Diagnosed via lap 2 weeks ago- GP refusing referral to pain management

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Hi all

I had my laparoscopy 2 weeks ago when they finally diagnosed me with endometriosis. It took 3 hours in surgery to remove it. My bladder was stuck to my Bowel, my ovary was stuck to my pelvis, my Fallopian tube had twisted and there was tissue that was twisted on my appendix and I had endometriosis literally everywhere..on my Bowel, bladder, ovaries, pelvic wall, both tubes, uterus. They fitted the Mirena coil which I am hating. I am still bleeding and I'm having really severe cramps that morphine won't ease. My incisions don't even hurt it's like really horrendous period pain constant. Today I went through 13 pads from bleeding. My question is how do I get referred to pain management and a nutritionist when my GP is refusing to help? I've rang 3 times since my laparoscopy. First time was 4 days after surgery I still couldn't urinate, the second was 7 days after because one incision leaked a lot of blood after a Bowel movement and then I saw her 4 days ago because she called me in. I asked her if all this was normal for the coil and in her own works 'you are doing my head in and I cannot cope with your demands and constant calling the surgery yup. Youvhsbe had major surgery you'll be in pain you have to deal with it' yes I wanted to fly over the table and punch her considering she told me for 3 years (and still is even though I've been diagnosed) that it's all psychological and there's no way I've experienced the amount of pain I'm letting on!!! 😡😡😡 what do I do like how do I get the support and get referred to pain management when she point blank refused to see me over endometriosis pain. It's not like I can change GPS because it's the only one in the area for me to go too because others won't take me because I'm too far from them or not in their postal code distance to have me as a patient. I just need some advice on what I should do. It's not like I can see another Gp in my practice because they are all so close as friends once one forms an opinion they all do I'm so stuck right now. Alls I want is to know if all this pain and bleeding from the coil is actually normal and it will settle down in time or if it's my body rejecting it as I also have a high fever and 2... how do I see a pain management specialist without a GP referral is it possible.. I live in the UK so most specialists have to have a referral for me to be seen 😭😭😭😭😭😭

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  • Posted

    Amy, if you're running a fever after surgery & your doc Isn't listening, this is very serious.

    My strong suggestion as a lay person who's had 2 post-surgical infections is that you go to an ER/accident & casualty.  If you're in the States, don't go to one of these fake miniature "ERs."  Go to a real hospital ER, level 1 trauma center if possible but for sure a real hospital ER.

    I can't answer the question about the Mirena coil.  You are in my payers.

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    • Posted

      I'm in the UK my local hospital won't do anything for me just keep saying that it's all down to the coil I have to give it time and because I had a laparoscopy on the 24th they just keep telling me the pain is from that but I keep arguing the fact that my incisions don't hurt it's my lower right side that's causing me so much pain. I'm sat here rocking back and forth typing this sobbing in absolute pain because no one will listen or help me and I'm stuck on what else I can possibly do. My primary care doctor kicked off on my a week ago saying I'm doing her head in and she can't cope with my demands (I've rang twice in 2 weeks because I'm heavily bleeding and in actual severe pain to the point I can barely walk when it happens and she just tells me it can't be that bad or its psychological the pains not as bad as I'm making it out to be so I asked for a different Drs opinion and surprise surprise doctors stick together and backed her up. Here in the UK I can't directly make an appointment with a gynaecologist either my primary care doctor has to make the request for me to be seen which she is clearly rejecting the request that I've made. So stuck right now with options unless I save and go private but I won't have the money for another 4-5 months it's expensive

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  • Posted

    Hi love so sorry to hear your still in pain. My understanding of the coil is because it's ment to stop your periods I tried it and had the same problem just doesn't agree with some people. The whole point of trying the different types of pills ect is to see which works for you. With endo the most painful pain is when your bleeding so that's why your in so much pain. The only thing that stopped mine was the injection but after been on it for 5 years i did eventually start coming on. I would get a appointment for it removing and try another method to stop your periods. Or ask for a tablet to stop the bleeding. I hope the operation works for you first time, but be aware it has come back for me, I was painfree for around 6 weeks then i was back to pain, I've had 3 operations now last one 18 month ago and now on pro strap that's a injection given to put you through the menopause. And now on waiting list for hysterectomy because I just feel like I'm a guineepig and get told try this try that and I'm not happy with been pushed around anymore 6 years been like this is not far at all I'm only 26 I've still young but I've got my family so I know I don't want anymore children so it's the right thing for me. I've tried everything and this is me now saying stop f***ing about with my body it probs doesn't know if it's coming or going and let it rest with no endo. 

