Am I the only one without any gynae support?

My doctor does not take me seriously and just says oh prob the endo getting worse when I give him any symptoms and I don't have an endo specialist or any gynae support, feel like hitting head against a brick wall and the pain and the tiredness and other symptoms seem to be getting worse. I try and deal with it best I can but on top of everything else going through gets too much, forgot about this amazing resource until today and thought I'd check in and ask for help/advice to see if anyone else is trying to deal with this on their own and if any tips? I am very interested in nutrition rather than pills and would rather do more holistically but so much conflicting advice out there has anyone got any tips on what helps them? It is such a debilitating isolating thing this ruddy endo1 sometimes feels like the old hot water bottle is the only friend who gets it! ;) although hot water bottle last week in the heat was like a blooming indoor sauna!!! ;) thanks amazing ladies in advance if anyone replies xxx

13 Replies

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  • Your GP sounds awful I would ask for a second opinion and be pushing for a referral to a consultant preferably one at a BGSE centre. There are specialist centres for endometriosis treatment. I googled nutritional information relating to endo and got loads of useful information so it's worth and explore. I love my heat pad and it goes everywhere with me. Raising my knees also helps and it relieves pressure on the abdomen. I take painkillers as this is what I have found works best for me but I have heard acupuncture is good, although not tried it myself. I really hope you get better treatment by doctors and get support to get treatment.

    Take care

    Kay xxx

  • thanks so much Kay so kind of you to respond, how you feeling? I don't even know what BGSE stands for, see shows how little anyone has explained anything to me, my surgeon was not specialist and has now retired and was useless, couldn't even understand what he was saying to hubby and I, doctor just puts everthing down to ibs, depression or endo getting worse but does not offer me any help other than anti depressants which I refuse to take, I'm a hippy chick really! Thanks I've heard that re acupuncture too I will have a look and do some more research! thank god for heat packs and this website eh hun! xx

  • Sorry It's BSGE and it is the British Society for Gynaecology Endoscopy. these are specialist gynaelogical centres where they specialise in Endo. If you look on their website it tells you where all the centres are and you have a right to be referred to one. You really need another opinion that doctor sounds bloody awful. You should be getting specialist support not fobbed off with the whole 'it's IBS' rubbish ! Good luck, let us know how you get on xxx

  • god I feel such a fool now for not knowing any of this, I had to fight for two years to get anywhere and only got taken seriously when having fertility tests and they tried to do hsg 8 times but so painful they gave up, I then had lap done at same hospital by general surgeon but no one ever suggested it might be endo and to refer me to a centre, after all that they then refused fertility treatment after year or fobbing me off, the surgeon retired and the new one said not interested in helping and gynae was not interested in doing anything, at the same time my beautiful Mum's condition was getting worse and after my lap end of 2013 she was so ill with her ovarian cancer battle and she lost her fight early last year so if honest thinking about it not really had the time or fight in me to think about what happened with the lap and been grieving trying to adjust since, she was my world. Why I also worry about endo and symptoms as so similar to her ovarian cancer and know I could be at risk! Thanks for sharin the ingo re the centres, I will definitely mention this to doctor next week, feel such a fool for not knowing any of that and letting someone do god knows what to my insides without researching, I naively went along as was not in a good place in life and trusted them. hope yo are ok hun thanks again xxx

  • Hi since your interested in non med approach there's an app my Gynea suggested to me that I found really helpful it uses a meditation technique called mindfulness . I really recommend it I don't know about helping endo but hearing a bit of your story you might benefit from it x

  • thanks so much riverchick that is so kind of you what app is it? ive tried different ones but cant find one that works at the moment xx hope you are ok?

  • Hi

    I unfortunately suffer from endo so I can feel your pain. Don't let your GP ignore you, get another opinion until you are seen by a hospital and properly diagnosed.

    Also I changed my diet, gone wheat free, gluten free and soya free. I've invested in a nutri-bullet blender and drink healthy fruit shakes - at least once a day.. and use Castrol packs for the pain. Doing this has really changed my life and now I am not in as much pain as I used to be. I don't need tablets to manage the pain, and my body feels much better since I have changed my diet.

    There are tons of endo-recipes worth researching.

    Good Luck

    Sophia.

  • thanks so much hun really appreciate you taking the time to support, I am really good with my diet but have only half done things to cut back on gluten, sugar etc but not totally embraced the whole gluten free thing as most of the things on endo diet clash with fodmap diet for ibs and quinoa and beans and pulses really bloat me out so get confused what best to do. what are the Castrol packs please? xx

  • Hi

    Castrol oil packs are when you soak a flannel in Castrol oil and then lay this on your stomach or area where you get pains, put a clean cloth over this and lay a warm hot water bottle on top for around 30 mins. Look these packs up as my explanation is not a thorough one. The Castrol oil is soaked up by your body and this in turns helps the pain and soothes area.

    x

  • ooo thanks so much x will look it up bit like what they used to do in old days with compresses

  • Ask to see another GP for a second opinion. Or write a complaint letter. If that doesn't work then get your complaint to the comissioner of the GP practice. (The people who pay the GP practice). Here is a link:

    nhs.uk/choiceintheNHS/Yourc...

    Or you could try another practice.

    This has gotten me some results at my practice. Especially in your complaint if you emphasise your family history of ovarian cancer, the practice manager will think the gp is a twat for not referring you on.

