Really struggling this time. Sorry in advance for the essay!

It's not the first time I've been bed bound, drugged up and really low due to my endometriosis. However this time seems different. I had my last excision of the endometriosis (for the 3rd time) in November 2014 and was relatively I'm pain-free but now im worried it's made a come back and how I'm going to cope if so? The week coming up to my current period the pain was ridiculous, I didn't think it could get any worse... then the period arrived! I have been out of the house for no more than 10 hours in total over the last 7 days. I feel like I'm damaging my body taking so many tablets and now the tramadol and codeine are no longer touching it or even making me drowsy. My family, fiancé and friends are really supportive but will never fully understand the pain. They keep telling me not to let it win or interfere with my life (as I am a third year student nurse). However this time I just can't seem to snap out of this mood, where I can't see me having a normal pain-free life or doing my dream job. I am just looking for some advice, on how people in my position pick themselves back up again? It seems like I've forgotten how!

Sorry for the essay and thanks in advance for taking the time to read it.

Hol x

20 Replies

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  • Hi I'm really sorry you're struggling so much at the minute. It sounds like you have a great support network which is important. Make an appointment with your consultant or GP as you can't go on like this. Are you on any treatment at the minute? They will be able to suggeat treatments to try and help with it. I have found acupuncture helpful for sleep and mood. Rescue remedy is good too (all natural which is good with the amount of drugs which fill our bodies!)

    I'm also going through a bad patch with my endo and feeling low with it. Endo feels like a constant battle and it's bloody frustrating! I try not to think too far ahead, focusing on just getting through the next hour when things are bad.

    I hope things improve soon xx

  • Thank you for your reply Wasowski!

    Yes I am very lucky to be surrounded by so many supportive people! I am due to see my consultant in early September he did say I could arrange an earlier appointment if needed, however I don't know what he could suggest. I'm not on any treatment at the moment but I have tried everything except the zoladex/prostap injections, which I think is my next step. However I am sceptical about these due to the horror stories I have read and the possibility of it delaying my ability to conceive (plus my fiancé is really against the idea of this treatment). I will look into the rescue remedy and acupuncture. Have you found any other herbal remedies or lifestyle changes that lessen the symptoms?

    I am sorry to hear you are also going through a difficult time! I wish I could offer you some advice! I will try to take your advice on trying not to worry about the future! But being 22 and just starting my career and with my friends being excited about staff nurse jobs and I'm worried about being employed due sickness is a big issue for me right now.

    Sorry for being so negative and thank you again for your advice and time!

    Hol x

  • Hi hol. I have had the zoladex injections and didn't find they helped at all and made me very depressed. Everyone is different though and I have heard of people getting on with them. I just try to eat as healthy as possible (though slightly relax this on weekends) and try to do gentle exercises 3-4 times a week. I try not to beat myself up about this though if I can't!

    I'm currently on the coil and have recently been started on cerazette to see if this helps reduce my pain again.

    I'm a nurse and 26 and completely understand your concerns about work. My work however are amazingly supportive of it all and tell me to go home due to my stubbornness!

    Try and see your consultant asap and talk through your options. I hope you can find something that helps xx

  • Hi Wasowski, I don't do as much exercise as I should but obviously doing our job means that we are quite active. I also eat relatively healthy but do love chocolate haha. I am a member at a gym and will make a conscious effort to go more. How are you finding the coil? I hope the cerrazette is helping with the pain.  I am also glad your employees are supportive and hope that mhine our too once I find myself a staff nurse job. 

    Hol x

  • Yeah our job is very active! The coil has been helping but I'm now at that 7 month point where it is making things worse again. For some reason after a period of time my body just decides it doesn't like contraception :/ will see if the cerazette helps to calm it again hopefully it will otherwise duno what they can suggest next.

    Have you managed to get an earlier appointment with your consultant?

    Good luck with the job hunt :) xx

  • My body is exactly the same! I had 5 coils in total before I decided my body clearly didn't agree with it. Have you tried buscopan or alverine, to help with the pain while you have the coil? I hope it starts to settled again for you!

    No haven't had chance to get an appointment with my consultant yet, but Ive got two weeks annual leave now so will contact his secretary one day next week.

    Thank you!

    Hol x

  • I wish if read this before hastily replying I'm 24 and just got a newly qualified social work post and totally know those fears! Do you register with te hcpc? All they want to know is that your doing all possible steps to manage it, whic it sounds like you are.

