Had enough

Sorry guys,

This is a real downer of a post so be warned!

I've just had enough of being in pain and constantly feeling tired. I'm 36 with 4 children age range 13-6 yrs. I feel that going to my go is a waste of time as they just don't seem to listen and rather than investigate what's causing me issues I just come away with even more pills. They are trying to push the marina coil on me as apparently that will help with endo symptoms but can also make bleeding worse. I just want someone to listen to me and to say we need to investigate this properly. It's making me feel so down that I fear I'm now suffering depression through this. Just find myself crying as I feel I can't live a normal life. A nurse practioner told me that I have endo, due to my symptoms so I don't know weather to bother going back to see gp as I've been discussing my symptoms for yrs and they never listen. Not expecting any replies just needed to get off my chest xxxx

11 Replies

oldestnewest
  • Hi! I'm sorry you are suffering xx have you actually been referred to a gynecologist?

  • I am seeing a gyne, but for bladder problems. I have another appointment in December so will speak to them then if they will listen.

  • Hi - what area of the UK are you in?

  • South Wales x

  • Hi - there is a treatment protocol to be followed for suspected endo. A nurse suspects it so you need to establish whether or not your GP agrees and if not get him/her to put in writing in your medical records that you don't have endo and why. I don't think a GP would risk doing this and should follow the protocol for suspected endo which is to refer you to a gynaecologist for further investigation/treatment. Are you on any contraceptives at all as that would be the usual first treatment? A lap is best but sometimes you have to go along with that for a few months then push for a lap. These are the guidelines. I should copy them and take them to your GP .

    cks.nice.org.uk/endometrios...

    Doctors are required to listen to patients and make joint choices according to Good Medical Practice. I should have a good read of this too:

    gmc-uk.org/static/documents...

    x

  • Thank you Lindle.

  • Hi Shandy,

    No need to apologise at all! I'm so sorry you're going though such a tough time.

    Constant pain and exhaustion are too much to deal with, even in the best of times, but the lack of support and action from your Gp just adds insult to injury (I'm furious on your behalf).

    Please, please, please don't give up on pushing for a referral to a gynaecologist or endometriosis clinic. I know how discouraging and undermining disinterested Gps can be: it took me 15 years (I'm 36 too...) of being told I was 'imagining' the symptoms, etc., before I mentioned in passing that I was having trouble conceiving - this magically gave the Gp a box to tick. 1 'lap & dye' later, it turned out I had stage 4 endo.

    Don't let them try to fob you off either because you've had successful pregnancies. According to my IVF consultant, no one actually knows how endo affects fertility - as long as your tubes are clear and your ovaries are not displaced or scarred, there would be no proven reason to assume infertility.

    As far as the Mirena coil is concerned, I'd do as much research as you can before deciding. I chose to avoid it because I react very badly to progesterone, even at low doses. A lot of people find that it's great, even stopping periods altogether. Others report erratic/prolonged bleeding, increased pain and mood swings. Either way, I was advised that it takes 6 months before you really feel the benefits.

    Ridiculously (as I'm sure you already know), a laparoscopy is the only way to get a definite diagnosis. Larger endometriomas will show up on an ultrasound scan, and severe adhesions can be picked up with an MRI, but biopsies are needed to confirm.

    Once you know what's going on, there are more targeted treatments that can help: proper excision of all nodules/patches and cysts, and division of adhesions to free up your organs (and adding in adhesion-prevention gels/films during surgery) can give you huge relief. Also, if your family is complete, surgeons can be far more thorough (I've had to have reasonably conservative surgery to preserve ovarian reserve etc.). But, on this note, don't ever let doctors tell you that a hysterectomy is the only option.

    Otherwise, I've found that Amitriptyline has been useful for nerve pain (and for getting a solid night's sleep), codeine or oramoph seems to be the most effective for pain spikes. Apart from meds, working with a specialist pelvic physiotherapist has helped to 'unknot' my pelvic floor (very common for it to be too tight and constantly contracted in response to chronic pelvic pain), and a TENS machine definitely eases background, nagging discomfort.

    Sorry for such a long post & I hope I haven't sounded too bossy... I just hate hearing that you're being given such a crap deal by your doctors!

    If there is anything I can do, or if you have any questions I might be able to help with, please don't hesitate to ask me.

    Huge hug xxxxxx

  • A huge thank you eb2010. I wasn't expecting any replies. Yours has been very imformative so thank you. They have given me tranexamic acid 500mg to lighten the bleed and Mefenamic 500mg which also helps the bleeding but is also a pain relief that I can only take when I'm not in work or driving as they make me a bit drowsy. Last period I was actually taking oralmorph as I have some left over from when I had my gallbladder removed in May this yr. yes I'm done having my family and I even asked my gp for a hysterectomy in the past as I've just had enough, but was told they won't do it unless I have fibroids.

    I've always been fobbed off with my periods were normal and I was making a mountain out of a mole hill. I started my periods at the age of 11 they were so heavy and so bad i missed loads of school and was even allowed to use staff toilets in school because of the diarrhoea and vomiting that came with it. Then when I had my first child everything turned around, my periods went very light and only lasted a few days. This went on until I had my last child when they quickly went back to how they use to be. Except the pain is a lot worse and getting worse each month. I'm at my wits end.

  • I'm so pleased you found this useful :-) I was a bit worried that I'd started ranting...

    I was given tranexamic acid and mefenamic acid too, to start with. Didn't do much for the pain tbh, and the side-effects weren't great. Also, there's a very small risk of clots/thrombosis with tranexamic acid - my Gp forgot to mention it - but if you get migraines with aura (I do), it's worth bearing in mind...

    If you want stronger pain relief, do ask for a referral to a pain management clinic or pain consultant. You don't need to wait for an endo diagnosis for this. Some Gps seem to be very reluctant to move onto prescribing any opioids without external backing, and (call me cynical) the referral gives them an easy way to resolve the question.

    Your experience as a teenager sounds almost identical to mine: even started my periods at the same age! In the end, whether or not endometriosis is found, you should not have to put up with this level of pain and disruption.

    Pain from endometriosis, adhesions or cysts is horribly unpredictable, as I've found. The sooner you know what's going on, the better, and somehow it makes it easier to manage. I had a sudden flare-up just before I was diagnosed and ended up being rushed to A&E. Being pumped full of morphine, tramadol and gas & air (first time I've hallucinated!) and narrowly avoiding emergency surgery for a suspected perforated ulcer (the only explanation they could come up with) is not something to be repeated! Really, really not saying this to scare you - just to wanted to explain how much stress and pain can be avoided by getting a proper diagnosis...

    I'm so sorry you're at your wit's end - I completely understand.

    Do stay in touch xxxxxx

  • I feel for U Hunni as I have a two year old to run about after I'm same tired being in pain all the time I got my lap this year after a year of being fobbed off on tablets I ended up depressed cause of the pain and feeling like no gp gave a toss I was at my wits ends till gynae decided to do the lap based on the fact I had symptoms of endo but also found that my rectom was glued to my womb with scarred tissue and I had endo In my pouch of doglas and my womb trust me push them to send u for a laprostopy as it's the best thing I done don't give up hope xx

  • Hi,keep going back to ur GP it took over a year to get them to listen to me and finally I got to c a doc who listened to me and was very understanding ..I am now waiting for a lap to diagnose endo I've been told it is 99% endo as been on zoladex injection for 6 months and its helped with endo pain..I really hope u get the help u need ASAP as it's terrible when no one wants to listen to u and u get fobbed off. X

You may also like...