes so long, and to just prescribe you mad drugs like oxycodone and leave you to it is beyond me! Also "prescribing pregnancy" is also so irresponsible, you are a living demonstration that pregnancy does not help endo, nor are all endo sufferers infertile, grrrrrrr!!

    I know that your treatment so far will have left you feeling weary of doctors but an endo-specialist is the best option for sure, be honest with them and take a list with you of what you want to talk about so you stay on track through the nerves.

    I am in Surrey and the endo centre locally for me is amazing, I have been hearing good things of all the endo-specialists in the country so don't fret.

    Hope you find a way to be pain free soon, big hugs xxx

  • Hello, sorry to hear how badly you are suffering and then to be treated like that my gps is appalling, I would Defo put in a complaint about there actions and reactions against you, wait until you're had your appointment with specialist,

    I know it's hard but I think we all need to start making a stand against these crap gps, they are after all getting pain a very fare wage to treat us like thus.

    I'm sure your endo specialist will be kind and helpful, and hopefully experienced enough to treat you with the respect that you deserve,

    And I'm sure you will be well again soon to enjoy them beautiful children you have

    Keep your chin up and stay positive

    Good luck xxxx

  • I just thought I'd see how you'd gotten on as I've recently had my fair share of not being believed

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