    I don't think personally there is enough information out there for us with it and doctors don't seem to want to help because I feel like there p****d off because I'm always there. Let them try living with endormetrosis and see how they feel. No.one sees what where going through because it's a disability that's inside in my eyes. It's stopped me doing the things a normal 26 year old would and stopped me been able to spend time with my family as when it's bad I can't get outa bed my pains are that bad. 

    Hope this helps. Here for support if you want to chat x

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  • Posted

    Thank you so much both for your comments. I'm already on prostap injections I had my second injection a week ago almost so I'm only due one more injection. I have tried taking noriday, cerelle, cerezette, the depo shot, I had the implant when they still gave it all gave me migraines. I also tried mini pills and combined pills and even they make me sick with migraines and worsened cramps. I was told that I have vaginal e-coli yesterday but my GP won't prescribe me antibiotics until they have proof off of the hospital gynae dr who rang me with the swab results.

    I'm in the UK and my local emergency room won't do anything for me. I've been in twice in the last two weeks to the primary care out of hours service we have and both times they send me to the gynaecology department and I keep being told it's a urine infection but they send me home and when they have the results back from the lab it's always negative for infections. I'm ringing back up on Monday to make an appointment to have this removed it's ruining my life and the pains a lot worse than before I have the laparoscopy 2 weeks ago it's horrendous constant pain and bleeding and clots but they just keep refusing to remove it telling me to give it 6 months but I can't deal with it. I'm only 25 myself and these last 2 weeks have been the worst. I hate it. I've had full blown arguments with my GP over this for years and she still says it's psychological even with a diagnoses says I'm playing up on how much pain I'm in for stronger pain killers. Told me I'm doing her head in which is lovely of her!!! 😡 Just don't know what more I can do but if they refuse to remove this when I ring on Monday I'll just tell them I'll rip it out myself see if they will do it then because that's how I really feel I want this out. I was fine with just the prostap it eased things off for me but now it's a complete different story x

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  • Posted

    That's mad that they have given you pro strap well u have the coil in I had to wait until my injection 13 week gap so it was outa my system until they would give me the pro strap. I fink if anything your body is going through though too with the injection and pro strap I'm very surprised they gave you them at same time.  I'm also in the uk love. I'm from Wakefield West Yorkshire if your close by. The pro strap should stop your periods completely. I would call them and just tell them or even get a appointment down at family planing and tell them you haven't stopped bleeding and with endo the whole point of the coil was to stop your periods and now your haven't stopped bleeding it's upto you if you have it out or now not then xx

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  • Posted

    Oh my word I didn't even know that! I had no issues with the first injection at all I had it a month before my laparoscopy and it seemed to have worked great no spotting pain was easing it was great. This is torture. I'm not from from Liverpool or Chester (Wirral). I'll have s luck which ones close to be as they closed the normal one down. I didn't think it could have been that. I only had the laparoscopy done on the 24th and the surgeon didn't even say anything when his junior doctor was the one who prescribed it in the first place when I was a patient a month before I had it done. I'll have to speak to someone because this is unbareable im changing my pad constantly like an actual period and have done since the laparoscopy so that's like 2.5 weeks. Probably explains why I'm so dizzy and faint all the time too xx

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    • Posted

      I ended up emailing my consultant directly if you know there name just google it and what hospital and it will come up. Just pour your heart out and just get her told and she should reply I did this because I was fed up of the doctors and she finally sorted it out and now on waiting list for hysterectomy. Calling doesn't help but email you can just rant and put your point across. X