    I'm on prostap and have been for 3 years (now with ad back Yasmin for bone health) and without ad back i was pain free and it was amazing. I'm always hot with it but a small price for being pain free (when I was allowed on it without the ad back) !! I would say do a trial month if it's offered and see what you think.

    It only affects conceiving in that your body needs time to start bac up again which can be 6month to 12monrs my consultant said, so if it get you through finishing placements (which are gruelling!) and getting your first job (if prostap is deemed appropriate for you) then is that worth it?

    For me it was... Totally worth it but everyone's different... It's your body and seeking advice and guidance from lots of sources is great but it's your decision. Hope you get some relief soon!!!

  • Hi Emma_K, thank you for your reply. I have not heard of the HCPA, is this like the NMC? I am sorry to hear you have also been struggling! Hows the Prostap and Yasmine currently? The only thing that worries me is that, there isn't much evidence (that I have found) that people have tried to or successfully conceived after using this type of injection. Have you heard otherwise? I agree that I am willing to try anything to at least get my through the next 7 months of my training. How have you got on with work and finding a balance with the pain relief?

    Hol x

  • Wow! This is exactly how I feel too! I'm also a third year student nurse, it's so frustrating being in so much pain and feeling like people don't truly understand or think I'm being dramatic and that its just a 'bad cramp' they have no idea!

    It's awful that our lives have to come to a complete stop when we're in pain and it's certainly not easy to carry on when your in agony and are expected to care for people in the same situations whilst your in just as much pain, my family too tell me not to let it take control, but it's so hard not too, we can't control when the pain comes and it's a nightmare trying to deal with it when it's here!

    I hope your mood lifts soon, it's not surprising your feeling low when your in pain, but just remember your not alone and we're all here going through similair if not the same issues!

    Take care and I hope you manage to get the pain under control soon xx

  • Hi Lse94, I am sorry to hear you are in the same situation and thank you for saying I am not alone. This site and all of your positive words have lifted my mood. Because I know you all understand that it's not 'just a bad period' that most other people seem to think. How have your placements and university been with you?  Have you required any reasonable adjustments?

    Hol x

  • Hi Hol,

    Sorry to hear that you are having such a bad time.

    I don't know whether this will help, but it did work for me when I was bed-bound. I used a ginger rub for the pain and spasms. Basically mix a 1inch bit of fresh ginger or a teaspoon of ginger powder in with some oil, any unperfumed oil or olive oil, rub it on over your abdomen, or just where it hurts most, cover with a tea towel and then a hot water bottle, or heat pack, and leave it there to let the heat soothe away the pain. Ginger is an anti-spasmodic and has anti-inflammatory properties. Hopefully it will give you some relief. You can also rub it at the lower part of your back where all the nerve endings and nerve sheaths are probably inflamed which causes even more pain.

    For longer term relief, please look at the endo diet section of this site. Diet makes an enormous difference. Try seeing a naturopath. I would never go back to conventional medicine now, they just fill you full of chemicals instead of treating the root cause.

    I hope you find some relief from the pain. Good luck.

    Maud xx

  • Hi MadMaud, thank you for the advice about the ginger! I have starred drinking ginger and honey however I'm quietly complacent with it so in going to try and drink it daily I will also try the rub. I have also been advised to try Lotus Root. I will keep you posted if it has any benefits. I have tried an Endo diet that I found online and found it too strict, however I will look at the one on this site and try to stick to it again.

    Hol x

  • Hey I'm in a similar position at the moment I'm a social worker and currently bed bound with my rations of oral morphine and wondering how I'm going to get back to work ASAP (workin make me feel normal) but in a safe wy where I'm not putting people at risk. The morhpine doesn't make me drowsy either or get rid of my pain.

    I think what we have to do is speak to our health professionals, and push for support. I'm planning a transition back to work with different pain meditation in work hours, would this be a possibility for you? Stronger outside of nursing to aid sleep/ recovery (both mental and physical) and then a dose that's safe to live on or practice nursing on? It's totally rubbish when it takes over and you feel you've lost control of your life, which is where I'm at this week.

    Hope you feel better soon!