    Just because you have had endo diagnosed, doesn't mean it shouldn't be monitored. I've recently had mine removed via lap, and my gynae will be seeing me yearly as he said it's a 70% chance it will return. It's a disease, just like any other and should be monitored. It's not like a mole that's been removed, never to re appear.You wouldn't tell someone they have diabetes and then never see them again. IBS and depression are just fob offs that GPs use. They tried to tell me I had IBS when I had no bowel symptoms! (This was rubbish as I've had endo diagnosed by lap). Even if you do have bowel symptoms, this could be due to your endo growing on or near your bowels. With an already established diagnosis of endo, your gp should be referring you on. Most GPs/gynaes will push for you to try Mirena first though so that may be an option. (I'm not sure what treatment you have had previously). If contraception/Mirena isn't working then they need to look at other options.

    Defo complain, emphasise family history of ovarian cancer.Include details about how this is affecting your quality of life. EG can't exercise/sleep/go out etc. Perhaps include a copy of a pain diary. (Note the days of when you get your pain, how intense it is and what type of pain it is eg throbbing/stabbing etc. Also note any other symptoms and your periods).They may only offer to do that blood test to check for the ovarian cancer marker, so you would need to be prepared to push for an appointment to gynae. Even if you get to gynae, you may have to push to get the result you want.

    Sometimes, I really hate doctors.

    xx

  • thank you so very much for taking the time to reply and listening to me, it means so much, I have been so lost in depression and grief that I've let them get away with it as been in a fog and was in one when they told me had endo, he said he has burnt it off and gone but it is rubbish as the pain never went away after the lap and he wasn't a specialist, they wont offer me anything as looking at fertility treatment so I feel in no mans land but you're right I should at least have it explained to me properly and talk to someone about pain management/keeping an eye on me, when I told the doctor that I kept needing the toilet around time of month he just said oh prob your endo getting worse as around the POD and he left it at that like I'm only 41 and I'm just supposed to put up with it! Your support and the kindness of others on here the last couple of days has made me realise need to take this seriously and a bit scared if honest reading all the stuff on here about how bad it can get, I have been homeworker for years and need to get back ou there and working with people but I worry how I'll be able to go into a workplace when have the ruddy awful endo pain, not sure they'd appreciate me coming in with a hot water bottle shoved down my jeans which is how I spend most the time!! ;) look like im giving birth to a hot water bottle, cover and all! how are you? hope you are ok and having nice evening xx

  • Hey, it's ok! Sometimes you just need to talk..

    If they left the POD endo in that can cause serious pain from what I've read. Try not to panic with what you read:) many people turn here when they are struggling/frustrated with the system...so let's bloody hope we are the 10% of endo sufferers and the other 90% are getting on ok:)

    I totally understand with things getting on top of you and just not having the energy to fight. Especially if you've had a bereavement.

    The year or so ( I forget) before my endo my mum passed away..i flew over to arrange her funeral..I broke my nose..my flatmate moved out causing financial worries..I started a new job, had orthodontic treatment, broke my big toe..visited my bipolar stepmum to help her when she wasnt well-and continued to visit her in the mental ward during my lunchbreak at work.Helped launch a new system in the trust I'm in..working 50 hours extra a month on top of a full time job..and had a low back injury that meant I needed help standing up/getting dressed or turning over in bed for a week when it plays up.. it probably wouldn't surprise you to know that even before all that happened I used to call myself a shit magnet since there's always something going wrong.

    This week we've only had a foreign body in partners eye,my computer died and there's currently a bird stuck in the chimney wall next to my bed. See what I mean? :p I really , really just want a year where nothing happens!

    Currently i swear half my energy is spent dealing with pain and the rest fighting the docs. I still get nervous when speaking to them and go into every appointment prepared for them to try and fob me off.

    So you just take your time, and fight when you have the energy. I never go to appointments alone now, even though I'm an adult( admittedly I'm only 28)- it's just easier with someone there for moral support. I think it can be very difficult to speak up for yourself , especially if it's disagreeing with doctors.

    With work- I would say that they aren't allowed to discriminate based on an illness. And there's a lady I know who uses her hot water bottle at work. She just tells everyone that she's cold:) failing that you could try those heat pads that are meant for back injuries - you can wear them under clothes!

    In my opinion,looking after yourself nutrition wise etc will make any person feel better,illness or not. I started this journey as an ex vegan, now vegetarian person who went to the gym and did pole dancing and aerial circus art. So I guess you could say that I was fit and healthy..For me the main thing that helps me get through the day is painkillers, I managed to carry on at work for a while because I had proper painkillers and it was just a relief to have a few pain free hours/days. What I'm saying is, what works for some, may not work for others- so if you find something that works for you- you stick to it, no matter if anyone else doesn't agree with it. It can really help, so that you can have a "normal" day...which is good for the soul:) I'm a massive advocate for adequate pain relief . We shouldn't be told that this is just part of normal living and we have to accept it.

    I'm doing fine..I'm in much pain and fighting docs at the moment, which you are no stranger to! I just posted a massive update after my 2nd lap if you fancy a really long read :p

    Eat pizza. Soak in the bath. Try to go for walks. Stay in bed or go see people. Take painkillers or meditate.have a rest..ask for help...or a hug....just do whatever you need to do ,to get through this and come out the other side..mainly just be compassionate with yourself!

    Xxx

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