Demanding a laparoscopy - has anyone had any luck doing this?

Hi again ladies, sorry if this is a bit long and rambly but here we go..

Last October I had a laparoscopy to remove Endo and had the Mirena Coil fitted - it was extremely successful and I had no pain or symptoms. I was so happy to get my life back and felt great until the end of March this year when the symptoms started to return. It began with the odd bit of pain and bleeding after sex to extreme pain and heavy bleeding.

Eventually in August I saw a Nurse Specialist at an Endometriosis Centre (which is meant to be one of the best) and completely broke down in tears. At the time I was taking the maximum doses of Naproxen, Paracetamol, and Tramadol for pain, I also use a Tens Unit. I explained that this pain isn't just before/during my period, it's there all day everyday and can range from mild pain to chronic within minutes. I told her that unless I take Norethisterone I will bleed constantly and heavily and that I can hardly get out of bed or even walk on most days let alone work, go food shopping, exercise, meet my friends to see a film or go for lunch etc (I know this sounds silly, but I am only 23 and should be enjoying these little things in life) I feel depressed and have no quality of life. I thought being at an Endo centre I would receive the best treatment plan or guidance but was told that as I had a laparoscopy last year they won't do one again (I didn't realise there was a quota?) and that even though I'm in chronic pain I only have mild Endo anyway so it's not that bad and was palmed off being told to stop taking Norethisterone and take Cerazette instead as it would work wonders with the Mirena (well it hasn't). The worse part was being told to 'not just sit in bed and feel sorry for myself and to get up and exercise instead.' - the fact that I told her that I can barely get out of bed and even laying down reduces me to tears, she honestly wants me to get up and start working out. She also referred me to the Pain Management Team.

Since then my pain has become progressively worse (as I said it would) and have been signed off work for weeks as I have collapsed due to the pain twice within the space of 3 weeks. The first time a colleague managed to get me to the local A&E where I was given pain relief that didn't help at all, told 'unfortunately Endo causes pain' and sent on my way. The second time I was taken off to A&E in an ambulance as I physically couldn't get off the floor, was vomiting and came over with a fever. In the 5 days I was kept in hospital I saw several Gyne Doctors, who told me that they know of Endo but aren't specialised in it, yet refused to allow me to see an Endo Specialist. Every Gyne I saw told me that the Pain Team are the best people to help me and not Gyne - but every member of the Pain Team I saw whilst in hospital told me that at most they can lessen my pain or try to show me ways to cope with it, but they can't treat or cure my pain as that's a job for Gyne. It seems that no one wants to help or take responsibility for the woman with Endo. Eventually I was discharged with a print out from an Endo website, told to look at online support groups and given a bottle of morphine to take home with me as I 'have an outpatients appointment in 3 weeks so there's no point in being in hospital.' I was also told that if I want to be seen quicker then to look at going privately (because we all have that type of money hidden under the bed).

After a few days I went to see my GP and broke down in tears as I'm so tried of being palmed off with different tablets, departments and hospitals that don't actually help me. Taking such massive quantities of pain medication is making me feel completely spaced out and yet the pain is still there. My work won't allow me back while on Morphine, they also won't allow me back until I'm fit enough to go to work for more than 2 weeks without collapsing (this makes them seem mean but they've actually been helpful, supportive and caring). In the space of 8/9 months I've gone from riding horses, going out with my friends, taking holidays and doing great at work to sitting at home, drugged up to my eyeballs but still in pain and classing getting out of bed and to the local supermarket less than half a mile down the road as an achievement. I have a few close friends that will visit or message me to see how I am, but the majority of my friends don't even bother inviting me to things anymore because I always have to cancel or leave due to the pain. I'm becoming very depressed and my confidence/self-worth is extremely low.

I'm due to see an Endo Specialist/Consultant next week and my GP has said that I should demand to have the laparoscopy. He explained that the most that the Pain Team can do is provide alternative therapies or slow realise morphine, which means I can't work and I don't feel like drugging me up to that extent is an adequate solution. He explained the risks of surgery and scar tissue/more Endo could build up, but the only way to get rid of my pain is to get rid of the Endo. He also told me that if they won't give me the surgery then we'll request a second opinion or refer me elsewhere (he really is a lovely, understanding GP)

Has anyone ever demanded a laparoscopy before and actually got it? Is there another form of treatment or anything else I can try while waiting to get surgery? I know I could be referred elsewhere, but it means going on another long waiting list to see someone that might not help either.

I'm sorry if this all sounds minor to any ladies that are going through a lot worse than me, I'm just desperate to get my life back even if it's only a small amount of it!

Thanks for reading and any advice xx

6 Replies

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  • hi, im really sorry for you.

    and you are so young.

    i'm also a n endo suffer, not getting any better with my problems as well, but i keep trying all the time.

    i have been trying to push my GP for more refferal , Endo centre, hopeopathic clinic and so on.

    i'm in pain as well, everyday pain, not during,before or after period, not.everyday pain like you.

    please keep push your GP, they have to do something about your pain,it is not fair, they got power to help.

    pleas stand up for yourself, i know it is hard, but no one can help only you.

  • Thanks Svete, it's a horrible thing to go through especially when the doctors don't seem that concerned! I hope you managed to get treatment soon too!

  • Your situation sounds awful, but I'm glad you have a supportive GP, mine has been brilliant but I really understand how it feels to be struggling so much without support. One thing came to mind straight away regarding the mirena. My endo specialist told me that the pain relieving qualities of the mirena wears off sooner than the contraceptive qualities. He advised changing it every 18 months for endo symptoms rather than the 5 years for contraception. That is longer than you have had it but it may be worth talking to the consultant about. However your problems seem much greater than that could account for, although worth asking.

    I think given your symptoms you should have no problems asking for a laparoscopy, despite the risks, your symptoms have escalated very quickly indeed so I wouldn't worry about that. It would be good to write everything down and refer to it in the appointment and I have also found that doctors are really responsive if the first thing you say after introducing yourself is, 'I really need your help'. I know it sounds daft, but it's worked for me and sets the tone for the appointment.

    You asked about a temporary solution while waiting for surgery, you are very young but I tried Prostap with a Mirena which switched off my oestrogen and worked well for six months, it puts you into a temporary and reversible menopause so not to make light of it, it's quite an unpleasant drug for some women. Some surgeons don't want you taking this on the run up to surgery as it shrinks endo lesions so makes it harder for them to remove but worth asking.

    Good luck and let us know how you get on. x

  • I never thought to ask about having my Mirena changed I might try that next too! I've looked into Prostate but I do worry that the side effects might be more than I can handle, how bad did you find having it?

    I hope that they will let me have a laparoscopy and I'll definitely let you ladies know if it is possible to demand it, it seems like women services within the NHS aren't as good as her departments.. Women shouldn't be left to suffer like this :(

    Haha I know, the exercise recommendations really are annoying! As much as I love hearing how exercise is good for the body and mind, if I could physically do it I would especially to shut the doctors up!

  • Oh and I meant to add - regarding the Nurse Specialist telling you to get out and exercise. I do wish people would shut up with this. I had another GP tell me to go swimming and do yoga and she actually got up in the consulting room and started doing yoga moves!! I thought, 'Listen love, if I could do that I wouldn't be in here begging you for pain relief!'

    You have to laugh at it really....

  • When you ask for laporoscopy, make sure its excision lap. instead of the old laser lap. Otherwise, yo will end up going through several laporoscopies, with no improvement, more pain and more scar tissue. x

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