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    • Posted

      I didn't even think about emailing them. I've had sooooo many issues with my GP last week we have a full blown argument she had me in tears kept saying I'm doing her head in she can't cope with my demands only rang because I was in so much pain and the bleeding was that heavy and clotting I didn't feel right at all. Now I'm too scared to even ring them when I get sick or in need of medical help for anything. She just keeps Telling me it's psychological and all in my head now she has the diagnoses she's thrown at me I have a personality disorder and behavioural issues which is completely crazy I'm so laid back and down to earth shy and quiet so I don't know where she's got that all from. Probably all in her head. I'll find the email and sort that out first thing tomorrow hopefully get some answers. Just want it to settle or have this removed just not coping at all. The gynae nurse said I have to give it at least a month but the scan shown it was working as the lining is already getting thinner but it's the pain and bleeding it's so intense tramadol or oramorph won't touch the pain I've even tried just natural things like constant hot baths and water bottles but that doesn't even ease a thing 😢 Just hope they listen on this email and respond and not just ignore me. I'm awful at putting things into words xx

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  • Posted

    I felt the same I just started and then I just went on and on and kept adding more you will be fine once you start. Explain how you feel and tell them what your experiencing ect just like you are me and you will be just fine. I'm the same rubbish when I have to put things into words but I hit it on the head and it was so easy. Cud pour my heart out and say what I wanted x

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  • Posted

    Oh, Amy,  that gp of yours is a beeyotch as we say to get around censors here.  Emailing isn't a bad idea, tho best if there's someone in authority over her, as in way way over her, whose name you can show as a cc.  I don't know the UK system so I can't say who, but since she's basically a government employee, it never hurts to show your elected member of Parliament?  County government?  I don't know.

    It is best if any letter is short and unemotional, and that's hard to do in so much pain & anxiety.  But I have faith in you!  You communicate quite clearly because we've understood what's going on.

    Another route to go, and you can do both,  is to take someone else with you to see the vicious quack.  Maybe record her, with or without someone else there.  I don't know the laws there.  Here it varies from state to state.  Where I live I can record anyone I want to, without their permission if it's just audio; businesses & government must have my permission to record my voice.  So ... find out before if you can make a stealth recording.

    I don't like it when ANY doc says endo pain is in our heads, but I become irate when it's a woman.   She is ravers.

    More importantly, she's incompetent.  Why oh why oh why would they be giving you the drug and the coil if the problem were just in your head???  England throws those treatments around to treat nut cases??? Guess what:  she needs them both, STAT!  AND she's saying that your syrgery & diagnosis are a hoax, myths!  Really, what illicit drugs is she taking?

    Heaven only knows what she's doing to other patients.  Can you imagine?  "You're bonkers if you think a compound fracture needs treatment!  Go away and don't bother me!"  She's a menace with a license, very bad combo.

    We are pulling for you, and we're here for you.  Let us know.

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    • Posted

      Aww thank you for your reply. I just don't understand her for the past year I've seen her weekly not that I've made the appointment she always has. She's helped me through emotional support she's helped me through a lot of things in my life she's been the best support I've had then when I went in and kept saying how I was with pain instead of keeping it in any longer she just said painful periods nothing she can do I believed her but I went to see a different doctor. Then all the hospital admissions started and she just moaned every single time even though the hospital kept me in for 5 or more days each time she just couldn't get her head around something was wrong then her attitude just turned and I've not seen her as much the last 3 months because she doesn't listen but when she's the only doctor with an appointment that week I just take it thinking okay maybe today she will have that caring attitude towards me like she use to in the past.. heartbreaking really that the one doctor who's supported you through a lot of things and a huge emotional and physical abusive past but she can support me through a disease.. me and the psychologist she referred me too have wrote a letter of complaint each to give to the practice manager. She's discharging me with having no psychological issues but agreed I do need therapy to over come other issues which that dr isn't happy about so is pushing for personality and behaviour issues now! She's a muppet a fruit loop andnis foing through something in her life clearly. 

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