Lack of support

Hi ladies, I have been suspected to have endometriosis since the age of 16, im now 19 and had a diagnostic lap in July, I was under for 90 minutes as he removed a lot from my ovaries and bladder. I was in excruciating pain for weeks after my lap when passing urine so went to my GP and got painkillers, I had my post lap appointment with the gynaecologist last week and he basically told me that he has removed my endo and it won't come back, he asked how I've been since the surgery and I've been in far worse pain since he surgery and not had a pain free day. The gynaecologist then went on to discharge me even after knowing I was in a lot of pain and told me to just go to my GP because he's done his bit. He also was persistent that my pain was period pain and not endo pain, but I'm on the pill constantly so therefore only have 4 periods a year and I'm not on my period and I know that it's endo pain. It's really affecting me, I'm always in pain, me and my boyfriend haven't had sex since because of my pain and I just feel like the hospital and gynaecology department haven't supported me or tried to help me with my pain since my op. GP has prescribed codine and co drydamol, I've changed my diet and I eat a lot healthier, but I don't know what else I can do.. Any help? Thank you in advance x

4 Replies

  • Sorry to hear you're having a rough time. I can sympathise with having the feeling you're not being heard. If you have the freedom to, perhaps you could try being referred to someone else? It's a hard ladder to climb, I am now on my 3rd referral having been back to my GP each time in between (being scrutinised and frowned at all the way) if you're not satisfied and are able to then you can keep going back. I don't know how long you've been on this journey for and ) I'm not a medical professional but perhaps you just need the right pain management plan? I don't have a proper one yet but I am still waiting for things to settle since my last lap but I know I also need to take other positive steps like the ones you have with regards to diet etc.

    Don't give up! You are not alone! xx

  • You're not alone with all this. I feel the same as you, there is no support what so ever! After my op I have ttrouble passing urine and persinstant pain too but have no answers like yourself. Day to day tasks are hard and I always feel im winging but am so frustrated! I'm here to chat if needed x

  • Sorry to hear all this but I think it's a simalar story everywhere, I have been back and forth for nearly two years now and with so much pain many trips to a&e, the consultant I was seeing actually discharged me saying it could be my bowels!! Long story short, rushed back into a&e had yet another scan!! and was referred back to the same consultant, she then said clinically it is endometriosis and had to wait to have a diagnostic lap done. Well 8 weeks since I had op and I have found out I have stage 4 endo and womb,tubes etc all stuck to my bowels!!!! So I feel really let down and feel as if they don't care enough, I had to ring every week to push for my lap op and now I'm waiting to see the endo specialist as it looks like I might end up having a huge operation :(

    All I can say to you is that it's your body and you must tell your doctor at how unhappy you feel about it all and def ask to see someone else, I know it seems so unfair that we have to push them but I did and I still am, as I get so angry at the system, as living with pain all the time is no fun what so ever, so push for more answers and def ask to see someone else

    Hope you get some relief and some answers

    Also ask your doctor to refer you to a pain management clinic

  • I know how you feel hun! ! They have no compassion what so ever for years n years they palmed me off saying its probably pcos, after 5 scans only now they r picking up its probabl yendometriosis, its so frustrating and quite scarey that it takes so long to be diagnosed, hope you sort everything hun xx

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