  • Has anybody tried taking buscopan to reduce cramping at all? It is a smooth muscle relaxant.I was given it when trying to force my body to accept a mirena coil (that failed) but have taken it to help with period pain and not sure if it might have helped since

  • Ehttie, I am sorry that there coil was unsuccessful for you. It didn't agree with me either. I do take Buscopan regularly, due to the Endo causing ibs type pain and symptoms, It seems to ease the cramps. If this works for you then there is a stronger antispasmodic (alverine) that you get on prescription which you could try if buscopan stop working fit whatever reason.

    Hol x

  • Sorry I haven't replied to you all sooner, I have been mad busy with placement. I would like to thank you all for taking the time to reply. I am overwhelmed at how supportive you have all been, so thank you!

    Hol x

  • Hi Hol,

    I'm really sorry you feel so bad and I can totally sympathise with your situation.

    I have just had my third lap as well and am also worried about constantly popping pills.

    What stage is your endometriosis at? If it is severe, has your gynae suggested zoladex? It is the only thing that has helped me since I was diagnosed. I found the pill and repo completely ineffective.

    Don't feel bad for being down, it's a horrible situation to be in, especially when there doesn't seem to be an end in sight. if your mood is affected, it may help to talk to your GP? or even make an appointment with your gynaecologist and be very clear about the extent to which it is affecting your life. I find you have to be very explicit because they have a tendency to play down your symptoms, even if they know you have a chronic condition that causes such pain.

    Hope you're ok,

    Helen

  • Thank you for reply Helen!

    What painkillers do you take/find most effective. I'm thinking about going to my GP and asking for something strong than tramadol and codeine for the days I can get out of bed but also can't sleep. Even though it's ideally not what I want!

    I'm not sure what stage my endo is, he has never said. To be honest I didn't even know it was graded in stages until I came on here. I will ask him next time I see him. Yes he has offered me Zoladex, however I am a undure and my family are not very keen on the idea. Due to the lack of evidence surrounding it as it is a relatively new drug with regards to research and endo.

    I haven't made an appointment yet with my consultant, as I feel it would be a waste of time, because I don't know what I want! I don't really want more surgery, it will interfere too much with uni and I went into laryngeal spasm during my last one, so it has scared me a bit haha. And I don't know if I want to chance the Zoladex! I feel like I'm being fussy but I am just confused and wish there was an easy answer.

    Hope you are well and thank you again for reply, this site really helps, makes you realise your not alone!

    Hol x

  • Hi Hol,

    you're not being fussy at all, it's your body and you have to make the right choice for you! also, you are young so you're going to have to deal with this for a long time so it's good to ask questions :) i just completed my final year of uni which was a nightmare because of pain so i get where you're coming from.

    First off, if you are on lap number three it is weird your gynae hasn't mentioned staging at all but I'm guessing if he has mentioned zoladex its pretty advanced...

    In terms of painkillers, antiinflammatories are my best friend (ibuprofen, naproxen etc) because the pain caused by endo is down to inflammation, so codeine etc help but for me, only once I am on regular ibuprofen. I literally used to take it every 4 hours but every 6 is recommended but this makes the biggest difference. i had the same problem with codeine so I've recently started taking a drug called pregabalin which is meant to work on the nerve endings to help the pain but it'll be another few weeks before i know if it's worked.

    Lastly, re. zoladex I understand your worries. When I first heard of it I had just been diagnosed post lap and the side effects sounded so horrific i refused point blank to have it. Unfortunately this meant I went on the pill instead which did not control my symptoms and I had to have surgery again five months later. Zoladex is honestly the only thing that gas made a difference to the quality of my life, which is why I was on it for four years and am back on it now. It basically puts the endo to sleep, by not feeding it oestrogen. i take it with HRT which provides my body with enough oestrogen etc to not have side effects (low sex drive, flushes etc) but not enough to make the endo grow.

    everyone is different but i was in your situation til i was on zoladex...you can have monthly or three monthly injections, it took about 6weeks for me to see the benefits so you could always go on the monthly and if you don't see a difference after a few weeks, come off it? It means that I went from ibuprofen and codeine every day to occasionally needed ibuprofen only (maybe 3 times a month).

    Hope this is helpful :)

    Helen

  • Hi Helen,

    I think I am swaying more towards the injections, but I have just written another post regarding my concerns of being able to conceive afterwards, as I have never heard anyone doing so after the injections.. naturally anyway.

    Also do you pay for the HRT? I've read that it's 2 prescriptions every month, so I'm wondering if I should buy prescription prepayment certificates to save me a bit of money?

    Thanks again for your reply.

    Hol x

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